Wednesday, August 29, 2012

Far from perfect

Susan Skoney 

If you asked me today what the argument had been about, I couldn’t tell you. I can only remember it took place in the bathroom next to our bedroom and I had just finished three days of steroids. I was the color of a Maine lobster, sick of feeling sick, frustrated that my husband was arguing with me. So, I did it. Looking right at him, I took my precious wedding ring off my finger, threw it into the toilet and flushed. A split second of gratification disappeared quickly as I watched the symbol of our marriage swirl down the drain. That was four years ago, and my naked finger serves as a constant reminder of how MS changed my life and my family’s forever.

MS is the uninvited guest that invades your home, takes up residence, behaves like a terrorist and will not leave. Every family handles it differently of course. Some circle the wagons, pull together and grow stronger as a unit. Some fall completely apart. I think most fall somewhere in the middle—like us. Dealing with MS as a family is so difficult I could cry and some days I do, a lot. When I was first diagnosed my daughter was just starting to walk and my son was in first grade. Other than a slight limp and tingling hands and feet, I was doing very well. But the day after my first shot, Hannah had to go to Grandma’s because I was too sick to take care of her. This should have been my first clue just how bumpy the road ahead was going to get. However, my daughter starts ninth grade next month, my son is going to community college, and my husband is still devoted to us all, except when he is threatening to leave. Let’s hope that’s his way of venting.

When the children were little, we shielded them as much as we could so as not to alarm them. But there were bound to be times we couldn’t. I often wondered what my children were thinking when a nurse would come to give me steroids? Or later on when I would be hooked up for two or three hours getting IVIG? What were we thinking? Looking back, we should have been more direct as it might have made them more understanding as my disability progressed. But who knew I would wind up in a wheelchair? It’s tough when you have to rely on your kids to help you pull up your jeans and get out of the bathroom. Then when you have to put your parent hat back on and demand that “Jersey Shore” get turned off immediately and that homework get finished. Disability undermines authority—at least in my family. We are working on it.

My darling daughter once told me I wasn’t like a real mom. Ouch! I most certainly am a real mom. A mom with MS. To many of us, June Cleaver was a real mom. But can you picture June meeting Ward at the front door with her pearls slightly askew and, after taking his hat and briefcase, explaining she was too exhausted from her MS to make dinner? Of course you can’t. June Cleaver was a make-believe mom with an idealized TV family. MS is a great thief. It steals our personal independence and, if you let it, the relationships that we prize the most. Our family is far from perfect (except for my husband Michael—ask him, he’ll tell you), but with perseverance, forgiveness and a basic love for each other, we gather strength and energy to make it through yet another day.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Learn more about how MS affects the whole family in the Fall 2012 issue of Momentum


  1. Ms. Skoney, it's comforting to know that there are others who have handled MS as 'imperfectly' as I. Other than the looming doom & gloom of 'what will my future be'...I also carry a great deal of guilt. Guilt for not having enough energy to play, cook or get the cleaning done. But more so, guilt for how nasty I've been when tired and irratible. I cry as I read your article and type my response...however will feel a bit less guilt knowing it's part of the 'dealing with it' process and hopefully just a phase. Thank you for sharing your story.

  2. 2012 is the 10th year I will have ridden the BikeMS (used to be called the MS150) to raise funds for and awareness of MS. Reading your post above reminded me immediately of our long time slogan, "This is why I ride." I pray that you and your family continue to share love and blessings in your relationships despite the presence of that "thief" MS in your midst. And I pray that advances that we discover in MS care will help you regain some of the ground you've have to grudgingly cede so far.

  3. I identify so much with this. I spend so many nights crying myself to sleep, feeling like a terrible mom. My house is a mess, which I feel guilty about too. I am moody. I get so frustrated and yet I refuse to share these feelings with anyone. I act like everything's fine until I end up blowing a fuse and then I feel guilty about that. Gotta love MS.

  4. So well written! I wish you could have flushed MS down the toilet, too!

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  6. Susan, I greatly identify with what you've written. My mother sometimes feels guilty that she can't do the things she used to be able to do with ease. She relies on my father, my brother and me for everything. For some reason, she believes she is a burden to us. What she doesn't know is that she's also the glue that holds our family together.