Posted 01/14/2019 by Kathy Snell
Happy New Year friends!
As we prepare for the Celebration of Life for our beloved Johanna, we are gathering photos from as many areas of her life as possible to show during the service. If you have a picture of Johanna that you would like to share, please submit it and we will include as many as we can. Send scanned photos to: firstname.lastname@example.org and put in the subject line "pictures for Johanna's video".
And as a reminder, here are the details:
Celebration of Life for Johanna Mitchell
Sunday, February 3rd, 2pm
The Shedd Institute
868 High Street, Eugene 97401
Bring a single flower for use in the service
Correction of Day - SUNDAY February 3rd
Posted 12/29/2018 by Kathy Snell
Correct day is Sunday, not Saturday.
Celebration of her Life planned
Posted 12/29/2018 by Kathy Snell
The Celebration of Life for Johanna Mitchell will be held Saturday, February 3rd at 2pm at the John G. Shedd Institute in Eugene. Address: 868 High St, Eugene, OR 97401
Light refreshments and sharing will follow the event. Please bring a single flower that will used during the service.
A million bits of starlight
Posted 12/23/2018 by Kathy Snell
Last night, under the Cancer full moon, at 9:49 pm, our beloved Johanna passed. She has been saying for months that she wanted to live, filled with love and light for as long as she could and then, at the end, burst into a million pieces of starlight. And that's where I will look for her - in the heavens, the newest celestial body. I will miss her sweet smile, her amazing cooking, her beautiful art, her adoration of my children and so much more. Your messages of love and inspiration meant more to her than you will know and lifted her up during this very challenging time. There will be a celebration of her life on February 3rd in Eugene. I'll post additional details when we have them.
Your cards are my tallis
Posted 12/15/2018 by Johanna Mitchell
Johanna is approaching the end of her amazing life. She has entered hospice and is no longer eating and drinking. Last night our family moved her bed to the dining room - the place in the home that has been the center of so many delicious meals, card games, long talks and cups of tea. Her granddaughters wove all of your cards onto strands of lights and golden string to create a tallis of love she will wear into the next place - just like in her dream.
We have an amazing circle of family supporting her, Peterson and each other. She is comfortable and also working hard to slip the ties of this body. We are doing ritual, listening to music and sharing stories. Every day we read with her the many cards and emails you send and they are a tremendous comfort to her.
As much as I know many of you would love to visit and hug on her, we are past that point. Your cards and emails are the best way to send her your messages of love. We promise we will share them with her. Light a candle and remember the many ways our beloved Johanna touched your life. She is a shining example of generosity and openhearted kindness. What would honor her life the most is to be kind - to your neighbor, the waitstaff, the receptionist, the grocery clerk, and to each other.
We believe that how we live is how we die. Johanna has lived with wide open courage, and she is dying with the same ferocity. She will leave behind a tremendous legacy of intentional community. It's hard to imagine a world without her; and at the same time, we will carry her with us always.
In love and gratitude,
CANCELLED Cookie Baking on Wed.
Posted 12/03/2018 by Kathy Snell
Hi all, Quita here. Johanna asked me to cancel cookie baking for Wednesday. a number of other important appointments have been scheduled this week so we are postponing this event. Look for more updates soon. On the other hand, Saturday's cookie fest yielded many lovely delicious treats that will get delivered soon. Thanks to all who participated!
It's cookie time!
Posted 11/28/2018 by Kathy Snell
Quita here for Johanna about the upcoming baking sessions at Johanna's house. As many of you know, holiday baking is a huge tradition for Johanna. She loves nothing more than to make a million beautiful cookies and deliver them all over Eugene. We are paring it way down but just couldn't let this special tradition go by the wayside. Even if you aren't signed up, you are welcome to come and pitch in. Please bring an apron. And yes, we will be listening to Christmas music so no judgement!
Sat. Dec 1 10:30-2:30
Wed. Dec 5 9:30-12:30
Text if you have questions: 541-543-5798
A feathered cape of your making
Posted 11/18/2018 by Johanna Mitchell
Dearest Friends and Family,
Last night I had a fantastic dream ! All the cards you have sent to me with your glorious words and beautiful images were woven into a feathered cape full of colors that wrapped around me. I felt so warm knowing the Angel of Death is to not to be feared but to be embraced. I will be able to fly.
Holding the vision of your smiling faces and caring eyes.
