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A man looking out over the ocean in his custom wheelchair

When Hope Is Not Enough

I was diagnosed with primary progressive multiple sclerosis in 2001, purchased my first wheelchair in 2008, and by 2016, I could best be described as a quadriplegic. I’m in rough shape.

The issue of my worsening disability rarely comes up in polite conversation. On those occasions when it does, well-intentioned people, restrained by propriety, offer sentiments like, “One day they’ll find a cure, Mitch. Don’t give up hope.”

I need something more than hope

Hope. It is a concept no less hallowed than peace, love, or faith. I don’t question anyone’s sincerity when they prescribe it for me. Because I suffer from a chronic, incurable disease, however, I find hope routinely over-promises and under-delivers. Hope is not enough. I need something more, and I’ve found it.

I don’t wake up each morning hoping it will be the day they find a cure. In my long list of motivators and coping mechanisms, hope ranks squarely in the middle of the pack.

I have subjected myself to so many treatments over the years — several out of pure desperation — all to no avail. My disease marches on. If I had invested emotionally in the success of these endeavors, I would have had my heart broken time and again. After one of my early treatment failures, I discussed the concept of hope with a fellow MS patient who suggested, “If you don’t have hope, you don’t have anything, right?”

He could not have been more wrong. As the years passed, and the disease ravaged my body, I remained in relatively good spirits, even though I knew I might never get better. I came to understand that a lack of hope does not necessarily lead to hopelessness. Instead, it led me to acceptance.

Finding acceptance

Acceptance should not be confused with surrender. 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 even a positive connotation, “If this is my life, I will make the best of it.”

Hope is the sexier cousin of acceptance. On occasion, hope produces spectacular results. Books and songs have been written about its power to uplift and motivate. But while hope entices us with its siren song, it can be capricious and unreliable.

Acceptance, on the other hand, does its work in the background, steady and true, humble and earnest.

I find the value in my new life

With acceptance, I don’t expend emotional energy lamenting what might have been, envy what healthy people can accomplish, or ask “why me?” With acceptance, I don’t long for my old life. I find the value in my new life.

I haven’t given up all hope. I continue to keep one ear to the MS research world. 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 for practical purposes, so that I don’t miss an opportunity for a treatment that may work.

The challenge for all of us is to occupy that space where acceptance and hope happily coexist, and where we can draw from each as needed. Acceptance is about today. Hope is about tomorrow.

I spend most of my time living for today.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MacP
    4 days ago

    Mitch, Living for today is the best advise one can give to anyone with a malady. Hope and acceptance are truly balanced when it comes to any suffering from a disease of unknown daily outcome. Waking up to a new day is my sunshine after 40 years. I no longer think of Hope or Acceptance. I as you only “Live for Today.”

  • Mitch Sturgeon author
    4 days ago

    Mac, you’ve got the right attitude!

  • Lily
    1 week ago

    Mitch, very well said. I remember when I learned about acceptance. I am diagnosed just over 11 years now, and when I was told I could accept it, but I didn’t have to like it, that changed my whole world.
    I carry hope with me, but I too live for today.
    Thank you for sharing your wonderful story.

  • Mitch Sturgeon author
    1 week ago

    Lily, that’s a nice way to put it – accept it but you don’t have to like it.

  • allinjay
    2 weeks ago

    Mitch, thank you very much for your timely (for me) well written article on acceptance. I’m a 72 yr old (NOT NEW) male with SPMS for many years. First diagnosed about 30 years ago with the more typical RRMS and converted 8-9 years ago. I also found acceptance after the typical search for any and all other modalities. I’ve been pretty much bedridden for about 7 years now. Having achieved “acceptance” a number of years ago has enabled me to begin a new chapter in my life also. ie: the WEIGHT of ALWAYS seeking and ALWAYS wishing for my “old” life was PERMANENTLY lifted from my being. I’m a much happier person with MS!!!!
    Thank you very much,
    Jay

  • Mitch Sturgeon author
    2 weeks ago

    Jay, I’m so sorry to hear that you are bedridden, but I am heartened by your attitude of acceptance. You are living evidence that one of the most powerful tools available to us is the ability to let our old lives go and make the best of our new ones.

