Tuesday, October 18, 2016

As Hope Fades, I Press on: Here’s How

Hope can be an effective tool to ease human suffering. In many cases, though, it’s not enough.

After my diagnosis 15 years ago, I set out to become the most informed patient on the planet. Even though there were no FDA-approved treatments for primary progressive multiple sclerosis (and there still aren’t), I knew the answer was out there. I just needed to be smart, brave, and hard-working enough to find it. Oh, and cocky too. Every fighter needs a little swagger.

I tried chemotherapy and immunosuppressants. No luck. I self-administered daily, painful shots. Didn’t help. I participated in a clinical trial where I had to drive two hours each way, two times a month, for two years. It slowed down progression for a while; then it didn’t. I convinced interventional radiologists to thread catheters from my groin into one side of my heart and out the other, so that they could balloon supposed restrictions in my internal jugular veins—twice. In retrospect, I doubt there was anything wrong with those veins. I lobbied doctors to inject powerful medicine into my spinal cord every two months for two years. Again, helped for a while; then it didn’t. I pursued all these treatments in the hope that I might slow down, stop, or even reverse the course of my disease. Instead, I progressed from a limp to a cane to a wheelchair, and my arms and hands are headed in the same direction.

Understandably, I began to lose hope that I would ever find a medical solution. I discussed this with a well-intentioned friend who warned me, “If you don’t have hope, you have nothing, right?”

No. That didn’t describe how I felt. As hope faded, something else took over, and it wasn’t despair. I remained in generally good spirits, even though I knew I might never get better. Something more impassive, almost comforting had intervened.


Where hope receded, acceptance filled the void.

It’s not that I studied the alternatives and chose acceptance as the best path forward. It lived inside me the whole time, waiting to be called upon. Perhaps I inherited it from my mother or learned it by watching her live as a quadriplegic for 39 years. No matter its origin, I was fortunate to have such a tool at my disposal. I suspect, however, that acceptance can be discovered, learned, or acquired if you don’t possess it already.

Acceptance should not be confused with surrender, although the differences are subtle. Surrender carries a negative connotation. “I give up. Do with me what you will.” Acceptance carries a neutral connotation, “If this is my life, then so be it,” or sometimes a positive connotation, “If this is my life, I will make the best of it.” In its purest form, acceptance has a Zen feel to it. You are exactly where you are supposed to be in life. Don’t fight it. Embrace it.

I don’t lament what might have been, envy what healthy people can do, or ask “why me?” I’m grateful for what I have, and I accept what I’ll never again be.

I haven’t given up all hope. I continue to keep one ear to the MS research world. In a dispassionate manner, I evaluate each potential treatment on its merits. But I don’t rely on this hope to motivate me. I’m not emotionally invested in it. I keep hope around only for practical reasons, so that I don’t miss an opportunity for a treatment that may work. There is a lot of research going on. I just don’t know if it will become available to me in time.

Hope is the much sexier cousin to Acceptance. Hope can produce spectacular results. Books and songs have been written about the power of Hope. Acceptance does its work anonymously. The results, important though they may be, don’t garner much attention, save for this obscure essay. Although it may seem counterintuitive, I find that hope and acceptance work together quite well.

For my healthy and disabled readers: how do you manage hope and acceptance in your lives?


  1. I really appreciate that piece of writing. It helped me to accept what I can't do any more when others can. Thanks Mitch! Xx

    1. Susan, nothing makes me happier than knowing I helped someone. Thanks for making me happy :-)

  2. I place no hope in research. All the pharma companies are in it for the profits, focusing on modifying MS rather than on finding a cure - or even stopping it in its tracks. So that leaves me with acceptance. It is what it is, and that's all that it is. I'm sure it's harder on my husband to watch my decline than it is for me to experience it.

    1. Webster, you make several good points. Because the pharmaceutical companies work on a profit motive, they are not always (or ever, depending on your perspective) moving in the direction of what's best for patient health outcomes. But one day there will be a cure, and it may come from a pharmaceutical company. With our current structure, however, it's just going to take too damn long. And regarding the pain our loved ones feel by watching us, I share your concern. Thanks for your comments.

  3. Great article Mitch. I manage Hope and Acceptance every day. Hope – I stay connected to the community MS events, the internet, friends and family. Acceptance – page 449 of the book Alcoholics Anonymous, 3rd Edition. In the 4th Edition, bottom paragraph of pg. 416 to the end of the chapter.


    1. Thanks so much for stopping by and commenting today. I had never looked at the AA book before, until now. It makes sense that acceptance would be a big part of a recovery program like that.

