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McMorrow Family

Updates

Welcome Baby Frances!

Posted Aug 31, 2022 by Devon McMorrow

Dear World, We have spectacular and special news to share! Devon gave birth to her beautiful baby daughter on 8-28-2022. Her name is Frances (Frankie) Scott Clima, and she was 8 pounds 2 ounces. Devon spent an additional two nights in the hospital, and the family is home now and taking many pictures and being generally adorable. So tiny! So sweet! We are over the moon, as you can imagine, so deeply grateful for the healthy and safe birth, incredibly inspired by the strength and grace Devon exhibited, moved by the love and warmth of Bret, his sons, and his family. I am so happy to finally be able to glitter into your inbox with good news! Unfortunately, this past month brought Covid into our house (after successfully managing to escape, duck, hide, and run from the virus for 2.5 years). First Coco, then Scott, then me, then DJ. All felled. It was too difficult for me to care for Scott when I couldn’t even care for myself (or stand upright), and my parents hired two wonderful aides who took turns making sure Scott was well looked after. Moving forward, we have realized that it is too much for me to care for Scott on my own. (We did have help for 8 months—a few hours a week—which ended in February.) My dad and I have been really doing everything else round the clock. For those of you who have never been a caregiver, it is the most daunting of jobs. Difficult in ways you can’t imagine. Dreadful, dreary, tiring, backbreaking, heartbreaking, and demoralizing. You are always running into red tape, being surprised by new and thoughtless bureaucracy, and dealing with medical issues that are way past your pay grade. At the end of the road, where we live, there aren’t a lot of options. The help we had during Covid was miraculous, and I honesty don’t know how I would have survived without them. The minimum through the service is 3 days a week. The cost is $40/hour. We are going to work to raise money for the $4,800/month it will cost. (We do receive $ through disability and social, but this is an expensive endeavor. Most people don’t have $57+K lying around gathering dust. And that is only for 3 days of help. I will still be doing the full load of four days and all nights.) We will be putting up some of Scott’s charming watercolor art for sale once I’m recovered fully from Covid as well as scarves and hats I crochet to raise funds. Every $40 = an hour of help. I believe that I was extra rundown from these past 32 months and that is why it’s still almost an aerobic activity to sit up. Or talk on the phone. I don’t remember ever being this sick before. Happily, we are now all testing negative, so definitely say hi when you see us out and about. And if you don’t have anywhere to be for a few minutes, let me show you some cute pictures of our granddaughter sleeping, and being awake, and having fingers and toes…. With much love, The McMorrows and The Climas

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We're still here...

Posted Aug 11, 2022 by Devon McMorrow

32 months And we are still here. That’s a good thing. We are plugging along, striving, struggling, fighting the good fight, doing our best, insert your favorite upbeat idiom here. Unfortunately, Scott is more tired lately. He is only able to stay out of bed for short stretches before exhaustion overtakes him. We are still doing our darnedest to unravel the myriad of mysterious side effects he is experiencing related to the strokes. (I don’t want to gross anyone out. So I try to keep the descriptions to a minimum. But we're on it.) He is still trying to combat the pain. The pain is relentless. It’s been something like 973 days, said the girl who wasn’t a math major. Trust me, however you tally the days, that is a long effing time to be in pain. I cannot fully fathom it. I can only bear witness to it. [As I’ve probably written, depending on which study you choose to believe, 10-20% of stroke patients “eventually develop severe pain that is called post-stroke pain, central pain, or thalamic pain (after the part of the brain typically affected).” It does feel cruel in an "insult-to-injury" type of way.] Illness robs a person of so much. Scott’s identity was entwined with his work (he loved being an engineer and took incredible pleasure from building things; he loved his ability to engage with the public, to run meetings, to think on his feet, to share solutions with his coworkers) as well as with his interactions with his beloved outdoors. He is the most honorable man I’ve ever met. Worked so hard to see other people’s points of view. Talked with folks he didn’t always agree with. Searched for common ground. As a volunteer on the fire department for 15 years, he was relentless in his desire to help others. As a dad and a husband, he is what my grandma would have called a mensch. Over our 26 years together, he has, by his example, always made me strive to be a better person. Watching his daily uphill struggle breaks my heart into tiny little pieces. Our big news: Scott has been attending physical therapy two times a week where he was able to use a bicycle built for individuals with hemiplegia (paralysis on one side). (When he’s had to use bicycles that were not specially made for his disability, I have sat on the floor at his side, and held his leg in place, and helped him rotate the pedals, which is a bit like being a human Rube Goldberg contraption.) It’s become more and more stressful/taxing to make the trek both for him and us (especially as we no longer have an aide). It was an hour each way in the car (and motion sickness isn’t his friend) and a difficult-to-navigate (partially up-hill) journey in the chair. So my folks bought him a refurbished (yet still expensive) bike for him to use in our living room. It’s a special bike outfitted for someone who is half-paralyzed, and using it is more than mildly complicated (belts, and straps, and gizmos, oh my!) but we’ve figured it out. Thanks to our mechanical genius of a neighbor who put it together (there were so many parts and pieces!) and wonderful local lads who carried the three-hundred-pound machine up the stairs. (It would not fit in the lift.) (I never know who feels comfortable being named or not, which is why I’m not. But we are very, very grateful.) Well-meaning people occasionally stop to ask me how things are going, and I always feel as if they expect a different answer from what they get. (Which can really depend on what kind of a day I’ve had when asked. But is never particularly happy.) “Why isn’t he better yet?” is a hard one to traverse. “I knew someone who recovered with just a limp,” we have heard. I’m no expert, but I do stay up late in the night reading medical studies. “Recovery time after a stroke is different for everyone—it can take weeks, months, or even years. Some people recover fully, but others have long-term or lifelong disabilities.” We’re in this last camp, which is more obvious as the time wears on. In our situation, I believe it was the magnitude of the strokes and the double-whammy of two in one day that really put us where we are. Thank you to those who do ask, though, and who don't duck away when you see me. I am invisible to so many. I am not sure if people are still interested in these updates because honestly they feel both sad and redundant. (I’ll keep writing them just in case. I hope you don’t mind.) I try to jazz things up a bit. Drizzle on some fancy adjectives. Plug in a little neon. So much of the pressures weigh on me. At the end of the day, every day is sad. Finally, I want to say that this month, lovely neighbors from down the hill dropped off bagels and lovely neighbors from up the hill dropped off a dinner. We really do appreciate being remembered, and I am so busy taking care of him that reprieves from cooking are really swell. Someone sent Scott a card, which he loved. A friend for many years told me to call her anytime. (I haven’t. But I will!) And the money we’ve received has been so incredibly helpful. Although I’m a wizard with financial paperwork at this point, everything related to medical care is more expensive than you might imagine. (Our health insurance went up 27% last year.) From his daily needs to his different appointments with his team to the transport we require for some of the events, the bills pile up fast. So thank you. You have made a huge difference in the quality of our lives. With much love, Annalisa This lovely photo of Devon and Bret was taken by the incredibly Darby Johnson. P.S. Thank you also so much to those who purchased baby gifts for Devon. Her registry is here: https://www.amazon.com/baby-reg/devon-clima-august-2022-sanrafael/28QQR8NT9SH7 The due date is fast approaching, and she and her husband Bret are extremely excited. Many of you watched Devon grow up, and now you’ll get to see her little one. We are over the moon!

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Crying Is My Cardio

Posted Jul 5, 2022 by Devon McMorrow

It’s only been 2.5+ years, but I don't remember what our life used to be like. I don't remember not having to make sure someone was able to be with Scott before leaving the house. I don't remember when I was able to meet up with a friend on a whim. I don't remember what it felt like to work three different freelance jobs—juggling retail, social media, and writing. It’s only been 31 months, but I don't remember who I used to be or who Scott used to be or what our lives used to be like. I don’t remember sleeping though the night. I don't remember not having to do a 30-point turn to get the wheelchair into the bathroom. I don’t remember not having this constant pang in my chest, or a feeling of loss that moves with me when I move. I don't have a lot of spare time (spare time? what's spare time?), but I do find myself late at night googling articles about stroke/stroke recovery, pain management for stroke patients, depression and caregiving, no impulse control after strokes, and other fun topics. I have no real news to share with this post. We are still struggling to unravel the myriad of medical issues Scott suffers with, and we are all the time dealing with doctors, tests, medical bureaucracy, and scans. But I do have a life-affirming bit of information I will tuck at the very bottom of this installment (so skip ahead if you'd like), and in between I will give you an update about Scott and his pain and about some of the stranger interactions I’ve had lately with some of the humans. Scott has been in pain every single day for 936 days (give or take). As ever, we are doing everything within our power to alleviate his pain using edibles, a variety of pharmaceuticals, and bargaining with the universe. Watching him suffer is heartbreaking, and I know I sound like a broken record, but I am never not sad. What I write here is a shadow of what we’re going through, a fraction of the daunting situation. I do my best not to horrify people. Apparently, 10-20% of stroke patients deal with post-stroke pain. I have to guess that since Scott suffered the two strokes back to back, that might have something to do with his current situation. As ever, I am trying my best, which is as good as it’s going to get. Over the past 2.5+ years, I have learned a lot about trauma and dealing with crises. While I always attempt to look for bright sides and silver linings, I am also dealing with emotional quagmires that are hard to spin. Since February, the only people physically helping Scott are me and my dad. This is because (as I know I mentioned) our aide quit and we cannot find someone who will work the limited hours we can use/afford. The closest we’ve been able to find was someone who wanted two full days a week (10 hours b/c it included travel time) at $45/hour + mileage. And that’s just not in our realm of possibilities. (We were lucky with the aide who could give us a few hours here and there.) Scott cannot be left alone. So if you see me out, it means he’s with my dad or vice versa. Going out is a very big deal for me. Even going to the grocery store is a small victory. There are many many days when I don’t leave the house. On Friday, I was out and someone I know from town saw me perusing items in a store. “What are you doing?!” the woman demanded. “Don't you have enough clothes at home? Shouldn't you be shopping in your closet?” I thought she was joking, but she wasn’t. Not that it was any of her business, but I was actually just visiting a friend of mine’s store. And looking. And I hardly ever ever get a moment to myself, so this was supposed to be a treat. I wish I could tell you I had a clever retort. But I didn’t. (Try me in thirty years. That’s what it usually takes for me to formulate a comeback.) I just stammered something about not getting out much. The day before that, I had a woman I’ve known for 20 years make eye contact and pretend not to know me. Sure, I’m scary. I get it. And I probably look like I slept in my clothes, which I might have. But unless I am actively sobbing in my car, which I call “cardio,” I’m pretty open to being approached. Unless you’re trying to buy our boat. This is a weird glitch, and I don't know if other people will have experienced it before—perhaps folks who have lived through a similar crisis or trauma situation will recognize this phenomenon. But over the past 2.5 years multiple people have tried to buy Scott’s belongings from us. I have gotten notes tucked under my windshield and left in the gate. People offering to take our boat off my hands. I’ve been chided over keeping the boat, as if I’m somehow miserly, and I’ve been told other people will get more joy out of Scott’s boat. First off, not that it is anyone’s business, but we use our boat. Obviously, Scott doesn’t and hasn’t since his strokes which is soul crushing for him. However, our daughter and her husband and our son have. Riding the boat with Scott was such a pleasure for our family. We bought the boat used about a dozen years ago, Scott made some upgrades, and it was a simple way for us to bask in the breathtaking beauty that is Tomales Bay. Second, there isn’t a "for sale" sign on the boat. Third, come on. When someone stopped me to say he hadn’t seen the boat out for a while, I assumed that he didn’t know the situation. So I gently said Scott had suffered two strokes, and he said, Oh, he’d heard that. He was just worried about the boat. Really? By all means, Sir, please don’t be. Now, I promised you some good news, and I will (pun intended) deliver. Devon, our eldest, is pregnant! Our family is ecstatic and she and her husband and his family are ecstatic. She put together a Baby Registry (which I have linked at the bottom). Do not feel obligated (never feel obligated), but I know there are some people who might want to send something her way. You might not believe this, but it has been nearly 31 months since Scott’s double-whammy of strokes decimated his abilities and permanently altered our lives forever, and I would like to thank all of you for your unwavering support and love. We would not have made it this long without you. I try to be as open and transparent as possible about our struggles without being depressing as hell, but I’m probably failing. I'm sure it’s difficult to read these posts. It’s been a real struggle, and knowing there are people around the town, country—even the world—who have our backs is a shining light on dark days. Thank you, Annalisa Baby Registry link: https://www.amazon.com/baby-reg/devon-clima-august-2022-sanrafael/28QQR8NT9SH7

