Learning to love — and accept — that person in the photograph
Being honest with yourself about MS and disability takes time and effort
We had family portraits made a few days ago. With a family of five, this never goes perfectly, so there was a little pre-photo briefing beforehand. There were some veiled threats, a promise of dinner after as a reward for good behavior, and more than a few hissed admonishments to “Sit up straight!” “Smile!” And “Don’t pick your nose!”
I thought a lot of this was completely unnecessary. I’m 47, after all, and don’t always need to be told how to conduct myself in public. The kids are pretty well-behaved, too.
Our family tends to document as much as we can, especially events in the lives of our three children. We’ve taken lots of pictures with our phones and have had professional ones made of the kids, but this is the first family photo session we’ve had in a while. I know this because it’s the first one since multiple sclerosis (MS) put me in a wheelchair full time almost two-and-a-half years ago.
Looking in the mirror
I didn’t just wake up in a wheelchair one day. There were plenty of steps before that — well, fewer and fewer of them, actually — between my diagnosis and my current mobility situation. I’ve been in family pictures where I used a cane, and later a rollator, but you’d never know because I always hid them out of frame. It’s hard to do that with a wheelchair. But at the start of my time in one, I tried to hide that, too.
The question is, who am I hiding it from?
Not my family and friends. They’re all very aware of my disabilities. They have to be. My family spends 24 hours a day with me. Odds are, they’ve noticed that I can’t walk. My friends still want to hang out with me for some unexplained reason (hint: it’s not my charm), and they know about and accommodate my disabilities in order to do so.
Not my healthcare team, either, which I’m the head of, by the way (you should be the head of yours, too). They are more than aware of my mobility problems since they diagnose, document, prescribe, perform therapy on, and otherwise treat them. It would be a bit counterproductive to try to hide anything from them.
That only leaves one person — me. Have I been trying to hide or deny my true condition from myself? I’ve told myself before that I’m only using the cane, rollator, and wheelchair until I can walk again, so maybe there’s no need to have a permanent reminder of it. I’m no expert, but that sort of sounds like denial to me.
Why have I been trying to lie to myself? As an article from Psychology Today suggests, perhaps it’s a defense mechanism. If there’s no photographic evidence of a disability hanging on the wall, then I can pretend it doesn’t exist. Maybe it’s an overconfidence in my ability to overcome a disability. Then again, it could be that I want others — and myself — to see me without the handicap.
I wish I’d written that last paragraph in past tense, but those feelings aren’t completely behind me. It’s still hard sometimes to merge reality with what I’d like to portray, but I’m getting there.
Maybe having my first family portrait in a wheelchair is a step toward acceptance. I don’t like having multiple sclerosis and probably won’t ever be content with my current abilities, but I am happy.
There were a lot of takes to catch us all smiling at the same time, but mine was always genuine.
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
Heather
On August 8, 2022 our daughter was married at a beautiful venue in the Berkshires. A professional photographer was there to capture all of the very special moments shared by family and friends. When it was time to take pictures of the bride’s family I was seated in my wheelchair. I use forearm crutches for short distances but used my wheelchair to be able to get around on my own. I had considered asking for some photos be taken with me seated in a chair and wish I had. The wheelchair seemed to dominate and be front and center. I’m not embarrassed by how it looks and I’m very grateful to have a wheelchair as an aid allowing me to get around independently. I feel that seeing the photos draws attention to my disability and MS. But this was a small part of a joyous, wonderful celebration.
Benjamin Hofmeister
Thanks Heather. I'm starting to realize that for me, it's a little about control too. I am well aware that I use a mobility aid. So is everyone that knows me. So why do I want to not have it in a photo? You said you didn't want to draw attention to
a disability and that made me think. Maybe the choice of how to be portrayed, the control over what I want attention drawn to is a driving force because with a disease that takes so much control away, it's one I have left.
Ben
Eileen
When I see family photographs with me in a wheelchair, I only see the wheelchair. Probably vain, most likely denial, but I have already had to swallow and accept so much due to this #&@*&$! blasted disease, I want to keep what little vanity and deniability I have left. I know that they know that I know. And I am so grateful for the wheelchair, I just don’t want a picture of it on the wall.
Thanks again, Ben, for a spot on article, you made me stop and think and acknowledge the above. We don’t have to agree, but I will always applaud any article that makes me think and yours always do, thank you.
I will no longer whisper to my husband to find a chair for me, I will say it aloud and I am ok with that.
Benjamin Hofmeister
Talk about being spot on! I wonder if anyone but me sees the wheelchair first? Wow!, you made me think too. Thanks Eileen!