Jun 282016
 

I was diagnosed with inclusion body myositis 20 years ago. Throughout this blog I have recorded the various stages of weakness and disability that I have experienced. I have always wondered how the story would end. Now I know. I hope this will help others suffering from my condition.

The past few months I have noticed the effects of my weakness to a much greater extent. Especially with respect to being able to hold myself upright when sitting, the ability to breathe, and most importantly, the ability to swallow. People have suggested a feeding tube however that would have meant moving to a different type of facility and a much lower quality of life. Therefore I decided that would be something I would never do.

Two weeks ago I woke up with pain in my left side that greatly restricted my ability to take a deep breath. I also seemed more congested than usual and attributed it to a cold. However after a week the cold had not gone away and I was spiking high temperatures at night. Eventually I decided I had to go to the urgent care.

At urgent care they took a chest x-ray and said I had aspiration pneumonia in three places in my lungs: upper right, upper left and lower left. I was immediately transported to the hospital where they began giving me their strongest antibiotics IV.

Their speech therapists evaluated my ability to swallow which was made much worse by the hospital bed that did not give me the lateral support I need in order to sit upright and swallow. So she said they would not be able to give me food or water. After two days the doctor came in and said I was not getting better and that I would never get better because they could not get nutrition into me. He suggested a feeding tube but added that even that might not be any difference. Of course I refused the feeding tube. He then told me my best option was to return to my assisted-living facility under hospice care. They would continue the antibiotics and I would be able to eat and have a chance to fight off the pneumonia. However he cautioned that under even the best of circumstances there was a good chance that this would be the end of my life. He was a very good doctor and went on to say that I had been fighting this inclusion body myositis for many years and that now it just might be time for me to stop.

I am back at Huntington Manor now and despite the antibiotics and being able to eat (although not wanting to) I am back to running high fevers at night which is a sure sign the pneumonia is continuing to worsen.

I am on hospice and they will keep me comfortable as I complete this journey. I have made many online friends over these years and I value those friendships deeply. I simply couldn’t leave without saying goodbye.

  65 Responses to “Chronicles of disability: The Final Chapter”

  1. Thank you for being a great “Warrior”…go in peace!

  2. Thank you for sharing, Mike. You have been my inspiration to “keep on keeping on,” since my IBM diagnosis five years ago. Thanks for all you have accomplished.

  3. I I know what your going thru mike my wife went thru the same until the love of my life passed away may 28 she is now In heaven suffering no more missing her more everyday till we meet again your husband joe

  4. I have followed your journey since you’ve been posting in one of the many myositis FB groups. Know that you have truly made a difference in so many lives — especially those of us with Myositis, Mike. You’ve provided helpful info on how to maintain a good quality of life despite IBM and have been inspirational with your attitude.

    Thanks for everything you have done for the Myo community and for those with IBM in particular by sharing your very personal experiences.

  5. Mike, your book, your blog and your life have educated and inspired so many. Your candor and willingness to share the good and the bad of your journey have helped patients and caregivers adapt. We are forever grateful. Go in peace knowing yours was a life well lived, a life that made a difference in this world. We hold you in our hearts.

  6. Thank you Mike, time for you xx
    Hope I can do the same.
    Reunited soon with your dear Wife.
    Love and admiration xx

  7. I have the utmost respect and admiration for you my friend. I’m glad that we’ve had the opportunity to talk with each other. You know I understand what you’ve been going through. IBM is a beast that relentlessly impacts our lives. The physical ramifications of this disease are difficult enough, but the emotional aspects seem even harder at times. God bless you my friend. You will always be an inspiration to me!!!! Gary

  8. Be at peace Mike. Thank you for your wisdom.
    Maureen

  9. Mike — your journey continues to be an inspiration to so many; you have make a remarkable, positive impact. I wish for you nothing but peace and comfort.

  10. I am so thankful for all you have done for the kids and I. am sorry to hear about your diagnosis I wish you all the best. Hope you are not in to much pain,

  11. May the Lord be with you, Mike, as you face this latest challenge. Your book and your blog have helped me immensely on my own journey with IBM. Know that you have made a difference in so many lives. You will be missed.

  12. Thank you for your courage to share your experience. You turned your disability into a window for all of us to view. Peace to you.

  13. With tears in my eyes, I read your blog. Mike, your book and blogs were an inspiration and help to many. Wishing you peace and comfort as you enter this next phase. Soon you will be re-united with your beloved wife.

