The dance isn't over yet
I am often told what a shining example I am as a person in a wheelchair with a chronic illness. This leads me to wonder—compared to what? To whom? The idea that this illness somehow transports me into the role of the ‘suffering Christian’ or, worse the poster child for MS makes me shake my head. Would that that person be in my head for a few minutes, or go through a day with me, they would see that I am no different from any other person. My challenges are more visible and may seem comparably more daunting—but I am still just me as fallible as ever.
What then, do I want people to see? How do I want them to respond? For, undeniably, I do have an illness that is unrelenting; I am fundamentally changed in lifestyle from as little as two-years ago. Disability by its outward reminder of fundamental difference can and does create a barrier. You can’t look at me and not see it.
One of my dear friends will call me up for an evening of Scrabble. She shows up with a couple of cold beers and breezes in. We spend a companionable evening as arch rivals over the intricacies of brown wooden tiles. We may or may not discuss my illness—in a similar vein to any area of her life. While the location and length of our time together has changed from pub afternoons to a quiet hour or two on my couch—I still feel like a friend rather than an obligation. She isn’t visiting the sick friend; she is hanging out with a girl friend.
It is being seen as a person outside of illness and disability that I desire. I am so fortunate to have a ‘village’ of family, friends, and church folk who pitch-in and help me in the day-to-day, the times of crises and in the big projects. I can easily feel sheepish for desiring something more than what I am blessed to have.
The old me had more going on at any given time than was probably wise, when I look back. One program I coordinated at my church replaced me with seven people. My nights and weekends were brimming with my son’s, family, and church activities. I had a fabulous job, as well as gardening, cooking, crafts, and on and on. I went as busy as a humming bird from one thing to the next.
Now, I consider it a big outing if I can make it to the ‘funny food warehouse’ for the monthly trip to fill our pantry. It is one of my good days if I can open a jar of spaghetti sauce (with my electric jar opener) and the bag of frozen meatballs (from Costco) and dump them in the crock pot. I yearn for the days of cooking gourmet meals and entertaining folks. I would give just about anything to be able to spend Sunday afternoon puttering around in my yard. I fight with an aching loneliness and longing for the life that is slipping through my fingers.
How then should folks see me? What then do I want from other people? When my hubbie has to brush my hair, button my blouse, and cut up my meat—how can my heart not cry out for the evenings we used to go dancing? Am I patient or person?
I don’t pretend to have any answers. With MS some days I am so ill that I can only be a patient. Other times, I just want to be a wife, mother, daughter, friend.
I have said many times that on any given day I can’t control any part of the MS, but I can choose how I am in the world—a loved and blessed daughter of Christ who happens to struggle with her life a little more visibly than others. I am not a paragon of virtue or the epitome of noble suffering—just a girl striving to live her life with beauty and meaning.
1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
Philippians 3 7But whatever was to my profit I now consider loss for the sake of Christ. 8What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ 9and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ—the righteousness that comes from God and is by faith.
"7But whatever was to my profit I now consider loss for the sake of Christ. 8What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ"