The MS Paradox Results in Many Conflicting Feelings
Odd way to begin a column, I know. I suppose I’d better explain myself.
That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it originated, so I don’t feel too guilty about using it for my own ends.
For me, it’s an expression of both gratitude and abhorrence at the same time. For instance, you can be grateful for the spirit in which a gift was given while despising the gift itself (that sweater from your grandmother, for example). It’s a classic contradiction, and while I certainly don’t consider multiple sclerosis to be a gift, it works well to shed light on a phenomenon that I’ve dubbed the multiple sclerosis paradox.
Let’s look at a few examples.
For obvious reasons, I seek the majority of my camaraderie, advice, and emotional support from the multiple sclerosis and rare disease community. The people I interact with in this small community, via support groups, Bionews (the parent company of this website), online forums, and social media platforms, are some of the most wonderful people I’ve ever known, but I wish we’d never met.
Harsh? Yeah, it is. I’m afraid there’s really no way to soften the blow. Put a slightly different way, I’m so happy to be a part of this community, but I wish none of us qualified for it. There’s no animosity intended. It’s just a somewhat painful contradiction, and I don’t like it at all. Then again, I don’t think I’m supposed to.
As another example, my family and friends go out of their way to accommodate my disability, yet they somehow don’t make me feel disabled (a kind of paradox in and of itself). I am inexpressibly grateful, but I wish they never had to do so because I wish I didn’t need any accommodations.
Along those lines, I didn’t plan on it, but I genuinely enjoy being retired at 47. I love being at home with my wife and young children (I should say that more), but I’m not happy that having a disease was what made it possible. I can be a bit of a handful at times, but I think they like having me around, even if they don’t like the reason I am.
Moving on, I have wheelchairs, ramps, ankle-foot orthoses, reachers, an intrathecal baclofen pump, and so on. I’m glad these tools exist. After all, they keep me involved in my own life and the lives of my loved ones. I wouldn’t want to consider their alternatives, but I wish I didn’t need any of them.
I’ve learned a great deal about MS since I was diagnosed (you could say it has my undivided attention), but I wish I’d never heard of it. I like my neurologists, but I wish we’d never met. The research they do is fascinating and fills me with hope, but I wish there were no need for them to do it and for me to have hope in it.
These are just a few examples of the multiple sclerosis paradox. I invite you to leave a comment detailing your own examples. Thank you for reading this column, but I wish there was no reason for you to ever need or want to.
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.
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Comments
jan mackie
I dont understand the paradox! You like some folk who help you with a horrible disease! Anyone with a nasty disease must feel the same….Duh! Meant in a kindly way….Janet
MELISSA
Agree!!
Benjamin Hofmeister
Thanks Melissa!
Ben
Brian O’Neill
I HEAR YOU!! I love all the fantastic professionals I’ve met because of ms. But at the same time, I HATE having and dealing with this disease.. I feel that this decade the ms people will make MAJOR breakthroughs in their research.
Benjamin Hofmeister
Thanks Brian! 22 years in the military taught me to not include "hope", as a course of action when making a plan, but I HOPE for that major breakthrough. Time will tell.
Ben
Bonny
Great column! Made me laugh out loud. I wish I hadn't even seen it.
Penny-Marie Wright
I agree totally with you. Would prefer to have met a lot of them under different circumstances. Also with all the doctors would rather not meet or need them. I was happy before with just my family doctor, chiropractor & eye doctor. On top of MS I also have Fibromyalgia which is supposedly closely related to MS. Don't think I have much MS pain but the Fibro puts me through the wringer. Hoping for a cure for both of them or at least one.
Benjamin Hofmeister
Ugh! Fibromyalgia! I don't have it, but know too many people who do. I'm sorry.
Ben
Elizabeth Martinez
Thank you for this - I get it. I don't know what rock I was living under that I never knew of anyone with MS or what it was until I was diagnosed almost a year and a half ago. Along the paradox lines....I'm happy I was not diagnosed until late in life (51) but I supposedly had a while and I blamed myself for what I considered just really clumsy and dropping stuff. Happy I didn't know? and pursued whatever I wanted to do and probably did more because I had no reason (that I knew of) it would be so difficult but I kept trying - salsa, hiking, kayaking and always totally sucked but I'd keep trying. Oh well, we move forward to be our best and now I totally over-read about MS - good or bad as that may be.
Benjamin Hofmeister
"Over" read about MS? I don't know that there is such a thing, (then again, there probably is). It always amazes me when people say things like, "You sure read/know a lot about MS.". It's not the most important thing in my life, but it has an effect on every single part of my life, so it just makes good sense to me to try to learn all about it.
