Love

It feels like the end is getting closer. Connected full time to morphine pump, but pain is still unrelenting, especially in shoulder. Breathing harder. All water and nutrition now through gravity bags — drip, drip, drip. Need assistance for every movement.

Surrounded here by so much love and care I feel I am ready for the next step. I have no regrets at all – I have had a full life, touched and been touched by such wonderful family and friends.

So if there is to be a final lesson for me it is that love is the ultimate gift — love and honesty.

I am so grateful for the messages of support I have received from readers of this blog. And for all the wonderful friends, especially fellow PALS, I have met here. I hope my writing has provided you with some insight and strength with your own challenges – ALS or whatever.

I will soon be at peace, my struggles past. But I will be here in spirit to help strengthen each of you in your lives. So if you here a little voice whispering “Love”, know it is me.

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48 Responses to Love

  1. marvin weinbaum says:

    Bless you Stuart and all those who have brought you love.

  2. Eva keach says:

    Readers of your blogs have received the greatest gift of all from you…LOVE and its meaning.

  3. Jim Chinnis says:

    You are an inspiration, Stuart. I am better off for knowing you.

    I hope the love can ride atop the pain and just keep going when the pain is gone.

  4. Terri Rea says:

    Stu and Roz…..we’ve met you through Sandy and Dick, and have been following your blog for weeks. I am in awe of your courage and honesty and beautiful writing skills. So articulate and ‘accessible.’ Love right back at ya.

  5. Boofie O'Gorman says:

    Stuart,
    The ripples of those you have loved and who love you are unending. I hope that the love we can send back to you gives you some comfort now. Your courage and transparency in the face of your illness gives each of us strength to face our own challenges with honesty. Thank you.

  6. Lee Gunn says:

    Stuart,

    Would that we all could learn the lesson you’ve made so clear, and that we/I could have translated the lesson into all facets of life very early

    The gift you have given your readers as you’ve shared your journey is valuable beyond compare.

    With love, and hoping so much for your comfort,
    Lee Gunn

  7. Barb says:

    I have been touched by your wit, intellenge and courage. Your blog has brought tears and laughter. You leave a legacy a love. Thank you.❤

  8. Cheryl Terio-simon says:

    Love to you, Stuart, and your family. Thank you for the love and bravery you have shown in sharing your journey. I will welcome the little voice when the time comes.

  9. Barbara Gems says:

    My dear friend – this is the saddest thing I have ever read. You have given so much to others throughout your life through Shoreshim, GRACE, Cornerstones, this blog and more. You have such a big and generous heart and have enriched the lives of those around you. Thank you!

  10. Edgar Coxeter says:

    Dear Stuart:

    I have read your blog for a year now, having been introduced by Joan Cannings, an especially close friend of mine for several years. I read each piece with much anticipation. This last one was so utterly reassuring that it filled me with inspiration. You seem to be the love of which you speak. How many people you have blessed with this attitude. You have it together with such strength and humility. An example to all of us. I “piggy-backed” on all your struggles. I hope to have the attitude you expressed in this last blog all through my life. Thank you brave pioneer. You bring much joy to many.

    I boldly sign this in a mindful way to you Stuart,

    love,

    Edgar

    On Sun, Jan 5, 2014 at 11:43 AM, Drinking Through a Straw – My Journey with ALS wrote:

    > Stuart Rakoff posted: “It feels like the end is getting closer. > Connected full time to morphine pump, but pain is still unrelenting, > especially in shoulder. Breathing harder. All water and nutrition now > through gravity bags — drip, drip, drip. Need assistance for every > movemen”

  11. tmurphy58 says:

    Stu – I’m so sorry this is happening so quickly … I’m so very glad that Ron introduced us and that we had the pleasure of getting to know each other and sharing four lunches together! I say a prayer for you each day young man and hope your pain subsides. Only positive thoughts coming your way … Sincerely, Tom

  12. Arnold Moses says:

    Stuart: Know that you are an important part of my life.