  4. Somewhere along the way I have learned to move quickly past thoughts of things I can't do and think of things I can do that I enjoy and I do some of them (at least one) every day. Joy is everywhere: sunlight through my gorgeous blazing maple tree, the ducks on the pond, keeping a running log of the wildlife out there, watching great TV on PBS on Sunday nights, lunch with my friends, volunteering at the community theater and church and my homeowners association, reading a good book which has been made possible again due to the ability to enlarge print on a digital book, talking to old friends on the phone. There are so many things I can do and I find new things all the time because I'm open to them. Thank goodness for all the bad times and stupid things I did earlier in my life that taught me to abandon my need for big excitements and look for little things that make me happy.

    1. Daphne, excellent point about joy, and beautifully articulated. Maybe it's a 3 legged stool: hope, acceptance, moments of joy. Do you mind if I develop that theme in the future?

  5. For several years I kept thinking, "Some day, maybe they'll find a cure for my PPMS."

    As the years, then decades. Cteeped by, less and less of me was left to benefit from ANY steps made towatd even slowing progression, let alone stopping it completely and NO possibility for any reversal of my disabilities in my lifetime.

    So here I am, 22 years after my dx, I'm a 62-year-old female, a full-fledged, card-carrying, quadraplegic. No working arms, legs, bladder or bowel. Fortunately, PPMS folks aren't affected the way some RR or SP folks can be, with memory, eyesight, or swallowing problems.
    At least that's what I've heard.

    I'm about a 9.25 out of 10, with 10 being death) on the older EDDS. (Expanded Disability Status Scale) I've been bed-bound for the past three years, so I no longer have any muscle tone. It's all I can do to not gain weight which would make being bed-bound even more difficult for everyone, especially my family and caregivers.

    So my reccomendations to advanced MS'ers is to stay as active as you can for as long as you can. Maintain a healthy weight. Get out of doors occasionally, and ask for help when you need it ... but do not abuse it. Even those close to you only have so much they can or will do. Save money your entire life. You will need your strength, funds for aids and aides (helpers) and money for all the unexpected medical and daily living expenses.
    Trust me. Been there; done that.
    Karen Sawyer
    Georgia, USA

    1. Karen, thank you so much for sharing your sage advice. The very fact that you are engaging with those of us who haven't reached your level of disability yet, or never will, makes me think that you've achieved some level of peace or acceptance. Maybe not. Maybe this concept has its limits. Either way, thank you so much for writing, and know that my thoughts are with you.

    2. i am a ppmser diag in 2005 , in my power chair , i can still eat , 1 arm works , its about what you can do , not what u can no longer , thanks for your share

  6. I just read your post from 2012 about atheism. First let me say, I feel pretty much the opposite :) However, based on what most religions teach about heaven and hell, and God being in charge of the world, I totally understand why you would feel that way! I have a different belief. I believe that it is the Devil, not God, in charge of the world right now, I think it's pretty obvious by what is happening around us every day! But I do think God cares, and when his time is right, he will end all suffering. For me, with a new diagnosis of PPMS, this is my hope, my faith, really. So, yes, I have acceptance that this is just something that I have to deal with (am already a cancer survivor), FOR NOW. But when God's time is right, all the crap in the world, including my illness, and everyone else's problems, illnesses, whatever, will be gone, and I will be healthy again. I know it probably sounds like an incredible fantasy to you, but it's what keeps me going day after day, even with the incredible pain. So hope, faith, acceptance, it all helps to keep me sane (mostly lol), calm, and just living day to day. I don't believe in hell, so I definitely don't think God will send you there (he doesn't do that!). He sees our hearts and he knows the kind of person we are, and he definitely knows we're not perfect - at least I'm not for sure!
    Being newly diagnosed (although having had symptoms for years), it's good to have a place like this where we can read about others in similar circumstances. Thankyou for taking the time to do this. It's appreciated, even by a non-athiest :)

    1. WB, thanks so much for writing. As I put together this post, I knew that many of my readers would list faith as one of their primary coping mechanisms. I thought about acknowledging that in a paragraph, but in the end I elected not to. This, in no way shape or form, implies that I don't think faith is a legitimate tool for those who wish to employ it. I'm in favor of whatever works, as long as it is not harmful to others. Faith in a supreme being, coupled with tolerance for differing worldviews, meets that criteria in my mind. Frankly, the idea that there is a devil and a God fighting for control of world events does sound pretty far out to me, but I realize that my worldview is in the minority. I don't think anything less of true believers like you. Thank you so much for taking the time to write, and I wish you the best in your journey.

  7. And for some who are afflicted, acceptance is not a given. They make other choices because their circumstances are not just physical disability but social and emotional abandonment. And, as you know of whom I speak, he refused to live in such a state of decay. To each his own.

    1. You are so right. Although acceptance is a powerful tool, it doesn't fit everyone's situation. I have the utmost respect for George's difficult decision, and he serves as a reminder to all of us that this damn disease needs more attention in the medical community. In my writing I try to walk that fine line between inspirational and realistic. I know you know that I'll never forget about George. I'm so glad you are preserving his memory, and speaking out on behalf of so many people that the mainstream MS community tends to forget about. Thanks so much for writing.

