My letter to friends

1 Nov

My Dear Friends-

I know that many of you have been thinking of me, and waiting to hear about what news I got from the Mayo clinic.  But some of you do not know that I have been going through a health crisis for a year now, which has caused me many strange symptoms including loss of strength in my arms and legs that has profoundly affected my life.  I hope you will prepare yourself to read this letter in an appropriate space and time – because unfortunately I have bad news to share.  Before you read this, please know that I am truly OK, down to the deepest level of my soul.  I have bad news, but I have so much love that it is insignificant to my state of being.  I wish that I could tell each of you in person, looking in your eyes, so you would see into my soul and know the depth of peace that is available to us all.  I have prayed for everyone of you to receive this with the protection of love, and with as little pain as possible – so feel that and be strong with me.

The diagnosis I received at Mayo is that I have ALS, which is known as Lou Gehrig’s disease.  It affects all of the motor neurons in the body which control voluntary muscles, which obviously includes arms & legs, but also includes breathing and swallowing. The sensory nerves and the central nervous system are not affected, my eyes will always be able to move, so as the disease progresses I will be able to remain aware and will be able to communicate with the help of technology. There is no known cause for this, and therefore no known cure or treatment.  The normal prognosis for ALS is 2-5 years from diagnosis.  In relatively rare cases, some people experience a remission and during that time the disease does not progress.  Some people get 10 years, and Steven Hawking has had 40 years with ALS.  I refuse to accept a term limit.  So, while my family and I are ready to prepare for the short term, we also believe that I have every right to believe in the long term.  That leaves us with the amazing gift of being “forced” to take this present moment, and the next, and the next, and not miss an ounce of the love that is so abundant and so bright and so complete and more than what we need.  SO MUCH MORE.

I hope you will forgive me for taking advantage of this golden ticket to ask for whatever I want – but it is my privilege and the gift of this moment and I am going to eagerly accept all gifts that come offered up.  What I am asking is very bold, and very personal, but I KNOW each of you can do it for me.  First and foremost, please join me in my firm belief that fear is a false god that we give our power to in the hope that it will protect us.  I refuse to give fear my power, ever.  I am banishing fear as a demon, and casting it out of my being.  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.  Please join me in this.  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.  My family has immediately complied with my request.  They were at my house before I got back, and they are pouring so  much love in to me that it is already forcing my heart to expand so BIG, so WIDE, that my tears are joy.  And I haven’t even been inundated with all of the love and help and belief that you are going to give me once you read this.  WOW.  I am just going to open up into bliss, and send it right back to all of you.  I am very serious about this, this is the single most important support I need. Doing this will help make me a huge magnet for all the help and resources and protection I will need, and I promise you that all of this is already happening.  So before you even think about offering to bring me a meal, banish fear. And every time you think of me, find something to help you fill your heart with gratitude and love, and offer that to me.

I know your mind will draw you to Jack, and just like it is for me, it will be your biggest temptation to allow fear to enter your thoughts.   Deny any fear.  He is so totally surrounded by love from me and my family and friends.  He is soo loving and gentle.  He is the perfect son for me to have.  Of course there will be sorrow, but we don’t need to dwell on it, because it is insignificant in the face of the power of love, and at the most real and important level, Jack cannot be harmed by this.  Do you know what I believe about sorrow?  Deep in our heart there is a bubbling spring of joy that is always flowing.  Sorrow comes when we find some “important” reason to block that joy – we shove our stuff in that source like a cork, and it hurts because the joy is trying to get out.  So, let go of that stuff and let the joy flow.  This belief will be an experience for Jack and will be my legacy to him.  Help me give that to him.

I promise that John and I will be specific about practical, material ways we need help, and we will accept the help as we need it.  We are already taking steps to think of what we need now and what we will need.  We will probably create a website where it will be easy for us to tell you what is needed. If you encounter me at the store or socially, please give me the gift of normalcy and do not ask me how I am doing or what I need.  I promise to create specific opportunities for you to do that, but they will take a lot of my energy and some preparation and pacing on my part.  I do not want unannounced visits at the house.  I think I will plan a few “come hug Kim” open houses so you will have your chance when I am ready to absorb all your love and let my heart wrench open even wider.