  • Sue
    2 weeks ago

    I really appreciated your words and the many comments.
    I am physically declining each day. Basically I have the use of my right arm and hand, but they are weakening too.
    I have what I call “an easy smile.” People tell me how admirable it is that I have adjusted so well. It’s a lie. I have to accept that I can’t transfer myself on to the chair, commode or shower. I am at the mercy of my live in aide.
    My husband of 43 years died last year of pancreatic cancer. He lived with the diagnosis for less than one year. I am happy that he will not have to see me and care for me in my progressively dependent state.
    I try to swim 4 times a week. I call my stroke the snail because I can only use my right arm to pull me across the Olympic size pool 16 times. With the strength of the aide and lifeguard, I am transferred back on the Powerchair for my 1/2 mile ride home. The aide strips me , transfers onto the shower bench and waits while I shower.
    At this point I have run out of steam.
    I am furious. My life is a series of laps. The new normal. I can not stand in the pool. I can not pull up my underwear or roll on my deodorant.
    Yet, if you pass me on my way to the pool or in the elevator, I smile, looking like I have made peace with my losses. It’s not true.
    Somewhere I must have a little hope because I am still taking Ocrevus and going for yearly MRI ‘s. MS is so greedy. It is never satisfied with how much it has taken. I understand that there are more painful diseases like my husband’s cancer and equally aggressive diseases like my mother’s early onset dementia, but MS has left me totally lucid, healthy in all my other systems, but just fearful that my total demise May last 10 more years.
    Your attitude is great. I don’t know how you keep it up. How you keep meaning in your life.

  • Mitch Sturgeon author
    2 weeks ago

    Sue, thanks for sharing. So sorry for all you’re going through. I’m trying to figure out how I keep going, too, so I can share ideas with others. Watch this space as we continue the conversation…

  • Bblue
    2 weeks ago

    Bravo!!! Mitch, I think I’ve been waiting to hear just what you said. MS is only 1 of many medical conditions I’ve had in my lifetime. Three years ago I woke up feeling like I was on a boat.
    the first year I went through many expensive tests with no confirmation of anything. My Neurologist kept saying it wasn’t my MS and the other specialists said they thought it was my MS. Needless to say, I was very frustrated.
    at that point I decided I had to tell my self that that was the way things were and I had to live with it the best I could–acceptance. It makes it so much easier! I commend you and I love the way you think!

  • Mitch Sturgeon author
    2 weeks ago

    blue, glad you liked it. I sympathize with what you’ve been through. When I get a new symptom I have to wonder if it is MS or not, and I have to wonder if it is MS or normal aging. PPMS is like accelerated aging. Glad you have found the powerful tool of acceptance.

  • pardueg
    2 weeks ago

    Thank you Mitch for your post. I try my best to remain positive since my diagnosis with PPMS in December 2015. It was even harder when I lost my job the following May after 27 years. I was really bitter at them for letting me go with the reasons that they gave me. It’s a completely different group managing that company now. It’s more about the dollar than the person who helped make many of them for you. Praying for cure but realizing that it may never happen in my lifetime..

  • Mitch Sturgeon author
    2 weeks ago

    I also had a bad experience with my employer when I started having difficulty walking. I address this episode in my book, ENJOYING THE RIDE: Two Generations of Tragedy and Triumph, if you will forgive me for shamelessly promoting my book in this comment…

  • pardueg
    2 weeks ago

    Plug away my Friend!

  • chong61
    2 weeks ago

    What an inspiring post. We all need to follow what you have stated. We can’t live in a constant search of hope. The making the best of your life you can each day is an attitude we all could benefit from. I admire you.

  • Mitch Sturgeon author
    2 weeks ago

    chong, I’m so glad that this post spoke to you…

  • asapcynthia
    2 weeks ago

    The phrase new normal is ridiculous. I Feel like SPMS is like standing on sand. I just can’t seem to get a good foundation the sea just pushes and pulls the sand. so every day I wake up not sure if it’s gonna be a high or low tide kind of day. Then I take a moment to be grateful I woke up at all. And I judge what kind of day it’ll be by how big a mess I make getting coffee. Then business as usual, the business of living.

