Thursday, September 20, 2012

Choosing…

Marie Cooper
Writer, MS Renegade

This month is the seventh anniversary of finding out I had multiple sclerosis. I was, still am a little, stunned. With incredible irrationality, I was certain that I had already been through enough hard stuff, so I shouldn’t have to deal with any more. I lost an eye in a childhood accident. My husband died suddenly at 40. We had four children and I hadn’t worked full time in 15 years. I worked three jobs at first to keep our heads above water. Over the next decade I worked my way to a successful and lucrative career. This, surely, was now my time of reward for surviving all those struggles. Right? 

Well, as we all know, life doesn’t work that way. There is no cosmic balance sheet of adversity vs. good fortune. Sometimes a lot of good things happen, sometimes a lot of bad things happen. I was just facing another bad thing. But I didn’t want to, darn it.

Initially, I could not even say the words “multiple sclerosis.” I think part of me believed if I refused to acknowledge it, it would not exist. And I certainly would never be one of those crippled ones! I continued to function at top speed. I was a department director at a large hospital, on call 24/7, working 12-hour days. Taking care of a big house and two children still at home. One weekend I cleaned the house from top to bottom, painted all the trim and molding in my bedroom, regrouted the tile surrounding the tub in my bathroom – and landed in the hospital with a full-blown relapse. So much for MS Lite.

It was the beginning of a downward spiral. My high-powered career began to crumble. My life began to crumble along with it. I was getting sicker and sicker. Loss mounted upon loss. I became consumed by bitterness and anger.

My endlessly patient therapist provided support, encouragement and idea after idea. Mindfulness meditation, plain old meditation, prayer, literature focusing on acceptance and gratitude, books on embracing the imperfect self, affirmations and everything else she could find on coping with MS and depression.

Meanwhile, the MS was progressing and emotionally I was a furious mess.  This past December I was physically unable to even get myself to her office anymore. Refusing to give up, she offered to call me once a week and even come to me occasionally. I was devastated by my deterioration, being homebound and developing lymphedema, which has grotesquely distorted my legs and feet. Not to mention dealing with relentless, crippling pain, weight gain, immobility, skin breakdown. In the meantime, I wasn’t going to church, either. The effort it took was too monumental. My spiritual life fizzled out to almost nothing. Everything I had loved and enjoyed was slipping away. I had had it. Enough, I kept thinking, enough. ENOUGH!!

Slight glimmers of my old, fighting self occasionally bubbled up through the fog of misery I had wrapped myself in. The person who always got back up when knocked down, the person who seemed to be only a faint memory, was refusing to go away. But I didn’t want to fight any more. Full of resentment, I was tired of picking myself up.  

But that spark just wouldn’t die. An old friend from high school unexpectedly stopped by one day. When I tell you I looked like the wrath of God, I am not exaggerating. I had zero standards left. Uncombed hair, shabby, stained clothes, no makeup—it was as bad as it gets. I think I might not have smelled too good either. I was so mortified, I wanted to disappear. But he pretended not to notice. He sat with me, talking a blue streak, making me laugh and then making me cry. Pray, he said, just pray and when you can’t pray, just say “Give me strength” over and over. I had been getting this message all along in so many ways, from old friends, from virtual friends online, from my wonderful therapist, but sitting there with Albert, my kind, accepting, compassionate friend, I grudgingly conceded. I knew then I was going to choose to pick myself up once again.

I still HATE this disease. Always will. I will always miss the things it has stolen from me. And I will always be angry about the losses. But, for my own serenity, I am making more of an effort to choose to modify the anger with some degree of resignation. I will never accept having MS—it is unfair and horrible and it just stinks. But I have to live with it and my choice is to live as well as I can. To not make the effort feels like a slap in the face to all the people who love me and give me credit for being braver than I really am. The Black Moments still come. But, with a lot of help and a lot of effort, sometimes in increments as small as one minute at a time, I am trying to choose light over darkness.


For additional information and resources – including referrals to therapists professional in your area – call an MS Navigator at 1-800-344-4867.  























 

26 comments:

  1. I have been having a lot of black moments lately, and although it's never good to hear that someone has had/is having a hard time, I'm always encouraged by pieces like this because it shows the triumph of the human spirit. You really can get through anything, you just have to *want* to. Thank you so much!

    ReplyDelete
  2. Great article. I am actually quoting you on my FB page!

    "There is no cosmic balance sheet of adversity vs. good fortune. Sometimes a lot of good things happen, sometimes a lot of bad things happen."

    ReplyDelete
  3. All I can say is "Cymbalta". That's what really helped me!