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2.5 years

Posted Jun 11, 2022 by Devon McMorrow

It's been 2.5 years (today) since Scott’s two strokes, and I am giving you a warning that this isn’t going to be a happy, gosh-everything-is-coming-up-roses type of post. I wish I could do that for you. I wish with all of my heart I could say that we’ve managed to figure it all out, and that we’ve learned a lot along the way, and through hard work and perseverance… but I can’t. However, if you're willing to read along, at the very end of this piece, I will share a ray of sunshine. I’m going to use other people’s words throughout to try to explain what our life is like. “Family caregiving is more intensive, complex, and long lasting than in the past and caregivers rarely receive adequate preparation for their role. A compelling body of evidence suggests that many caregivers experience negative psychological effects.” (I know there was science involved, but the people who wrote this could have just followed me around the house.) Scott is still struggling with a myriad of health ailments. Some of the wonkiness (I know that’s not the official medical terminology) are things we have been working to solve since last fall. Other ailments are new and daunting. No day passes when I am not horror struck by what has happened to him. It doesn’t fade. We are not numb. This is really really difficult. The worst part remains trying to manage his pain. We use a patchwork of methods. He’s stoic, but it sucks. Lately, Scott has been experiencing frightening mobility issues. Obviously, since he is paralyzed on one side, mobility is a challenge regardless. But he is having more trouble with transfers from wheelchair to car, wheelchair to bed, and so on. I am extra exhausted from doing the heavy lifting, as it were. Since our very part-time aide quit two months ago, all caregiving is being done by me and my dad. I take care of all of the ADLs (activities of daily living), while my dad is able to take Scott to physical therapy, and out for lunches and drives. I’d be lost without him. “Caregiving is a job” states one of the articles I read. I don’t know that most people understand this. Or that laypeople grasp that it is a job that never ends, that there are no lunch breaks or vacations, sick days or holidays. It’s round the clock, 24/7 whatever your person needs from you whenever they need it. Meanwhile, ”individuals do not provide caregiving in isolation from the other roles and responsibilities in their lives.  Accumulating caregiving demands and the costs of long-term services and supports (LTSS) can overwhelm and undermine other dimensions of one's life.” This is such an important sentiment. I, personally, do not do any other work right now aside from caregiving. My only other roles are mother and daughter. Taking care of Scott is my life. “The psychological health of the family caregiver is negatively affected by providing care. Higher levels of stress, anxiety, depression and other mental health effects are common among family members who [provide] care…” I think that’s probably pretty obvious. It’s stressful to care for someone who is chronically ill, to constantly be messaging the healthcare team, to try to unravel what is the right method to follow. However hard it is for me, it’s much worse for Scott. However sad it is for our family, it is much sadder for him. Know that we are doing our best. Know that if I owe you a phone call or a text or an email it’s not because I don’t love you or want to talk to you. It's because my days start early and end late and I'm never not tired. Now for the happy news: Our middle kiddo, Coco, recently performed at College of Marin in “The Stories of Eva Luna” by Isabelle Allende. (Thank you to friends and family who came to the show! It meant a lot to us!) Here is a photo of my dad, DJ, and Scott outside of the theater. Coco graduated as Valedictorian and will be continuing at College of Marin this fall studying drama and art. Thank you all for being willing to follow along with us. I know it’s a drag. I’m sorry. Best, Annalisa 415-939-0536

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29 Months

Posted May 11, 2022 by Devon McMorrow

"Today, more than one in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States." I'm not special. Which is why it's strange to feel so invisible. Today marks 29 months since Scott’s horrific strokes. I wish I could say that things have gotten easier or better or less scary than when he first came home in March of 2020. But honestly, they haven’t. There has been no improvement. (So please, please don’t stop me to tell me some story about someone you know who fully recovered from a stroke, because while I’m delighted for that person, it’s not Scott.) We’re still always mired in medical drama and dreck—blood tests, scans, appointments. It’s relentless and unending. As his 24/7 caregiver, I help him with all of his ADLs (activities of daily living), as well as filling out all the forms and paperwork that were clearly drafted by sadists in some circle of Dante’s hell. I am as tired and worn out (inside and out) as you might imagine anyone in my position would be. We had an aide for several hours a week up until a month ago, but unfortunately, he had to quit. We were lucky because our aide had several jobs so that he was able to squeeze our few hours into his schedule. He left for a full-time job. Since then, we have learned that most aides charge $45/hour plus travel pay plus mileage and that they require two full 8-hour shifts a week. Obviously, that’s impossible. (We had been stretched to have 6 hours a week divided over two days.) My dad is unbelievably generous with his time, and he has been taking Scott to his physical therapy sessions twice a week. Caring for Scott is done only by the two of us. If you see me out, my dad is with Scott. If you see my dad, tell him he’s a mensch. If you do see me out, I’m guessing I look dazed. I feel dazed. The change in our lives from December 2019 is astronomical. I know there are people who have expected—who still seem to expect—us to “get over” this. Or “move on.” But we can’t. There is no moving on. Although I will always have hope in my heart, Scott is permanently disabled, and he requires round the clock care. Someone wrote me a very kind note last month that has resonated and I hope she’s okay with me quoting it here. She said:  “I think of you a lot, how hard your life is now, how disconnected so much probably seems/is, except your love for Scott, your kids and parents.” Disconnected is the perfect word. I feel unplugged. I feel like a stranger in almost every situation. Or invisible but not in a cool way, not in a super power way. I am alone and lonely. In lovely news, two local families booked a massage for me. I hadn’t had “me time” as folks like to say, in a long, long time. I’m eternally grateful. In other cool news, as I mentioned before I think, Coco is performing in a play at College of Marin starting this Friday. Coco auditioned, was cast, and is actually dancing in the play! For those of you who might remember that wee little spider in Charlotte’s Web at the Dance Palace oh so many years ago, this is a fun turn of events. Thank you to all who keep us in your thoughts and hearts. Who haven’t forgotten us. We’re in your debt. Annalisa & crew

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28 months

Posted Apr 11, 2022 by Devon McMorrow

“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” – Rosalyn Carter Today, the 11th of April, marks the 28th month since Scott’s two massive strokes. Our month has seen some remarkable highs and lows. We remain as ever—struggling with bureaucracy, attempting to unravel/investigate various of Scott’s unusual medical ailments/symptoms, combatting Scott’s constant pain, worrying about the increasing frequency of his uncontrollable tremors, and so forth. If you think it sounds stressful, you win a prize. In fact, two weeks ago, I got off the phone and started SCREAMING louder than I ever have after dealing with one of our mind-numbingly insensitive insurance companies. (Stop me on the street sometime and ask me about what they did, and I will regale you with my one-woman show. Which includes obscene hand gestures and expletives.) That night I, Scott’s 24/7 trusted caregiver, ended up in the ER. I spent eight hours there (with my bad-ass of a dad at my side) until they diagnosed me with what they think is an ulcer. (Stressed out? Who me?) A huge thank you to the local super hero volunteers who showed up at our house at 10 p.m. and stayed with me until the ambulance arrived. An equally grateful round of applause to our local EMTs who were compassionate and kind. A big hug to brave Coco who stayed home with Scott through the night while my dad tailed me to the hospital. I have been doing my best to figure out how to care for Scott, our kids, and myself, but (as most caregivers experience) it’s a difficult balance. I do a lot of reading about caregiving, and I know this isn’t something only I struggle with. There is only so much time in a day/night. When you are in a caregiving position, you are responsible for the medical treatment, medications, physical therapy, doctor appointments, daily hygiene and the rest of the ADLs (activities of daily living) for your person. Often this means you don’t have as much/any time for yourself. Which is why I probably owe some of you a text or a phone call. The way I owe myself a shower and a hair wash. Please, please don’t give up on us. Don’t stop reaching out or saying hey. We’re still here, doing our best, muddling through. Ah, but didn’t I promise you a high point? I did! Coco has been cast in a play at College of Marin. The play is based on the stories of Isabel Allende. If you are interested in attending (the run starts May 13th), drop me a text 415-939-0536 and I will get you the details. We are elated for Coco! Thank you, as always, for your continued well wishes. You don’t know how much it means to us to have you in our corner for all this time. Best, Annalisa “Caregiving often calls us to lean into love we didn’t know possible.” – Tia Walker This is one of Scott's watercolor birds.

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Trying...

