Thoughts on Death

I suddenly have so many friends on Facebook who either have ALS or have some sort of relationship to it. That means that my feed is often full of ALS related news, including deaths. This week, the ALS community lost Kevin Gosnell, the founder of ALS One.

ALS One is a collaboration between different groups who are working to end the disease. Kevin, in his short time living with ALS, managed to get these groups together in a way that is admirable, but also shocking in its necessity. Why would it take a man who was diagnosed in 2015 to get Mass General, Harvard, UMass, the ALS Association, ALS TDI and others into a room together? Those people should have been in the room together a very, very long ass time ago. So, while I’m grateful for and impressed by Kevin’s initiative and achievements, I’m also frustrated by how they highlight a lot of what is wrong in the world of ALS.

I didn’t know Kevin. I had never met him, never spoken to him, and therefore have no right to feel anything but sympathy for his family and sadness over a life lost too soon. Many people are saying beautiful things about him in tributes and posts. It sounds like he was an incredible guy, and it’s bullshit that ALS took him.

But, I have to be honest, the news of his death brought up other emotions for me as well. Kevin lived with ALS for 15 months. 15 months. And I know that this will sound terrible, but when I heard of his death, part of me was relieved for him. I don’t mean to offend anyone with that statement. I know Kevin’s family is grieving right now, and I know how they wish ALS had never affected their lives. But it did. And it affects mine, and sometimes I just wonder if the shorter battles are the easier ones to bear. I’ve been living with ALS for five years, diagnosed for four, and I can say with certainty that dealing with the disease for this long changes your relationships. I don’t know if a shorter disease span is as corrosive. In some ways, maybe it’s more turbulent, as progression happens so quickly that it must feel like whiplash. One day you have a healthy father and a year later he is gone. I don’t envy the families who have to deal with that, and I certainly don’t mean to downplay their struggle.

But I’m tired. I’m tired of feeling like a burden, tired of how my disease is ruining other people’s lives. This is such a sensitive topic, and I already feel as though I’ve crossed a line. I’m admitting to something I’m not proud of, because I figure if I feel like this, there may be other ALS patients who feel this way, too. People who don’t want to die, but who are tired of living in a place where death announcements are more frequent than birth announcements. I don’t want to die. But It’s hard to live like this.

Living with this disease feels like playing a game of Chutes and Ladders, where you’re always losing, always sliding down. But in this game, there’s no discernible bottom. Meaning you just keep sliding, and although it seems like it should be a good thing that you don’t reach the end, sometimes it just feels bad. How long can you play the game? How much energy do you have?

Obviously, I don’t always feel this cynical and fatalistic.  I’m describing a moment in time. I’m so sorry for everyone who has lost their life to ALS, and for every family member who is missing a loved one, or who is watching a downward trajectory. This disease is a monster, and living with it can bring some of the deepest joy and most extreme pain I know I’ve ever experienced. I wish that Kevin Gosnell and many others were still around to experience the joy. But I’m also somehow, just slightly, comforted by the end of their pain.

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29 thoughts on “Thoughts on Death

  1. Ashley Holloway

    Thank you for sharing something so hard to share. You were honest and open and you sharing WILL help people who feel the same way not feel so alone with those thoughts. I don’t know you, but I am extremely proud of you!

  2. Patti

    You have written what I have often privately thought. My husband has ALS and I have prayed that it would take him while he still feels like he has purpose. Thanks for writing what many are thinking.