Posted 11/13/2018 by Johanna Mitchell
To my beloved friends and family,
Here is a photo of my YMCA family. They threw a beautiful party for me last week. I love each of them very much. We had cake and shared memories and I asked each person what was going on in their lives because I miss hearing all of the news every day. Although I am no longer able to join my wonderful aqua aerobics classes, we are still such a caring group.
I spent my entire career hearing your stories and helping you make sense of the cosmic patterns that affected each of you. Thank you for putting your trust in me all of these years.
A friend reminded me that you might like to know how I am doing. So here goes...
Body - I still have ALS and this disease is amazing in her capacity to keep going. So my fatigue is increasing as well as my difficulty with speech. Can you imagine that I don't want to want to eat very much?? I'm so grateful for legalized CBDs in Oregon as they help me with sleep and pain.
Mind - Announcement! I am creating a handout for you for Future Signs: Astrology of 2019. That's right there WILL be another presentation at Tsunami Books January 13th, 2019 from 2-4pm. A consortium of amazing astrologers are collaborating. I may not be able to speak but I can still use my brain! The proceeds will go to Tsunami Books and my caregiving team.
Spirit - My heart is full. Your cards and texts fill me with joy and healing. I continue to enjoying making small sets of prayer flags to give out to people I see. So many of you have told me you admire my courage. If facing forward with an open heart is courage - then that is me! Not that I don't have plenty of tears. "The heart that is breaking is but opening again."
My vision continues to be that we will remain connected even when my physical body has crossed over to the next realm.
"Our capacity for wholeheartedness can never be greater than our willingness to be broken-hearted." Brene Brown
Welcome Vinny to our Team!!!
Posted 10/20/2018 by Johanna Mitchell
Dear friends and family,
Thanks to your generosity we were able to hire a part time caregiver. His name is Vinny Todaro with lots of experience for his 23 years, Vinny is a CNA who has worked privately, in home health and in skilled nursing facilities. We already know he is amazing, compassionate, willing, talented, funny, open to learning and teaching. Right now he is here for a half day on Wednesday and Friday.
The monorail lift is going really, really well! I feel so safe, no anxiety about falling! We have named her Pepita - she is an alebrije ( a flying magical totem part jaguar & part eagle) . We will paint her soon and post photos of her glory!
If you are interested in learning how to use Pepita so you can help me here with going to the bathroom, with all that entails ( no lifting, just attaching my sling to Pepita) , text me 541.543.5798 or email me email@example.com
My energy level is stable although my voice is faltering. I have a fancy communication device that I am attempting to learn that will speak for me ( not my voice) ! here is another place for a naming. So speaking on the phone is challenging.
Thank you for all the heartfelt cards and letters, I weep each day filled with your love! My heart is full of gratitude to each of you . please know I truly feel your love. Also, if I neglected to send you a thank you bookmark, please let me know and I will send one to you in the mail.
All blessings as we celebrate the color of this season knowing that as the leaves fall and plants die away each leaf holds the possibility of new beginning from the compost.
Posted 09/26/2018 by Johanna Mitchell
Through your generosity we were able to purchase the necessary equipment to install an overhead monorail. Through the genius of Peterson, my loving husband, who engineered the entire process, machined parts and spent hours on the phone talking to the manufacturers and watching you tube videos, was able to get it installed and working!
The Benefit was a Love Fest Success!!!
Posted 09/17/2018 by Johanna Mitchell
Saturday's benefit was beyond all expectations in a myriad of ways. The outpouring of love was palpable. We danced, listened to hours of live music, ate delicious food, drank wine and beer, told stories, and we laughed and we cried. Wow did we cry! Tsunami book store and parking lot was beautiful , vases of flowers and hundreds of beautiful donated items! I hope you can see with your mind's eye what love looks like! Love that has no limits and no restraint.
And if this was not enough, we reached our fundraising goal !!!
Today, I feel love, vulnerability and gratitude. Recently I tried the new ALS drug, Radicava, and after 2 courses my body said, "No thank you", so I stopped the treatments.
I have a much more intimate relationship with ALS, and how She, as one manifestation of the Holy in Nature, expresses herself in my body. I will not spend what life I have left, fighting this disease. I will continue to cherish love, knowledge and grief. If you would like to understand more about how I am Approaching my own death, you can read: The Smell of Rain on Dust: Grief and Praise, by my beloved teacher Martín Prechtel, and Die Wise, by Stephen Jenkinson.
I'm having a much more difficult time getting in and out of my bed, taking a bath or using the toilet. We are making accommodations at home so I can be safe. That's the purpose of this Benefit. Thank you for your generosity.