Posted Mar 5, 2022 by Devon McMorrow

"Do or do not. There is no try.” —Yoda We are approaching 27 months since Scott’s two strokes and six months since his TIA. Recently, I’ve run into several neighbors who have asked me in passing how he’s doing. I really appreciate the interest. However, it’s difficult for me to give an actual/honest answer at the post office or out the car window. I’m not even sure how to respond. Polite society would have me say, “Great.” But we’re not great. This is rough. I’m also not sure who knows what’s going on and who doesn’t. Sometimes people ask about the family, and I always say as cautiously as possible, “Did you hear my husband had two strokes…?” because I have no idea how to break the bad/sad news gently. The real answer is that Scott is disabled and will most likely be disabled for the rest of his life. We are working to wrap our heads around this. I take care of his needs 24/7. I help him with all of his “activities of daily living.” I am his girl Friday. And Monday. And Thursday. And every day. Recovery is a work in progress. We’re still struggling (as we have been since November) to figure out a new and somewhat frightening medical issue that’s been plaguing him. (This has involved multiple scans, multiple specialists, various medications and a lot of finger crossing.) And it doesn’t feel as if we’re any closer to the answer. I wish I had a better update for those of you who have asked. But I don’t. Strokes as serious as the two Scott suffered leave lasting scars. I’m not sure we’ll ever actually be out of the woods. If you are (or if you have been) a caregiver, then you know what this is like. If you haven’t, as I hadn’t, then you probably have no idea. It’s grueling. Emotionally and physically. I am never not exhausted. I am never not sad or worried. I can’t remember who I was before, although I can remember who he was. My dreamboat. My man. Scott is able to go to physical therapy with his excellent aide two mornings a week. He listens to books on tape. He plays games with the family. He paints. We watch movies. He eats ice cream sandwiches. He loves root beer. We look for joy. As I know everyone is trying to in these stressful times. To this end, I wanted to share a photo of Scott with Devon on her wedding day. I hope you can see the happiness on his face. He didn't think he would make it to the wedding of one of his children. Thank you for hanging in there with us. Your support means so much. If you ever want to reach out, you can text me at 415-939-0536. I’m not always the best correspondent. But (sorry Yoda) I am trying. With love, Annalisa

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Happy Valentine's Day

Posted Feb 14, 2022 by Devon McMorrow

Happy Valentine’s Day This is a picture Scott painted. The evolution of a heart to a bird. We are 26+ months into his recovery. These past three months have been particularly brutal with all sorts of new medical mysteries to unravel resulting in multiple tests, blood draws, doctor visits, referrals, specialists, scans, and more of the same. One pro tip: If you or a loved one are ever dealing with a catastrophic illness, be sure to keep all members of your medical team informed of any new decisions or changes. Recently, Scott was prescribed an additional medication by one of his doctors. I vaguely remembered the medicine because he’d been put on it very briefly back at UCSF. I recalled that there was an increased risk of ischemic stroke with this medication, and I forwarded the information to his neurologist who immediately recommended taking him off it. It’s a constant uphill battle. If we’re not dealing with bureaucracy, we’re just trying to get Scott into an appointment. Sometimes the offices are not set up for him. (Recently, due to a malfunctioning elevator, he had to have an exam done in a conference room.) There are endless indignities. Which always makes me think of how much dignity Scott brought with him as a volunteer firefighter and EMT when other people were in need. He was and is (to me) a hero. My Valentine for the past 26 years. Since I don’t want to simply be a bummer in your inbox, I’d like to share a bit of good news from our family. Our eldest daughter, Devon, is getting married! It will be a tiny backyard ceremony (only immediate family members) due to Covid precautions. She has been with her fiancé for two years, and they are deeply and madly in love. He is an all-around great guy, and as my grandmother would say, a mensch. We couldn’t be happier to blend our two families. Thank you to those of you have stuck around for these updates, who don’t run away from us when you see us in public, who have dropped us a note or a phone call or a wave from the side of the road. Struggling with this type of illness and caretaking is draining (physically and emotionally). It’s heartening (ha, Valentine’s Day pun) to know that folks are still rooting for us. May your Valentine’s Day be filled with love. Annalisa & Crew “The way to create art is to burn and destroy ordinary concepts and to substitute them with new truths that run down from the top of the head and out of the heart.” —Charles Bukowski

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I'm trying.

Posted Jan 21, 2022 by Devon McMorrow

We’re now beginning our third year of Scott’s life post-stroke, and I’m trying. I was hopeful, I think, that at some point we’d reach a plateau where we’d find a workable routine. Where I’d know what to expect and how to deal with it. Unfortunately, that has not been my experience. Stroke recovery is unusual in every aspect. No two patients will recover the same way. Every week seems like there’s something new (and often terrifying or painful or both). Root canals. Tooth extractions. Situations too unpleasant to share in polite company. Specialists to see. Scans to book. Follow-up blood tests. New procedures. I don’t believe we have a week without a doctor’s appointment or consultation, and all of my “free” time is spent filling in bureaucratic forms. As I have been doing for 25 months. When something goes amok with Scott, his entire team is involved: neurology, cardiology, GP, endocrinology… especially when there is a change in one of his multiple medications. It’s like I need an old-fashioned party line. There is a new issue we’re dealing with which I’ve been trying to unravel for since November, and today we’re (finally!) going to see a specialist. (Some appointments take months to wrangle.) Scott is obviously my number-one priority. His health and wellbeing is all I think about. Being a family caregiver is actually *more* than a full-time job. Because when you have a full-time job, you tend to have weekends off and nights to yourself. Coffee breaks. Sick days. Vacations. Water cooler conversations. In some ways, I haven’t taken a deep breath since 12-11-19. Because you might know caregivers (or be one), I thought I’d share some information I’ve found. "...caregivers without support from other caregivers in similar situations may feel as though no one really understands their situation. This can lead to a withdrawal from social activities and relationships that they previously enjoyed. However, some caregivers may also find that they are literally facing isolation. For instance, a spouse caring for their partner may be providing care on a 24 hour basis, and feel unable to leave their care recipient. Thus, their time for personal rejuvenation is reduced to nothing, as they focus on only their care recipient – spending time away from home only for doctor visits or weekly runs to the grocery store. The lack of social interaction and stimulation from individuals other than their care recipient, especially when cognitive impairment is present, can be an undeniable trigger for loneliness.” The article continues: “One of the best ways to combat isolation and loneliness is to build some time into your caregiving routine to focus on yourself. While this may sound like a fantasy to caregivers who are already strapped for time, there are some ways to help re-connect to the people and activities that help restore your sense of connection and contentment . . .” and the full article is here: https://www.caregiver.org/news/caregiver-isolation-and-loneliness/ For me, right now, it does sound like a fantasy. I am doing my best to figure out how to take a break, but it’s ridiculously difficult in so many ways. The aide who was helping us a few hours a week has been gone for over a month. I rely exclusively on my dad for assistance. My dad is the best. This next article is mostly about caring for parents, however, I found parts helpful: “Ask the primary caregiver what you can do to help. Staying in contact with your parents by phone or email might also take some pressure off your parent or sibling. Just listening may not sound like much help, but often it is.” Full article is here: https://www.nia.nih.gov/health/how-share-caregiving-responsibilities-family-members I appreciate those of you who have reached out to me to help. And to listen! I am sorry if I have been distant. Some days I’m just too sad to really communicate. I fail a lot. But I’m trying. Annalisa & crew

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It's always something...

Posted Dec 26, 2021 by Devon McMorrow

“... if it's not one thing, it's another.” —Roseanne Roseannadanna I realize that some of you may simply be here to read about Scott and his health updates. And I have in many ways hijacked this space to write about what it means/looks like to be a longterm unpaid caregiver for a spouse. Trust me that if we have any major medical changes, I will post them here. But at the moment, we are simply continuing... working as a family to support Scott and help him, and giving him all the compassionate care that we can, which leads to an article I recently read that stated: "The economic value of family caregiving is undeniable, but being a caregiver is not costless. Given the long hours and challenging work, caregivers commonly experience a decline in their financial, physical, social and emotional health. Financial consequences include lost wages, reduced social security and retirement benefits, and out-of-pocket care expenses. The financial costs may have a lifetime impact. Caregivers often put their own needs below those of the person they are caring for and readily admit that they have put off taking care of their own health or well-being. Feelings of isolation, stress, burden, and lack of appreciation are also common among caregivers. The holidays can be a particularly stressful time for caregivers." It was that last line that made me feel a little better about being stressed. This is our third holiday season since Scott’s two massive and life-altering strokes. Make no mistake, Christmas 2021 was a far happier holiday than that first one spent in St. Mary’s hospital with the faux cheer and the heartache. But I’m taking a break out of my busy morning routine to share a snippet from the article above (because I believe it can help to be seen). I’m quite certain other longterm caregivers will know what I mean. Scott has the most difficult road. Trying to recover. Working to get better. We are his pit team, his support staff, his crew. We’re getting pretty darn good at handling crises. Even in chaos, we generally know what to do. However, being a caregiver over the holidays comes with added stresses others don’t necessarily see or comprehend. Christmas cheer doesn’t necessarily go with calling a clinic repeatedly for blood draw results. Medical woes can negate the ho ho hos. I am sharing our experiences because I have read that “during a lifetime, it is almost certain that everyone will either provide or require care (or both).” We are told to “seek better communication and connection among your family and friends, especially those who may be able to support family caregivers in the challenging work they are doing every day.” But we’re not really taught how. As I’ve mentioned before, it can be ridiculously difficult to ask for help. Especially, if you can’t actually put a finger on what you might need. What I do for Scott isn’t something anyone else could really spell me for. So I guess maybe I’m just using this as a sounding board. Or a way to say that if you know a caregiver in your family, be sure to reach out. Help any way you can. Let them now they’re not alone. Don’t forget them. Leave a message. Send a postcard. Give a hug. (Following strict Covid protocols, obviously.) We were just living normal, average, everyday lives up until December 10, 2019. And now we’re here. It’s doesn’t get any easier, actually. It just becomes a kind of surreal routine. Know that we appreciate all of you, and we are grateful for every person who has continued to follow us on this journey. And that I want to personally thank those of you I haven’t scared away. Who don’t flinch when you see me coming. Who haven’t run in the opposite direction. Looking forward to 2022. Annalisa & crew

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How to Care for a Caregiver

Posted Dec 10, 2021 by Devon McMorrow

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." —Maya Angelou Tomorrow, 12-11-21, we will have been muddling through this situation for exactly two years. What a sucky anniversary. Our big news: Scott has now been approved for permanent disability and has officially retired from The County of Marin. Experts say that Scott always will be paralyzed and that the damage to his body is permanent. (I’m posting this in response to someone who—when I patiently explained that he was paralyzed—responded with the one word, “STILL?!”) His doctors do not expect him to see any additional recovery, although we will continue to remain hopeful and he continues to attend physical therapy at multiple facilities. Based on necessity and grit, I’m getting pretty adept at this caregiving thing. I help him with everything. I know our routine, know which of Scott’s massive team of doctors (primary, neurologist, cardiologist, endocrinologist, stroke specialty neurologist, physical therapist, endodontist) to call when, know how to wrangle most of the bureaucratic paperwork, know when not to accept “no” for an answer. (That is a trick. NEVER accept “no” for an answer.) When I was recently in a bureaucratic office filling in bureaucratic forms, the bureaucrat in front of me complimented my organizational skills. I guess I look like someone who has her sh*t together. Which is a facade, of course. While we have worked out a type of routine—which can go to hell in a hand basket if the slightest thing goes wrong—we are still struggling with the dramatic shift in our lives. My whole life is focused on helping Scott. His life is focused on trying to heal. Obviously, everything is much worse for him than it is for me, and I continue to work to make sure he is living the best possible life he can: he goes on outings with our aide to fish (but not yet catch) and roll through pretty parts of San Francisco. He paints with Coco. We play family games. We watch favorite shows. But it is sad, and I am lonely. You know that feeling? That Roxy Music feeling? Loneliness when you’re in a crowded room. Loneliness is the most difficult part for me. Being left out, excluded, avoided. It remains just a really painful bruise. So I thought I’d just put this out there. I don’t have a lot of free hours, and I often don’t have the hours that I thought were going to be free. I can seem like a flake. (Trust me, I’m not. It’s just circumstances are always out of my control. Sometimes our aide can’t come. Sometimes other life matters interrupt.) But if anyone ever wanted to possibly (unless I have to cancel suddenly) meet up for a short (like 20 minutes) walk or a cup of tea or a talk on the phone, hit me up. Especially if you don’t mind if I have to bail at short notice and/or cry if we do get together because some/most days I can’t help it. My # is 415-939-0536. For the uninitiated, which was me two years ago, caregiving can be a rude awakening. A brutal shove off of whatever daisy-lined path you were walking down just a moment before. Within the first few days, hours, weeks, I received a plethora of (mostly unhelpful and often seriously insensitive) advice from strangers (at the various facilities) and occasionally from random acquaintances. “Help” like: “Ask for help.” (Gee. Thanks.) And "get someone to pick up your dry cleaning for you." But of all the articles people have sent me, this one was he best: https://www.agingcare.com/articles/be-a-true-friend-to-a-family-caregiver-167934.htm I could not get to the Christmas cards this year. But our family does wish all of you a very merry and a happy happy. With love, Annalisa & crew P.S. This is one of Scott's lovely watercolors.