  3. Ipshita

    It needs so much courage to share these delicate truths – you do it regularly with utmost grace. And I can only sympathize how terrible it feels to be a dependent on your caregiver – I wish we could do something to make it a little easier. So proud of you my friend, Sarah …

  4. Rachel Zawacki

    so much vulnerability which most don’t have the courage to share these types of feelings…whether they have ALS or not. Love to you and yours Sarah. <3

  5. Rebecca

    Oh Sarah. How saddened I was to hear about Kevin as well. I found out recently that his college roommate and friend actually fished with his kids on my husband’s charter boat, more than once, and my Tom actually met him at a men’s meeting with CCALS here on Cape Cod last summer. Tom lived with ALS for 14 months and I say with the same trepidation that I am actually grateful for the short duration of his disease. Three weeks before my husband passed, we were on the beach on Grand Cayman on our last trip, which was one of five we were blessed to be able to take within the timeframe after his diagnosis. Believe me, he suffered as much as anyone would with this diagnosis, but he was blessed to be able to live on his own terms until the week before he died and I am forever grateful for that. Bless you and your family for all you are going through. I think of you often with much admiration from afar.

  6. Marcia


    I do understand, I remember telling my sister we we’re bringing in Hospice…she could only scribble with her one remaining finger..”what funeral home am I going to?” While at first I was taken back, I realized she had enough. While I miss her more than I could have ever imagined, I would never want her back the way she was.

    ALS is so different for everyone, yet the emotions and heartache the same. Just heartbreaking there is not enough being done given the barbarism of this disease.

    Remember on any given day you can fell anyway you wish, its your fight.


  7. Carol River

    Thank you so much for your honesty-
    I lost beloved Dad to ALS four years ago-
    He passed less than a year of being diagnosed with it. Until he was diagnosed with this horrible illness- I had no idea what ALS was really about. In my opinion…. It is the most devastating diagnosis that one can be given. My Dad was a healthy, athletic, wonderful man who had always been self conscious of the food he ate and his overall health. We were all shocked and devastated after his diagnosis. Watching him go through all that he did- left me terrified to be diagnosed will ALS or to ever hear of anyone else being diagnosed.
    You have every right to express how you feel- you are the one going through this-
    Please know you have many people praying for you and sending positive thoughts your way.
    Carol Rivera

  8. Kerrie

    My daughter was diagnosed with Als/MND at age 6, she is now 20. We know the end is near and while it breaks my heart, I see her quality of life diminished so. Her little body has broken down and now causes her pain, she has lost her zest for life. I’m at a loss as to what to do for her, how to make her physically comfortable or stimulate her beautiful mind, all I have to iffer is my love for her.

  9. bob Hebron

    As a CALS I can tell you with a 100 percent certainty that every minute I get to spend with Beth is a positive in my life. I can’t imagine how diminished my life would be without those minutes,each and every one of them. Sure I would prefer those minutes be defined by perfect health but that doesn’t at all change my mind and I really don’t think it changes her mind either. Every new smile she sends my way is simply enough for me. Wouldn’t trade one for the world.

  10. margaret

    Greetings from your hometown of Oak Park. Living with ALS for seven years and diagnosed more than 5 and a half years ago, I completely understand how you feel. Sometimes people remark that I have been blessed with so many years since the onset of the disease, but I just don’t feel that way. Yes, I am grateful to have had the chance to see all of my kids graduate college, which I initially thought I wouldn’t live long enough to see, and to witness their transition to almost full adulthood (will they ever get there?), but I am so weary of the challenge of living day to day. That part feels like a curse. What do I have to look forward to — being progressively more disabled; watching the worry lines grow deeper on my husband’s face; being an ever increasing burden? At first when I met fellow ALS patients who quickly succumbed to the disease, I pitied them and their families. Now I see the mercy.

  11. Joely Swenson

    I definitely hear you Sarah. I’m 6 years in in December. I’m at the point were those PALS that I met when I was first diagnosed are all but gone. My mind tells me “cure, I want to flippin’ live!” but my heart says “Die already so that everyone can get on with their lives.” Thank you for keeping it real. No one should have to go through this.

