MS Makes Me Feel Like a Child Again, and Not in a Good Way
A columnist with progressive MS struggles with his declining abilities
The other day, my middle child opened the door while I was in the bathroom. If you have children, a surprise visit in what should be a sanctuary isn’t unusual, but in this case, what he said was. He observed me aboard my toilet and shower chair, which progressive multiple sclerosis (MS) has forced me to use, and remarked, “You look like a big baby.”
I thought the “big” part was a little uncalled for — MS has not been kind to my physique, but I’m working on it. The second part, however, gave me pause. I found myself replying, “Kiddo, sometimes I feel like a baby.”
To be fair, no one treats me like a baby. I have been known to occasionally snarl the words, “I can do it myself!” But for the most part, I don’t act like one, either. It’s just a cynical observation I make when I notice my abilities regressing as my disease progresses.
I was diagnosed a few months before our second child was born and only stopped walking and driving after our third. There’s little doubt that watching them grow out of the things that I seem to be shrinking back into is the reason I notice. You never really see your progression until you see yourself progressing in children’s crayon drawings from using a cane to a rollator, and finally a wheelchair.
As noted above, I have a separate wheelchair just for the bathroom. I’ve also reached the point where I need help with showering and dressing after. There was some time in between, but it almost felt like we were taking the kids’ toilet seat and bathing accessories out just as we were bringing mine in.
As their dining tools are sent to the thrift store, I’m using weighted silverware and have a spill-proof bowl and a water cup that we jokingly refer to as my sippy cup. I don’t drive anymore, and in the car we all have special seats to keep us safe. If we want it done legibly and within the current week, my wife fills out forms for me. Again, it seems like I’m growing into what the kids are growing out of.
Depressing, right?
Sometimes it is, but only if we think of these items as tools of belittlement. I choose (most of the time) to think of them as devices that allow me to stay involved in my own life and the lives of my loved ones. They, in turn, keep me involved without making me feel small — in the same way they accommodate my disability without treating me like I’m disabled.
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Comments
Kim Z.
Hi Benjamin, your post resonated with me like I didn't think it could. My father was diagnosed with Primary Progressive Multiple Sclerosis in 2018-2019 after many years of experiencing all kinds of pains and suffering, most notably in his back. It was an enormous adaption for everyone, most especially my father. As you said, it could be depressing to see a man as great as my father succumb to an illness little by little, but for us, myself, my sister, and my mother, my dad keeps smiling. He keeps joking and showing us in every way that he can that he is still our daddy who would tickle us and make us laugh with his strange facial expressions. Even though he is regressing slowly and needs more help than he used to, he doesn't let it eat him up inside; he stays strong and fights it as much as he can. I will never give up hope that there will be someone somewhere who will find a cure for this disease. In the meantime, as stated in Peter Pan, “All it takes is faith, trust, and a little bit of pixie dust.”
Benjamin Hofmeister
Thanks Kim! Peter Pan was my favorite movie as a child. I even tried to name my first dog Peter Pan, but my mother intervened.
I hope I'm setting a good example for my kids. I want them to see perserverance, practicality, and good spirits. I also want them to see the depression, pain, sadness etc, so their perception of life with a chronic illness isn't a flawed one. There are more good times than bad. Like your dad, I am finding that the balance isn't neccessarily in the middle.
Thank you so much for reading and for your comment.
Ben
Jen
So, so true, Ben. I was speaking with my counselor recently about resisting the next stage -- a wheelchair. I said that for me it felt like a loss of competence. She said, 'I understand. But look at how you've mastered hand controls in your car -- to me, that's a whole new level of competence.' I hadn't looked at it like that.
Benjamin Hofmeister
Hi Jen, thanks for that. I like that, "a new level of competence". That way of thinking makes the transition easier and more practical.
Ben
Robert Hilton
Good day Ben from the great white north.
Your article could not have come at a more perfect time. Diagnosed a year later in 2015 with PPMS my career path rapidly changed from working in the field to an office position to medical longterm disability (retirement with early pension) by late 2021. Being very familiar with the career path such as yours and experiencing a very similar journey but in a different field, the hardest part with this disease is its reverse maneuverability. As you regressive deeper in to a life similar to your childhood, your mind remains some what at that adult level. Fighting with this adult ego and intelligence has been the catalyst to all of my big falls or accidents. I have found this the most difficult aspect of the disease to deal with. Everyday is a new journey with new barriers. The days started to become less of an impact the day I started to be compassionate to my situation and started to love myself for who I am and not what I could do.
It's still a journey with struggles and personal tests but I am moving further away from beating myself up for what I can't do. Thank you for expressing your trials and tribulations so others can know they are not alone.
Cheers
Robert
Benjamin Hofmeister
Hi Robert,
Ego? Speak for yourself. I don't have an ego.....it's a...umm healthy excess of self confidence. lol!
Thanks for the honesty. I do have an ego and that plus overconfidence (if we're counting them as seperate things) has been a downfall (literally) for me too. It seems to happen when I confuse ego with dignity and pride. People say you aren't your job...what you do, but when you did it for a long time and were good at it, how can it not be a large part of your identity?
When a disease suddenly erases that, it's a rough transition. I don't like my new identity. I accept it and will use every tool available to me to get around the various handicaps, but I don't like it.
Thank you again for your comment.
Ben
Cherie Feinberg
Hi Ben,
I so related to your post. I was diagnosed with MS in 2007. At the time, my neurologist thought that I might have actually showed signs of the disease 10 years before but those symptoms were always attributed to other things (I also have fibromyalgia and Reynaud). For many years after my diagnosis, I didn't experience any physical limitations - my husband and I took dance lessons and I was always out and about. About 10 years ago I found myself needing to use a cane, then I graduated to 2 walking sticks when I ws out. After many falls, I now use walkers in my house and can only go anywhere if my husband is home to assemble my scooter that we keep in my trunk. Although I have no problem driving, I find lifting my legs high enough to get into the car is problematic and where am I going anyway? I was always very independent and always out and about and I find my limitations very upsetting. It does make me feel like I am reverting . I totally get you.
Benjamin Hofmeister
Thanks for reading and for "getting" me Cherie.
How I wish you didn't have to.
Ben
Brian K Jolly
One thing I'd like to mention is the keyboard of our computers and how adept a person can get with typing with one finger on each hand when necessary. My disease hasn't progressed as far as yours yet but there are times I have difficulty typing as well as writing and my computer is a god send because I can link my phone to it to text that way. I'm just now at the cane pont and that's only when my balance issues are bad enough to require it which at this point isn't daily.