  14. Mike you are the best thing since sliced bread. Mervyn and I had such a super time with you last year and we were hoping to repeat next year. I am so pleased we had this window in your life . Love Joy and Mervyn Walker

  15. Mike, you represent the very best that our family has produced. I will share your goodbye to us all with my sister. You have preached to all of us by example. You have spoken to many. May your hospice be peaceful. Your cousins are in awe. We love you, Mike.
    … Stan

  16. Mike- I face this disease with,I hope, as much courage as you do knowing the road ahead is much rockier than others must travel. I am blessed to know you, and I think of you everyday when I get and look at your painting. I hope you know that you have made every Warrior better by being the example you are. Tell Beth hi for us.

  17. never heard of IBM until 3 years ago, i found here after lots of googling i have read every part of here its been a great in sight into IBM and Myositis and living with this condition
    thank you so much x
    Chris

  18. Mike, you have been an amazing source of encouragement to so many, including myself. Thank you for this post. I only recently discovered your blog, and have been so blessed with your courage and humor. I pray this last journey that you are facing will be a peaceful one.

  19. Thank you Mike for sharing you journey your page was one of the first i visited when i was first diagnosed 3 years ago but have been suffering affects for many more years. I can only wish your hospice be comfortable, pain free and you are in the very best of care. Again i thank you for your insight and inspiration

  20. Mike, you have taught us many things over our 30 years of friendship. You have truly taught us to charish each day, and look out for one another as you and Beth did for each other. We hope this last phase of your journey will be peaceful. Love to you & Beth. We’ll see you on the other side. May God hold you in his loving arms, George & Susan

  21. Dear Mike, how I wish I could rewrite the end of your story not for you, as you know and seem ready for what’s ahead, but for us. Because you have been our hero , our model, our strength, and our guide. Thank you for telling us the truth with humor, ,for preparing us with gentleness, and for showing us the world runs well on compassion and perspicacity. I wish you love, joy, and peace.

    • Mike, you have been an inspiration to us all. While fighting the hard fight, you taught us to always have dignity, to continue to find medical improvements, you designed aids to help others and communicated through your blogs. Your creative art work will always bring beauty for others. Frank and I were blessed you graced our lives. Soon Angels will fly you to Beth’s arms. We will see you in the future. Much love.

  22. Thinking of you Mike.
    I have always admired your strength and the way that you have lived your life since your diagnosis.

  23. Oh dear …. this is hard, but even after all you’ve already done for so many people, you continue right to the end of this physical journey with sharing about your last chapter. I sense peace in you and satisfaction with a great body of work and valued friends and family all around the world. I thank you for taking this time, right now, to take us right to the door step of the next chapter and am excited for you to have Beth closer than ever. Such anticipation! I imagine and hope that I too feel this same way when it’s my time. Your legacy will go on and we sure will miss you. No doubt you’re very tired with this battle going on inside your body, but your mind and spirit are ready. Thank you for your warriorship and lessons for all of us. Hoping your transition to the “other side” is exciting and a wonderful occasion. What a great man and what a great life you’ve had. So many people love you and you left your mark on the world in such a positive way. <3

  24. Oh dear …. this is hard, but even after all you’ve already done for so many people, you continue right to the end of this physical journey with sharing about your last chapter. I sense peace in you and satisfaction with a great body of work and valued friends and family all around the world. I thank you for taking this time, right now, to take us right to the door step of the next chapter and am excited for you to have Beth closer than ever. Such anticipation! I imagine and hope that I too feel this same way when it’s my time. Your legacy will go on and we sure will miss you. No doubt you’re very tired with this battle going on inside your body, but your mind and spirit are ready. Thank you for your warriorship and lessons for all of us. Hoping your transition to the “other side” is exciting and a wonderful occasion. What a great man and what a great life you’ve had. So many people love you and you left your mark on the world in such a positive way. <3

  25. I am so saddened to read this, Mike. You have been so brave and I want you to know that you have been an inspiration to so many people. When we worked together, I had the utmost respect for you and still do. You are a great writer and found your passion in life. Beth will be waiting for you with open arms. I really believe this and am so blessed to have met you in this lifetime. God bless!

  26. It’s obviously my loss for not having met you, Mike…looking at all the testimony from your colleagues says it all for me. You’ve been an absolutely outstanding role model for IBM sufferers and others as well. What a wonderful legacy. My wish for you is for peace and Godspeed.

  27. Mike

    I am thankful that you’ve shared you and Beths journey and this has been a way to know another Shirk cousin . So admired your courage & your fight . Praying for you. and your family and your journey to final peace. I believe there are loved ones waiting with open arms when our time here on earth is done. Anticpation!

