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.