  13. Gail says:

    Louise has been sharing links to your blog. Thank you, your insights & observations have made a difference & have been a blessing to me. Love, Light, & Peace to you.
    Gail Brightwell

  14. Bob Osterhoudt says:

    My friend Stu,

    I am flying to one of your favorite places – Monterey, Ca. I can feel your love and presence at 40,000 feet in the middle of the country. You ARE loved by so many people and you have given us so much of who you are. You have become a part of our livevs and sould and will never be forgotten.

    Bob

  15. Bruce says:

    Stuart, I’m sorry to hear the end may be near–but I feel sure you will soon be in a safe, pain free state. Please know that we are all better to have known you. For me, your blog has been amazing and helpful. That you can say you have no regrets, means you have been loved and appreciated by all who know you, and deservedly so. I have no doubt that you have lived a wonderful life, too short, but wonderful. I wish you peace. You WILL be fondly remembered.

  16. Gil says:

    Stuart, What a touching blog, I’m swept away, you inspire me for my time to leave though I don’t think I can match your grace. We once competed on slurring, now you don’t speak & at times I still slur, tis a strange world, but we are all blessed by your spirit & good will! Many hugs!!

  17. Ellen Anderson says:

    Dear Stu, Thank you so much for your gift of love. I write this note, not as a goodbye, but as an expression of love to you from us. We have treasured you and your memory will continue on. This is such a sacred time that there are no words but love for you, Roz and your family. Love, Ellen and Joel

  18. Julie Susman says:

    Oh Stuart – You are right — about so much. Love is indeed the answer. I hope you can feel the love across the cyberspace from those of us who have been touched by you, not just during the last year, but for all those many years before. Sending love to you, to Roz, Simon, his wife and the grandchildren. I hope you know that your spirit, your intelligence, your drive, the strength of your personality, your commitment, your accomplishments, and yes your love, will continue to brighten the days of those of us who know you.

  19. Leila Gordon says:

    My love and gratitude to you dear Stu; and also to your beloved Roz.

  20. John Leopold says:

    Stuart – thank you for your courage, strength and determination. You’re a great Colby White Mule. I’m proud to be your schoolmate and am grateful for your friendship. God bless.
    John Leopold

  21. Dan Kusic says:

    Stuart

    So many thoughts and feelings to express to you, for your gracious kindness to help others who will travel this same path…God Bless you and thank you; may your load have been a little lighter as a result of your “pay it forwards”.

    Maybe there is a way that you could reach Peter & Jane Kusic on the other side, give me some kind of signal…and I could let Roz and your family know that you were doing well (on the theory that indirect “contact” is more easily accomplished than direct contact)…just my delusions for pain and loss to be lessened. I will listen carefully for your signal.

    You are the best.

    Dan

    Dan Kusic TaxServ, LLC 1313 Dolley Madison Blvd., Suite LL-130 McLean, VA 22101-3926 Tel: (703) 883-9100 x 222 Fax: (703) 883-0711 E-mail: dkusic@taxserv.com

  22. Frank Petho says:

    Stu, Thank you for gracing my life. You are a real mensch, in the truest sense of the word. Peace.

  23. Jim Lay says:

    I hesitate to post since every PAL’s path is their own. But my wife (ALS plus c4-c5 incomplete quad spinal injury) had severe muscle pain, especially shoulder pain, in July. Opiates weren’t controlling it. We tried everything we could think of, with some success. Three inches of memory foam and a “Drive” variable pressure mattress overlay ( her “magic bubbles”) plus PT made a huge difference, to the point where she is ok with occasional ibuprofen. She does take baclofen and gabapentin for spasms and nerve pain.
    Your blog has been important to us. My wife is also progressing all too rapidly and has no movement below her neck, limited swallow, no speech, and all her nutrition through her PEG. It is very hard. Thank you for sharing so much of your experience.

  24. Sara says:

    Thank you, Stu. I feel honored and blessed to have met you, worked with you, laughed a little with you, witnessed your courage, had insights into your vision for Cornerstones. It’s hard to find words to describe my feelings on reading this blog posting, except to tell you that you’ve inspired me to love more. Thank you. Thank you.

