I’ve had MS forty-odd years. Before anyone feels sorry for me and says “You’re so brave, you cope so well!” Question: “What else do you want me to do?” Even with MS I have quite a good life; I go to the theatre, I’ve just seen The Drifters and I’ve seen the new movie ‘Yesterday’. I have good holidays, enjoying cruises and good weather and hopefully one day I will visit Nashville. I enjoy sport and I understand the off-side rule. All of this from a wheelchair. I don’t resent losing the use of my legs because I don’t let it stop me living.
When you see me in the street or you visit me, I hide the bits of MS that are unspeakable. I try not to let you see me peeing through a tube because my bladder packed a suitcase and left many years ago! I have daily Carers who come in to my house and help me dress and I send you out for a walk whilst they take me into my bathroom ‘to make me comfortable’. Sometimes, and I can’t predict when, that ‘comfort break’ might not do what it’s supposed to! Then later, when I’m least expecting it and for no good reason that I can determine, things happen in the ‘code brown’ department. I don’t usually know it’s happened and by the time I’m going to bed, well…you can imagine.
Years ago, two people fell in love and married. The day was sunny with a breeze in the air, but not a whisper of MS in the wind. Carry forward thirty years, with two adult daughters (and being at the business end of childbirth is no preparation for what’s to come) that young couple have the hurricane of MS in their lives everyday. Cleaning up a spouse after ‘code brown’ wasn’t in the marriage contract, it makes ‘for better or for worse’ seem a game of poker.
My feelings of self loathing and disgust while my husband attempts to return my dignity to me, hiding his revulsion, are in stark contrast to how I want to appeal to him. I’m still a woman, I still want to be feminine and desirable. I don’t want to be ‘cared for’ by my spouse. If this had happened whilst my Carer was with me we would’ve dealt with it calmly and I would still feel attractive because they wouldn’t make me feel unattractive. He isn’t revolted by me but I don’t want him to have to do this. It’s not fair on either of us.
What I want to know is, where is the support for partners who find themselves in this position? It’s not a marriage guidance thing, is it an MS charity thing? Is it someone’s responsibility to divert unpalatable truths? They might not happen to all MS Warriors, but let’s not pretend otherwise. Where are ‘our’ support groups? Can we get forums together to talk about the dirty reality of MS?