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Catch 23

Posted Nov 11, 2021 by Devon McMorrow

“'That's some catch, that catch-22,' he observed. 'It's the best there is,' Doc Daneeka agreed.” —Catch 22, Joseph Heller We have been on this journey together now for 23 months. Me and Scott. Us and you. That is, roughly I believe, 700 days. Do you know what you have done every day for the last 700 days? Without bragging, I do. My routine is pretty much "The Groundhog Day" that is long-term caregiving. It’s the same as it has been every day since Scott first came home from the hospital. I help him live his life, all aspects of his life, and he needs a lot of help. Over this time, I’ve read extensively about strokes and caregivers. I’m learning from the ground up as I had zero experience with either prior to Scott’s two strokes on December 11, 2019. I wasn’t just uninformed on the subject. I was totally (if not willfully) ignorant. I was compassionate for other people, but I had no idea what being a 24/7 caregiver meant. I’m sure that some of you have done what I’m doing. Maybe longer than I’ve been doing it. Undoubtedly with more grace than I am managing. While I mostly feeling like I’m failing, I know that the one thing I can do is put a face to what it means (at least for me) to be a caregiver. There are really two aspects in my experience to caregiving. One is the emotional side. Trust me. It’s crushing. Seeing Scott struggle, seeing him in pain, is painful for me. I’d do anything I could to alleviate it. The other is the bureaucratic side, which is soul-draining. Bureaucracy has no heartbeat. No empathy. No face. No emotions. Dealing with endless phone menus which disconnect you after you've been on hold for hours and entities who randomly redefine “disabled” as they desire is boggling. You’d think after all of these months that things would get easier, but honestly, I am dealing with the same situations as I have been from the very start. I’m just more tired now and more resigned. Writing to insurance companies, filling in claims requests, negotiating hospital financial aid forms, listening to seemingly endless (and often mind-numbing) hold music. Since Scott’s recent TIA, we’ve been working with his team of doctors to read scans and make determinations. Simply getting the scans from one hospital to another takes more legwork than you might imagine. His neurology team *still* hasn’t received one of the CDs in spite of my constant calling. It would have been faster for me to walk the discs to San Francisco myself. For Scott, there is not a day when he doesn’t realize what he’s lost. Not a day when we are not working to manage his pain or make his life easier or happier in some incremental way. For me, there are no days off or nights off or weekends off. We have a few hours of help throughout the week, and I am beyond extremely grateful for the assistance. (Thanks mom and dad.) But often I am spending those times unraveling the red tape, which I should be better at by now. (We ran into our first insurance snafu back when Scott was still in the ICU on that very first night. A nurse handed me a note to call our insurance representative while Scott still had tubes in his head.) "There was only one catch and that was Catch-22, which specified that a concern for one's own safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn't, but if he was sane he had to fly them. If he flew them he was crazy and didn't have to, but if he didn't want to he was sane and had to.” The Catch-22 of chronic illness is that your loved one is sick and you are dealing with everything you have to deal with while sporting a broken heart. And even if you manage to do all the paperwork that needs doing, sign every dotted line, cross every t correctly, the victories are hollow. Your partner/patient is still suffering. I have no solution for this. (In fact, every time I turn around, I seem to hit another problem.) But I know that being able to share our experiences is helpful (for me, at least). Thanks for hanging in with us. Annalisa P.S. Scott painted these hearts.

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a PSA about a TIA (hope that it's not TMI)

Posted Oct 28, 2021 by Devon McMorrow

"Be kind whenever possible. It is always possible." —The 14th Dalai Lama We are reasonably sure that Scott experienced a TIA about a week and a half ago. For those who don’t know what that is, “a transient ischemic attack is a temporary period of symptoms similar to those of a stroke. A TIA usually lasts only a few minutes and doesn't cause permanent damage." Side note: Just because it's over quickly, doesn't mean it isn't scary as heck. "Often called a ministroke, a transient ischemic attack may be a warning. About 1 in 3 people who has a TIA will eventually have a stroke, with about half occurring within a year after the TIA.” “Someone in the United States has a stroke every 40 seconds.” What we learned is that “If you think you are having a TIA, call 911 or other emergency services right away. Early treatment can help prevent a stroke. If you think you had a TIA but your symptoms went away, you still need to call your doctor right away.” Do this for your loved ones, too. Sometimes people who have had/are having strokes or TIAs will refuse to seek medical care. Make them. For Scott, this particular episode triggered a great deal of follow-up tests, bloodwork, and scans with multiple doctors at various hospitals. (This is all pretty standard for us now.) While we are still having some of these test results reviewed, ultimately we seem to be on the same course as before. Continuing with all of his multiple medications and watching for warning signs. I’m sharing this not as TMI (too much information) but as a PSA (public service announcement). “Approximately 240,000 adults in the United States experience a TIA each year.” Nobody ever thinks it will happen to them. I know that Scott didn't. In other news, I would like to report that three different times recently, I’ve been approached by folks with the statement: “I won’t ask how things are going for you…” I guess this is meant as a gentle acknowledgement. Because, gosh, 22+ months in and things are difficult and (as far as I can tell) will always be difficult. I remain Scott’s primary caregiver (although we have help to get Scott to his doctor appointments and physical therapy sessions), and I help him with every single one of his ADLs (activities of daily living) that most people take for granted. (I know I did.) But if you see me out and about, and if you’re curious or compassionate or have a moment, you can totally ask me how things are going. If I’m having a sad day, I might cry. (This happened to me recently at the post office. Ooops.) If it’s not so bad that particular day, I might give you a graphically honest response that wouldn’t qualify as polite in Miss Manners’ guide, but that ship has sailed. I didn’t have any experience as a caregiver prior to Scott’s strokes. And I’m not sure how one is supposed to act after having their life turned upside down. I only know how I act—which has never been quite “normal.” So definitely—ask away, and I’ll do my best to respond... in kind. As always, Annalisa & crew

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Happy Halloween

Posted Oct 11, 2021 by Devon McMorrow

"Autumn leaves don't fall, they fly. They take their time and wander on this their only chance to soar." —Delia Owens Happy October. Fall is my favorite season, and I hope the glorious shift in weather is treating you well. For those of you still hanging in there for updates, first, I want to say, “Thank you.” Really. I have always branded myself an optimist, but there have been days lately when I am struggling to find the light. Knowing that there are so many people: locals, neighbors, friends, (former) coworkers, relatives… who are busy with their own lives, yet who having been pulling and hoping and praying for Scott for so long is something that gives me peace at night. You are very dear to us. I wish I could write back personally to thank everyone who has helped, but at the moment, I’m unable to do so time-wise. Know that every kind gesture has been appreciated. Know that I will do my best to return all the favors someday. It’s overwhelming in so many ways to see Scott how he is now, and to try to remember how he was before. “Sad” isn’t a big enough word to encompass my emotions. Using a phone is difficult for him. Using tech is difficult for him. So many things he/we took for granted are beyond frustrating. Every little task takes much more time than most people would imagine. Getting him dressed. Putting his shoes on. Basically I’m learning—so you’re learning via me—that stroke recovery is a long, drawn-out process with not a lot of certainties. Each case/patient is unique. Scott’s case is particularly complex since he suffered both types of strokes in a very short window of time. Most stroke recovery (apparently) happens by month three. However, some doctors say recovery could continue indefinitely. (This month, one of his team told him that his arm is lost and will never return. We are always hopeful that Scott will persevere and prove them wrong. He’s done so in the past.) Even with outside assistance to help Scott travel to some of his more distant medical appointments and to attend his adaptive P.E. classes, caring for him remains my full-time job. I have not actually slept through the night for 22 months. If you’re curious about what it means to be a full-time caregiver, there are lots of websites with information, but my personal experience is that it’s the most difficult/painful experience I’ve ever lived through. And I gave birth without pain meds. Staying upbeat is a constant effort. Today is the 22nd month since Scott’s two strokes. I spent the morning uploading photographs of his skull for his neurosurgery team to analyze before he goes in for new scans. This felt on par for Halloween, as I was taking pictures of his skull in a living room decorated with skeletons. Spooky. Please don’t assume what Scott can/cannot do based on seeing him out and about or in passing for a few minutes. I have had several people say things to me that were wildly incorrect about what our lives are actually like. I’m always more than happy to give details to those genuinely interested. I’m surprised by the overly chirpy assumptions. This is hard. This is sad. There is no solution except to keep pushing forward. Into the chill fall air. May it bring you joy. Best, Annalisa P.S. Scott painted the Halloween picture with Coco.

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No news is... no news.

