Don’t Let the Past and Future Be Obstacles While Living With MS

Columnist Ben Hofmeister works to acknowledge his present reality with MS

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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While helping me get dressed this morning, my wife handed me a T-shirt from a dresser drawer across the room. It happened to be a shirt commemorating an event from my pre-multiple sclerosis (MS) past. It’s what you might call a “been there, done that, got the T-shirt” kind of shirt, and I found myself inspecting it closely before I put it on, fondly remembering something from the past that I can no longer do.

Scars might be reminders that the past is real, but I have to say that I prefer T-shirts. The irony that multiple scars from sclerosis and lesions are now constant reminders of my present isn’t lost on me.

When you’re living with MS, the past can be problematic. I’ve gone through periods of not wanting to acknowledge the past because it hurt to remember my faded abilities. Conversely, there have also been times when I wanted to escape the present by pretending that I was still living in yesteryear. Neither option turned out to be particularly helpful or healthy.

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I wasn’t born with MS. OK, maybe the genetic predisposition was always there, lying in wait for a triggering event, but if my life were a book, there would be distinct before- and after-MS chapters. Just like rereading a favorite book, paying a visit to your own past can be a good thing — but life continues and you have to go on to the next chapter and the next, until the book is done.

You also can’t start reading a book in the middle and pretend that all the chapters that led up to that point don’t exist. The past is absolutely vital to the present. I’ve had my share of not-so-great moments, but my past, for better or worse, shapes my present, and the two add up to shape my future.

The future is also problematic when you’re living with MS. I spent the bulk of my pre-MS life not considering hope to be part of any worthy plan. Now, sometimes it seems that hope plays a part in all of my future plans. For example, I’ll say, “I can’t plan on having enough energy for ____, but I hope I do.”

That future hope has to be tempered by present reality, however. I feel like I wasted so much time after my diagnosis, confidently hoping instead of doing the things I could while I could. The “I’ll do ____ when I get better” mentality, while optimistic, cost me time that I can never get back.

So, what’s to be done? How do we balance all this? I was sort of hoping you’d tell me. In the meantime, I vow to not forget the past, to hope for the future while not wasting time wistfully dreaming about it, and to acknowledge my present, even though I refuse to embrace it.

Leave a comment. I’d love to hear your thoughts.


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

Sue Barnett avatar

Sue Barnett

Thank you for your post - it really resonated with me because I have done exactly the same thing. I wish I could say something to help, all I can say is that you are certainly not alone, and thank you for making me feel less alone :-)

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Sue! I wouldn't wish MS on anyone, but (as I'm sure you know), knowing we're not alone means more than anything to those of us with it.

Ben

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Ian Q avatar

Ian Q

Ben,

The way I have dealt with it, is to think of it as two lives. The first life was near perfect - marriage, family, job, friends, sports. It lasted almost 40 years until my diagnosis. My second life (almost 20 years) is nothing like my first life - hospital appointments, various treatments, treatment trials…. I stayed in my job for 12 years, my marriage isn’t what it was, no competitive sport (I can still cycle and walk the dog for c.20 mins). But travel is no longer an enjoyment, and many friends were linked to hobbies I can no longer do (running, tennis). I hate the loss of independence and spontaneity. Is there hope wit( MS? Each year we get a little worse (or a lot) regardless of the treatment we are on. We hope for remyelination treatments or neuro restorative treatments, but they never seem to get to the pharmacy shelves. It’s a vile, insidious disease and I can’t stand dross such as “I’ve got MS but MS hasn’t got me” or “God never gives you challenges you can’t overcome”. I miss my old life so much. I won’t miss my second life when it’s gone.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Ian. I miss my independence and spontaneity too. One day soon, I'll do a whole column on each. Being forced to alter plans doesn't really feel like being spontaneous and wanting to do what you're still barely capable of isn't always stubborness. I don't care for most of the pithy, feel good, quotes either. I've found myself telling people, "I know you mean well, but please stop trying to cheer me up.".