  25. Maureen Porter says:

    Stuart,
    The minister at my church gave a sermon this morning based on a quote by the Spanish philosopher and poet, G. Santayana. “There is no cure for birth and death, save to enjoy the interval” I thought of you. Thank you for being YOU and for teaching us to enjoy the interval.
    Thanks for your honesty and your willingness to be vulnerable with us. Your courage in the face of physical and emotional suffering is remarkable to behold. Your wit and sense of playfulness are traits I admire. I feel privileged to know you. With gratitude and love,
    Maureen

  26. kadiet says:

    Stu, our little voices are chiming in to tell you how much we love you. You have brought so much to our lives. We are better, so much better, for having known you. Love, Kim, Rick, and Freddy Westrich

  27. Leigh Sneed says:

    I have been following your blog from the beginning, and I feel so blessed to have met you (through Sandy and Dick), and seen you at several Cornerstones events. You are truly amazing. Your willingness to share such a personal journey, in such an eloquent and honest way, has been a most precious gift. You are the embodiment of grace and dignity. Your courage, and wonderful sense of humor through it all, is truly inspirational. May the love you radiate flow right back to you, and to your wonderful Roz.

  28. kasey.barnum@gmail.com says:

    Stuart,

    It’s just incredible how many people that you touch and give love to on a daily basis. I only met you a hand full of times – but you have left a mark on me. I appreciate your strength and acceptance through this journey of yours. You are TRULY an inspiration to those who are in your life daily and even to those who you’ve just met in passing. It is an honor to know you and thank you for sharing your journey with all of us. Your humor makes me smile daily – I loved it when you taught me how your AAC device could speak 4 letter words like the best of ’em!! Much love to you and your family.

    Kasey Merrey

  29. Dick Katz says:

    Stuart:You are an amazing man!

  30. lindamarpar says:

    Stuart I pray everyday that God wraps you and your wonderful family in his loving arms as you continue your journey.  I cannot begin to tell you what a profound influence your ALS experience has been in my life.  I will never forget your message, I promise. Linda

    Sent from Samsung tablet

  31. Elizabeth Goldfarb says:

    Stu, God bless you. You’ve been such an inspiration of how to live well with a disability. It’s been a pleasure knowing you for so many years. I’m so sorry it’s been shortened in the way it has. Wishing you courage and strength.
    Hugs, Elizabeth

  32. Dave Curtin says:

    Stu, I am so grateful for the love we share and have shared and am especially grateful for our continuing and deep personal friendship as it takes two souls for friendship. Thanks for being my friend. Love you. Your pal, Dave

  33. Ok So Far says:

    Praying for peace, comfort, and always…love.
    Patty

  34. Paul Fitzgerald says:

    Stu, Thank you SO MUCH for being part of my life/our lives. You have given us much love through the travails of your illness. The metaphor of life that you shared many years ago is so appropriate. When whitewater canoeing, we must take action to steer in the fast current or risk being crashed into the rocks. You have done that so well. And you have continued steering supremely well through all the rocks & boulders of ALS. I think this has prepared you well for the next phase of your journey. Sending you much love and rejoicing in so much love you’ve shared.
    Peace & Joy to you, Paul

  35. Courtenay Wallach says:

    You have taught us so much about life, courage, strength and love. You are in our thoughts and prayers everyday. We love you Stuart!!!

  36. Thank you Stuart for all you are. Thank you for being an inspiration for so many, with your never-ending love and wisdom. Thank you for being Ellie and Spencer’s grandpa, and Jodi’s father (in-law). I’m eternally grateful you are a part of my family. You will always be with us. Love, Carole

  37. Tom Murphy says:

    Stu – I just heard the terrible news … My love and support (as much as I can give) are with you and your wonderful family and friends. I’m so lucky to have had the opportunity to have you as a friend.

    The pain and suffering are over – how great it must be to be ALS free!

