Did you notice that in her address to the Democratic National Convention, Michelle Obama spoke about her father (read here for full story), Frasier Robinson? He lived with MS, walked with a cane and supported the family.
“My dad was our rock,” she said. “Although he was diagnosed with multiple sclerosis in his early thirties, he was our provider, our champion, our hero. As he got sicker, it got harder for him to walk, it took him longer to get dressed in the morning. But if he was in pain, he never let on. He never stopped smiling and laughing – even while struggling to button his shirt, even while using two canes to get himself across the room to give my Mom a kiss. He just woke up a little earlier, and worked a little harder.”
You can read her entire address.
Ms. Obama put a very positive spin on what many would find a tough situation. Not that I blame her.
How would it have sounded if she’d complained, “I hated listening to my father drag those canes around the kitchen, watch him sit at the table unable to help with the kitchen dishes and yell at my mom in frustration.” I mean, her husband is running for President.
At least she didn’t say her father never complained. I cringe when I hear that. It promotes the stereotype of ill person as saint or hero. Yes, it’s a better image than ill person as malinger. And, no doubt, his accomplishments in the face of illness and disability were admirable. Given the stuff of his daughter exhibits, it’s not hard to believe.
But please. We all have to vent and gripe – healthy or not. Having trouble with buttons can be pretty irritating but dragging yourself to work and elsewhere on canes isn’t a picnic. Nor is living with a chronic illness that can be unpredictable as MS is.
I was reminded yet again this past week of the chronic aspect of chronic illness. It was our first vacation all summer and I needed it. I was worn out . . . from working hard, parenting my own children and taking care of my sick parents. I needed to get away and sit by the ocean with a book.
But the first day away, we got the call that my mom (86), who has lived with congestive heart failure for 13 year and feels weak, dizzy and crummy every day, broke her hip, needed surgery, hospitalization and rehab. Dad already is confined to a wheelchair (neuropathy from diabetes) and is in a nursing home.
I’d lived with severely debilitating chronic illness for 15 years when my colon was removed and I started a new drug therapy for multiple sclerosis. I’m not “healthy” but it’s not what it was in those years. The year of my own surgery, my mother’s second heart attack left her bedridden and Dad started his decline.
I believe Michelle Obama’s description of her father. I don’t know what my children would say about what it’s been like to live with me and my illnesses — but I sure hope it’s even a little close to that. I do know I’m not as patient with my parents as I wish I were when it comes to the chronicity of their illnesses. I wonder if it’s because of living with this for so long.
Do you struggle with the chronicity of illness? Do you find you have little patience when another person’s illness holds you back or takes up your time?
Rosalind aka cicoach.com
DiAnn Levy says
Boy, do I hear you. I have fibromyalgia, myofascial pain syndrome, chronic fatigue and arthritis. I also work a full time job (high stress) and take care of my 88 year old mother who has advanced vascular dementia. I can take a sick day(s) at work if I’m not feeling well, but taking care of my mother never stops. In fact I’ve been “caregiving” for the last 11 years – first with my dad and now my mom, and without any help. My mother is extremely demanding most of the time. Even when she’s not acting like a 3 year old, there are days that I just don’t want to or can’t physically deal with her and her illness which is progressive as you know. The end of my long work day is particularly difficult. Sometimes I tell her that I’m hurting or not feeling well. She’s sympathetic, but still wants her dinner in bed or whatever it is that she’s demanding at the time. I try not to complain to my coworkers or my mother, but there are days that I just can’t help it. So I try to find balance by letting people know when I am not well enough to do something or if I need to rest, and keeping the less challenging days to myself. It helps that I have a couple of really good friends that will listen to me whine. Again, I try not to make that a habit also.
My father was like Michelle Obama’s – never complaining despite his physical pain and othe problems – yet, always trying to do for his family. He was my hero and my shining example.
DiAnn in Pittsburgh
Christina Gombar says
It was great to hear Mrs. Obama praise her chronically ill father. But
I can’t help feeling for all those MS-stricken fathers who, despite the best will and attitude in the world, couldn’t keep going into work.
There seems to be only one acceptable public story about living with a chronic illness: Overcoming it. But the reality for some people is that it’s just not possible.
Anne Finger, a polio survivor, explores this issue at length in her recent memoir, Elegy for a Disease, a Personal and Cultural History of Polio. Every time she heard of 1956 Olympic runner Wilma Rudolf as having “overcome” polio, the crutch-dependent young Anne was filled with shame: “Whenever I heard that, I felt a sense of shame. If she could do it, why couldn’t I?”
It’s important not to burden others with our illnesses, but it’s also important to get out the truth that there are a variety of ways of honorably coping with physical limitations. Full funcitonality isn’t possible for all.
Rosalind Joffe aka cicoach.com says
That’s a good point, Anne. But once again, it’s the story of life, isn’t it? There isn’t a one size fits all model to follow. We do what we CAN. And that’s more than good enough.
Maureen Hayes says
WOW, did you ever hit a nerve for me. I live with, and care for my 75 year old mother. To be fair, she spends a good amount of time helping me when I am sick too, but it gets wearing to have to deal with someone else’s illness when you have so much of your own. Recently my mom was hospitalized for almost two weeks. I had to take care of her (because the hospital wasn’t!), be her advocate, keep things running at home, and somehow manage my own health issues. I love my mother very much, and I know she appreciates all I do, but there were times I was short with her, and it had more to do with my own frustration than her. All I can say is I try my hardest, and when I fall short, or am short tempered, I sincerely apologize to her. I think that the issue of again/ill parents is a big one for all of us, but to those of us with chronic illness it can be overwhelming. Thanks for saying what a lot of us feel, but feel we have to keep to ourselves all too often!