Ben

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MsCP avatar

MsCP

Re "It’s a vile, insidious disease and I can’t stand dross such as “I’ve got MS but MS hasn’t got me” or “God never gives you challenges you can’t overcome”.
I second, third, fourth, and fifth that motion. Please also add "The only disability in life is a bad attitude" and the other churchy based one of "It's all part of God's big plan for you" (that plan can be stuffed where it hurts).

And don't, just don't, get me started on the positive thinking crowd - they are totally toxic. To paraphrase the imitable Stella Young - "No amount of positive thinking is ever going to turn a flight of stairs into a ramp". You can access her writings and her wonderful TED talk here:
https://www.ted.com/speakers/stella_young

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Leanne Broughton avatar

Leanne Broughton

When I was first diagnosed 24 yrs ago I was not greatly affected, optic neuritis and fatigue. I ignored the disease for many years. I was too busy in my life with 2 school aged children and 2 working parents. I didn't talk about my MS for many years. I had to leave my job 3 yrs after diagnosis and was then forced to talk about it. I know some people, in their ignorance of MS did not believe me because I could ""walk". I guess I did not miss out on things, raised my children and participated in their lives. Looking back those were the "better" years with MS and wished I had cultivated, nutured more lasting friendships.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I know we shouldn't compare. I even wrote a column about that very thing, but I feel grateful that my disease wasn't invisible for very long. Other than someone seeing a stim unit for foot drop on my leg and asking me if I was under house arrest, I really didn't have to deal with what others sometimes do.

Thanks for reading and your wise words.

Ben

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Abbey (UK). avatar

Abbey (UK).

After my diagnosis, and being forced to leave my (much loved) 'too active' employment I went to college to train for a 'seated' position.
Time had rolled on and, working with People with Disabilities, one of my colleges (wheelchair bound from age 3,) had asked me "Do you dream?" I'd asked "About what?", his reply had hit me like a ten-tonne truck, he'd simply said "Being able to run fast, ski, or play in team sports..!". Starting to (stupidly) feel a little guilty, I'd said, "I'm sorry, but I've done all of those things.".
Sadly, his condition had taken him at a very early age, but I often think of him... recall his words and am forever thankful that, at least, I'd had the opportunity to use my body... when it worked.

Now unable to do very much at all, I just 'work' with what little I'm left with, and (occasionally) remember my triumphs of the old (me) days.

That's how I've always chosen to deal with my MS, Bob, and I wish you the required peace to deal with yours too. Be happy.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Abbey. I too work with what's left and I think I've struck a balance between fondly remembering things that were and being happy for past me, instead of jealous and bitter. Happiness to you as well.

Ben

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MsCP avatar

MsCP

Despite what your colleague said about dreaming about being able to run etc, the term "wheelchair bound" is really ableist and judgemental - for many people who use wheelchairs (of all sorts) their chairs represent a degree of freedom and independence - without them they would be totally stuck and dependent on other people to carry them, while in their chair they can move about and have choices about where they go. Of course this is dependent on places and premises being accessible, but using a chair is better than being stuck on a sofa all day if the sofa is not a conscious choice or your only option.
https://www.freewheelintravel.org/please-stop-saying-wheelchair-bound/

Similarly, I have a "strong dislike" of use of the term "MSers" - which is (sadly) used by so many PwMS. "MSers" puts MS front and centre, and the individual person last. I have MS, but I was a person before I had MS, and I am still a person after being diagnosed with MS. Probably not the same person I would be if MS hadn't come along to screw up my life, but I'm still me, and I'm more important than my MS. I can't stand the phrase used by some that "I have MS but it doesn't have me" - that seems to be used mostly by people who do not yet have much disability from their MS. They may well learn differently down the track that indeed MS can have them and there's stuff-all they can do about it.

Signed - a PwMS who is EDSS 6 on a good day, and 6.5 on a bad day.
(We won't go into discussing the shortcomings and biases of the EDSS system - that's a whole new rant for a different day......)