  38. Gordon Adams says:

    Stu, you will only get this in the ether, But you were a blessed man and your family was blessed, too. “We are such stuff as dreams are made on, and our little life is rounded with sleep.” (Prospero) Sleep well, my friend. Gordon

  39. Stuart …from the blogs we have shared you have been an inspiration and the hugs and inspiration when we met . My symptoms have been so close to yours …. You are a gentle man ,rarely complained and you have gone down the cruel MND road with stength . You will be at peace soon but Roz will need your strength ….you always said be strong … Roz keep in touch and hug each other for me ,,, and maybe we can meet on the other side when both let go of tortured bodies xxxx

  40. Dawn Repola says:

    Dear Stu: It’s been many, many years since we worked togther in Louisville. I’ve been following your blog for some time and didn’t want to miss the opportunity to send you some love from Colorado. You and Roz were so generous to spend time with me and Dan as we were newlyweds, hungry to learn how to made our love strong and last through trials and tribulations of life and looking for great role models. You are still that role model.

    Know that you have touched many lives and we are better for that touch. Go peacefully, my friend, and thank you for giving us this avenue to share your journey.

  41. Carla T M says:

    Stu – Mike told us at the Roundtable today how quickly things were changing. Please know your friends and colleagues hold you in high esteem and utmost respect.

  42. Eva keach says:

    My deepest condolences to Roz and the entire family. May you find comfort in knowing that Stu has touched so many of us through his blogs,friends and strangers alike. His legacy of love lives on…

  43. Joel says:

    Stu touched many people throughout his career. Of his innumerable accomplishments, he will best be remembered for his dignity and strength, whether prosperity or adversity. I am deeply proud to say that I served with Stu Rakoff..

  44. Kristin Q. says:

    To Stuart’s family, I am so very sorry for your loss. I live in Arlington, Va., and just came across the Washington Post obituary. ALS unfortunately runs in my family. As someone who knows what you all have been through and also as a writer, I am really inspired by Stuart’s bravery to chronicle his journey with ALS. A friend and I recently launched a D.C. area-based group to raise money for ALS TDI toward a cure for this horrible disease. You can learn about us and contact us through our facebook page: https://www.facebook.com/BottomsUp2DownALS. If, when you’re ready, you’re interested in being involved, we would love to have you at our events. Wishing for peace and strength for you all.

  45. Steve K says:

    Thank you

  46. For my love in life … I never think he straw me away him when I have do sickness ! I sleepy on the bête in my room alone can not the work up 3-4 day later I work up !!!my feeling all the time every days miss him worry him thinking him it is nothing worry about myself ..but my hand when I touch my phone it is nothing all gmail him reply to me back ..I eyes begone all the tears drops down on my face …cause I know he stop live me and he want do changer heart and straw my love life swats him ,cause he want the Margie with another girl …I don’t know what can I do !??? Right know I am still do saddling from him and missing him but I angry him until I die and all my life …just do angry someone to life me …he just want used me but sure heart him nothing me in …
    I want to say I can forget him when I sleepy but when I open my eyes I missing him more and mores until this time I sit-down in my room alone …surely I have do sickness in my brand
    Doctor tell me my medicine the spatiality it is my feeling if I still do that I can die very quickly !!!cause I get to the big problem in my brain but I can not to the sleepy all the night and eat …last 3 month ago I never do sleepy I still site down and looking my face in the class and ask my self why he can do that to me cause he know about my life to much it is I am the women lonely for life ,cause for my life I lose my dade ,my family , my children’s ,, and all after the problem in the my country !!!
    But I never thinking he can forget me and all about my bate life ,,,all he swear and promise he can forget ,,,,and then right now I living in the tearing from him !!!
    These time 5:15 am in my country !!! Tonight I don’t sleepy too mores and mores ….after times and after times I still can not do sleepy because I still don’t understand about my life why these that ???? It is very bate lucks !!!
    From socheata

  47. Carol Bullock says:

    Stu words have touched my heart and my life and i start to accept my journey through chronic progressive disability. Love to all Carol – Uk.

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