  • Mitch Sturgeon author
    2 weeks ago

    Cynthia, it’s funny what some people consider ridiculous. The one I hate is “I have MS, but MS doesn’t have me.” I’m still okay with “new normal,” but I completely understand anyone fed up with it. I like your analogy of MS being like the sea and the sand, and the business of living…

  • Tracy
    2 weeks ago

    Thank you for taking the time to write this blog, I found it extremely helpful.

  • Mitch Sturgeon author
    2 weeks ago

    That’s why I do it. I like being useful 🙂

  • PattiandBob
    2 weeks ago

    Amen ! My husband and I came to that conclusion years ago. Acceptance and striving for the best he can be. Learning to live each day within the “new boundaries” presented and enjoying each day to its fullest. Thanks for writing this .. it’s good to see we are not the only ones that know it is not “hope” we strive for, but acceptance ..

  • Mitch Sturgeon author
    2 weeks ago

    I’m pleasantly surprised by how many people already feel this way. Thanks for chiming in.

  • vickkygwen
    2 weeks ago

    Mitch,
    Thanks for this article! This is exactly how I try to live my life. I’ve had MS for 35 years, been in a wheelchair for 10. Acceptance is what makes it possible for me to stay positive and grateful.
    I’ve found I can’t function well with hope. Acceptance for the win! Vicky

  • Mitch Sturgeon author
    2 weeks ago

    Vicky, you are a true veteran of the MS world! Congratulations on staying positive and grateful.

  • collena
    2 weeks ago

    So well-worded! Thank you.

  • Mitch Sturgeon author
    2 weeks ago

    You are too kind 🙂

  • GinaWF
    2 weeks ago

    Mitch, thank you for this! Hope is definitely sexier but acceptance is more fitting for my variety of secondary progressive MS. Oh and voice-activated typing changed my life! I wrote an entire book that launched March 1st because of it! Stumble to Rise: My Life Surviving and Thriving With MS.

  • Mitch Sturgeon author
    2 weeks ago

    Gina, congratulations on your book!

  • marigoldg
    2 weeks ago

    I have Secondary Progressive MS and I absolutely agree with you. At a recent appointment with my MS specialist, she asked me how I kept going and why I always seemed to have a smile on my face. She wondered how someone who has had so many challenges in life (I also have Systemic Lupus and a history of multiple traumas) manages to not give up.

    I had to really think to find an answer that would make sense. Ultimately, I realized that while I am not religious, my spiritual beliefs are more in line with a form of Buddhism in which acceptance and being in the “now” is the focus. So I work to keep my attention on what is happening right now and today, instead of looking back at what has been lost or what might happen in the future. That’s not to say that I am perfect at it or that it hasn’t taken years of working at it, I have found it easier than constantly looking for hope where there really is none.

    My other realization is that all of my life I have been rather nihilistic in my life philosophy. We all die at some point. There is no avoiding it. Part of death is destruction. It’s going to happen, no matter how much we resist. I have always accepted that as part of life. So living in the moment and finding as much joy, happiness and enjoyment out of life has always been important to me and I have had an amazing life as a result.

    Thank you for writing about the reality of hope with a chronic and progressive illness. Nobody really talks about such things, even though they are an essential part of living successfully with all of life’s challenges.

  • Mitch Sturgeon author
    2 weeks ago

    Marigold, thanks so much for sharing your philosophy. Living in the now is so important for people in our situation.

  • rnhviolin
    2 weeks ago

    help me understand how you spend your day? have you developed new ways to spend your time/day. how did you recreate yourself?

  • Mitch Sturgeon author
    2 weeks ago

    violin, those are loaded questions — more than I can answer in a comments area. I recommend you look over my blog, http://www.enjoyingtheride.com, to understand what sort of life I’ve made for myself.