    2. Mitch,
      Thank you so much for your tribute to George. I cannot believe how many he touched even though he never met them.So many have made the same choice, but few are as public about it. I so respected him that I could never have refused him his right to self determination. But, my heart is forever broken as I think of my beloved son each day and night.

    3. Thanks Hilda for expressing so well what George shared with us all. His courage to be so honest with his deepest emotions and feelings touched so many of our lives. He so understood and was able to put in words what we all felt and I admired him so much. Dee/OH

  8. I want acceptance, in fact after the last four years of my life, acceptance would be the best thing. For me I don't know how to accept what know one can diagnose... I am 39 (until February), next Wednesday after 4 years of begging doctors I am FINALLY going to be seen by an MS doctor at Vanderbilt. I exhibit nearly all the symptoms of MS (list below) yet I've gone from walking with a bit of a limp to a cane to using a rollator, I don't have lyme, lupus, RA, or gobs of other autoimmune disorders, I am extremely vitamin D deficient and take RX 3x a weeks of 50,000 units and still can't get my levels up, (I did have Mono when I was in the 7th grade and understand that the virus that causes mono -- can't remember it's name now -- never actually leaves your system, i have a huge family history of MS - my great grandfather died of MS, a few of my cousins have MS all on maternal side -- I've seen 4 neurologists -- the first one sent me for an EEG and did a nerve conduction test -- I passed both -- didn't feel anything during the nerve conduction test of my arms as he stuck in needles and shocked me and even mentioned how shocked he was that I made it all the way through the test (and nearly fell asleep), but I couldn't feel anything... I get horrendous migraines, I have zero balance anymore and my two sons have had to pick me up off the floor more than once (try 6-8 times in the last 6 months) my eldest ended up moving back in with his wife and two children so I have a full time baby sitter during the day. I'm pretty convinced it's MS call it a gut feeling, I don't know, but I was normal just 4.5 years ago. It's driving me insane, all I want for Christmas is a diagnosis so I can move on to acceptance. maybe than social security can also make a decision on disability as well, i've been unable to work for 4 years, we are so close to losing our home and everything we have -- I've always overcome everything thrown at me, with grace and dignity, a teenage mom, from an abusive marriage, widowed at 23/24, my life could be a movie of the week on lifetime, you are so right about the why's... I just don't understand. I have an allergy to contrast so getting a clear MRI is difficult, I have 2 lesions on my spine, but because of my contrast allergy they are unsure if the lesions are hemangiomas or MS lesions...
    Common Problems
    Fatigue -yes
    Heat/Cold intolerance (heat) yes
    Walking (Gait) Difficulties -yes
    Numbness or Tingling -yes
    Spasticity -yes
    Weakness -yes
    Vision Problems -yes
    Dizziness and Vertigo -yes
    Bladder Problems -yes
    Sexual Problems (nothing medical, just no real hot n heavy desire, but I would never tell my husband no if asked)
    Bowel Problems -yes
    Pain -yes
    Cognitive Changes -yes
    Emotional Changes -yes
    Depression/Anxiety -yes
    Insomnia/Sleep Disruptions -yes
    Less common symptoms
    Speech Problems -yes (my sister and husband swear that I slurr speech at times, I don't notice or recognize it).
    Swallowing Problems -yes
    Tremor -yes
    Seizures no
    Breathing Problems no
    Itching-yes - new symptom in the last few weeks I want to cut my finger tips off the only thing that help is me putting my hands in bags of ice!)
    Headache -yes - migraines
    Hearing Loss -yes
    Secondary and tertiary symptoms
    Frequent Bladder / urinary Tract infections -yes every time I go to the doctor (monthly) I have evidence of another infection.
    really though, I just want a diagnosis so I can finally know and accept what it is that I am dealing with and get on with treatment or supporting care, whatever. just give what i have a name already, i don't know how much longer i can deal with this uncertainty.
    thanks for listening. love your blog, I've been glued to it all night instead of doing what i'm supposed to be doing which is finishing this MS intake book.

    1. Poodle, thank you so much for writing, and thanks for binge-reading my blog. My heart goes out to you for all your suffering. Isn’t it horribly ironic that you wish to be diagnosed with a chronic, incurable disease, but I know exactly what you mean. If you’re going to be sick anyway, it does help to be able to give your adversary a name and be allowed to pursue treatments, such as they are, and have your symptoms justified in a sense. You know they are real. I hope your loved ones know they are real. But until you get that stamp of approval from the medical establishment, you wonder what they think. I can only urge you to remain strong. When you say you don’t know how much longer you can deal with this uncertainty, I hear you. But please, if that ever turns to desperation talk to somebody. At any time, you could turn the corner and get a diagnosis, whether it be MS or something else, and start the fight anew. Hopefully your upcoming neurology appointment can shed some light. I wish you the best of luck, and please stay in touch.