  28. Prays as you travel this part of your life. You have been a brave warrior in this fight agent IBM. Peace.

  29. Mike, You have been an inspiration for me through all the years. Thank you for
    showing us courage and never giving up for so many years. May God hold you
    softly in his hands. You will be well remembered as well as Beth.

  30. Your strength, creativity , and perseverance will always be a model to live by, my friend. You have proven that life is an art. Blessings.

  31. I am so thankful that you’ve been here. You have helped me so much and through the years you’ve taught all who have read your book and blog what grace is. Rest well.

  32. Mike, you are an inspiration, and I admire your strength. Your book is amazing and I have enjoyed your blog so much. This post saddens me a great deal but I can only hope to have half your strength and perseverance as my life continues. Myositis has taken a lot from me, but I am happy to have had the chance to ‘know’ you. <3

  33. Thanks for sharing your story with us . I’m thankful that you are able to and have made YOuR decisions regarding your care and treatment or In This case your right to decline further treatments such as the feeding tube. I haven’t followed your story but definitely want to read your blogs. I pray that you are kept comfortable throughout this journey until you are made whole again in Heaven.

  34. Mike, I have followed your blog and have read your book a few times, you give me the courage to fight on. I am so glad we got to talk on the video chat last month and I pray that your next journey will be a peaceful one. Peace my friend.

  35. Mike – you are and will always be an incredible inspiration for those challenged with disability. It has always been a pleasure to know you and watch as you went through your journey with courage and creativity. Sending you peace and love. Teri Ann

  36. You have been an inspiration to so many people Mike. Thank you for sharing your journey with such bravado and humour. I pray that your days will be filled with peace and joy. Val Foreman

  37. Miows , You are an inspiration to everyone who has had the privilege to know you!!!
    May God bless you and hold you in His care, always!!!
    Joan Dee

  38. Mike,

    Words cannot express my thoughts or feelings. I am so glad I had the opportunity to see you at Huntington Manor when I was in California.

    Your courage and ability to create a path for yourself and others are an inspiration to mankind. May God be with you.

    Cousin Joe

  39. As always Mike, your courage and dignity humbles me. I’m so grateful that you chose to share your story with us and in doing so, helped us all through our own myositis journies. You have truly touched our lives and will never be forgotten. God bless.

  40. Mike, My husband is a retired nurse anesthetist, retired Jan 1, 2011, diagnosed with IBM Dec 2011. He is a former marathon runner, so having a hard time. He has a wonderful, positive attitude, but has been confined to a motorized wheelchair for past year. As it seems you are nearing the end of this earthly journey and on your way to being with your Beth again, I wish to thank you for sharing your story. We read your Rolling Back, and felt like someone else knew what we are going through. Wish we could have known you in person, as sharing these feelings and experiences so enriches our lives. God bless you and speed you to paradise.

  41. Thank you for your blog. I will be praying for you and hope with all my heart you’ll be free and with your wife xxx

  42. What an incredible legacy to leave behind. Love, kindness, generosity, knowledge,insight, and creativity. Knowing you have touched so many people’s lives and inspired us with IBM to draw from our own strength, to support others and to live life to the fullest. This is a priceless gift you have given us. Thank you, Mike, from the bottom of my heart. The way you lived your life effected how I live mine. May your journey be gentle and short till you meet up with your darling Beth.

  43. Call the Andrew Womach Ministry for prayer 719 635 1111…. Hugs and healing prayers!??

  44. Mike

    I’m saddened to hear this but I know you’re a braver man than I and will face this next journey as well as one can. Thank you for being there for me and so many others all these years we will be less without you but with your help we now know better ways to deal with our lives.
    Noah

  45. Hi Mike, you do not know me, yet I know you thru SDWS and your Blog. I am saddened to hear of this turn of events, and yet at the same time………….. I am joyful that you will transition and be with your beloved wife and find peace. This world, here and now – will so miss your presence and your authentic self. For you bring forth honesty and truth and strength. I just want to thank you for the gifts of word and deed you have sprinkled upon a thirsty ground. Take care my friend, and let go when the time is right for you.

  46. Thank you, Mike, for posting goodbye. You have touched so many of us, personally, and via your blog and book. I hand a copy of your memoir – and love story – to every new person in my “life disabled!” I wish you peace in your last days. With great respect and affection, adieu.

