She's a twenty year old college student whose mother was diagnosed with multiple sclerosis just shy of five years ago. I asked her to tell me about MS from her perspective.
She recalled her first thoughts when she heard about the diagnosis, “Oh, well.... this really sucks.” Up to that point, she just thought that mom was weak and run down. She figured it would pass. Even with the diagnosis she didn’t yet fully understand the ramifications.
In the years that followed, she learned about MS from what her mother told her, and from some reading on the subject. But she learned far more through her own observations. She explained that it was easier to wrap her head around what her eyes could see. The physical, emotional, and financial toll did not escape her notice.
Last year, a friend mentioned a story about someone in a nursing home because of a particularly dreadful case of MS. It was a difficult moment, but she shared the news that her own mother has MS.
She is all too aware that being female and having a parent with MS increases her own odds. There is a level of fear in her heart, but she makes a concerted effort not to dwell on those details. “I can't worry about that now,” she says quietly, and I wonder if she can pull that off. At this point in her life, her slender shoulders bear a lot of weight.
When asked about advances in research and her thoughts about improved treatments, or even a cure, she expresses doubts about the foreseeable future. It's not that she's a pessimist, it's just her way of keeping expectations in check.
It's not all gloom and doom in her world. She openly jokes about MS as she answers my questions. As long as she holds on to that sense of humor, she'll be just fine.
“What do you want tell the world about MS?”
There’s a moment of silence while she ponders the question. “I can’t tell them. It's so different for everyone that it’s something you’ve got to see for yourself.”
I thank her for agreeing to speak with me and sharing her feelings about loving someone with MS.
She calls me sometimes to see how I'm doing. "How are you? Are you walking okay? Can you drive?" She listens to my my answers with genuine interest before catching me up on her life. "Maybe you should rest now."
What goes through her mind, I wonder, when she hangs up the phone. Does she worry, as I do, when she has a klutzy day, or when her foot falls asleep? I should have asked her that, I guess. But I can do that next time she calls.
She's my daughter, and we're in this thing together.
Published On: December 04, 2008