Posted Sep 24, 2021 by Devon McMorrow

Dear friends, relatives, former coworkers, neighbors, and (possibly) a stranger or two—thank you for hanging in there with us. For listening. For reaching out to ask me for an update. I haven’t posted one for a bit since I don’t have any new news to share. It’s funny (in a horrible way, but I have a dark sense of humor) because enough time has apparently passed that some people have just assumed all is well. (Maybe some folks have a time limit on trauma and tragedy.) I went in for an annual doctor’s appointment recently, and the physician hadn’t seen me since last year. “How’s it going?” he asked with faux interest. “Well,” I said, “I’ve continued to be my husband’s round-the-clock caregiver since his strokes.” And he said, “Oh, are you still dealing with that?” A PHYSICIAN. So, for the record, Scott has *not* recovered. Due to the severity and location of the two massive strokes he experienced, his doctors, unfortunately, are not giving us any hope of further recovery. At first, they were pussyfooting around this fact. Now, there is less vacillating and more straight talk. (Which means, he hasn’t actually recovered much more than he had at the second hospital back in 2019/early 2020.) And, in fact, some parts of his situation have deteriorated—his tremors are often worse in spite of his three-times-a-day anti-tremor meds. This isn’t unexpected, apparently. Few patients who undergo craniectomies seem to ever be able to recover much of their lost functions. (I’ve done a lot of reading.) It’s just that we had high hopes. Or maybe it was wishful thinking. Where's a genie in a lamp when you need one? So how do you say all that in passing to someone who has just positively assumed to your face that things are better? I don’t know. I’m not great at it. (Small talk and me are distant acquaintances at best.) “How’s it going?” is usually met by a polite hesitation on my part, followed by a semi-shrug and a half helpless gesture. Like: *Do you want to know? Or do you just want to act as if you want to know?* I can play pretend if that’s what someone needs. Trust me: We haven’t given up. We will never give up. We are doing everything we can. Scott is attending adaptive p.e. classes with the help of his stalwart assistant. (I can’t physically support him in/out of the pool or on/off of the specialized machinery.) He is continuing to do his exercises at home with my help. We are up to date with all of his doctor appointments (so many doctor appointments) and blood draws and scans. I am his aide for all of his “activities of daily living” (or ADLs as the cool kids call them). Our lives are so different from what they were 21+ months ago. I cannot even fully remember what we used to be like. At first, I felt as if I had woken up into a nightmare. But now, it’s almost as if those pre-stroke days were the dream. That they never happened. That I, like a character in The Shining, have always been here, always doing this. To make reality less bitter, I am (as I mentioned) buying Scott the different treats he desires. I have learned that if you buy a coconut pie in the middle of the week, the checker will undoubtedly ask you what the occasion is? Wednesday, I like to say. I’m sorry I don’t have better news to share. I would rewrite this story for you if I could. I would give it a happy ending. Or at least one with a little less bite. With love, Annalisa & Crew

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Thank you to the Root beer Fairies!

Posted Aug 9, 2021 by Devon McMorrow

We had some not-so-stellar news recently. Over a Zoom meeting, our primary physician (after complimenting the psychedelic decor of our living room) said in the most cautious manner possible that the majority of return a stroke patient can expect occurs in the first 1-3 months. (This is why it was so important for me to work as insanely hard as I did to keep Scott at St. Mary’s Rehabilitation Hospital for six weeks, which was about five weeks and five days longer than the bureaucrats wanted him to stay.) I believe that what people mean by “return” is any improvement a patient gains following the initial trauma of the stroke. Scott—as many of you know—suffered two serious strokes (ischemic and hemorrhagic) and at the start of his journey to healing was unable to talk, sit up, feed himself… the list goes on into gory detail. He needed four assistants to help him into an upright position. His voice was unintelligible. He was in a constant state of confusion. When I look back, I realize he has made significant improvements since the awful and traumatic morning we found him on the floor, slurring and unable to stand. Unfortunately, they are not the improvements Scott is looking for. He wants his arm back. He wants his leg back. He wants his speech back the way it used to be. And his short-term memory. And his ability to be autonomous. And everything else that he has lost. Although he has improved from that first night, he has gotten significantly worse in other ways. His tremors are crazy. He is now on a max dose of anti-tremor medication that is very hit-or-miss. Helping him do the most mundane tasks while he is shaking can be terrifying. In addition, some days the pain is excruciating. Some days it is manageable. It is always present. He has not had a pain-free day since 12-10-19. The doctor said, “We don’t expect to see much improvements after the two-year mark.” We are now at the 20th month. The doctor said, “We do not ever see spontaneous recovery at this point.” That ship has sailed. Then the doctor said, “Please, do not wait for joy. Do not put anything off that you are able to do now. I cannot emphasize this enough.” I’ve been mulling that for a while. We can become weighted down by the daunting and demoralizing drain of the day-to-day. There is so much to do in caring for Scott and making sure we are meeting all of his multiple needs. I am his 24/7 caregiver (aside from 8 hours a week of help and immeasurable assistance from my incredible dad). I have not had a day/night off since 12-11-19. I can have tunnel vision as I’m buried under the paperwork of yet another multi-page form to fill out. The doctor said, “Do not put anything off.” To this end, we have been finding the joy everywhere possible. (And I promise you, I have been striving for this the whole time he’s been convalescing: through painting, music, books, craft projects, games, movies, cooking…) But we’re really reaching for it now. Scott loves root beer. We have a lot of root beer. Scott loves the vegan, gluten-free coconut cream pie from Good Earth. Maybe it’s frivolous, but guess what I buy every chance I get? Scott loves getting outdoors. This is why we are scrimping to have his expensive-but-worth-it-8-hours-a-week aide who can push him places that I simply physically cannot. The kids are also reaching for the joy, through dance classes (still mostly via Zoom), and piano lessons (ditto). DJ took an online summer course through COM. Coco is going into her senior year and expresses her interest in a career in cosmetology through a love of glitter. Devon is starting Dominican as a junior this fall. They are working to find themselves and find the joy in a house/family that is so often mired in sadness just by the nature of dealing with a chronic, long-term illness. Do not wait for joy. Honestly, it’s just good advice all around. So thank you to all of you who are there for us. You’re not just keeping us in root beer. You’re helping us (wait for it) stay afloat. Annalisa & crew # There is a really in-depth article in The Washington Post I'd recommend. (Seven people have sent it to me. So far.) The piece does not deal with our exact situation, but it does highlight the multitude of difficulties spouses (wives in this case) have in being even acknowledged as caregivers. There is also a lot to think about regarding the impossible finances of long-term disability. It’s a challenging and emotionally difficult read, but I think it’s worth the time. https://www.washingtonpost.com/business/interactive/2021/caregiver-partner-paralyzed-marriage-pandemic/

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The Monotone Monotony of Chronic Illness

Posted Jul 21, 2021 by Devon McMorrow

“Every silver lining's got a Touch of grey”—Grateful Dead We are in our 19th month post Scott’s two strokes. (I should probably stop counting, but I can’t help it.) He remains paralyzed on the left side with zero return. We are striving—as always, as ever—to manage his residual and continual pain, and to this end, we seem to have landed on a working routine based on multiple solutions. 19 months is a long time. Do you remember what you were doing on 12-11-19? I do. Vividly and horrifyingly, quite honestly. Every day since has had a bit of a dream/nightmare quality. There is: what our lives were like before and what they’re like now. It's a stark difference. The monotony of chronic illness is, in a word, monotone. Day in. Day out. We do: physical therapy, we play board games, we enjoy movies, we cook, we listen to music, we attend Zoom meetings with the doctors, we manage medications. We fill in (seemingly endless) forms for various and sundry bureaucracies. But what we had before is gone. Scott misses work. He misses play. He misses hiking all day with DJ, which is what he did the very weekend prior to his strokes. His recovery (well, lack of) is understandable due to the extreme severity of his two strokes and to the placement in his brain where they occurred. We still have hope. You can't lose hope. But we also have a relationship with reality. Happily, we are embracing the new. Most days, our family plays a few rounds of poker. We found large-print cards. (DJ has a poker face. You have been warned.) We have been lucky enough to hire a helper to come in 1-2 days a week for 4 hours. This incredibly strong man can take Scott out to the outdoors and push him places that would be impossible for me physically. Places that he loves. Scott also adores going on outings with my dad. They get bagels or meatballs (his favorite) and play a game at an outdoor cafe. Scott has also picked up the harmonica! He is taking online video lessons, and he practices every day. Since he first came home, he has done what we’re calling “color therapy” with Coco. They paint and draw together. Recently, Scott began painting birds. I think they are positively joyous. We have had two visitors so far. Visiting takes a lot out of Scott, but he really enjoyed chatting with several neighbors. Thank you endlessly for your kindness and willingness to take this journey with us. To steal (again) from the Grateful Dead, “What a long strange trip it’s been.” We're lucky you've been there for the ride. Best, Annalisa & Crew P.S. Thanks so much to those of you who have seen Scott out and taken the time to talk with him. It means a lot to him.

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The Elephant in the Room is Us

Posted May 26, 2021 by Devon McMorrow

“In the wheelchair, I’m luggage. No one listens to luggage” —Michael J. Fox We have become people who make some folks uncomfortable. (Full disclosure: I said “some” on purpose. If you’re not uncomfortable with trauma and disability, this piece isn’t for you. Go on about your business, being your bad-ass self.) But hey, for the rest of the folks who *may* fall into the category of “discomfort” when you see me in the post office or Scott out and about with my dad, we would like you to know we’re sorry you’re feeling uncomfortable. We would give a lot to not be in the position we’re in. Yet we know, all things being even, someone else will be around shortly to make you feel equally uncomfortable. We are, however, at the moment the people many other folks avert their eyes around. If we’re struggling with a wheelchair or a broken bit of sidewalk (like the one in front of the Bovine and the one across from the deli) or a difficult-to-traverse lobby, waiting room, revolving door, or ramp, people will look the other way. Invisibility in regards to disability is a brutal magic trick. Some people just don’t see Scott anymore. Not as a person, anyway. Which is heartbreaking for him. Last week he was at Toby’s in his wheelchair, and people he has known for twenty years walked past him without stopping. We get it. This is rough. Some people might not know what to say. Others are worried they’ll say the wrong thing. (Haven’t we all worried we might put a flip-flop in our mouth while trying to offer something that doesn’t sound like a platitude?) On the (ha-ha) flip side, occasionally people do try but say the totally wrong thing: Like telling Scott he’s “lucky” to be in a wheelchair because he always has a seat. (Insert a deep sigh.) If you have no experience with folks who have survived traumatic brain injury (as I deeply hope you haven’t), you might not know what to expect. In Scott’s case, his voice is a little different, his short-term memory is fried, his impulse control is iffy, he has great recall from way back when but not from necessarily ten minutes ago. He might seem totally and completely like the Scott you used to know, and he might (depending on the day, time, powers that be) not. It’s unpredictable. Like life itself. If Michael J. Fox can feel invisible, you can imagine how Scott feels. I am not an expert in any way in the world of disability. I’m only speaking from my experiences over the past 17 months as the wife of a newly disabled man and as his 24/7 caregiver for the past 14 months. So please treat Scott like you’d treat, well, Scott. (He sometimes calls himself “Scott 2.0.”) Try chitchat. (I’ve personally never been great at small talk. But I’m always striving.) You could say, “Good to see you out and about!” Just say something. (Most things. Not the “lucky to be in a wheelchair” thing.) Best, Annalisa & Crew P.S. Thank you for the cards and birthday wishes for Scott. He really appreciated them. It helped his mood so much to know people were thinking of him! This photo is from four years ago on our beautiful Tomales Bay.