  47. Mike,

    You are a courageous, intelligent, hard-working, inquisitive human being who didn’t allow a chronic disease to stop you from living and loving and learning. From your art to your self-taught web design and hand coding to your wit and writing, you are impressive. My parents and I have been so blessed to have you in our lives. Your blog post is a motivational and inspiring statement.

    In a time in our society where it appears that few people bother to contribute in any sort of meaningful way, you have been and always will be a great contributor.

  48. I’ve never met you. Your words touched me. Hope to meet you on the other side!
    Tell Jesus I said hello!

  49. What a story this has been, full of courage, inspiration, kindness and Mike’s unique blend of humor and intelligence! I don’t believe I have ever known of anyone so determined to go on despite every obstacle. Many of us wonder whether we have accomplished anything with our lives: Mike, at least, does not have to wonder. Enormous thanks to a gifted artist, writer, teacher and master of resourcefulness.
    >
    > Mike, if you are able to read these, please also go to TMA’s Facebook page where people are also leaving tributes.

    We promise to honor your life by putting an end to this terrible disease.

  50. Mike,

    You are a prince among men. You have shared so much, given so many gifts in your beautiful paintings, your inspired words, your shining spirit.

    Even though we’ve never met in person, you’ll always have a place in my heart.

    Blessings to you and your beloved family.

  51. Thank you for shedding light on the dark path we are on. Go in peace and rejoin your love.

  52. Mike,
    Your story has continued to touch me this week as I have read the outpouring of responses and pondered all you have meant to our community. As a fellow myo-fighter and person “plagued” with the need to document the Myositis journey in writing I am humbled by the grace with which you spoke in this post. I’m not sure where you continue to find strength. I know we only met briefly in our video chats, but I am honored to know you and wish you peace and Godspeed. I’m sorry to say goodbye at the same time I celebrate with you for a life, truly well-lived and well-loved.
    All my love,
    Emily A. Filmore, Vice President, Myositis Support and Understanding

  53. Mike
    We have always been amazed at your positive attitude and lifestyle through the last 20 years! You are such an inspiration.
    Each time we would get a chance to be with you, we would realize you were going more places and doing more than us… And were always impressed and interested in your adventures!
    We’ll miss you… As we do Beth…our love to you and your lovely daughters and grandchildren. Dave and Sharon

  54. Thanks Mike so much you certainly helped us all you were such a pleasure to know even just on Facebook I know I will miss you very much.
    Just hope and pray I can do it with such grace and dignity as you are.
    Many prayers and love going to you as you cope with this last chapter no matter how long xxhugs and more prayers we will all catch up one day.????????

    • Jag har stött pÃ¥ den här utmaningen vid flera tillfällen hos andra fotgrloogabe, sÃ¥ nu tänkte jag delta för första gÃ¥ngen med ett bidrag!Det verkar vara mycket intressanta och kreativa bilder som dyker upp här.En riktigt trevlig utmaning!

  55. Mike, I was diagnosed with IBM in 2009. Thank you for your blog, it has helped me and I am grateful that you took the time to share your experiences. God bless.

  56. I think of you as a brother since we were born two hours apart. You have been the most upbeat person that I know and have helped so many people with IBM. Now I hope you will bask in the feelings of love that you receive from all your admirers.
    Galen

  57. I found your blog and read your book just this week. I’ve apparently had IBM for many years, over 12, but recently diagnosed correctly this time in October 2015. The wisdom you have shared will make a big difference in my life, and I thank you for sharing your experiences and insight. It is never too late to make a difference in someone’s life, I hope I can do the same some day. Go in peace, my friend, you leave the world a better place because of you.

  58. I see and hear your name and evidence of your many contributions throughout our Gallery, our events and this great organization that you supported for so many years. To say that your art and your presence will remain a part of SDWS is quite the understatement.
    Thank you for being the guide for so many of us.

  59. Thank you Mike for your words of wisdom and insight into this disease. My husband has IBM, so following your posts has been like looking into the future for us, giving us the guidelines that may help us as we journey forward. God bless you, may his grace and mercy shine upon you and give you peace!

  60. Oh Mike you have been and continue to be an inspiration to me, so brave and resourceful and amazing. God bless you.

  61. Your blog helped share insight for my family and I about what it’s like to live with IBM. My father and I met you a few years ago at the SD KIT group at a time when we still weren’t sure what his journey would be.

    I hope that you are comfortable and have beloved people near you. Your words have been a great service to others.

  62. Mike I’m wondering if you’d mind if we continued your blog ?
    IN YOUR MEMORY..

    • We need some time to figure a few things out before answering that question. Dad did want the site kept up for a couple of years. Thanks…Linda

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