This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.
At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.
Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)
Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.
August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.
There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take you.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image Credit: David Monje
Thank you. I really think you must be psychic as it seems that , when I am feeling defeated, your weekly column restres a little bit of the hope I’ve lost. My hands are still functioning but my spine decided to fall apart this year. It started insidiously with a bone density scan last November that indicated a 7% decrease in density in my lumbar spine but still within “normal” range. Since then each month has presented a progression of problems which has culminated in the lowest three discs in my spine slipping. I’ve gone from walking 4 to 5 miles a day to being unable to walk to the end of my driveway. On August 9th I’m having multilevel (3) decompression & fusion surgery and looking at a very long and restrictive recovery.
Today, your column was (as usual) the first thing I read. Thank You for giving m hope to get through today.
Thank you for your kind words, Patricia. I wish you good luck with your surgery and a successful recovery that enables you to take your long walks again! I’m glad that my words gave you a boost today. Take care of yourself.
“Nevertheless, she persisted!” And thank you for that!