My wife will never understand my illness. She hates the diet we are both now on, because we cannot afford for her to eat the way we used to while also funding my “keep MS at bay” diet. She will most likely never get into yoga and meditation as much as I am and will not want to accompany me to workshops or retreats. I will need to get used to practicing in the closet, alone. The argument we had two nights ago around me not wanting to go out and do the things I used to do, will probably not be the last of its kind. I don’t drink, can’t stand loud places and can’t seem to last staying up past 10:30. I cannot eat a single thing offered at a restaurant and somehow ordering plain fish or meat with vegetables just does not seem to do it for either of us. It is missing the element of adventure that I know she is missing. We are strapped for cash. She wants to spend money on what we used to- adventures- I want to spend it on medical treatments. Treatments that are not covered by insurance and cost $165 a pop, like Rolfing, cranial sacral therapy and magnesium IVs. We are both caught in longing for the past and fretting over the future.
In seeing how my being sick all of the time affects my wife, I attempt to do things that I know will make me feel worse. I take a sip of wine because she insists I’ll love it. I stay up late because she wants companionship. I eat out and deal with the stomachache and fatigue that lingers for days afterward. And then I secretly resent her. “She doesn’t understand me,” I tell myself. “She doesn’t even know what it feels like to have a headache for longer than an hour, let alone seventeen years.” And these sour thoughts make me feel worse and the worse I feel, the nastier I am to her.
My fear is in the admitting that I am not, nor will I ever be, the person I once was. We are told to not think of MS as who we have become. It is just something we have, not something that defines us. But it does define me. My existence has completely shifted towards management of my pain and symptoms. I spend a third of my day on it. That is more time dedicated to illness than any other single thing. Including the rest of my person. Including my wife. No wonder she misses me.
The challenge for me, and maybe for many of us, is to insist that I am worth the care and treatment I give to myself. So much so, that to get caught up in letting others, even our most beloved, sway us from what we know to be right for us is seen as a setback in self-care. It is my own insecurity about the amount of time and money I spend on me, and the fact that I am now on disability and only bringing in half of the income I used to, which causes me to feel shame. Shame that plays out in trying to placate my wife in what I imagine she desires. Truth be told, my wife doesn’t really care if I drink a glass of wine with her and she doesn’t care if we are out dancing at some noisy club or if we are dancing in our living room. She may be nostalgic for the days that I was a dancing queen on the floor for hours on end, her spying on me from the corner, but what she really wants is to share in joy with me.
I have a large supply of that. And love too.