I am looking forward to hearing from my friends.  For now, please do not be offended if I do not answer or return every phone call.  I would prefer an email, or a letter rather than a text or a call for a while.  Typing is difficult for me, so I may not return every note, but I promise to find some way to share this amazing journey with you. It is going to be all love, love, love, so I know, you already want to come along.  You see?  It is a mystery, but somehow this ALS has come here to be my friend and answer the longing that has driven my spiritual quest for as long as I can remember.

If you’re reading this letter, you have all my love.  Be at peace.



21 Responses to “My letter to friends”

  1. Rhonda Kowalski-Oltz November 2, 2011 at 2:58 pm #

    Consider fear banished here in this house. You are loved beyond words and have been for the past 6 years that I have known you. I wish I could make one of those Hug Kim Open Houses, but close your eyes and feel the hugs from here. Keep smiling, keep loving life, and most importantly keep being you. Love you and I’d tell you to stay positive, but I think you have that pretty much taken care of.

  2. Nancy November 2, 2011 at 3:16 pm #

    Kim, I offer you all my love, strength and support. I have had two loved ones experience life with ALS. Neither of them were lucky enough to have the incredible spirit you possess. I have every faith that you will live a happy, full life surrounded by love and light. Our love is with you, always. After I read this post, the first thing I did was go outside, into a bright-blue-sky-orange-leaves Upstate NY day, and play ball with Georgia, one of the most joyful creatures alive. I hope you can feel that energy, all the way from here.

  3. Jayne November 2, 2011 at 4:16 pm #

    So beautifully written. May your everyday be filled with the love and gratitude that comes from living in the present moment. Sending much LOVE your way….

  4. Jeanelle November 2, 2011 at 8:24 pm #

    Thank you, Kim, for shining so brightly and sharing your gift of love, courage and wisdom with me and the world. I love you soooo much!!! SHINE ON! NO FEAR! Sending love always to you, John, and Jack…and everyone else. like you said…there is always plenty of love…..sooooo much love….

  5. Abi Mcintosh November 2, 2011 at 9:16 pm #

    I do not know you- but this post was shared with me and I am just so inspired by your determination to be positive and to soak up each moment. I am wishing you strength in the days weeks months and years you have ahead.

  6. Steve cannon November 2, 2011 at 10:54 pm #

    We have ever met in this life. Your letter comes thru jeanelle. Beautiful. You have my love. Thank you for the letter

  7. Wayne Schields November 3, 2011 at 12:59 pm #

    Kim, you have touched so many lives already with your letter of strength and courage. You literally have 100s of strangers having deeper perspective in their lives today because of your powerful words. I feel so much joy for you, John, and Jack, the countless people that have shared your letter, and for the bigger purpose and miracles this journey will reveal. Banishing fear from Wichita Falls,

  8. Janet Clark November 3, 2011 at 4:16 pm #

    Dear Kim,

    I read your letter also through Jeanelle’s FB page. We met this weekend. I shared this letter with my two teenagers. They were amazed and inspired more than I can say. Your message is meant for the world to hear.

    Banishing fear in Iowa City, Iowa….


  9. jodi boyd November 3, 2011 at 7:16 pm #

    Tears of amazement and awe stream down my face, Your strength and amazing way with words and heart felt expression touches me so that i CAN banish fear of all types and send you love, love, love.
    from Flagstaff AZ. your family is in our families thoughts and prayers,
    jodi boyd

  10. Armel November 3, 2011 at 8:12 pm #


    I have no fear for you, John or Jack. Every time I think of you, all I could see is that big smile of yours. It takes a lot of strength to carry on your smile and confidence in the face of all the thrills of our lives. And I know very few with as much of that strength as you.
    Take care Kim. Can’t wait to see you again.



  11. Dana Felice-Podwol November 3, 2011 at 10:12 pm #

    Kim, You are amazing. You are in my thoughts and prayers. From your letter it is clear you are exactly where you need to be spiritually and emotionally. You are so strong and loving, and are surrounded by a strong, loving family! It takes a special person to view such news as a gift, and use it as a source of joy and love. Your words are inspiring me to do the same–transform suffering into love.
    Banishing fear in Chicago,

  12. Pat Rauch November 3, 2011 at 10:52 pm #

    As a mother, my first thoughts were of Jack. As a wife, I thought of John. As a woman who tries to keep juggling all those persona, I felt the temptation to feel fear, regret, anger, and a great loss. But, having met you and your wonderful family just once – at my daughter’s wedding, I realize that you are a very strong, caring, giving and loving family. Your words are a comfort to all who read your letter. They have the power to wipe away any doubt that the reader might have that fear is the enemy in this battle. I, as others have, wish you many years of smiles, hugs, and love that I know will surround you and your family.
    I hope you can feel the warmth of our love and prayers and draw strength from them.
    (Armel’s mother-in-law)

  13. Susan Stump November 4, 2011 at 9:50 am #

    Dear Kim,
    I read your letter through Janet Clark’s FB page and am sending great waves of positive and happy thoughts your way !


  14. Doug Gustafson November 4, 2011 at 2:14 pm #

    Dear Kim,

    I read your letter and heard your story through my great friend and colleague Jeanelle. Consider all fear in the corridor south of Cedar Rapids, IA, through Ely, Solon and Iowa City (my daily commute) hereby banished.

    As a Zen Buddhist, I can think of no better example of a living boddhisattva than you. Your postive karma is exponential, and the amplfied ripples – through the mirror of the universe – come back to us all.

    Gassho (deep bow),


  15. Alicia November 4, 2011 at 7:55 pm #

    Dear Kim,

    I do not know you but have been friends with John for many years. I know you must be an awesome person simply because John would only have somebody just as awesome as he is in his life. Please know that I only send postive thoughts, feelings and prayers your way.

    Banishing fear in Midland, Michigan…..


  16. Phil Shaunfield November 7, 2011 at 7:44 am #

    Thank you for sharing your gift! You’ve touched my soul. I will pray that all of your dreams come true and that the rest of the world discover your understanding of what is truly important!

  17. Tara Williamson November 9, 2011 at 5:03 pm #

    Dear Kim,

    I’m certainly not surprised that you have such a positive and wonderful outlook. As long as I’ve had the joy of getting to know you you have been one of the most positive, inspiring, and kind people. You’re such a joy. It goes without saying that whenever the time comes that you guys find yourself needing anything, that I’m here…to watch Jack, make a meal, or just come visit. I wish the MAT allowed me more time, but I’ll do whatever I can whenever you should need me. I do pray, and I will certainly pray for you. I’m so overjoyed that you are feeling so much love and support. That just goes to show how many lives you’ve touched by simply being yourself. You’ve been an inspiration for me to become the best teacher and person I can be. That’s a debt I can never repay but  I hope this comment makes you smile and this is another happy moment to be added to your ever-growing list. I’m sending happiness, joy and good thoughts your way.



  18. bernard traore nignan November 11, 2011 at 2:40 pm #

    God him self think about you and make you strong.Que dire de plus?lui seul sait pourquoi il l’a permi.courage.

    • donna mcrae January 27, 2012 at 9:44 pm #

      Hope to see you again at Kripalu! There was so much love there and you continue to open my heart. Blessings to you and your family and I hope our paths cross again and again.
      In Light and sound and healing,
      All my love,



  1. Kim's Journey with ALS - January 6, 2012

    […] many of you remember Kim wrote in her initial letter to friends a call to, “banish fear. And every time you think of me, find something to help you fill […]

  2. Kim and John need your help « The Living Loop - April 29, 2012

    […] To learn more, Kim has shared personal insights on her story at a blog — […]

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