  12. Suzanne Parish

    Dearest Sarah, my sister died last Nivember from ALS. I took care of her for almost 10 months. When I got there she was still walking slowly with the help of a walker. Less than one year later she was gone. Watching her suffer everyday was so horrible. Not being able to stop the disease was agonizing. I will tell you that the very moment she passed you could see all of us let go of our next breathe and become calm. It was a palpable feeling in the room. We were relieved she was no longer suffering. We were relieved we no longer had to watch her suffer. She awoke everyday with a smile and hope. Now I know she awakes everyday with a smile and life. The life she was meant to have before ALS. Blessings to you and your family.

  13. Sharon

    Oh Sarah, how many times I have thought the same thoughts. I have replied to you before. There are many many people with ALS that feel he same way. Just by you saying it helps all of us with ALS more than you will ever know. Don’t stop writing.

  14. Cris Simon

    Your words are all my intermost thoughts and feelings. Living with ALS – symptoms 4 years ago diagnosed 2 years ago.

  15. Janet

    Sarah, I lost my sister/best friend on October 7th, 2014 to ALS, and I still feel numb. In my heart I knew that Kassy was losing her fight to ALS and couldn’t bear another day of being taken care of. I was one of her main caretakers, I would do all again if I had too, but it was soo heartbreaking to watch my sister suffer daily and not have they strength to hold her own head up! When my sister Kassy was put in hospice, she only lasted 4 days, but I have to tell you Kassy died in such a peaceful, loving atmosphere. She had such a glow of light that surrounded her beautiful face.. She definitely was at peace! Thank you for sharing your story. God bless you! You will be in my daily prayers…

  16. AH

    There’s no right or wrong way to think or feel, no “line to cross”. A dear loved one died passed away 3 years ago, after a 16 month battle. I cannot understate how much I wish I could see him, talk to him, hug him. If I could just talk to him one more time… But, it was and is a relief to know that his suffering is over. I cannot reconcile these feelings, nor do I try anymore. All I really know is, he will always be in my heart. I/we cannot control what ALS does to the body, and to the spirit, of those afflicted and those dear to them. But love endures.

    Thank your for your honesty.

    ALS is a BS disease

  17. Beth

    Yes, yes, and yes. All those things. You have hit the ALS nail on the head in a sensitive and articulate manner. Thank you. You are a courageous woman and a loving mother (among many other attributes!), and I have followed your words quietly for many months.
    I am grateful that, like you, my husband was able (with difficulty) to share with me much of the same feelings in the few years before he passed from ALS. He marveled that he could find contentment after being completely locked in – he did not expect that – and he also was pained with the situation we found ourselves in, and the eventual choices about a respirator, and recurrent pneumonia, among the many other difficulties. Oh, that no one should ever have to contemplate such things.
    Tomorrow will be another day, and you will embrace it with your fortitude and thoughtfulness…your family is so blessed to have you as a role model and loving family member. That will be apparent FOREVER! Peace and Love to you.
    With Gratitude,

  18. Brooke

    My heart breaks reading this post and these comments. You are not crossing a line. You’re speaking your truth. ALS is a monster, so true. ALS has taken so much from you, but it does not and will never define you. You are strong, sassy, witty, strong-willed, funny-as-hell, beautiful, determined, brilliant, loving, and so much more, but you are not a burden. You are a gift. I love you so much.

  19. Stacey N

    I don’t know you, but I understand your pain. I’ve had ALS for 6 years but diagnosed 5 years ago. While my ALS is progressing slowly, I find myself discovering more and more things I cannot do. It is frustrating, depressing, overwhelming, and disheartening. I deal with extreme pain as I also have Fibromyalgia and arthritis (in my back). Because of the pain, I take very strong narcotics which only exasperate the chronic tiredness I feel. There have been many days recently where I’ve caught myself thinking, what’s the point of being here? I’m a body taking up space. I don’t feel like I contribute much to my family.
    Anyway, I’m sorry to go on, but I do understand your feelings.
    Take care my PALS friend.