It has become increasingly difficult for me to speak. So texting and emailing is much easier for me.
If you want to know how you can help here are some possibilities:
Stay in your own open heart with compassion.
Chant Bobby McFerrin's vocal version of the 23rd Psalm which you can find on YouTube. I chant this every day and I still, lovingly weep every time.
SEND ME CARDS!!!! I LOVE receiving cards.
Your presence is a blessing beyond measure. I love you, I carry you in my heart with love. There's no one I don't love NOW.
This Benefit is less than 2 weeks away!! Please contact your friends who love to shop!!
Posted 09/04/2018 by Johanna Mitchell
We have so many amazing beautiful art items and so much more! You can read about all of the donated items on the flyer. You can also look at the Facebook Page: Benefit for Johanna Mitchell. We will also have beautiful music during the event provided by many professional musicians.
Peterson is busy buying the necessary parts to assemble the monorail lift system. This will facilitate me getting around the house more easily and to be able to bathe safely. We call him our ingenious inventor.
I can not thank you enough for all of the ways you have touched my heart. I remember each of you fondly. This circle of support enhances all of our lives! I love you all.
To Garden Divas
Posted 08/31/2018 by Johanna Mitchell
If you are interested my lovely garden calls for your TLC - thank you in advance
All love, gratitude and blessings
PS A typical day in this latest round of Radicava Infusions: Wake up, have breakfast ( 2 hours), get a ride to the infusion center at Riverbend get a ride back home ( 4 hours) , have lunch, go back to my cozy bed and nap ( 3 to 4 hours) , have supper, go back to bed ( 8 to 9 hours) and start again in the morning. So exciting to imagine my body saying yes, so please hold the vision!!!
KLCC radio spot features Johanna
Posted 08/17/2018 by Kathy Snell
This evening, KLCC did a great story on Johanna. Listen here:
I love your visits
Posted 08/11/2018 by Johanna Mitchell
As the ALS progresses, Johanna’s energy is waning and she needs more quiet time and rest. While she loves your help and support there are times when she needs to rest. So, on those days if you are willing to come and sit quietly with her, she would love to see you.
Also, there will be times she may have to cancel at the last minute, so please be sure to include a texting number (texting is the easiest way for her to connect, phone calls are becoming more difficult for her).
While I was sitting with her today at RiverBend she shared with me how immensely grateful she is for the outpouring of love and support from all of you. She wanted me to share with you; “It is such a blessing to open my heart to vulnerability with people who love me so much. Even in the midst of this devastating disease I feel blessed and experience miracles everyday. My heart is overflowing with gratitude.”
And so is mine for all the years of love and support she has given me.
Signed Johanna’s secretary :)
Radicava Infusions - Day 8
Posted 08/07/2018 by Johanna Mitchell
I do not forget you, I do not abandon you
This short update is to let you know that along with my fabulous doctor Kim Goslin, I decided to start the new ALS drug, Radicava. Just as I made the decision, I became unable to use the lift to enter and exit the pool at my beloved YMCA here in Eugene. I am holding the vision that there may be a solution. This is just so very sad to me. I love my friends and the freedom of my body in the water. I know there is another pool here in Eugene that may be accessible for me which I will try soon.
Right now I am in day 8 of 14 days of consecutive infusions. The great news is that I am not experiencing side effects. I have yet to feel the positive outcomes I hold in my heart. I feel tired and that can be due to so much travel back and forth to the infusion center and ALS itself. If you are inclined you can read about Radicava here. https://www.radicava.com/patient/
Thank you for sending all your love and blessings in so many ways. I hold you all in my heart
Many blessings back to you
Hurrah for Radicava
Posted 07/28/2018 by Johanna Mitchell
Hi dear helpers! As you've heard, this Monday 7/29, I get to start infusions at the hospital of Radicava. As Peterson will be out of town, we are trying to arrange helpers for as many days as possible to avoid having to take Ridesource. I have overnight caretakers arranged but will need someone to either sit with the dogs at our home or to drive me in the van to Riverbend. This will be an approximately 3 hour commitment. If you want to be trained as a van driver, contact Johanna in advance. If you aren't comfortable driving the van, the dog sitting piece is very important too!!
Save the date!
Posted 07/19/2018 by Kathy Snell
Hi Folks! Quita here. Mark your calendars for this exciting fun event! If you can't make it but want to help, see the link for her GoFundMe account. Thanks everyone!
