My caregiver speaks the language of MS as a resident, not a tourist
This National Family Caregivers Month, I sing the praises of those who help me
Like a lot of people disabled by a chronic disease, I don’t do well with unsolicited advice. The kind that suggests there is something I can do about my disease, that I’m not doing enough, not looking hard enough for a solution, that they would do better.
I’d prefer they just keep all that to themselves. For the most part.
My wife is the primary exception. She doesn’t have multiple sclerosis (MS), so she might not understand every aspect about what I’m going through, but after 16 years of marriage — 11 since my diagnosis — she understands enough. I can’t say I’m always grateful for her advice at the time she is giving it, but she is one of a few people I allow to criticize or advise me.
The Catholic bishop, Robert Barron once said, in part, “Criticize somebody precisely in the measure that you are willing to help him or her deal with the problem you’re raising.”
My wife is my caregiver and has the right to criticize me, or to tell me to try harder, because, unlike a stranger or casual acquaintance, she is actually there to help me try. She also knows better than anyone but me when I’m spent or what motivation to use if I’m not.
Learning the language of MS
Living with MS is sometimes like speaking a foreign language. I’m not exactly a native speaker, even though the genetic predisposition for MS might have been there, I wasn’t born with MS, as far as I know. Still, I’m the one with it, so I learned the language of this disease first and am more fluent.
My wife picked it up from me and had to rely on me to teach her. As this is a special language that can only be learned by immersion, rather than from a book or in a classroom, she had to be willing to learn it and I had to be willing to share it. I wasn’t always very good at that.
It’s tough to help someone if you don’t speak the same language. It’s even harder if one person in the relationship isn’t committed to learning it or the other isn’t willing to teach it.
When you don’t know a language, the impulse is to say it louder and slower, like a tourist. My wife isn’t a MS tourist, but healthcare providers are MS tourists. I don’t mean that disparagingly, though. They know the language better than most, but mostly speak it in phrases as if from a guidebook. The very best ones know this, and also know to advise and criticize only as far as their ability to help goes.
Enough with the awkward metaphors for now. November is National Family Caregivers Month and that’s my focus for today. I am well cared for because my wife, my kids, and select family and friends care for me. The measure that they are willing to help me through my life with MS is beyond comprehension.
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.
About the Author
Trish Nafotz
As usual, you hit the proverbial nail right on the head! I liked that comment.
Benjamin Hofmeister
Thanks Trish!
Ian R
Ben,
You’re a day late in posting! I thought that you’d taken my advice and moved to a monthly post.
I’m not one to give advice, but you could try a bit harder / push yourself a bit more.
MS is boring, so here’s a non MS story from the UK which may be of interest to you (as a former military man). I’m sure these imposters exist in all countries.
https://www.aol.co.uk/news/fake-admiral-takes-centre-stage-135340828.html
Benjamin Hofmeister
Hi Ian! You know I'm terrible at taking advice. I was delayed by one day this week because of the Veterans Day holiday here in the US. I didn't have a column recently because I had to spend 4 days in the hospital with aspiration pneumonia. Another part of MS that I had hoped to avoid.
Ian R
Ben,
“because of the Veterans Day holiday here in the US. I didn't have a column recently because I had to spend 4 days in the hospital with aspiration pneumonia”
Some lame excuses. Up there with “the dog ate my homework”. As an ex-servicemen, you’ll be used to the “fail to plan, plan to fail” quote.
If I was your commanding officer, you’d be marched out of the base. You need a rest soldier. Take 3 months off and resume your posts (on a monthly basis). I don’t want to see any more Forest Gump posts “MS is like a box of chocolates…”
Have a good Christmas.
Benjamin Hofmeister
Well, it's certainly not like a box of chocolates. It's more like the box I mailed back to cologuard last year.
Most days, I feel like a shark. If I ever stop swimming, I'll sink and drown. I just don't know if I'm ready for a break yet. I know it's coming whether I'm ready or not, but there's still enough Army in me to think that I haven't earned it yet I suppose.
I am writing down my Memoirs from my years in the army and I have to put down the one time I mixed with British Military in Afghanistan.
It was definitely a case of, we're both using English, but somehow we're not speaking the same language. I now know that when a British officer slaps his knees, says "right!", and stands up, that means the meeting is over and the annoying American medic should stop asking questions.
I also know that when his Scottish sergeant major has a quiet word with me in the hallway and calls me a weapon (among other things), he does not mean that I am Sharp, Keen, and perhaps a little dangerous.
Ian R
Ben,
Glad to hear that you met members of the British Army. The British class system is still very obvious in the British Army - Officers v squaddies.
You’ve passed 150 articles so I’ve asked the head of the US medical corps to issue you with a special medal. He wants you to take a six months break and take a vacation in Hawaii. They need more medics so need you to pass the Army medical. Ditch the Thanksgiving turkey and get yourself on the rowing machine.
Heather Buckridge
That’s a great illustration! Thank you!
Benjamin Hofmeister
Thanks Heather! And thanks for taking the time to comment on it!
Shelia Hofmister
Speaking as her mother-in-law, you have the best caregiver in the world. God blessed you with a "special forces" woman to match you. She is mothering exceptional boys (you included)
Benjamin Hofmeister
We are pretty exceptional aren't we? LOL