Finding safety while living with the constant threat of MS progression

Like the animals in nature documentaries, I'm never entirely out of danger

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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Even as a small child, I enjoyed watching nature shows. They didn’t come on television often, but when they did, I absorbed every word. At school, I might not have been able to recite the Pythagorean theorem, but I could say with confidence that butterflies taste with their feet. That didn’t help me much in geometry, but it’s really math’s fault for not having more fascinating documentaries.

In my opinion, the shows have gotten even better over the years. Today, the sweep and scale of the cinematography alone is dazzling, but nearly every element of productions seems grander. However, either they’ve taken on a slightly darker twist, or I’ve become soft in my middle years.

There seems to be an almost deliberate attempt to make me emotionally invested in an animal’s well-being. Then, just as I reach a peak level of concern for some obscure mollusk, David Attenborough’s calm voice informs me that a predator is approaching and now the mollusk is in mortal peril. As I grip the arms of my chair hard enough to leave marks, he matter-of-factly narrates the outcome. Even when the animal escapes the situation, I’m still not allowed to completely relax. Attenborough’s voice, with an almost detectable note of disappointment, informs me that “the danger has passed — for now!”

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‘Danger lurks nearby’

That’s actually a good example of keeping the viewer’s attention. Unfortunately, I find that multiple sclerosis (MS) often uses the same technique, just without the same superb narration. I’m not sure why it bothers, though; it doesn’t need a technique to have my complete attention. It’s not as though I can turn off the show or switch to something better. Nature is cruel, and so is MS progression.

My symptoms began in my legs, with a limp caused by foot drop. Even at the time of my diagnosis, I thought that as long as it never got any worse, the disease wouldn’t be too bad. I had built quite an emotional (and physical) attachment to my legs over the episodes of my life and thought they were safe. I missed the “for now” part, because my MS did get worse, and I took my last steps six years later.

As the disability in my legs progressed, I thought that at least I still had full function in my hands and arms — but multiple sclerosis had other plans. Now, it’s like I almost hear the narration, “His fingers seem safe, but danger lurks nearby!”

With the passing of the years, the same thing has happened with nearly every part of the documentary I call life. At some point, my vision, balance, bladder control, and cognition have all been put in peril. My relationships, career, lifestyle, hobbies, and mental well-being are also under threat.

This time I’m the creature whose life I’m invested in. I can’t change the channel, but I’m not simply a distant, concerned viewer, anyway. I can and will advocate for myself and seek the comfort of my herd. With MS, I’m never out of danger, but I can still feel safe.

In case you were wondering, thanks to voice-to-text tools, my column, with its occasionally snide outlook on our disease, is safe — for now.


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.

Comments

Trish Nafotz avatar

Trish Nafotz

Thanks again for expressing my (our) experience and thoughts in such a witty, yet somber way. Whenever I read your columns, I ask myself, "How does he know what's happening to me?".

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Just a lucky guess. Multiple sclerosis sure didn't make me psychic lol.

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Alison McLachlan avatar

Alison McLachlan

So good to read a brave, and funny outlook on our unchosen lifestyle...you have a great outlook, 'snide' or not, it always cheers me no no-end ! Thank you Mr Hofmeister!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Alison! I don't feel very brave, but I definitely feel snide.

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Cay Borduin avatar

Cay Borduin

I enjoyed this post because you described your condition. As a fellow ms sufferer, I like to get a feeing for how it's affecting people like me.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for reading Cay! I wish we weren't in this community, but you're right. Hearing about other people's experiences helps a lot.

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LD Artman avatar

LD Artman

I’ve not seen a better description of living with MS and progression - and one that made me laugh. I am now considered a quad because every limb is impacted but I do have one arm/hand that can hunt and peck. I am in a power chair now after I hurt my shoulders and tore a rotator cuff many years ago.. I remember all those years of progression steps and continually adjusting how to live my life.
Thanks for the great article!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You're so welcome LD! Sounds like we're in the same boat ability wise. I'm about to have shoulder surgery because apparently making it a weight bearing joint aggravated all the past injuries.