Hippies at the Oregon Country Fair
Posted 07/17/2018 by Johanna Mitchell
With the generosity of an amazing woman I was able to attend the Oregon Country Fair ! Peterson was such a patient helper even when I was having a difficult time. It was so wonderful to be part of the magic again.
Hello to you, this amazing circle of loving friends - I am connecting with you by reminding myself as our beloved teacher Martin Prechtel reminds us that " ...the point is not to succeed but to fail magnificently in our attempt to feed the Holy in Nature. " I continue to fail magnificently and I am honored to be in this magical world.
Here is an honorable intention to write more often to keep you updated.
First, thank you all for the cards, the help, the emails, the garden magic, the financial donations, the healing foods and so very much more. If you could see into my heart you would see the overflowing appreciation that helps me get through this living with ALS.
Physically I am coming to the realization that my body is changing as daily tasks become more difficult. The amazing women at the YMCA help me to undress and dress so I can keep going to aqua aerobics. We sing and entertain the other women in the locker room !!! Peterson and I are working on having the Y install a special lift so I do not have to stand to transfer from my wheelchair to the current chair lift to get in and out of the pool . It is becoming much more difficult to ask my muscles to say yes to even this small amount of steps. So please send good thoughts that the YMCA will say YES! and that it will happen SOON!! I intend to keep swimming at the Y - it is full of healing love and laughter and tears!!!
Look for updates on the Fundraiser September 15 at Tsunami Books
Also I go to the ALS clinic on Monday July 23 to see the entire team - so will update you about the news from there!!
all blessings from my heart
Posted 06/22/2018 by Johanna Mitchell
Just got home from our annual Willamette River Summer Solstice ritual! We offered beautiful flower embellished solar discs to the river. A family of Canada geese came to explore and pick at our flowers as they floated away on the current. You can tell from the new photo that the sun came out to greet us.
On June 5th we traveled to Portland to see the amazing Dr. Kim. She confirmed that there has been some progression in my condition since the last visit and reaffirmed that we don't know how quickly things will progress. She also explained that my prognosis will really be determined by how I adapt to the gradual loss of respiratory function and necessary interventions. At this time, there is minimal involvement of my diaphragm and my breathing is relatively normal. ALS affects every person differently in terms of what order symptoms develop. I notice changes in my speech especially when I'm tired. I am learning about voice banking in case there is a time that I lose my ability to speak entirely. Then I could use a speech generating device that would use my previously recorded voice.
On that same day we went to visit my ALS therapist Dr. Doug. He is helping me to understand that "this is as good as it's going to get." I need to accept that my energy and strength are finite and I need to make choices each day about how best to use them. I am approaching the rest of life with open-hearted love and gratitude. I do not want the rest of my life to be a fight. That doesn't mean I'm giving up but rather I want to cultivate joy and peace. So let's take advantage of now to be together and enjoy good times.
Last but not least, SAVE THE DATE!! Sept 15th will be the Benefit for Johanna Mitchell, silent auction and flea market at Tsunami Books in Eugene. More details later, but in the meantime if you'd like to be involved, let me know. We will be collecting items for the flea market and silent auction - think fine art, gently used clothing, handmade items etc. The following day, Sunday Sept 16th, is the ALS walk in Eugene and my team is the Pirate Queens! Hope you can join us for these fun events.
As always, if there isn't a slot that fits your schedule and you'd like to help, please shoot me a text or email.
Happy almost Solstice!
Posted 05/31/2018 by Johanna Mitchell
My heart is so touched by the outpouring of love and support I have received from my family and friends! Everyone at the Y has stepped up and helps me every day at the pool. A special shout out to Margaret who contacted Ride Source when they failed to show several times for rides to the pool and music events. Now I am a subscriber and have a definite window for pick up so I won't miss out!
Thanks to everyone for making the switch to Meal Train. I've received feedback that the calendar is easier to use and the slots are filling up! I love it when you come to my home and we work on projects together. We've added more slots today, so check it out!
New things to share:
- I got my new bed and I love it! It's multi-positional; the head and feet go up and down so I can change it to be comfortable in many positions.
- I've been trying different CBD formulas to find the perfect sleep potion. Any advice on this matter is greatly appreciated. I love medical marijuana!
- We moved my office from the upstairs down to the main floor and it is my new studio office where I can work and make art. Many thanks to Rogene for her help making that transition.
Quita and I are going to Portland to see Dr. Goslin on June 5th so we will post an update after that. Truly in my deepest heart I have much happiness. I am holding the vision of finding effective treatment. So please continue to hold me in your good thoughts.