It may not always look like it, but I’m not giving up
I rely on others for daily living, but trusting people isn't the same as giving up
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Several (OK, many) years ago, I was having lunch with a group of fellow Green Berets when a news story appeared on the TV. The report covered a recent tragedy, and during an interview with a survivor, it was mentioned that one of the victims had not survived because they had “given up.”
This sparked a discussion and some general confusion at our table, until one of the guys pointed out why: We were a group of people who had repeatedly proven we were unlikely to give up, so the concept was understandably perplexing.
It was that mindset, more than pure physical conditioning, that got me through everything in the military. Perhaps that’s why it offends me when people see me struggling with multiple sclerosis (MS) and offer a certain kind of irritating advice — the kind that implies I’m not trying hard enough, or that I’ve simply stopped trying. While most people may not intend it that way, it still grates on me.
Sometimes I joke that I should make a T-shirt or attach a sign to my wheelchair listing my pre-MS accomplishments. For medical providers, I’d like the same list noted in my chart. Of course, that would require people to actually read and understand it, so I’m not sure it would help. Still, it would be something to point to when judgmental comments arise: “See that? You can’t honestly think I’m not trying hard enough, or that I know what it means to give up!”
But do I truly know what it means to not give up? The hardest things I did in the military only lasted a set amount of time, and I always got to recover afterward. I’ve been dealing with MS 24 hours a day for at least the last 12 years, and so far, there hasn’t been any recovery. Has it worn me down enough to give up? I’ve certainly had my share of bad days and the depression that comes with them, and sometimes I wonder whether I’m still trying hard enough or if I’ve quit.
Others have probably wondered the same, and although I don’t like it, I think I know what they’re seeing that makes them think I’m giving up.
I rely on my wife and children for help with nearly every activity of daily life. Placing complete trust in others for things I once did independently was difficult. Not being able to do it all myself felt, at times, like not trying hard enough — but trusting others isn’t giving up.
Though trust is central, I see willingly relinquishing control as a separate challenge. Because of my MS, I’ve had to give away a lot of control. It took me a while to realize that giving control to someone else doesn’t mean it’s lost. While it might look that way to me or to others, it’s not the same as giving up.
Finally, taking a break and granting myself grace isn’t giving up or not giving my all. I used to think I didn’t deserve breaks unless I’d earned them. It felt wrong to want to rest after something as simple as taking a shower. But the beauty of grace is that it doesn’t have to be earned; it’s a gift, one I had to learn to give myself.
Now I just need to perfect giving that grace to others when I feel they’re implying I’m giving up. You’d think it would be easy for me, since I used to think that way myself, but I often find it harder than giving grace to myself. I would’ve thought it’d be the other way around, but maybe that’s the correct order in life with MS.
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.
Lisa Bowser
Thank you for your article! Have a blessed day and continue to be a blessing through your writing!
Benjamin Hofmeister
Thanks Lisa! It's a blessing to see your comment and know you're reading!
Craig kombargi
100% agree ppms 2014😵💫🤬🙏
Benjamin Hofmeister
Must have been a vintage year! Thanks Craig!
Jonelle Jozwiak
You are doing what MS is allowing you to do! I do relate to your columns and look forward to Thursdays MS news today to read your article. Continue to remain positive! Yes your brain still thinks like a Green Beret! Let it!
Benjamin Hofmeister
I think my wife would like it if my brain was not always thinking like a Green Beret.😅
Cindy Minota
This so resonates with me. I had my husband write a sign I wore on my chest when in the hospital for my second round of septic shock last year, that read , "I am a much loved wife, mother, grandmother and aunt and friend. I am a wood turner and quilt maker and a very articulate teacher even tho it doesn't look like it right now!" It did make for some interesting conversations with the medical staff! But most aged people fight against this assumption that old equals invalid. I say I might look like an invalid but I am never IN.VALID! I do enjoy your articles, thank you very much for your honest discussions; you speak for so many of us!
Benjamin Hofmeister
Thank you for reading them Cindy! If it's a short trip into the grocery store Etc, my wife will park in a non handicap spot and leave me in the car in my wheelchair. We have about decided that I need a sign for the window that says,
The AC is on, he has water and snacks, and is listening to his favorite music.
Ian R
Sometimes when faced with guaranteed defeat you have to accept it. The best generals know when to raise the white flag. Your enemy can’t be defeated. You can’t see this enemy. It’s heavily camouflaged and within the castle walls.
Benjamin Hofmeister
Hi Ian!
I'm definitely going to be defeated one day and I think I'll know when it's time to Hoist the white flag, but I'll never give up. Yeah yeah potato patata. I guess what I mean is that when it comes I'll be ready, but I'm not going to hang my head sit down and just wait.
Gregg
Nice article. Makes me reflect that sometimes not giving up entails giving up fighting a certain aspect which is not worth fighting. That which we resist often persists, so persist variously!
Benjamin Hofmeister
"That which we resist persists."
I might have to steal that one Gregg!
John Connor
Hi Mate. I’ve just given up for the day. Pointless to try & spend it in my leccy chair when soggy.mess. Spend it in bed instead. Not giving up as letting the mind/body recover.MS might be all downhill but it does no harm to just freewheel for a bit .
Benjamin Hofmeister
Hi John! My problem was that I always tried to turn around and go back uphill. Yes, free wheeling and coasting while recovering is the ticket
donald kushner
What strikes me most is the reframing of “giving up.” Trust, shifts in control, and rest are easy to misinterpret when viewed through expectations shaped by stable capacity. In chronic illness, these are often not signs of defeat but markers of recalibration. Thank you for this thoughtful and deeply relatable piece.
Benjamin Hofmeister
You are very welcome Donald! I'm very guilty of once trying to view myself through expectations that were for someone without MS. Once I got better at realistic MS expectations, my mindset improved. I think I had to realize that MS expectations are not the same as low ones. They're just adapted ones.
Peggy Calamo
It's nice to read something from someone who has PPMS. 99% is all about RRMS. We're light years different reaching for the elusive gold ring that may never appear. But you always have HOPE.
Benjamin Hofmeister
I've seen so much written about how ppms maybe a different disease entirely. I don't think it's gotten much beyond the question phase, but sometimes it sure feels like that. Thanks for the comment Peggy. You're right we always have hope.
Nancy
MS requires living at a different pace, ones own pace. If I veer to far from my pace, I risk falls, injuries, errors, etc. I will never alter my pace to suit the vision or impression of another. Live with my crutches, my feet, my legs, my brain. My MS, my pace. My time, my sucess.
Benjamin Hofmeister
Thanks Nancy! I like that. I think I'll start paying more attention to my pace and making sure not to exceed it. Especially because the pace may change from one day to the next
Tom Fabian
Ben, this is a powerful message. For 25 years I served as a care giver for my wife diagnosed with RRMS in 1993. She faced every day with courage and determination and took advantage of every advancement in the treatment of the disease. In 2008 she enforced upon herself a "disability" retirement due to mental acuity issues. That did not define her, she focused her energy on finding new challenges. She gave herself grace and offered it freely to others, me included. Unfortunately, in early January 2018 she was diagnosed with sporadic Creutzfeldt-Jakob Disease. CJD is also a neurodegenerative disease unrelated to MS and is untreatable and invariably fatal. She died on February 6, 2018. She battled MS to a draw. CJD was her "Alamo", a hopeless unwinnable fight.
You are an inspiration to me. CURE MS and CURE CJD!
Benjamin Hofmeister
Thanks Tom, but I think it's the other way around. You and your wife are Inspirations to me.