In May 1998, in a moment of inattention, I torqued my knee during a modern dance class. A small mistake but one that turned out to be life-changing. The surgery I had that fall for a partial ACL tear ended up costing me dearly: I came out with RSD, now called CRPS, and now live a life of managing chronic pain.
Since that time I’ve had three more knee surgeries and one surgery on my spine. I recognize this is probably as good as it’s going to get.
When it comes to my disease, the key word here is “manage.” I live a small and careful life. I rest often. I go to acupuncture. I’ve been to countless doctors and practitioners, both mainstream and alternative. I have a realistic idea of my limitations, which are many. I don’t like it but I accept it.
I take narcotics every 3-4 hours. Without pain management, my pain would be through the roof. With pain management, I really am okay. Usually. It’s not the life I had imagined for myself but I have, through a lot of hard internal work, come to a place of acceptance.
While having to balance out my need for solitude and rest, I’m actually quite physically active. I take a brisk hour-long walk most days, usually with a friend, so it’s a delight. And while I’ve had to accept that I can’t take another modern dance or ballet class, not even something like pilates, which I miss, I can do contra dancing and English country dancing. These are old social dance forms that are super fun, energetic, social, and utterly filled with joy. I get my endorphin kick and then I can dance for three hours, usually three nights a week.
I’m unable to be employed, but I do a lot of volunteer work, always around fostering community. I do things that matter to me and are of service to my communities. I like to think that I am a good friend to many; I’m known for making the most excellent chocolate chip cookies.
I need joy. I need my friends. I need this feeling of being alive and healthy, even if I’m going to pay for it with increased pain the next day.
Constant pain is exhausting. Fatigue is a major player in my life and terribly limiting. I don’t even have the stamina to go on a vacation. But I am okay. There’s much in my life that is joyful, and that is what I’ve chosen to focus on. I am proof that managing chronic pain and experiencing great joy can coexist.
We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.
Katie Olmstead is a 62-year-old woman who lives and dances in western Massachusetts with her two wild black kittens. Since her grown daughters no longer need her attention, she cares for friends in her dance and Unitarian communities, volunteering in organizational capacities and feeding people. For fun. For joy.
Photo by DeltaWorks