  • Yoshitail9
    2 weeks ago

    Just one word….Outstanding.

  • Mitch Sturgeon author
    2 weeks ago

    Just two words….Thank You

  • Toledo34287
    3 weeks ago

    Acceptance still evades me. I’m still battling,unable to tell what I can and can no longer do.I hear “listen to your body”. So who can tell me exactly how many laps to do in the pool without being in bed the next two days. How do I know when to stop an activity? Stop? Not me, I push toward my “normal” self unable and unwilling to accept the foreign term “new normal”. There is nothing: nothing normal about MS. What a horrible term “new normal”. What has happened to me is totally uncceptable. So your well written article caused me to rethink some of the MS issues I have. Although I won’t be where you are for some time, I will keep your article to review when I just can’t bear it another day. Thank for writing a true article, not afraid to describe the horrible but turning it into an almost good.

  • Mitch Sturgeon author
    3 weeks ago

    Toledo, you shed light on what I perceive as the missing element of my essay. I didn’t spend much time talking about tools an individual can use to achieve a healthy level of acceptance. I concentrated on justifying acceptance, not so much achieving it. But I’ll do what I can in future essays to elucidate strategies that have worked for me. As you imply, it will take time and patience to achieve a healthy balance between acceptance and hope, or even acceptance and resolve (“my new normal” versus “I will never let this disease defeat me”).

  • steve
    3 weeks ago

    Great piece, When speaking of hope I always remember the conversation between inmates Andy and Red in the movie The Shawshank Redemption.

    https://www.youtube.com/watch?v=QnjrClaWdT0

    In the end Andy writes: “Remember hope is a good thing, probably the best of things. And good things never die.”

  • Mitch Sturgeon author
    3 weeks ago

    Steve, that was a great movie, and it reinforces my point about hope — “Books and songs have been written about its power to uplift and motivate.” I should’ve mentioned movies too 🙂

  • Donna Steigleder moderator
    3 weeks ago

    You have stated perfectly what my husband who also has PPMS tells me regularly. “This” is his normal now. He’s not looking for something different. Together, we deal with today and make today the best today we can make it. No looking back only facing forward. Thanks for putting it so well into words.

  • Mitch Sturgeon author
    3 weeks ago

    Donna, thanks for your comments. Isn’t it comforting to achieve a certain level of acceptance? I only wish everyone who needs to be there could be there.

  • azboomersooner81
    3 weeks ago

    Mitch,
    I could not have said it better myself. I too need more than hope.
    Coexistence between acceptance and hope is a constant struggle, for me.
    Lately I have caught myself very nearly surrendering to my Secondary Primary Progressive Multiple Sclerosis.
    My most important attributes – my speech, cognitive skills, motor skills, memory…my brain – are being obliterated.
    Apologies for my tangent. I do not want a pity party.

  • Mitch Sturgeon author
    3 weeks ago

    No apologies necessary in this group. We get it. Accepting such things as you describe is certainly less than satisfying, but perhaps the best available alternative.

  • Kim Dolce moderator
    3 weeks ago

    Mitch, you spoke my mind and heart. Love your metaphors and precise word choices, too. You’ve so skillfully crafted this piece that I’m thrilled and a bit breathless. Looking forward to reading your next essay! –Kim

  • Mitch Sturgeon author
    3 weeks ago

    Kim, thank you so much for your kind words. Now the pressure is on me to keep producing!

  • Dianne Scott
    3 weeks ago

    Hello and Ohhh Myyy Goodness.. what a wonderful article!! My sentiments exactly, but awesomely articulated by your pen..
    “…Acceptance is about today. Hope is about tomorrow….” YES!
    Stay encouraged, my friend!
    Best,
    Dianne Scott

  • Mitch Sturgeon author
    3 weeks ago

    Dianne, I’m glad you liked the article. I know you were speaking only figuratively when you said “articulated by your pen”, but I’ll take this opportunity to point out that pens are part of my pastry, as are keyboards. I do everything with Dragon NaturallySpeaking, including having written a 300 page book! It’s a bit clunky, but better than nothing.

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