Acceptance vs. Giving In

I thought my stubborn streak would be an asset when I was diagnosed with MS in 2012. I researched like crazy, needing to know all about this strange ailment and exactly how to beat it. I did’t fit the MS profile in many ways and it confused a lot of doctors along the way. My little black and white world was, without my permission, turning grey.

At diagnosis I was 56 years old. I have no brain lesions, but several in my spinal cord. The doctors thought the lesion at C1-3 was a tumor so I had surgery on my brain stem to rule out that possibility, which they did, but there were no clear answers as to what it actually was. Is. My lesions don’t grow but they don’t scar. They stay active and light up with every MRI. There were three O-bands in my CSF so the diagnosis of MS was made. A relief. Now they could fix me.

I’ve been to every MS specialist in my area but stopped when I landed at Mayo. I call it the Nordstrom’s of health care. It’s pretty and clean and there is even live entertainment! Yep, when entering the holy grail of Mayo Clinic you’re greeted by the gentle sounds of music coming from a grand piano in the lobby. I am so out of my element there, but the doctors spend TIME with me and talk to me and answer my emails and don’t yell at me when I don’t do what they say. Hold grail, indeed.

But still, downhill I go. No matter how hard they research and how many tests I have, I get worse and I’m beginning to finally realize that there is no fix for this. I’ve gone from reading “scholarly articles” to reading about you…what you write. Your stories have been the most helpful and realistic form of research I’ve found. I’ve learned that, along with all of you, I am stuck with this thing and there is little we can really do about it except try to manage our symptoms. I’ve learned about spasticity and neuropathic itch, how to rest when I need to and how something as simple as hydrating can make me feel better.

I think it’s called acceptance. I think the fighting and the research was exhausting me and giving me false hope. I am starting to understand, with your help, that there is no fix, no black – no white, just something in between that was foreign to me, but I’m trying. I now understand that every new symptom is not a reason to panic or run to the doctor. It’s just how it is for a while, and tomorrow it will be better or something else will go awry and I am learning how to be okay with that, with the fluidity of living this way.

Is it giving in to the illness if I sway with the changes rather than fight them? Have I lost the stubborn streak that has gotten me through every upheaval life has thrown my way until now? Is acceptance going to allow this disease to march on through my nervous system without my say…or will that happen regardless of how many drugs or diets, spinal taps or nerve block injections I try.

Giving in and acceptance are really much the same though one sounds more positive than the other. One has a connotation of losing hope, the other feels peaceful and mature. Thoughtful. Decisive. The ever-changing symptoms will be there whether I fight them or not. My doctors will forever be in my corner, but I will decide what’s best for me…and for now that is to listen to you and to my gut, take the pills that seem to help and discard any that make me feel crappy. Crappier.

We didn’t get any say when MS decided to choose us, but, for me learning to accept life as it is now comes with a certain sense of peace, and that is enough. For now.

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

View Comments (8)
  • potter
    1 year ago

    I was diagnosed at the age of 55 ten years ago, I was happy they had drugs that would slow down the MS. My aunts had it when there was no treatment at all. I had signs of it at least 10-15 years before my diagnosis. I think that MRI had made diagnosis easier, that there were a lot of people that were desperately trying to find out what was wrong with them. My goal is to live a stress free life. I don’t worry if I don’t get a project done, it will be there tomorrow. Out of groceries we will get by, the house needs cleaning (oh well) maybe someday. Potter

  • tfs
    2 years ago

    Keep writing: this is an important topic. I am commencing an 8 week course with a commitment to practice one hour daily – Mindfulness Meditation. It was recommended by two major hospitals – an excellent, personable neurologist (I know.I got lucky.) an occupational therapist, and the Chief Neuro Psychiatrist specializing in MS.) Perhaps it is worth a looksee?

  • tfs
    2 years ago

    I was also diagnosed relatively late in life at age 59. Horses may be the missing element! Your article was thoughtful. Thank You for taking the time – I find this is the subject of my life now.

  • Blessed
    3 years ago

    I have learned a lot from reading the stories and articles posted on this site. It amazes me to learn that a symptom I have complained about is actually related to MS even though my neurologist diagrees e.g. severe itching or pruritus, back pain, and depression name a few. It’s like a breath of fresh air to know I am not imagining things.

    I believe over the years I have gone through the stages of grief as it relates to living with MS and I think Acceptance is extremely important considering there is no cure and MS is unpredictable at best. I agree acceptance does not mean giving up. It simply means “if you can’t beat ’em join ’em”; however, it does not define you.

  • AllisonJo author
    3 years ago

    Blessed,

    Not letting it define us seems to be a process…and hopefully I will get there. I agree that this site is a huge help. All of the doctors and specialists in the world can’t give us the information that our fellow MSers can and I am grateful for every word I read here.

    Thank you for taking the time to reply and for the encouraging words.

    Allison

  • DonnaFA moderator
    3 years ago

    Hi AllisonJo. Thank you for sharing another beautiful and insightful story.

    We’re so glad that this group has helped you come to this place of peace. And we very much appreciate you sharing your voice and your story and further enriching an already wonderful community. -AllBest, Donna (MultipleSclerosis.net team)

  • AllisonJo author
    3 years ago

    Thank you, Donna.

    Your kind words mean a lot to me. Keep up the good work.
    Allison

  • RuthGeller
    1 year ago

    Hi Allison Jo – I understood where you were coming from. I could really resonate to what you shared. Like you and others I was diagnosed later in life some thirty years ago. And it took a long time to come to terms with the fact, that there is ‘no fix’. Your last sentence speaks true to me (and perhaps to all of us) “we didn’t get any say when MS decided to choose us, but for me learning to accept life as it is now, comes with a certain sense of peace”. That says it perfectly. I’d like to share with you, what has benefited me. I find there is a difference between acceptance of what is, VS being strong, stubborn or giving in. I am a teacher of Mindfulness Meditation for chronically ill, handicapped people. What I’ve learned from them is all about ‘what is, instead of what isn’t’. They’ve taught me that life’s journey is unpredictable; that everyone trips and falls; what’s important is not that you fall but that you get up. And I’ve taught them about the mindful awareness of being in the moment; that yesterday is history, tomorrow is a mystery, but today is a present; a gift to be appreciated. These responses reminded us of what many of us have learned; that our pets (cats and dogs and for some of us horses) are always in the now of life; in the moment. Thanks again Allison Jo for this share. I am always appreciative that this site is informative; insightful; compassionate. Ruth Geller.

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