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Abby Turpin avatar

Abby Turpin

I just wanted to say that I was literally THRILLED (like heartbeat jumped) to read that someone else is aware of the freaky butterfly feet! LOL

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You're so welcome Abby. Knowing obscure facts has helped me out on trivia night, but not so much anywhere else.

We're in a tight spot.

Tell me something I don’t know!

Some shrews can echolocate

What??!! How does that help?

It doesn't, but I bet you didn't know that.

If we live through this, I'm going to beat you until we're both tired!

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lj avatar

lj

Good to see you back Ben so glad you've mastered the Tec to enable you to write.
Great column sums it all eloquently.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Wow! Thanks Lesley! I don't think I've ever been called eloquent before lol

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Patty Tresemer avatar

Patty Tresemer

Thank you for your honest & refreshing articles. And thank you for military service❣️🇺🇸I was diagnosed this last August with RRMS at age 69. Were you originally diagnosed with RRMS or was it identived as PPMS from the start? Is it service related?

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi Patty! My initial diagnosis was RRMS before I saw an MS specialist who diagnosed PPMS a fee months later. The VA considers it service connected, but after 22 years they probably figure they own anything that's wrong with me.

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Wendy Roe Hovey avatar

Wendy Roe Hovey

Well, I hope that voice stays safe for a long time, because we need you!

I am very concerned about John Connor. Of course I understand his right to privacy. Still, those of us who follow him relied on his dark humor. Is there any hope that we might learn more?

Wendy

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Wendy! I intend to be around for as long as I can. I'm sure John is doing as well as he can. He always had a way of making me not take myself or life with MS too seriously.

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Erik Johnson avatar

Erik Johnson

Absolutely chilling.13 years ago I was diagnosed with ppms.Twrs later I had to retire as a chef because of my balance and fatigue. About 2019 my right hand began to clinch closed. My regular Neurologist sent me to an MS specialist neurologist. She took another MRI and came to the conclusion that there was a lesion on my cervical spine. She was telling me in no uncertain terms that there is nothing that could be done. The lesion was the reason! Remember I'm a chef and now I can't even hold a knife to be able to ..Fcook for my family. What a gut punch! Now not only do I feel kind of worthless to society but to my family as well.To fast forward to today I now have SPMS and have had relapses that have put me in the hospital for three weeks. That is why this article hits home me. God bless you sir and us all with this invisible,horrible disease.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I get you Erik. I guess I'm glad that I get to be at every game my kids have, but I can't throw a ball or help in any way except by jusr being there. I haven't felt worthless in awhile, but I often feel inadequate, or like a bit of a burden. We do what we can with what we have. Hang in there!

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Debra Ryan avatar

Debra Ryan

Thank you for sharing. You have an exceptional way of explaining exactly what I am feeling or going through with PPMS. Many times my symptoms and progression parallel many of yours . You put into words what I am thinking and feeling with my MS. I often share your articles with my friends and family so they to can have a better understanding of my PPMS.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Debra! I have been forced to use analogies to describe my MS because there's nothing to relate it to for the average person. I bet you do too.

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Angela Stogner avatar

Angela Stogner

Bravo, Ben! Since my own diagnosis I’ve used analogy to explain to non-MSers what it’s been like living with MS. Who would’ve thought Richard Attenborough and the perils of sea snails could be explanatory? Keep on with your writings. They’ll reach farther than you can know.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Angela! I never thought i'd have to use analogies so much to explain something, but here we are lol. I hope they help the explainers as much as the explainees.

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Kim Ahmed avatar

Kim Ahmed

Wonderful writing! I, too was pretty complacent in 2003 upon diagnosis. 2013..oh, it’s not too bad. 2024..hmm. Had forgotten how fast the years fly by. Got kicked upstairs to secondary progressive this year. Will go down some day, but will go down fighting!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Kim! That's a great example of the "nous defions" spirit. I might not win, but people are going to know there was a fight. I know MS doesn't care if I go along quietly or not, but it matters to me.

