What Others See vs What I See
In our living room, among family photos, there’s a framed snapshot of my brother and me as children. I find it interesting that when other people see this picture they observe things differently than I do.
My brother stands bent with his hands grabbing his knees and grinning like he’s enjoyed a great day of fun. We’re in the front yard and you can barely see some of the house we grew up in behind a wall of shrubs.
A glimpse into my JRA childhood
Strangely, I’m not standing but am instead sitting on the stump of a tree. Anyone who knows I have rheumatoid arthritis would understand that it’s because, even as a child, standing for much time was difficult, not just because of joint pain, but because of my balance. I had an especially hard time standing on grass or any kind of uneven ground. Most people see this photo and ask if that’s my brother or comment that we were cute children. Or they remark about my super long hair, especially because I’ve worn it short now for about 20 years and few people have seen me with hair of any length.
But I see so much more into this photograph.
For one, we didn’t have a stump in our front yard so my parents planned this photograph and grabbed this bit of wood purposefully for me to fit on. While it may seem spur-of-the-moment, it was not.
I also see that my smile is strained. I see pain on my face and exhaustion in my eyes, which seem ringed with shadows. I look like I am trying to smile, trying my best to feel OK when I really do not.
I’m also really struck by my body language in the photo. I am clasping my arms into my body and hunching forward a bit, like I’m trying to protect my aching joints from being exposed. And to me, my left leg looks angled strangely. I’m not sure if this is a function of my knee or ankle bothering me.
Noticing that I’m wearing sneakers with velcro ties in the photo makes me laugh because I was recently reminiscing how having these type of shoes become available when I was a child was so fortuitous because it was hard for me to reach to tie my shoes. Velcro became a good friend to me—one of my earliest assertive devices.
When I look at my left hand in the photo, I feel deep sadness because I can immediately tell that the damage to my hand has grown in severity over the years. In the photo you can see swollen, puffy joints but now I also have finger deformities and very limited motion. This picture rewinds some of the ravages of my time living with rheumatoid arthritis. My face is puffy from prednisone, but probably puffed more now that I have been taking it for a few more decades.
A tiny window into life with the invisible illness RA
Don’t get me wrong. I love this photo. It’s one of my favorites of my brother and I together and makes me think of happy childhood memories of exploring the yard and inventing games. But I also think of it as a tiny window into my life with RA, something that depicts the past and perhaps foretells the struggles of my future from that day.
To most people in passing, this photo is a glimpse of children pausing in their play. But deeper reflection instills deeper thinking and feeling. I was a child with a significant illness—to many it was largely invisible, but even then it was significant and life-altering.
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