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No New News

Posted Apr 14, 2021 by Devon McMorrow

Apparently, it was King James the 1st who coined the idiom “no news is good news” (“No news is better than evil news” circa 1616), and so we’re at the no new news portion of the program. We continue to persevere through blood draws and doctor meetings (via Zoom), trying out different medical treatments (some of the medications have daunting side effects, and so we’re often at a loss of a coin toss), and working on handling the uncontrollable tremors, but Scott’s status is, well, quo. We spend our days engaging in exercises for his body and mind. These include daily family tournaments of Scrabble (we’ve added some cool new rules to the game), a tradition that began at St. Mary’s Rehab over a year ago. There is, unfortunately, no change in his paralysis nor prognosis. We’re just a little past 16 months since his strokes, and I remain his 24/7 round-the-clock caregiver. He has had no additional recovery since returning home from the last SNF in March of 2020. It is, as they say, what it is. (That’s stating the obvious, I know. But what are you going to do?) Spring means that Scott can spend more time out on our deck, which is lovely. He listens to music and books on tape (or whatever it is the young folks are calling audio entertainment these days). We watch Saturday Night Live to stay up with current events. We’re planning—and planting—a garden where Scott can see the fruits of our labors, even if he can’t at the moment easily participate. He continues to paint with Coco and challenge DJ at Tetris. Scott regularly visits with my dad who comes over once or twice a day, and who often brings baked goodies. We're managing his pain with a medley of edibles and oils. Next month, Scott will turn 60. If you would like to send a card, our address is P.O. Box 404, Inverness, CA 94937. It would be cool if I could surprise him with tidings of good will as we are unable (for obvious reasons) to host any sort of celebration at this moment in time. But someday we will be able to. And we can’t wait to see you all then. Thank you for hanging in there with us on this journey. it’s daunting and difficult, and we’re doing the best we can. Truly, Annalisa & Company

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Perspective is everything.

Posted Feb 10, 2021 by Devon McMorrow

Here we are. 14 months (shy of one day) in. Our life is (in many ways) a lot like the movie Groundhog Day, that is if Groundhog Day was inexplicably sad. Like, chest-tightening, throat-closing sad. And you knew when you opened your eyes each morning, that the sad was still going to be there in spite of any/every positive intention you had. That’s the reality of what is (in our case) permanent disability. Which is why you don’t hear from me that often. I don’t want to get our sad on you. But, in the name of just missing the actual Groundhog Day, and in keeping with a theme, I will say: Each day we look for joy. Scott paints with watercolors every afternoon with Coco. They listen to her favorite music, and he has come to be a very emphatic fan of Harry Styles. We play games as a family. We watch movies, listen to music, get outside, look forward to new episodes of Saturday Night Live. Scott visits regularly with my dad, who brings him news from hither and yon. Simply put, I guess, we’re doing our best. Devon, who is a cheerleader and then some, pointed out to me that this time last year we were waiting for Scott’s second brain surgery. I was leaving the house before dawn and returning after dark. We are in a much more stable and beautiful environment. Perspective is everything. Someone once said to me, if you want to get something done, ask a busy person and not the person who is bellied up to the bar drinking gin and tonics. But between distance learning and dishes and laundry and cooking and cleaning and form-filling-in and finding the motivation to do it all again, I am often remiss in responding. So please know that if I haven’t written you back or called you up or shot you a quick text, I’m still thinking about you. We all are. And we’re grateful for all of the love and support you’ve given us during the past 14 months. Happy almost Valentine's Day, Annalisa This is a picture of Coco with Scott several years ago at a barn dance.

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New Year. Same Us.

Posted Jan 1, 2021 by Devon McMorrow

For us, (as most of you know) 2020 was mired in health tribulations due to the aftermath of Scott’s two massive strokes (in December 2019). Not often do you get to stand at a Target and choose which t-shirt is the happiest and most upbeat for your husband’s brain surgery. (It was a tough call. We went with Mickey Mouse.) We’ve learned so many different new words. I’ve become fairly fluent in medical jargon and bureaucratic vernacular. Unfortunately, in spite of all of our hope & hard work on the path towards recovery, Scott remains in the same state of being paralyzed, disabled, and often in pain. Management of his discomfort is the most common refrain. Some days, I sit at the kitchen table and just think that this is sad, sad, sad. (For all of you Edward Albee fans, Scott met Mr. Albee at a playwright’s festival once.) But then I think, okay, so maybe our lives are sad, but *we* don’t have to be. Does that make sense? Maybe the situation is dire and draining and devoid of joy in so many ways, but we can find the pleasures if we endeavor. So, to this end, the kids have been dancing (through the entire pandemic) via Zoom in their rooms. They’ve been able to take virtual classes with instructors as far away as the former Soviet Union. They’ve gotten up early, danced into the night. Their dedication and perseverance is a breathtaking sight. DJ is still playing piano remotely with his most excellent teacher. Devon is my rock. She’s so steady. I’ve been leaning on her through this since day one. I can’t imagine what it has been like for her, but I’m eternally grateful she’s been there for me. My folks are our ace in the hole. A phone call (and only a few steps) away. Then there’s you. I don’t even know some of you. And I’m humbled. The outpouring of support and “you’ve got this” and “up and at ‘em” and flag waving hand holding keep breathing drink water are you getting enough sleep... that we’ve received has been both unexpected and, quite honestly, life saving. Thank you. Thank you for thinking of us, for remembering us, for wishing good thoughts, for hanging in there in the darkest hours, for refusing to give up hope because we haven’t either. We greet 2021 with open arms, open hearts, and open minds. And with love. Annalisa & crew This is a photo of Devon & Scott way back in the day.

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11 Months. 3 Weeks.

Posted Dec 3, 2020 by Devon McMorrow

We are quickly approaching the anniversary of the horrific night (12/11/19) when Scott experienced two massive and shattering strokes. I’ve been hesitant about writing an update as the days tick closer, probably out of the simple and honest desire (however magical it might have been) that I’d have something super positive to share. But I don’t. Scott remains fully paralyzed on his left side. We continue to struggle with medical appointments, blood work, tests (and deciphering test results), medical forms, and other bureaucracy (enough to drive you bureau-crazy). And yet I do find myself counting our many blessings. Family. Friends. Strangers who have been so deeply kind I don’t even have the words. A serious team of concerned and conscientious doctors, surgeons, neurologists, therapists, physical therapists, occupational therapists, phlebotomists—what a list! When I remember Christmas Day last year in the hospital with doctors describing the next emergency procedure, I *know* we’ve come a long way. He’s home. He’s safe. He’s the best place he can be. That said, our days/nights are long. I’m his full-time, 24/7 lady, and battling his pain is a full-time endeavor. He hurts—there is no nice way to say that—and it is painful for all of us. I have learned a lot in a year. I am, apparently (who knew?) stronger than a lot of people (myself included) expected. Our immediate family is doing our honest best to find joy and moments of happiness. For the kids, dance remains key. They are able to interact via Zoom with their instructors, and they have grown by (dare I say it) leaps & bounds. With Scott, we continue to play Scrabble (his speech therapist at St. Mary’s was the first to play with him post-stroke, and he enjoys this daily ritual). Recently, we got a tiny pool table. Scott’s been instructing DJ in the rules of the game. When they laugh together, my heart grows 3 sizes. We watch movies, listen to books, listen to music, hang out outside, and (most importantly) try to maintain a positive attitude. I know it’s been a long, hard year for many folks. Thanks for sparing us a moment in your busy days. We hope that the holiday season is a positive one. Hang in there! Annalisa & crew

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Searching for Joy

Posted Nov 2, 2020 by Devon McMorrow

Some days start easy and end hard. Other days start hard and end on a high note. There is no rhyme nor reason. (And I’m already lying because no days are easy.) For instance, today, I accidentally knocked his knee on his paralyzed side against a door frame while wheeling him from one room to the next. Even the very slightest tap of pressure on his paralyzed side sends him into paroxysms of pain. And so a very minor mishap ended up with him yelling and me crying because that is the name of this portion of the game. What I meant to/wanted to/am going to write about (gosh darn it) was finding the joy in small pleasures. For instance, Devon (incredible big sister that she is) brought home pumpkins to carve, and on Halloween, our trio created magical pagan art that lit up the dark. (To find a glimmer of hope, I think you only need a spark.) *** This month brings two breathtaking milestones: a 16th birthday and a 21st. *** We are—just as everyone is—striving to find peace. To do our best. To accept what we have to: Scott is fully paralyzed on the left side, the doctors don’t have anything positive to offer (except more tests & more tests & more tests). But I digress. To those of you who have reached out, sent notes, waved in passing, smiled behind masks: thank you. Next week marks 11 months since his two strokes. We have many medical visits and meetings scheduled, but there is still no new news. I know I owe phone calls and emails, but we are busy dusk to dawn. Persevering. Driving on. “You buy the ticket," as Hunter S. Thompson says. “You take the ride.” Up and down. Whirly gig. Round and round. Him and me—side by side. Annalisa & crew

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The craziness of bureaucracy

Posted Oct 7, 2020 by Devon McMorrow

As many of you know, we journeyed to San Francisco two weeks ago via a wheelchair van for a new round of tests. It was a nearly nine-hour day, and happily all procedures went as smoothly as we could possibly have hoped for. Thank you to everyone who has reached out, followed up, called and texted since then… I know many of you are interested in the test results. However, we have been battling bureaucracy for information. (And my days are long helping him, so apologies again if I owe you a phone call...) Several of Scott’s thyroid results have been off-kilter for the past nine months. This is a concern as he had thyroid cancer a decade ago. There is some thinking that the medication for the thyroid was at least partially responsible for the a-fib that most likely caused the clotting resulting in his first stroke. The results came in 9/24. His thyroid doctor has been on vacation since then. The CT scans revealed several abnormalities in his heart/lungs. His cardiologist has changed practices. His first week at his new practice will be 10/12. We cannot get in to see him until after that. There is a worrisome situation going on with a “pseudo-aneurism” in the area of the dissection that occurred 12/11. We will be able to meet with his neurologist on 11/10 to learn when the next round of tests will take place. As you can imagine, not-knowing and waiting for information has caused a high level of stress. What we’ve learned is that each doctor/practice really only focuses on their area of expertise. This makes sense, of course. However, we end up feeling as if Scott is many different pieces. Nobody seems to be looking at the whole picture. I’m sorry for not updating everyone earlier. But basically our news is no news. In a few days, we will mark the 10th month since Scott’s strokes. It’s a sad milestone. Your support and kindness has been one of the bright spots in a dark time. Thank you. The photo was taken from the wheelchair van. It's a tiny rose garden tucked into a San Francisco neighborhood. We find beauty wherever we can. With love, Annalisa, Scott, and family

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A milestone

Posted Sep 11, 2020 by Devon McMorrow

We are nine months in. Today. It’s not a happy anniversary, but each 11th I do mark the calendar in my mind. Thank you from all of us for your interest in Scott’s recovery. We cannot tell you how much it helps to know that there are people all over the world (!) who are rooting for him. We received so many kind offers of help during the fires and notes from folks wanting updates, that here I am, writing to you all. (I'm sorry that I do not always have the time to respond individually. My days are long.) At the moment, we are out of the warning zone. We did spend a few weeks with the car packed, planning our escape route (with all of the family, dog, and cats). But (to my understanding) the immediate danger has lifted. (Whew!) Scott remains fully paralyzed (with no return) on his left side. As such, he continues to require constant, 24/7, round-the-clock care and help with nearly everything he needs to do. He is generally in pain, which we are managing with a variety of pharmaceuticals and homeopathic remedies. His mood is exactly as you would imagine it would be. We have good days and bad days. This completely abrupt life change is daunting for everyone in our family, but (of course) for him most of all. At the start of this experience (for want of a better word), we were fairly regularly assured that people recover from strokes. Everyone knows someone who had a stroke and got all better, right? But Scott’s situation was/is more serious than a solitary stroke. As he experienced two massive strokes (one of each kind) within the same 24-hour period, the damage was extensive. Trust me that we do (and do our best to) look on the bright side. He is home and he is safe. We play music, read, play games, watch movies, eat together, laugh together, do his physical therapy and exercises. He walks on the deck with a hemi-walker and two family members assisting. In two weeks, we will head to San Francisco (with the help of a wheelchair van) for a full day of testing: brain scan, thyroid scan, leg scan, blood work... It’s going to be a 10-hour day (I believe) from start to finish, but the scans should help the doctors make additional assessments. I’ll keep you posted on the results. Again, from all of us, thank you. Because Scott doesn’t like current photographs, here is one from an adventure with Devon years ago.