Mmmm salsa! Do you like spicy or mil......oh, I see what you mean.
Thanks for the comment Elizabeth.
Ben
Bill Nash
Hello, Benjamin! I am so glad to read your take on our wonderful life with our agony, and I so agree on many of your points! I am in my 35th year with MS, and I have been very lucky to have a hugely benign case of MS (it has left me with most of my faculties, and, in particular, very little pain), which many times causes me to call it a blessing... which is a very strange word to use. But when it came to me (around age 31), it was the fucusser I needed at that time in my life... I was not finishing anything I had planned in my life, just going through the motions. Then, I heard this voice one morning... "Bill, you know all of those things you love to do? You better get on the stick, 'cause they may be gone next month... week... tomorrow."
Don't get me wrong... if my symptoms had gone worse, it obviously could have been another direction things might have gone. It was just dumb luck, but I will take it, for it allowed me to live the last 34 years a much better person than the one I was heading to. I also agree this double edged "blessing" is one of the nastiest things a human being has to deal with, and I grieve for all of my compadres living with it. I take it as my mission to keep my hand in the compassion it takes to help people live through it!
Nice talking to you, and keep writing!
-- Bill Nash
Benjamin Hofmeister
Thanks for reading Bill!
Then, I heard this voice one morning… “Bill, you know all of those things you love to do? You better get on the stick, ’cause they may be gone next month… week… tomorrow.”
I wish I had heard that voice earlier (and had actually listened). I feel like I wasted so much time thinking, "I'll do ____ when I feel better."
Thanks again,
Ben
MADELINE l NEWTON
fantastic..yes i agree with you that we need help for having this thing they call MS..my word for it is my monster that follows me.......wish it would go away........yes early retirement is great just wish we could do what we had planned not doctor visits..i love my MS Specialist doctor but again wish i didn't need her..............love and happiness in life with your family
Benjamin Hofmeister
Thanks for adding another paradox to the list Madeline! I enjoy retirement too, but doctor visits, MRIs, baclofen pump refills, and physical therapy sessions are not how I planned on spending my time.
Ben
Norasmith
I have hated it every day for the past 20 years. ever since it started.
Benjamin Hofmeister
MS is predictably unpredictable and I am gratefully ungrateful. Thanks for reading!
Ben
Cielo García
yo he tenido todo lo describes de los sentimientos encontrados, pero tu lo describes muy bien... Cosas buenas que he aprendido pero también que forma tan tortuoso de aprender.
Translation: I have had everything you describe about mixed feelings, but you describe it very well… Good things that I have learned but also what a tortuous way of learning.
Benjamin Hofmeister
Gracias por el comentario Cielo y gracias por tus amables palabras. Desearía poder describirlo mejor, pero luego desearía no tener que hacerlo.
Ben
Thanks for the comment Cielo and thank you for your kind words. I wish I could describe it better but then I wish I didn't need to.
Ben
Maria Muddell
Thanks! I loved it Benjamin :)
Cleverly written article in which I can relate to so much. Living with MS is so contradictory right ?? Light and Shade, Black and White (but at times Grey), Happy and Sad, Stop and Go, Do I Dont I ? Up and Down, Smile and Frown, On or Off ? It's a roller coaster of feelings, emotions, symptoms and choices we have to make to manage the unpredictable. The courage to push through and be grateful AND the guilt of wanting to curl up and give up. It's exhausting and exhilarating all at the same time.
I can relate !!! Maria :):):)
Ranga
I would genuinely say I have learnt more about biology, medicine and our world in general than i would have without MS. MS literally opened my mind.
Jenny Clarkson
Hi Ben! I completely agree, you have explained it so, so well. I also 'enjoy' being medically retired but so much of my time now is spent trying to make my symptoms better through stretching or sleeping, rather than the travelling I hoped I would do when I eventually retired. I love that the kids have me at home with them, but I hate the fact that I rely on them so much to help me do jobs in the house. Great article!
Alison McLachlan
Wow Ben this is sooo real, I have difficulty in asking for help, and then hate it when it's given, but am sooo grateful...but not. This paradox makes you feel bad, even when you are doing good! You have managed, so well to put in print how weird this feeling is. I love it, not. You know what I mean...
Ed Tobias
Great column Ben. As far as accepting help....it took me a LONG time - decades, actually - to accept it and it's still tough to do. http://multiplesclerosisnewstoday.com/columns/2021/07/20/not-crime-ask-for-help/