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Daniel Wright avatar

Daniel Wright

First. Thank you for your service. Second. Thank you for your relatable writing. As I was reading, I found myself thinking, this is my story. Started at 25 years old. Just tired. 27 a limp 29, my career. I just turned 38 and the rest is happening. A few MS patients started a nonprofit that tracks MS research and stores it in an accessible research database. I think every MS doctor and patient should be in this Facebook group. It’s so helpful to find information and it’s motivating to see the research develop and know that MS treatments are being discovered. Solving MS.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading it Daniel! I wish it wasn't relatable.

Could you share a link to that database? It sounds great!

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S Singer avatar

S Singer

I loved those nature shows, too, even though the story lines were contrived but made to seem real by narration and the magic of editing. Unfortunately, there has been no calming narrator assuaging my fears over 40 years living with the slow but incessant creep of MS. Hanging with my herd helps but I feel safer having grown a hard shell and tentatively emerging from under my rock only when a ray of hope lightens a fleeting path of possibility.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Nooooo! There's no script!! The narration comes from the heart!

Ok....maybe I need a harder shell.

I wonder whose voice would best narrate my life?

"I feel good right now! I'm going to get so much done today!"

Narrator: "But he ended up tiring himself out loading the dishwasher and accomplished nothing else all day."

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Laurie schniebolk avatar

Laurie schniebolk

Thank you for your realistic comparison. The only thing missing from these shows is how to send funding. After I watched several incredible documentaries featuring elephants and how man continues to eradicate their habitats, I told my family to please leave a little of my estate to support these beautiful creatures. And then I remembered, much of our assets, will go to my support, if I live. So elephants or me? An existential question.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

No,they never mention that part. I imagine it's because they don't want to endorse any one group. Something should be done, but we'll leave the how part up to you seems to be the message and I respect that

"Elephants or me" should be the title of your book. Everyone has that existential question. Not everyone's "elephants" are the same though.

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Tom A avatar

Tom A

Hello Ben- This is late :-( In my comments to various posts here and there, I am motivated recently to try to point to the uncertainty of MS as being a major factor in the disease, unlike other diseases. You have lesions, MRIs, DMTs, diagostic labels, and you have uncertainty which includes x, y and z leading to a, b and c. The uncertainty leads to outcomes you don’t see in other diseases, and these outcomes are significant. I think that’s important for newbies to hear. But that is not my final way of putting it; still contemplating that. I like the analogy here.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

As luck would have it, I'm late replying to comments this week, so from my perspective, you're right on time.

It's frustrating to me that I've dealt with and even happily accepted uncertainty in my professional life, but it drives me to distraction now. I've commented myself about guys from my past life being confused by my chronic illness because it doesn't fit the mold. You get hurt, or sick and you either get better, or you don't. What do you mean you don't know what will happen next? There's another, "in between" option?

I often tell about that as though I'm immune, but I think the uncertainty confounds me every bit as much.

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Dixie avatar

Dixie

Our son has recently been diagnosed with MS and I read all the articles on this thread for answers. He also had an eleven year career in the Air Force but now only has small periods of function. I have really enjoyed all the wisdom you have shared and your outlook. You have shown me courage in the MS progression and I am deeply sorry this affects good people. Thank you for your service and continue to "write" articles.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Dixie!

Is your son a member of the paralyzed veterans of America (PVA). I actually sit on the MS commitee. Despite the name, a wheelchair isn't required. The founder actually had MS. Lot's of opportunities and advocacy for Vets there.

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Sandra Schneider avatar

Sandra Schneider

Thanks for this, Ben. You've put into words that perpetual feeling we have; If our lives were a nature show, this would be right before the certain shark attack.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Sandra! This disease definitely makes it hard to be an optimist.

Still, sharks or not, I'm still going swimming.

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