The past month has been spent giving you an overview of how Mandy was diagnosed with Multiple Sclerosis. Two things happened upon hearing her neurologist at Johns Hopkins utter the words “This is MS” while examining the MRI films of her brain. First, there was a feeling of exoneration. We weren’t crazy. All the inexplicable on-and-off-again symptoms that were plaguing Mandy had their roots in an actual, true-to-life disease. Then the other shoe dropped and we froze. Though we were afraid to say it aloud, we each thought the same thing – ‘what now?’
Slowly, we began to make changes to our lifestyle. I was running a start-up technology company that, for the most part, relied on out-of-state telecommuters and sub-contractors responsible for designing our software systems. My office was nearly an hour away from the house, but since most of the time I was the only person there, I started to work from home. First just a few days a week, but eventually finding me at the office was a rare occurrence.
Mandy just wasn’t able to work full-time any longer. She was still in the early stages of the disease, at a time when the loss of feeling in her legs and arms would nearly incapacitate her. Since then she’s gotten much better at dealing with this when it happens. She found a part-time job as an office assistant. While it was a good job in that the gentleman she worked for was most accommodating when she would suffer an MS bout, it paid much less than the jobs she held prior to being diagnosed.
So while Mandy slowly made the mental adjustment required when going from full-time to part-time worker, I found myself entering my own period of adjustment. My wife is very independent and, as such, was determined that MS wasn’t going to beat her. Instinctively, I knew it would be best not to squelch that independent streak. Instead, I found myself watching her more carefully than ever before.
If I saw her having trouble with something, I would just quietly step in and give her a hand... then immediately back out again. Mandy’s smart. She knew what I was doing, but neither of us really discussed it. Over the next few months, I slowly started doing small chores, many of them before Mandy even woke in the morning. This worked better since watching me do what she considered to be ‘her’ chores would depress her, even though she would, if asked, admit that she appreciated the help.
Nowadays it’s different. We’ve come to grips with MS and are quick to shed our MS-related roles when symptoms are at bay. But the moment I observe Mandy’s tell-tale shuffling gait or see her normally perfect posture begin to relax, I know that MS is right around the corner.
Change can happen fast, but real, lasting change happens more slowly because it’s got to get inside of you... become a part of you. When we got married, we did so within two weeks of Mandy accepting my proposal. Why? Because at the time she was not in an MS episode and we wanted to take a honeymoon. There’s almost no way to reliably make long-term plans when one of you has relapsing-remitting MS since you never really know when the disease is going to flare up.
Of course, I’ll temper that statement by saying that MS, from what I’ve seen, is unique in that it’s symptoms are so different from person to person. That’s why it’s hard to write about it; there are readers who will not relate to much of what I say because their MS is so different from what I observe in Mandy.
I said in an earlier post that I am well aware there are many levels of caregiving. But one thing is the same no matter how little or how much caregiving is required in your home. Your lives and your relationship will change. You need to acknowledge your new roles and wear them without playing the martyr. How to integrate your new roles into the relationship, and how to do so without fundamentally changing that part of the relationship that keeps you together, may be your biggest challenge.
Published On: March 02, 2008