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Kimberly passed away peacefully

17 Jul

Kimberly Marie Kathan Pijanowski, a mother, teacher, scholar, and yogi, died on Thursday, July 17th, 2014 at 9:04 pm surrounded by friends and family. It is often a custom to announce the passing of someone who dies from amyotrophic lateral sclerosis (ALS) by saying that today, “she won her battle with ALS” but Kim won her battle with ALS long before her last breath. She chose to banish fear and embrace each moment of her life as sacred. She opened her heart and continued to forge new and deeper friendships throughout her illness. She doggedly sought ways to improve towards becoming the person she aspired to be. In short, she rejected the notion that she should be defined as someone who was dying and instead embraced the life of someone who was living with a terminal disease.

Kim always found a way to take the ordinary opportunities in her life and shape them into an extraordinary experience…

People often study hard; Kim almost always got the highest grade in the class.

People go on vacations; Kim took a year off to hike national parks and ski out west.

People vote; Kim quit her job and helped Hillary Clinton get elected.

People visit Washington DC; Kim went to the White House Christmas party.

People learn how their government works; Kim was paid by the United States Congress to learn how the government works through a prestigious Madison Fellowship.

People take a yoga class; Kim lived at the Kripalu Yoga Center to learn how to teach yoga.

People are not afraid to look silly dancing at weddings; Kim did an imitation of the Elaine dance from Seinfeld that would bring the house down with laughter.

In many ways Kim did the same things other people did, she was just able to do them with more enthusiasm and less fear than most.

Kim’s legacy includes a bright, precocious son with a love of healthy food, a keen sense of adventure and Kim’s eyes, hundreds of students who were inspired to work harder and reach deep into their communities to make a difference, countless friends who carry her light in their hearts, and a loving family that raised her, supported her, and played with her all of her life, including her dear brother with whom Kim shared a bond unbounded by time or space.

She lived passionately, shared her light freely, danced wildly, cared deeply, worked intensely, and played with her heart wide open to all the possibilities that her life offered her.

A celebration of Kim’s life will be held at Vesper Point on Mount Sequoyah at 9am on Sunday, July 20th.

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Update on Kim

15 Jul

Kim is currently resting comfortably. Today she was awake and responsive for most of the day – much more so than she has been since arriving at hospice. We used this surge of energy to share pictures, songs, poems, letters, emails and Facebook comments that have been pouring in from all over the country (and even across the pond). 

She has been, and continues to be, surrounded by people who love her and we are all so proud of her for the dignity and grace she is bringing to this moment. To all of you who shared your memories, danced in her honor, offered quick notes of encouragement, prayed, or offered a moment in quiet contemplation of Kim – we, on behalf of Kim, thank you.

As you train your thoughts on what Kim is experiencing right now I would like to turn your attention to her own words mere days after receiving her diagnosis of ALS:

 I am recognizing fear for what it is – an imagination of my mind which is not as real as the very deep stillness, peace and love that is the foundation of our existence and is abundantly available to us in every moment if we are aware enough to see it and feel it – and I am aware enough. To be blunt, if you are afraid for me, then you are not offering the fullest support for my experience. So, what can you do to help?  Refuse to fear for me and my family.  If you pray, please pray that I will l be given the grace to refuse the existence of fear in every moment.  I can promise you that my experience of that grace is visceral and very real.  If you do not pray, then just discipline your thoughts.  This is just as powerful.  Do not imagine any horrors for me.  Imagine and see and believe in the AMAZING gift that is being given to me. 

A New Year’s Update

7 Jan

As we start a new year I had a request to provide an update on some of the changes in our world since Kim’s diagnosis. I originally sent this as a letter to family and Kim asked that I post it here.

Our Treatment Plan
Kim continues to take a cocktail of drugs and supplements designed to slow the degeneration of her neural-muscular connections, improve speech and control affective symptoms, support muscle strength and detoxification to keep her immune system working as optimally as we can. One drug we have removed from the cocktail is Dexpramipexole, which despite strong early promise, has failed its phase 3 efficacy trial and will be discontinued. This is the liquid drug in the red bottles for those who have visited and helped prep Kim’s drugs – she calls it the million dollar cocktail.
Kim continues to follow a keto regimen that is largely gluten free. We have learned that hydration is important and to that end Kim is constantly drinking electrolyte rich beverages, her kale juice, and we use copious amounts of lotion to keep her skin hydrated throughout the day. Becoming dehydrated leads to very painful muscle twitching and rigidity so this is a constant battle worth staying on top of.
Kim is in the pool three times a week and in the gym another day during the week for stretching and weight bearing exercise. When people ask me what we do, of all our treatment options, that has the most immediate positive reaction I always say being in the water.
Kim’s spirits remain high in the face of great challenges. She reads spiritually based books and articles on her iPad and has thrown herself into her art projects. We are looking to convert part of the garage into an accessible art studio for her. I would like to find more opportunities to help her enjoy kirtan music and meditation.
Our Caregiving Plan
We are hiring help for 25 hours a week (more if other coverage falls through in any given week), expanded our opportunities for friends and neighbors to help through a site called Lotsa Helping Hands, and benefitted from the help of Dan and Lenore who have temporarily relocated to an apartment in town. Prior to these changes Barb and I were covering all of this on our own and at the end of the year we all agreed it was a nearly impossible pace to maintain so we hope when she returns these new supports will help greatly. Increasingly a “3rd shift” has emerged where Kim needs my help throughout the night so that  presents a new challenge and pressure on my sleep that we have not solved yet.
Our Finances
Kim and I did a quick accounting of how much we spent in new ALS related expenses in the past year and we counted just over $113,000 that was not covered by insurance or grant funding. The bigger ticket items include the ADA van, ADA remodel to the house, doctor appointments, lab tests, equipment, meds, professional caregiving, and various therapies. Of that, almost half was covered by donations through the crane fundraiser and other generous gifts. While some of the big ticket items are behind us (the diagnosis, the van, the refit of the house), our caregiving costs will rise to $30,000 in the coming year so our ALS related out of pocket expenses will easily top $50,000.
Our Outlook
We are wrestling with many new emotions as we have found “acceptance” to be a fleeting feeling – since the new normal changes almost weekly. We are tired, and this is hard, but with that said we are also very happy quite often. Jack is a true joy and makes us bust out laughing daily as he finds his voice. We continue to get better at protecting our alone time together -we still have weekly dates and I can honestly say that we laugh and love with a grateful heart more often than we lament what has been lost. Thank you all for your support and love and I hope this is a blissfully happy new year for all of you.
John