When MS Comes Calling

family portraitI usually don’t talk about my husband’s struggle with Multiple Sclerosis because we try to keep a positive outlook. But sometime, like this morning, when I found him laying on the kitchen floor and not able to get up alone, the harsh reality of this varmint bites me and says, “I do exist!”

When we married 15 years ago, we promised “for better for worse, for richer for poor, in sickness and in health.” Unfortunately, we got the negative in all categories because of this damn disease. But through it all, Ken has become my hero. He never complains, no matter how hard his life has become. Everyday he deals with a tremor in his right hand, acne from the medication he must take, weakness in his legs, failing cognitive skills, as loss of short-term memory, and debilitating fatigue. I don’t know how he does it. But he does. With a smile and a funny sense of humor.

I know without his upbeat attitude and his ability to laugh at himself, I would have given up long ago. Everybody thinks I’m the strong one, but in reality it’s  Ken who is the rock. I gain my strength from him, and so far, we’ve muddled through this horrible adventure together. When a new disability comes, we creatively compensate for it. We haven’t cried or whined. I over protect him, and he protests that I do. We blaze the trail together  with supportive friends and loving relatives.

We’ve grown to settle for a simple life at home. We make dinner plans or watch a football game with friends. We rent movies and watch them at home. We laugh at our dog and cat’s antics. We find joy in a game of Scrabble. We’re together and that’s what really matters.

I don’t think this disease is a life lesson; instead, it’s just human frailty. We don’t ask, “Why us?” Instead, we’re thankful for everyday.

Where is the message in all of this heartbreak? I have no idea. Maybe someday I’ll have the emotional strength to write about our trials and travels together, but I doubt it. What advice could I possibly give to someone? MS is such a weird disease that no one experiences it the same. Every patient is different. And every caretaker is different. The emotional roller coaster is wild and scary with so many ups and downs, twists and turns you never know what to expect. There’s no logic to it at all.

So, even though it is trite, “we take  a day at a time.”  It’s the only way to calm such an unpredictable beast.


11 thoughts on “When MS Comes Calling

  1. Pingback: When MS Comes Calling | Author Mccloskey Speaks

  2. I have been Blessed to know Ken since he was quite young. His ever endearing smile warms your heart and brings you to look deep into yourself and you wonder….Where does his strength come from? I have a friend who once said she was grateful for having MS because it brought her closer to God. Is that what brings Ken’s smile to his face? I wonder….One thing I do know is how eternally grateful I am to Barbara for being there, looking after him, holding him and mostly loving him as he and she so richly deserve. You are both truly heroes to so many. Thank you Barb, from the bottom of my heart!

    • Thank you, Becky. Love is a powerful force. Those of us who have found it realize how blessed we are, no matter what our life circumstances. Today is difficult because we’re unable to join the family in Chicago for our Christmas. We have gotten just enough snow to make it treacherous for Ken to venture outside. If he should fall, I would not be much of a hero.

  3. Thank you for sharing. I’ve said it before, pain is universal. We all get some though some seem to get more than others. Some is emotional, some physical. Lord help those that get both. After three years with the most debilitating Bells Palsy I’ve ever heard of, I have aquired a great deal of empathy. No one wants sympathy. Like you and your husband, I look for the best in every day. Some days though , you just want to pull the covers back over your head and have a good cry. Then you roll over and keep on keeping on. I too, try to keep silent not wanting anyone to think I’m whining. What I’m trying to do is to inform. We hear about MS but most of us have little clue of it’s emotional, physical, and finanacial impact. You have bravely begun to enlighten us. I could say I understand, but of course, there is no way I can. We are embarrased that we are mostly grateful it didn’t happen to us. When I think of how small my world has become, I think of all the more life threatening things that could have been and count my blessings. Sorry to go on and on. I appreciate your courage in so many areas.

    • Thank you for your comment. I believe that we all must carry our trials as we journey through life. It’s what we do with our circumstances that makes the difference. I must admit that I do not know what Bells Palsy is, but it sounds like another terrible human challenge. My best to you and your family. Keep the faith. — Barbara


  4. I don’t see it trite at all, to take each day as it comes. I see that as wise and valuable, it’s all we have. Your words moved and connected with me and I thank you for sharing. I hope in some small way it gives you some comfort to know you touched another’s heart. Paulette

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