Over the years, however, my hands have continued to show me that they are strong, even as they bear the brunt of the chronic disease with which I live. My hands may not be able to do what they used to—opening a jar has become next to impossible—but they are a true testament to the power of adaptation. My hands continue to chop, cut, stir, and mix…and when they’re not able to do as much, they happily pull out the food processor and adapt recipes accordingly. I don’t spend as much time in the kitchen as I once did, but when I do it feels like a true treat. I love the smells, the tastes and the textures.
When my hands are doing well enough to grind spices, I pull out an old grinding stone that I inherited from my great-grandmother. I only have a few memories of her, but remember her walking with a pair of crutches. While no one can tell me what actually afflicted her, I’ve been told that her hands were very crooked and always hurt. Might she have lived with rheumatoid arthritis as well? I’ll never know, but when I hold the pestle, the same one she used to hold every day as she worked in the kitchen, I feel a special connection to her. And I tell myself that if she could get through the pain and disability, so can I.”
The night before last, my right hand flared like it has never done before. I woke up in the middle of the night, trying to figure out where the excruciating pain was coming from. As soon as I saw my hand, I had my answer. Three of the four knuckles (minus the pinky) were covered by a bright red oval that looked like it had been painted with a red Sharpie marker. I turned my hand over to look at the palm, and saw the same thing.
A few seconds later, I realized that I was completely unable to move my fingers…not even just a little bit. The idea of individual knuckles was a distant memory, having since been replaced by one large puffy swath.
Instead of fretting about the almost complete loss of use in my right hand (luckily I’m left-handed…but still!) I fell back asleep. Not a true sleep, mind you, but some weird place that I often go to when I’m in a major flare. I both feel my pain and don’t feel my pain, all at the same time. I’m fully aware of my thoughts, but I’m not completely present. I’m so exhausted that even resting seems to take more energy than what I can muster. I’m awake, but I’m also asleep.
I’m supposed to sleep with an ulnar deviation split, this contraption with a padded metal rod along the edge and Velcro elastic straps for each individual finger, including the thumb. The idea is to keep the hand, from the wrist on down, in it’s “correct” position. My hands are not as damaged as some others that I have seen, but they’re definitely past the point of trying to pop them back into the “right” place.
After the few minutes it takes to get all of the straps in the correct position, it’s nice to see my hands looking more “normal” than usual…but within an hour, the pain is just too unbearable. My hands have a new “normal” position, one that takes into consideration the constant swelling and tugging of all the different parts inside. They are only able to experience a little bit of comfort by giving into the constant inflammation, by slowly changing their shape. I’m supposed to sleep through the night with these gloves, but I rarely ever put them on any more.
My hands have changed, and they continue to change. Some might say they’ve changed for the better, while others might say that they’ve changed for the worse. I like to say that they’ve changed for the necessary. The thought of strapping them into a position that they were once “supposed” to hold no longer seems like a smart idea to me. Yeah, I know…there’s always the notion of trying to prevent future damage, but there is also the reality of what already taken place and what continues to take place.
And as as I lay there in my “flare space”, a new thought entered my mind. I not only needed to accept my hands for what they are now, but I also needed to be ready to accept them for whatever they might become in the future. They will, after all, still be my hands. Over time they’ll probably continue to look less like other people’s hands, but that’s okay…for me, they will still be “normal”. They will be my normal.
I will never be ashamed of my hands, no matter what they look like.Not every person I encounter is going to be able to understand why my hands look this way, but those of us who do know the reasons will also know the truth: rheumatoid arthritis hands are a visible sign of the enormous strength of an individual who has experienced so much pain, that their hands have literally been pulled out of shape. I, for one, am proud of my hands. They have endured a lot, and will continue to endure even more. I will never be ashamed of them, no matter what they look like.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!