I just received an issue of a publication on MS that I receive quarterly. It's a national publication, widely read, generally somewhat interesting, and a pretty quick read. This quarter's issue focuses on family.
I thought this should be interesting. So I skimmed the main story, got bothered, thought about it, came back hoping I misread it, and was bothered again. To me, here's what the article basically said. MS is a family disease, where family takes many forms (immediate, extended, friends, neighbors, and so on). When a person gets diagnosed with MS, it's not really a "person with MS." It's a "family with MS." Adjustments are made by family members at all times, as family members other than the person with MS take on increased roles and responsibilities. Even though they do this, they don't want to be labeled as "caregivers." Families want to be involved... they want the neurologist to listen to their opinions at appointments. Whenever something happens to the person with MS, it's a team thing. The family adjusts based on what the person with MS can or cannot do.
So that's the summary. People may wonder what bothered Beth in this. There's a lot of good - there are resources to help families, support groups for families. Families are teams working together.
But what got to me about this article is there seemed to be a split. There are articles on MS. There are articles on people with MS. And there are articles on families of people with MS. What I noticed was it didn't seem that the person with MS is necessarily part of the team, or perhaps that was a sidenote (ie the person with MS should communicate their needs so the family can figure things out). Families are adjusting. These families felt they were doing more, which basically seemed to indicate the person with MS was doing less, and less, and less, as time went on. That may be true in some cases - that the person with MS is doing less. The family team didn't really seem to include the person with MS. It just seemed - is the person who wrote the article part of a family team? Did they see the gaps in this article?
Since I'm a person with MS and am part of a family where the team is everyone - immediate, extended, neighbors, friends, colleagues, church community, anyone I meet... I have thoughts. I was diagnosed with MS when I was single. My parents were in Colorado and I was in Ohio. I went to Kenyon College which served as my family at that time. As a family, we discussed how I could remain involved in running, without running on the team. So I wasn't running but I helped as assistant coach.
Fast forward many years to today. Now my husband, daughter, and I live in Colorado. I have lesions on my spine but not my brain, so MS impairs my ability to walk for the most part, and is exacerbated by heat. So, we all know I can't pack the car for vacations. It's easier for someone to retrieve my walker or wheelchair from the car than for me to do it, but I can do it. Essentially, I'm limited physically. But I'm part of the family and though my husband does the physical stuff, I do many things. I figure out my daughter's extra curricular stuff and there's a ton of it. I may not play soccer with my daughter, but we play plenty of games. And check this out - I work! Unfortunately, the people with MS featured in the article didn't work. Most people with MS do work. So we have 2 parents working full-time, and juggling everything together.
If I get hit with an MS event, which hasn't happened for over 2 years due to Ampyra, I think... well, when something did happen I suppose I would warn everyone to stay clear, I apologize in advance, and I'm going on steroids, an emotional roller coaster.
Beyond my husband, daughter, and me, there's a lot of people who are the "extended family." But I hope they don't feel separated from me, doing things not in conjunction with me. There are awesome people at work who help me when needed, and who cheer me on. At church, people help a lot and because of that, I'm a part of things. It's team-based in that we talk about things as simple as "would you like me to get you some coffee?" (Of course, always!)
I didn't like the article I read. I suppose I've now created my own article on how I think family with MS functions.
There's another thing or 2. Yes, the family is diagnosed with MS, and the family is a team, definitely. But the person with MS - that's who goes to bed with it every night, and that's who wakes up each morning not knowing if they will be able to walk that day. So, the person is diagnosed with MS. This is difficult to explain. No matter how much "team" there is, at the end of the day, it's the person's battle. I think, for me, that can be where faith plays a big part, but since that just hit me, I can't explain the faith connection either.
The last little thing is terminology. So often in these articles and when people talk, they use "dealing with" fill in the blank. Instead of "dealing with," I think we should be "living with." I am, right now, living with a jumpy right leg with a laptop on my lap. It's comical in a way - as the leg starts its spasm, the laptop hops around my lap. The jumping goes for about 6 seconds and then there's a break of about 25 seconds. I live with this a lot. I suppose I "deal with it" too, but then "deal with" seems broadened to the point where we're "dealing with" getting a cup of coffee for Beth. (you should smile here, if you know my coffee addiction!) If you read articles, keep an eye out for that terminology.
Jumpy leg and all, it's time for me to get up and walk to stop the jumpy leg.
In conclusion then, as people know others with MS, consider that MS is a family disease to an extent. It's a family disease where the family, inclusive of the person with MS, lives with MS. And at the end of each day, the person with MS goes to bed alone with the disease. And then I pray, so really, I'm never completely alone.