OK - rant over - normal service can now be resumed :)

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Ben Smoke avatar

Ben Smoke

I have secondary progressive MS. I am 78, have kind family & friends. Your comments ring so true. One doesn't want to complain...and to just carry on. But each day is filled with back-tracking to get minor details accomplished. I'm having health problems...and all comes back to MS. And the future is all tangled with this reality. Your post shows me this same distress. Thank you so much for sharing. Ben.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Ben....and nice name. No, we don't want to complain or feel sorry for ourselves, but we have to distinguish between that and giving ourselves grace. Something I'm not very good at yet.

Ben

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Rosemary Conte avatar

Rosemary Conte

Hi Ben. 9 yrs ago I was diagnosed with Secondary Progressive MS. My doc and I think I’ve had MS for 50 yrs of suffering and visiting major hospitals and physicians and even underwent open back scoliosis surgery that promised to heal my pain but instead put me in a body cast for 9 mos, only to cripple me for the rest of my life. At 81 yrs old, I, like you, am looking back on what I used to do even with the undiagnosed symptoms that were severe. I raised 4 small children as a single mom working two jobs and the stress of life aggravated my symptoms. These were supposed to be my golden years as my kids are adults with their own families, but I’ve not been able to travel, and go to concerts and do what active seniors aspire to. My future looks lonely, as I can’t go anywhere without assistance and am not not mobile. It’s very hard to remain positive. All we can do is the best we can with what we have where we are. I wish you well.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You said it all with that last statement.

"All we can do is the best we can with what we have where we are"

Thanks for the well wishes Rosemary. I wish you well too.

Ben

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Thomas Unrath avatar

Thomas Unrath

I'm not a great practitioner of mindfulness but I think it has some value here. I think mindfulness is, at least in part, about being in the present. As mentioned in your article we are a product of our past. We cannot leave it unnoticed, but we cannot live there. It is gone. As I write this the moment has passed, yet I am writing what was begun not long ago. I am also headed into the future; I will soon be there. The words will continue to come and then go. I am here in the middle.
So it is with all my life. I can recognize the past and learn. I can look to the future and plan. But I can truly only live now.

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Thomas Unrath avatar

Thomas Unrath

By the way, I've lived with MS since 2001. I'm now in SPMS.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Thomas. I was never very good at mindfullness either. I wished I was and in a painfully ironic twist, I now have an excess of time to sit and practice being mindful. In an even more ironic twist, I'm still not very good at it.

"I can truly only live now".

I wish I would have learned that earlier. I feel like I wasted so much time trying to live everywhere but now.

Ben

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Jenny avatar

Jenny

It’s really good to read your blog. I really enjoyed the one before on liminal spaces. Which I have always thought of in a old Celtic way.
And your perspective on past is really helpful too.
I have regretted much in my past life .Some of old family expectations about work etc , MS allowed me to drop. I hoped letting all that go , would free me from MS scars. But no.
I hope I am a better person, through this all, maybe just that.
There is a lot of suffering in this illness , and that makes it for me , as someone very wise said to me, “an upside down gift”
Thank you for blogging.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for your kind words Jenny. An upside down gift...I like that. It reminds me of a past column on the MS Paradox. I'm grateful that I am at home with my family instead of working all the time. I'm grateful for so much, but I cannot bring myself to be grateful that this disease is the reason why.

Ben

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Ted Larned avatar

Ted Larned

Right on brother! Couldn’t have said it better. I love my e-trike. There are only so many nice days. But the energy just to get strapped in to go. If I don’t go today, will I have more energy tomorrow? Will I even be able to do it next summer? “Live for today” has a very different meaning. Hard to make the shift to “do what you can while you can”.
Be strong (or do the best you can)!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Ted....and it looks like you actually might have said it better lol,
Thanks too for the encouragement.
Ben

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Phil avatar

Phil

You obviously hit a sensitive subject. I agree with Ian Q, farther up the stream, completely. The finality is the tough part. There's no rest for the weary.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Phil. As long as I'm not insensitive, I suppose I don't mind spurring discussion. ;-)

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Tom Anderson avatar

Tom Anderson

Hello Ben- This too, is an interesting one. The majority agree with the prior to MS “Good” argument, with the post MS “bad” argument. I think about specific past events from time to time, not that they intrude on me. I think mentally healthy people are free to examine their lives without pressure to avoid or get “unstuck”. The just do it when the opportunity comes up and they want to.