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Eight months (and counting)

Posted Aug 21, 2020 by Devon McMorrow

We are a little over eight months post-stroke(s). Scott remains still fully paralyzed on the left side and he is struggling a bit to find mental peace. We are working with his extensive and expert team of doctors, specialists, therapists, and friends to keep him entertained and moving forward on the long and arduous path to recovery. To this end, next week will find us taking a wheelchair van to San Francisco for a series of scans (brain, thyroid, and leg) to determine what his next procedures will be. (This is going to be a long day. We leave at 8 a.m. and return sometime in the evening!) Sadly, Scott’s pain is chronic. He has not had a day without pain since December 10. Watching him bravely persevere is both heart-wrenching and inspiring. As someone who lived limitlessly prior to his strokes—the weekend before he fell ill, he had enjoyed an arduous eight-mile hike with DJ—this new world is daunting. What we’re doing daily: Scrabble, cards, board games (all good for his brain), listening to music, listening to books on tape, physical therapy exercises (with help, he peddles on a small stationary device, assisted, he completes all of his prescribed exercises). He listens to DJ play piano. He colors with Coco. Far-away folks have reached out to ask us about the fires. At the moment, we are fine, but packed and ready. Thankfully, we have a wheelchair lift, so we can move faster than if we were hindered by the stairs. Leaving the house in general is a struggle (he tires easily), but we have taken small field trips to The Dance Palace to watch DJ shoot hoops. We find beauty and joy where we can. Thank you to all who keep us in your thoughts. We appreciate it. The McMorrows

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Stroke-Recovery Status

Posted Jul 2, 2020 by Devon McMorrow

Apologies for the radio silence. We know that everyone is going through an awful lot (and a lot of awful) right now. The world is a curious place. Since coming home from the skilled nursing facility, we have been spending time figuring out our new existence. But so many of you have written to me for an update, I thought I’d take a stab. We are approaching 7 months since his two strokes on that miserable scary day of 12/11/2019. Scott is still fully paralyzed on the left side. This has presented challenges—physically and mentally—as anyone could imagine. Due to the virus, and to the fact that Scott (as a stroke survivor) is in the at-risk category, we have been laying low. No visitors. No unnecessary trips. Happily, we are able to meet with Scott’s cardiologist, primary physician, neurologist, neurosurgeon, physical therapist, speech pathologist, thyroid doctor, nerve-pain specialist, and others via online “tele-health.” When we needed to do a blood draw, we were able to drive up to the clinic and the phlebotomist came to the car! Talk about service! We are exploring acupuncture as well as alternative medicines to deal with the chronic and considerable pain he is experiencing. Our days are busy from start to end. Scott is enjoying talking on the phone with friends and relatives, playing Scrabble with family (this was introduced at the acute rehabilitation hospital and is one of the best games for stroke patients, we have read). Although he cannot read easily, he is listening to books via audible and enjoys watching sitcoms from back in the day: The Odd Couple, Cheers, MASH. Neighbors may see him using a hemi-walker, and with one family member at his side and another behind with the wheelchair, walking on the deck. We are grateful for the beautiful weather and for the cheery waves over the fence. I am woefully behind on sending out thank you cards. But please know that we are humbled by the generosity and kindness you all have shown us. We have come a long way. We have a long way to go. Thank you for staying at our side (virtually and otherwise). Best, The McMorrows

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A birthday and other news...

Posted May 13, 2020 by Devon McMorrow

Dear Friends, Family, and Neighbors (which include friends & family), I realize that time keeps on slipping (slipping slipping) into the future, and I haven’t posted an update for a while. Several of you have checked in—phone & email & text—and I have been remiss. Mostly because our days are really long and I am often a bit over my head and by the end of the night, all I want is bed. The good news: Scott is much more active than he was at any of the facilities. We have created our own physical therapy routine! With help (and a wheelchair behind him for safety pushed by one of our three minions) he does several loops on our deck multiple times a day. We also work on weight shifting and peddling (with assistance) on a small stationary machine. Scott enjoys bird watching with DJ from our front porch and learning new calls. He even made a video for his brother of a quail call. If you recall the prior photo of his head with 66 staples, this new look may surprise you. As will (undoubtedly) his accent. When he first awoke post-stroke he had reverted to his Massachusetts’ mother tongue. (Apparently, this is something that can happen.) The link is: https://www.youtube.com/watch?v=IvXS11T0s2E&t=3s Scott plays checkers (large ones sent by his brother) every day. We engage in family Scrabble games. We watch our favorite TV shows. (WKRP in Cincinnati is our current indulgence.) Coco makes his meals and colors with him. (Coloring therapy is good for your mood and choosing the colors is positive for fine-motor skills.) Devon is a major help in assisting Scott with transferring and technology. He is using an app to learn Spanish! The less good news: Pain management is still a major issue. We’re trying all sorts of things, but Scott has been in pain for more than five months. Chronic pain wears you thin. There is no happy spin. He has difficulty sleeping. He is still fully paralyzed on the left side (arm and leg). We try to take things slow. But his lack of mobility is a major self-esteem blow. Scott’s birthday is this weekend. We’ll raincheck the party until after the virus. But hopefully in the not-too-distant future, we’ll all be able to unite for a shindig! Our family hopes that all of you are weathering this new world in as safe and sane a manner as possible. The McMorrows

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Our Heart Belongs to West Marin

Posted Apr 17, 2020 by Devon McMorrow

How does the song go? I left my heart in San Francisco? Well, although we did enjoy visiting this art heart outside of St. Mary’s, our (collective) hearts belong in West Marin. And that’s where we have been for the past month or so since we last “spoke.” So many of you have reached out (from around the whole vast world) to ask us how Scott is doing that we wanted to give a quick update. We’re sure you have a lot on your own plate(s) right now. But in case you were curious, here is our current state: Scott has been home and recuperating. Our days/nights are very busy and physically/emotionally draining. We do our best to keep each other’s spirits up (there have been games of Scrabble and M*A*S*H marathons), and we’ve heard many anecdotal stories of recoveries post-stroke. But Scott is still fully paralyzed on his left side and is in chronic pain. (We’ve tried different beds, chairs, inflatable mattresses, heating pads, slings, and so many things….) Since he has a compromised immune system, we’ve been extremely careful about keeping him safe. We do not have any outside help, and we are not inviting in visitors. He recently conducted an informative video consultation with his excellent neurologist/stroke doctor from UCSF. We have another video chat with his primary doctor coming up next week. His multiple medications are being mailed. It’s daunting but doable. As you will (hopefully) read soon, Scott recently submitted a piece to "The Point Reyes Light." He and DJ have become avid birdwatchers, and Scott used voice-to-text technology to “pen” a short and poetic piece. As all who love him know, at his core, he is a nature boy. And he will always find joy in the great outdoors. Even if that is currently our front deck. Thank you to everyone for the support, love, and (in some lovely cases) pizza. We are humbled. The McMorrows

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A MAJOR ANNOUNCEMENT

Posted Mar 13, 2020 by Devon McMorrow

We did something a little unexpected yesterday. We took Scott home. He has been living in various hospitals and facilities since December 11th. We had been working with our current facility to transfer him back to an "acute" location in the city. However, yesterday morning, the skilled nursing went to a "level-three" protocol, which meant that Scott would have no visitors for two weeks. Nobody from our family would have been able to see him. We have been with him for 12-14 hours every day, so that would have been a big blow. We hadn't even been approved by insurance to stay there past March 9th, so we had no idea what that would mean for him physically or financially. Scott told the director that I had power of attorney. That didn't make a difference. We looked at each other. Scott said to the director, "I want to leave right now with my wife." That is how we left. With all the paperwork and all the insurance headaches and all the backs and forths we've had to deal with over the past three months, leaving was ridiculously easy. We got Scott into the car and drove home. A very strong friend and neighbor (thanks, Tim!) helped us get Scott up our stairs and into the house. Our bathroom is currently under construction. We had thought Scott would be in rehab for at least another two to three weeks. We are going to make do. We might need help. If you want to help, let us know. At this point, we don't have any idea what we need. We're flying by the seat of our pajama bottoms. But we are home. Thank you to everyone who is taking this unexpected ride with us. Best, The McMorrows

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A message from Scott

Posted Mar 9, 2020 by Devon McMorrow

Scott has asked me to share a post-surgery picture with everyone. This is a snapshot of his skull at UCSF following his brain surgery. To Scott, the scar (in progress) represents how far he’s come since December 11th. It represents the many facilities we’ve stayed in: Marin General, UCSF, St. Mary’s, Smith Ranch, UCSF (again), Smith Ranch (again). It represents four ambulance rides, three surgeries, a cardioversion, countless scans, needles, doctors' appointments, blood draws, consultations. Trace the route with your fingertip. This is the winding path of a road we never expected to have to travel. Throughout these past three months, Scott has exhibited a level of bravery that is both breathtaking and inspiring. He has faced pain and loss and fear of the unknown. At the beginning, we were (quite honestly) in free fall. Everything happened so fast. Doctors were making snap, life/death decisions. Now, we are in the recovery mode. Witnessing his determination and concentration as he attempts to re-learn to walk, as he maneuvers down the hall in a wheelchair, as he works to keep track of his medications, is an awe to see. The man has been through dark days. And yet he puts a smile on his battered face and asks what’s next on the agenda. How does he get home? Trace the scar with your fingertip. Home is where his heart is. Scott wants you to know how grateful he is for your support. Thank you.

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Through the Surgery!