  20. Betty

    As a newly titled CALS, I have been reading everything I can find on ALS. The most insightful information can be found by reading the very personal blogs shared by persons who live with ALS. I too love my husband, his smile, his humor, but he has made it perfectly clear what defines his quality of life. He is choosing not to have a peg tube or any other life extending procedure which is killing me. I have fed this man for the last 45 years of his life, I’m not sure how I can watch him starve himself to death. But thanks to Sarah and Richard and others, I get it. I wouldn’t have if not for their ability and willingness to so clearly share their very private thoughts. My heart goes out to everyone having to make these kinds of decisions. Thank you Sarah.

  21. Pam Hillery

    Sarah, I shared your post on FB, as it so eloquently expressed my feelings. Thank you for saying what I feared to say. 4 years, 3 diagnosed, and I’m ready to go.

  22. Diane

    Lordy.. You have given me still another perspective. Today I am 16 months a widow..I put a link on my blog to yours with this post. I thought I would be now able to go down to the ALS clinic and start to help, Alas, I am still so shaken. It is not the fault of the patient, nor the family, nor anything controllable…Only the fault of horrid ALS. I am grateful for this post of yours…Thank you mucho.

  23. Ida Bianchi


    My father died on June 28th. He was diagnosed in August 2014 after having strange symptoms since June 2013. I hope that he experienced his final moment as a release and I sincerely wish that part of him is going on in some way. I am sure it feels terrible for you to feel like you need so much care when you are at a stage in your life where you would be caring for others if not for your disease. I offer this as some consolation for you; the experience of giving care to someone you love is as beautiful as it is difficult. I dont’ mean to minimize the stress and the challenges. I just know that I was grateful that I could show my dad how much he was loved and valued through my contribution to his care. My mother was his primary care giver and I know it was harder for her than it was for me but she too would say that for her it was an act of love to be by his side through it all. It has made us more aware of life’s beauty and its vulnerability. Those are important.

    Thanks for always sharing the reality. You are a beautiful person and I can only imagine how much your family loves and cherishes you.

  24. Gretchen

    Oh Sarah,

    My heart goes out to you as this horrific illness continues to steal pieces of your life every day. My husband is my caregiver, chief cook and bottle washer. Like you, I hate the loss of my ability to take care of myself, to walk, to cook and clean, and to take care of him. I can see this taking a toll on him as he battles his own health issues. I often day dream of falling asleep and not walking up. I too, am tired of being a burden, and really tired of watching others walk. Or pick up a baby/child. Or go to work!

    You write so beautifully, and say what we all wish we could say. Thank you for your bravery. And the reminder that living a longer life is not as important as living a good quality of life. Living longer to love my children longer does not mean loving them better.

    Sarah, please know you are so, so loved by so many. I am very sorry your relationship with Rob has been changed from him being your husband, lover, best friend, co-traveler, adventurer, to that of caretaker who is already working a full time job. And trying to parent on top of all of this? Such a lonely process for both of you. You are a beautiful woman, with a beautiful family. Thank you for sharing with us. Praying for you daily.

  25. Kathy R.

    Sarah, you are truly such a strong person. I’m sure you do not feel that way most days but I’m sure everyone around you does. My husband passed away almost 20 years ago and it seems like yesterday. I still miss him so much. From diagnosis, he only lived 21 months. He could still walk but couldn’t speak, eat, etc. He loved life until the end but I’m sure he felt like a burden. He was not. I always wondered what he thought about being in this condition and you truly give me an insight to his feelings. He never let out any of those feelings but I’m sure they were there. Thank you for being so truthful and honest. Always remember that your wonderful husband and sweet little daughter will always remember these days. Eventually, they will just remember what a sweet, wonderful person you are and not the disease that defined a great portion of your life.

  26. Tina Flink

    As a fellow PALS, diagnosed 4 years ago, I feel the same sentiments exactly. Life at this base level, leaves me embracing the thought that those who succumb quickly are fortunate.

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