I was diagnosed with indolent systemic mastocytosis (SM) 25 years ago, and spent 10 years prior to that trying to find help. Living with this rare disease changed my life slowly at first. Then in 2017, things started to speed up. It took another four years of fighting and advocating for myself full time to finally get a specialist to treat my disease. And that had to be out of state.
Finding new hobbies that fit my health
Before my ISM progressed, I used to enjoy adventures like zip lining, white water rafting, repelling, cave spelunking and hiking national park trails all over the United States. I would take off on cross-country road trips, sometimes driving up to 20 hours at a time to get to my destination. I would stop in the middle of country backroads, park on the side and take in the beauty of a sunrise or sunset. No one else on the road — just me and freedom.
I had other hobbies too, like reading, studying theology and tracing my ancestors through genealogy. My genealogy research began in 1999, so I’ve been at that awhile. I would work slowly when I could find the time, but I enjoyed it immensely.
Four Christmases ago my sister gave me an Ancestry DNA kit. What a wonderful, thoughtful gift. It sparked a whole new desire to trace my ancestors.
I had the time, now that my body prevented me from doing the things I once did for fun. I have always been good at researching and it is fun for me. As of right now, I have almost every line traced back to the 1500s. I started hitting dead ends, so I’m venturing off into adding aunts, uncles and cousins into the line as far back as I can. Since I began this innovative approach to my ancestral line, I have found that I am related to several people that are well known.
I recently found out that Rebecca Towne Nurse and Mary Towne Easty were my 10th great-grand-aunts. They were both tried and executed in 1692 during the Salem Witch Trials, a horrific time in history. Of course, they were innocent. If I had known this when I was in Salem a few months ago I would have visited their graves specifically, but I did take pictures of their markers not knowing we were related.
Emily Pauline Johnson, a famous poet, is my seventh cousin four times removed. Her father was a Mohawk chief and she was Canadian.
The last famous relative I found was Charles Arthur “Pretty Boy” Floyd, also a seventh cousin four times removed. Charles was a notorious bank robber during the Great Depression and shot by the police at the age of 30 in 1934.
I can’t wait to see who I can find next.
You can find new hobbies, too
I personally believe that finding hobbies you enjoy based on your health is something we all need in our lives.
I am writing all this to show that there is a way to find other hobbies we can love just as much as the ones we were once capable of doing. Mine are research and studying theology. If you’ve never given it any thought prior to reading this article, you might want to try it. If research is not your thing, search for something else. Just because our lives have been changed by a rare chronic illness does not mean we are supposed to sit by and wait on the worst. There are ways to find enjoyment still. Find something that makes you happy.
There will be days when you still want to do nothing. I do that. Sometimes it’s hard just to make myself get up out of bed, either because of physical pain or mental health. But I know it will pass. I just make up for it when I’m able.
We all have so much life to live and people that love us. Let’s make the best of the time we have on this earth and don’t miss the beauty that surrounds us. It’s everywhere; you just need to open your eyes and mind to see it.
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