    ReplyDelete
    Replies
    1. That made me laugh! Amen. Drugs can be a very good thing indeed. lol

      Delete
    2. I'm glad you got a laugh out of that, because I could not talk about my MS at all without crying, it got really old! Once I got on the Cymbalta, it helped my mood and my feet. I am so glad not to walk around in the state I was in. Now I exercise as much as I can, and love feeling like myself again. Thank you for sharing your story, I hope your feeling better now, and be well!

      Delete
  4. Having MS is so very awful - good for you for moving past that "low point".
    I tell my husband, "just keep swimming, just keep swimming". (Dorrie from Nemo)

    ReplyDelete
    Replies
    1. Carrie, that sounds like a variation on "Give me strength". Whatever it takes, right? :)

      Delete
    2. Exactly - and some days it takes a lot more than others. You never know what will happen next. We are wishing you some "smooth sailing".

      Delete
  5. I always want to answer every person individually who takes the time to leave a kind message, but I just can't keep up with them without starting to sound insincere.

    Please know I am SO grateful for all your supportive words and so sorrowful for your struggles. You all inspire me and you are all in my prayers. :)

    ReplyDelete
    Replies
    1. I wish I had your strength. It's only been a yr that I have know. But 9 yrs undiagnosed. Thing are getting so bad so fast and I feel scared and alone. I was doing a lot in the beginning and just feel like I can't do anything anymore. Everyday I feel horrible. But I do my best for my kids and fiancé but sometime feel guilty it's not enough. I will remember what you said and pray I get there. Thank you for sharing

      Delete
    2. I wish I had your strength. It's only been a yr that I have know. But 9 yrs undiagnosed. Thing are getting so bad so fast and I feel scared and alone. I was doing a lot in the beginning and just feel like I can't do anything anymore. Everyday I feel horrible. But I do my best for my kids and fiancé but sometime feel guilty it's not enough. I will remember what you said and pray I get there. Thank you for sharing

      Delete
    3. Hang in there Heather. {{hugs}} I will pray for you too.

      Delete
  6. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  7. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  8. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  9. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  10. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  11. I thought I was reading about me! Until a few months ago,I worked 60+ hours/wk as a nurse manager. The more my symptoms progressed, the harder I pushed myself. I think I believed I could outrun the disease. I was literally dragging myself to work until one day I simply had enough. Thanks for your post and know you are not alone...

    ReplyDelete
  12. I always try to find the answers to my questions but I always end up at the begining of my journey with MS and you know what? I rather think about who I was before MS and not after. "Stay strong"

    ReplyDelete
  13. I always try to find the answers to my questions but I always end up at the begining of my journey with MS and you know what? I rather think about who I was before MS and not after. "Stay strong"

    ReplyDelete
  14. It's been seven years for me too. I was diagnosed Sept. 19, 2005. I have it mild considering though but I know every moment of every day that MS has taken pieces of me and is molding a new perspective on life for me.

    I was fortunate at the time of diagnosis that I was studying Gods word every day for over a year at that time. I was spiritually strong when the disease reared it's ugly head and tore my world apart. I truly believe it was God's plan to be there for the fall and pick me up if I would just listen with my soul and seek him out that whole year before. I was able to say to myself, okay, this is happening and I can only handle surviving the flare up one day at a time and I handed everything else over to God.
    Every time I read your blogs, I want to give you the warmest of hugs. So here is my virtual hug to you and all other MS'rs meant in the warmest way. :)

    ReplyDelete
    Replies
    1. Thank you and {{hugs}} to you too, Joyce. :)

      Delete
  15. I'm Paula Milton. David, my husband and I have been traveling the MS Journey for over 10 years now. He is the patient, and I am the wife - RN - caregiver. 95% of his disabilities are cognitive. It's like, "lights are on but nobody's home. His personality is almost non-existent. He no longer initiates conversation. Affecting him almost like Alzheimers disease. So sad. It's tough, but I just keep swimming. Thanks for your encouraging words. I'm writing a novel (memoir) about our journey. It's called "JOURNEY THROUGH MS, and I don't mean Mississippi." Writing has helped me to cope with the losses we've encountered as we are traveling our journey. Thanks again.

    ReplyDelete
  16. Having MS, I can relate. I struggle to remain upbeat and have to tell myself I'm never going to be a bitter person. I know how good my life is, even with its bitter downs.

    ReplyDelete
  17. Diagnosed 9/11/12 and am in early stage of evaluation and treatment, at 50 years old the thought of having MS is scary but after every other obstacle thrown in my way prior to finally finding out what has been slowly driving me insane for past 10 years the relief of finally naming the problem overwhelms the fear. I am hoping with all the advances in treatments and helpful therapies to get a handle on coping and once my doctor and I get my regime down that MS will just take it's place as another daily fact of life that can be dealt with without it overshadowing every other aspect of living somewhat normally.

    I am praying for you Marie, your hard road is one I hope not to travel but if I do hope that my support system of family and friends stick with me like yours have done!

    ReplyDelete