Posted Mar 1, 2020 by Devon McMorrow

Scott went in for his Cranioplasty on Friday. Although there was a bumpy start—hours of delays—all went smoothly in the OR. He was in recovery for several hours before being moved to a bed on the sixth floor. The past two days have been all about pain control and ordering from the menu. (He couldn't eat for 36 hours.) His view of the San Francisco blue sky is quite breathtaking. We still do not know where he will be transferred to next. (We're waiting for physical therapy assessments and the rest of the bureaucracy.) More updates as we have them. But please do know that Scott is delighted to have his head in one piece again. He is cracking jokes about having a screw loose (his skull plate was attached with tiny screws). And he is generally in very good spirits. Thank you to all of you who have been following along so compassionately. We are still at the beginning of a long adventure into recovery and rehab. But this was a major milestone. The McMorrows

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Checking In

Posted Feb 25, 2020 by Devon McMorrow

This Friday, 2/28, Scott will be going in to have the missing portion of his skull replaced. This has been a long time coming—his bone flap was removed on 12/11. We are (nervously) anticipating the big day and hope that all of you will keep him in your thoughts. (For those of you who are curious, as Scott was, his skull has been residing on ice in some freezer at UCSF.) We do not know how many days he will be at UCSF recuperating or where he will be moving to next. (Potentially, back to "acute" rehab in the city. Possibly, back to the skilled nursing facility where he is currently residing. Perhaps, first one and then the other.) The kids and dog have been visiting often, cheering him up with their joie de vivre and stories of dance, piano, and jiu jitsu. (The dog has mostly been licking him.) This is a picture of Scott & DJ playing checkers. They are super-sized checkers—a gift from Scott's older brother. Easier to hold onto and manipulate on the board. We will share news as soon as we can. Thanks, as always, for hanging in there with us. Scott loves knowing that you are rooting for his recovery! The McMorrows

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The "New" Normal

Posted Feb 17, 2020 by Devon McMorrow

One of the most difficult parts of our journey, quite honestly, is the sensation that we’re not going anywhere. Here we are, day 68 (?) and a lot of what we do feels as if we’re simply waiting for Scott to get better. Healing. It’s a long time coming. We’ve heard that his recovery could take up to 1.5 or 2 years. Those numbers are hard for us to fathom. But Scott remains as focused and driven in rehab as he has been in every part of his (prior) life. He has therapy sessions (physical, occupational, and speech) every day of the week—sometimes multiple times. (Whew!) It’s rigorous and challenging and he puts his entire self into improving. He asks his therapists for homework and for exercises and activities to do on his own to strengthen his muscles and his mind. He is not walking on his own yet. He still requires nurses for assistance with most tasks. But we are championing every victory (regardless of the size). The kids visit regularly. When they do, Scott likes to show off his prowess with the darts. He knows the names of most of the people on staff and many of the patients. He checks in on the different events/activities and has his meals in the dining room. He wears festive and colorful pajama pants that make him the most fashionable man on campus and brighten the somewhat depressing environment. We are making this strange life as normal as we can. Although, obviously, it is the least normal of anything any of us has ever been through. Thank you for going through it with us.

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Where we are and where we’ll be…

Posted Feb 13, 2020 by Devon McMorrow

What we believe right now is that Scott will have surgery at UCSF on 2/28. We are waiting for the team to tell us which date he’ll be moved from Marin to San Francisco. We do not know how long he’ll have to stay in the hospital for this visit. His operation has a high rate of complications and so while we are looking forward to the progress, we’re also (understandably) concerned. Several experts have said he may then return to “acute” rehab and possibly to additional skilled nursing after that. Currently, he is working very hard at his speech, occupational, and physical rehabilitation. You would all be proud of him. His speech therapist gives him "homework," and he diligently muscles his way through. Although he doesn’t have much sensation in his left side, the therapists are trying their best to “jump start” his brain to recognize his weaker limbs. It’s difficult to believe he hasn’t been home for more than two months. However, we do as much as we can to bring his old life to him. The kids bring games. DJ played piano for Scott and additional enthusiastic audience members. Our dog has visited two times (to everyone's delight). Yesterday, Scott and DJ shot a round of darts together. Scott hit a bullseye and the activities director challenged the other residents to see who could get as close a shot as Scott. (A competitive streak isn’t something he’s lost.) Every day presents is its own unique challenge. Everything takes longer than we think it will. There are so many moving parts to keep track of. But we have a mantra: “We’ll work this out.” So far, it’s, well, worked. Thank you for hanging in with us. We appreciate all of the generosity and kindnesses we’ve been shown. Most likely, we owe some of you phone calls and emails. Please bear with us. We’re truly doing our best.

McMorrow Family
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First Steps...

Posted Feb 8, 2020 by Devon McMorrow

Scott is progressing at our new facility. Using a Hemi Walker, and with a caring & attentive staff member assisting, he was able to walk 20 paces down the rehab hallway. He does not have feeling/function in his left side, however, he is learning how to work around his limitations (think MacGyver). There are many things that Scott has lost. His sense of humor is not one of them. Even after nearly two months being shuffled through various institutions, he charms the staff, gets to know the other patients by name, and participates in as many activities as possible. His next operation is currently scheduled for 2/28—and we’d really love all of you to be sending your very best thoughts for him at that time! Most likely, he will be in the hospital at UCSF for about week. (I believe his healing will determine the length of the stay.) The neurology team has informed me he may then return to the fabulous acute rehab facility where we were for half of December and all of January. Much depends on his own abilities combined with insurance approval. Although I wish he were ready for visitors, he simply is not. He has bursts of energy followed by a lot of healing (also known as “napping”), and he is concerned about his damaged skull and slurred voice. But I wanted to share a note his previous speech therapist had given him, because it so sums up the spirit that Scott has maintained through this entire prolonged ordeal. Thank you again for hanging in with us.

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Day 55

Posted Feb 4, 2020 by Devon McMorrow

I wanted to stop and send out a thank you to all of you for helping at this super scary time. You have gone above and beyond (some of you to help a stranger) and you should know that simply being here to keep track of Scott’s progress and offer words/thoughts of support is immensely appreciated. (He can feel the love.) Many of you know about Scott—maybe a little. Maybe a lot. But in case you only are privy to a facet, I thought I’d introduce you to the whole man you have given a hand to. When I met Scott, he was an engineer who had decided to volunteer in a war-torn country to help bring water to internally displaced persons. Prior to becoming an engineer, Scott put himself through college by working three jobs and joining the ROTC and learning to be an army combat medic. When we first were married, he took time off of engineering to receive an MFA in playwriting. His plays have been produced internationally. (He was able to see one performed in Italian!) He once won a $1000 award in a short-play contest. (He donated the prize money to a local women’s shelter.) For fifteen years, Scott served on our local volunteer fire department (eight as an EMT). During this time, he helped put out fires in homes and businesses, assisted in the setting up of numerous helicopter landing sites, and went out at all times of day/night to aid his fellow volunteers as they lifted people who had fallen, transported the sick, and even rescue the stranded. He brought compassion to the worried and dignity to the dead. Throughout this ordeal, I’ve done my best at each of our locations to help the various health care workers to see him as a person and not only as a patient. In doing so, I’ve repeated his story over and over. With each retelling, I’ve fallen in love with him more every day. I think: my husband did that. He helped those people. He showed up. He brought three people back to life using CPR. He’s a super hero. And I’m lucky to know him. And we’re lucky to know you. So thank you. Scott will be going back in for more surgery at the end of this month. I do not know where we’ll be after that. I believe additional acute and skilled nursing once more. We’re in day 55. But they’re not all dark. This photo is from our newest location. He’s throwing magnetic darts and he’s just bet a fellow resident lunch over who will hit the bullseye.

McMorrow Family
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Man and Dog

Posted Feb 2, 2020 by Devon McMorrow

On Friday, Scott was transported from the rehabilitation hospital in San Francisco to a skilled nursing facility in Marin. We are not sure how long he will be staying at this location. He is being assessed to figure out his physical, occupational, and speech therapy needs. At the moment, he is still not ready for visitors. Scott has a very good grasp on language (as many of you saw in the letter he dictated for the newspaper). Unfortunately, reading is one of the challenges he faces due to his vision impairment. He is still paralyzed on the left side and has almost no feeling in his left foot/leg/arm, but there is hope that he will regain a connection with this side. Time will tell. He is younger by far than most of the residents at his current location. Regardless of how nice the environment may (or may not) be, the days are long and bleak. Although this endeavor has been seriously depressing in every sense, he does have moments of humor. We take what we can get. The financial burden of the situation is astounding. The numbers on the bills are so large that I have often just barked laughter. Look at that number with all the zeroes! The first three hours at Marin General were billed at $56,000. Each scan was billed at $10,000. (Luckily, we do have insurance. We’ll see what everything distills to in the end. So far, he has been in a hospital or facility for 53 days. And counting.) On Saturday, we were able to bring our dog for him to see. This was their first reunion since 12/11. It was joyous. Tails wagged. Faces were licked. Thanks to everyone who has reached out to help. We appreciate the love. —The McMorrows

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Closer to Home

Posted Jan 29, 2020 by Devon McMorrow

Scott has been at the excellent St. Mary's Rehabilitation Center now for nearly six weeks. We are hoping to move to a Skilled Nursing Facility closer to home this Friday. (It will probably still be an hour each way, but that will be a big difference from the daily commuting over the GGB.) We do not know how long he will have to stay there. (It could be as long as three months.) As everyone who knows Scott can imagine, he is extremely motivated in his recovery. All he wants is to get better and return to his family and doggy. To this end, he puts 100% into every therapy session—speech, occupational, and physical. On Sundays (rest days) he does exercises on his own. Although he faces serious long-term losses, he continues to surpass the doctors' expectations. It's really awesome how he doesn't accept "no" or "can't" or "won't." His heart has remained in the normal rhythm since the cardioversion and he has had more stamina since then. Tomorrow he meets with his neurology team to discuss when his skull will be reattached, which is something he is actively looking forward to. He is aware that people are sending good wishes to him and this brings him a lot of joy and comfort. This situation has been an emotional rollercoaster, but knowing that he has friends in his corner, rooting for him, is priceless. Thank you from all of us.

McMorrow Family
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Scott's Progress

Posted Jan 21, 2020 by Devon McMorrow

Ever the over-achiever, Scott suffered both types of stroke on December 11: an ischemic stroke followed by a hemorrhagic stroke. He was in surgery for hours to remove the clot and then required a second emergency surgery called a craniectomy which removed a portion of his skull in order to reduce the swelling to his brain. He then spent several days in the ICU. He was transported to a rehabilitation hospital a week later, where he has been since. At first, the three hours of intensive therapy were very difficult for him, but he has steadily progressed in his recovery. His stroke affected his left side, as well as his speech, his vision, and his fine motor skills. He was diagnosed with having a dangerously irregular heartbeat, which the doctors felt was slowing his progress. Several weeks ago, he underwent a procedure to shock his heart back into sinus rhythm. To date, this has been successful and he has been less exhausted. We are not sure when he will be transported to the next level of rehab. He is not ready for visitors at this time, but he does love knowing that people are thinking about him and rooting for him. We were given worst-case scenarios. He has already surpassed everyone's expectations. Thank you to all who have reached out. Your support is invaluable.

McMorrow Family
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