With multiple sclerosis, the right caregiver is everything

There are a lot of things that I’m afraid of. That seems to come with the territory when you have a chronic disease like multiple sclerosis (MS), or when you’re a parent. At the same time, I don’t have any phobias that I’m aware of. To date, I just haven’t encountered anything that overwhelms me with fear to the point that I can’t function.

I’ve mentioned before that I don’t care for heights, but I can overcome that fear if need be. Having an MRI isn’t at the top of my list, either, but given that I’ve fallen asleep inside the machine twice, I doubt I qualify as claustrophobic. I don’t even mind spiders, I just don’t like being surprised by them.

Another common phobia is a fear of snakes, which, as I’m about to relate to you, I also don’t have. Fortunately, neither does my wife.

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We lost a snake in our house a couple of months ago. When I say “we” lost it, what I mean is — actually, blaming someone isn’t that important, is it? The point is, my father-in-law brought a young, gray rat snake to show the kids, we kept him for a bit, and he escaped.

I was sure he’d escaped while his enclosure was outside, so I didn’t look real hard indoors. My wife was convinced otherwise and kept a wary eye out. The kids were the ones who finally found him.

They were unloading the dishwasher, putting the clean dishes away, and griping about child labor laws, or some such nonsense, when our youngest shouted that there was a snake in the cabinet. The cabinet in question was one of the high, above-the-countertop ones, and sure enough, nestled among the glass cookware was the missing snake. He had been known as Scaley, or simply “the snake,” before, but was redubbed Pyrex after being found there.

My wheelchair elevates, but not high enough, so my wife stood on a step stool and retrieved him. She had to use an oven mitt because Pyrex wasn’t at all happy or grateful for the help. If he had any fingers, I’m pretty sure he’d have given us the middle ones.

He stayed with us into the early fall and was returned to where he’d been found before the weather turned cold. He (I never really knew if “he” was a he, because I respect his (?) privacy) was a wild creature, and that’s the right thing to do. It was an experience we’ll all remember, and if there’s an award for caregivers who go above and beyond the call of duty, I’d like to nominate my wife. I’ll bet catching unhappy snakes in high kitchen cabinets qualifies.

Ben with Pyrex the snake. (Photo by Michala Hofmeister)

My wife is my MS caregiver, in case I’ve never mentioned it before, and does quite a bit more than recapture errant reptiles. After the snake incident, someone suggested that maybe she should keep the snake and release me in the wild, but she didn’t, so I know she cares.

I don’t like to face the reality and even dodge writing about it sometimes, but the fact is, I need care. Help is a stranger holding a door for you. Care is something more. It’s a relationship that’s hard to form with someone you already have a different kind of relationship with.

When a stranger offers help, I often catch myself accepting grudgingly, believing I could have done the task myself. Accepting care grudgingly isn’t an option. If you do, or if care is given that way, then it’s not care, it’s just help. Throw relationships into the mix and it just gets more complicated.

My wife is a nurse, so we’ve had to find the balance between family and stranger, and patient and spouse. It hasn’t been easy, and like the lost snake, if I can’t or won’t communicate my wants and needs, it’s easy to lash out at a helping hand.

Communication is key. Seems easy, but it’s not.

Lots of laughter helps, too. We’re getting pretty good at that.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.