So yes, I have come to a recognition that my post MS life, is probably better than my pre MS life. “Upside down gift” certainly fits. Now I must try to summarize in a few statements.

So in trying to research a DR. McCoy mug for my brother, William Shatner (Capt. Kirk) shares his belief that people should not automatically regret unfavorable directions in their life because maybe continuing in the same direction would have been worse. So that is the same question, isn’t it? Right on time, too. All of my data for the answer is readily available. I had +$100,000 PhD student debt. First job out was with a group, half of whom holded the cards; they were very unethical. I graduated at 32 years. My prior life was full of “nasty people” experiences and their was plenty of heart ache. I was never told how important $ and a house was to women, and my education made me broker.

Then MS. Sued my former employer. Went on disability and my student loans disappeared. Good healthcare at a very reasonable price- never to be cancelled. Became a landlord. Got into antiques and collectables. Collected SSDI. Got married to someone from a different culture. Life clearly is not as bad as it could have been.

So which is better? I have to conclude post MS. What if I could go back in time and avoid the whole mess? Where would I be today? It would only be fun if I could bring my current experience knowledge back with me. Boy I could have a blast then!
But given everything, I’d have to keep it where it is.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks as always for the comment Tom.

I didn't know what was slowing me down at first, but my past life was drawing to a close anyway, so the transition to retired life was unexpected, but not abrupt. I like being retired and I'm grateful I was able to. I do wish my disability wasn't as severe, but trying to live in a pre-disabled past isn't an option. I think my problem was that I thought my identity was left back there with my job and abilities. Turns out, I'm still me.

Ben

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Tom Anderson avatar

Tom Anderson

A great topic,... perhaps to be expanded on in a later post? Yes, part of it seems to be how one defines their self, and can they make necessary adjustments to an unfavorable situation and still be satisfied enough? I suppose a lot of illnesses carry these questions but MS, with all its uncertainty, is hard to get one's arms around. Seems that just when you thought you were done with it, you are not.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I have started and stopped a number of columns regarding identity and personality with a life alterating disease. My conclusion is that I could write about nothing else and have material for the forseeable future. I feel like my personality has remained constant while my identity has changed with my situation. I also feel like I should have taken more than 4 psych classes in college because I can't quite wrap my head around this.

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Melissa avatar

Melissa

Ben, thank you for your military service. I am glad that I read your column today after a few days hiding under the blanket weighed down about the uncertainty that surrounds my life. It’s natural and inevitable to compare. It’s important to remember and acknowledge, but also to avoid self pity. Going down that rabbit hole is a trap for me.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Melissa. I avoided self pity so hard at the start that I forgot to give myself grace. You're right, self pity is a miserable way to go through life. Drawing the line between it and realistic grace is anything but simple....for me.

Ben

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Mary Dewey avatar

Mary Dewey

For 17 years, I have remained hopeful for a breakthrough to remyelinate damaged nerve signals, going to the leading MS treatment programs (Cleveland Clinic, Mayo Clinic, Johns Hopkins, etc) .I continue to be beyond disappointed that medicine can replace hearts, eyes, limbs, etc but STILL no progress for MSers. Really?
I have turned my attention now to my 3 amazing daughters (2 enroute to a career in medicine)to educate them on environmental contributors (no history in our family at all but totally correlates with research on EBV & my mono as a teenager.) How lucky I am that I was healthy while raising our family. Given the coverage on EBV & MS and the emotional/financial implications to families, when will science develop a EBV vaccine?! We certainly got right to it with COVID.
Every year for Christmas, my girls get a supply Vitamin D3 /K2 supplements in their stockings. Until our medical community rises to the challenge, my girls eat clean, exercise regularly, learn as much as they can AND most importantly , they continue to tell me Im still the same person to them & what wonderful childhood memories they have. THAT is what keeps me going.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Mary.

I am hoping for a remyelinating/repairing therapy too and keep a close watch on the research. I hope my kids grow up with the same positve attitude as your's. I think they will.

Ben

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