Ben Hofmeister shares the experience of living with primary progressive multiple sclerosis (MS) while raising three children. He talks about his transition from Army life to navigating fatherhood with a disability, the importance of honesty and self-care, and how explaining his condition to his kids has helped him connect with others who are newly learning about MS. Read his column, Chairborne.
Transcript
My name is Ben Hofmeister. I didn’t start off to be a multiple sclerosis writer. I was one of these guys that, after two years of college, did not know what I wanted to be when I grew up. So I joined the Army.
Right at the end of my time there, I started noticing that I was falling, stumbling a lot, having some balance issues, and it went undiagnosed for at least five years because I had an ankle injury that needed to be addressed. I had a knee injury that needed to be addressed. I just thought it was one of those.
It eventually came out that I had multiple sclerosis, and that was something I had almost no knowledge of. I knew one person that had MS and they seemed fine. So I thought that was the worst that was going to happen to me. Maybe I would have a limp.
Well, it turned out I had primary progressive MS, and now — 11 years post-diagnosis — I’m in a wheelchair with very limited use of my arms. Also during that time, I decided to get married, to have three children. My wife: she knew me pre-diagnosis. The children: it almost seems like they’ve never known me any other way.
The smallest of the three, who’s only 9 years old at this point, barely remembers me being able to drive. They’ve always known me as having some sort of deficiency from the disease.
I often think of the difficulties explaining it or explaining the symptoms of it to other adults. And what I found is, by learning to put it in terms a child can understand, I can put it in terms that even I, 11 years ago, barely knowing what it was, can understand.
And I’ve found that a lot of people who have almost no knowledge of it, that’s almost the point that you have to start with. In the Army, if you were learning to do something, everyone called it crawl, walk, run, or see one, do one, teach one. And with a lot of people that have no knowledge of the disease, you’re always in the crawl phase. And I feel like I can explain it better to peers, because I learned how to explain it to my own children.
Balancing life as a parent and as a person with MS is nearly impossible. Their needs as children looking to a parent begin and where my abilities end, I occasionally have to prioritize my own health over family responsibilities.
Often, as a parent, you feel like I would give up anything or do anything for my kids. It takes looking at yourself through, almost like realistic, or another person’s eyes, to see that the best way I can take care of them is to be honest with myself.
I have three boys. They have multiple events and there are times now: I’m going to have to sit this one out, because if I try to push and overextend, I’m going to make this evening miserable. Not just for you. For me. For my wife who is the caregiver, because she’s going to have to put all of you to bed and then help me transfer into bed and put up with an almost nonfunctional person the next day.
There are probably occasions where I know I’m going to pay for a certain activity the next day, but there are certain times when it’s worth it. There are also plenty of times where, if I let myself get worse than I feel now, it’s going to be worse for everybody.
And I have to prioritize self-care, which often seems selfish, in order to be the best carer for people that are not myself.
