Why I'm Still Here: A story of survival
The idea of “business as usual” feels weird to me today, because my life certainly isn’t in its usual ebbs and flows.
As you probably know if you follow me on social media, I desperately need a specialized surgery and I need it soon. I’ve stopped being able to eat except for the rare day that I can get a couple of bites of something down, and I can feel the little strength I had waning with the pounds I am quickly shedding. The battle to get insurance coverage is going to take months - months I don’t have to spare when I am declining so quickly. In the midst of my fear and depression, my friends encouraged me to start a GoFundMe. It was difficult for me to ask for help, but my community rallied around me and as of today (Saturday, Sept. 28) I am nearly 1/4th of the way to reaching my goal. Once I make a little more, I’ll be able to schedule my surgery. (If you are able to help me reach that goal or want to learn more about what’s going on, here’s the link to the GoFundMe: https://www.gofundme.com/f/wonderformisswondersmith-emergency-surgery )
For years now I have learned to balance my passions, artwork, projects, and gifts around my physical limitations. (Which we now know are due to a tick illness and co-infection plus severe endometriosis.) I normally have to spend quite a bit of time in bed in pain, and the few hours I get every few days where I am able to move around are sacred to me. Everything I create - every piece of ceramic artwork, every recipe, every event - is confined to those precious hours. Every time my health changes or declines, I adapt to a “new normal.”
Right now, my health doesn’t leave room for any of that. I am completely bed-bound. If I don’t move or try to eat, my pain levels stay manageable. But just walking to the car to go to a doctor’s visit can cause extreme pain. I truly feel crippled, and have had to ask for help in more ways than I can even describe.
So, for those who are curious, this is what my life looks like now: my family and partner are my hands. I lay back on a lounge with a heating pack on my abdomen and direct them what to do and how to help. It’s been a huge learning experience in communication, as describing how to make a brushstroke or the specific motion of kneading bread is really hard to explain! I am so grateful for their willingness to be extensions of myself, their patience in waiting for me to find the words to explain what I need from them, and their open schedules that allow them to help me much more often these days.
From the outside, I seem pretty high-functioning, enough so that sometimes people challenge whether I really am sick or not. I have always had this huge drive - to be productive, to be creative, to be kind. On days that I cannot do anything but rest, I dream. I conceptualize new events or recipes. The work I do as Miss Wondersmith has become my lifeline, my purpose for fighting, and my reward system for working when I can. (To add a little perspective here: in college I got a really bad case of mono that had me bed-bound for a couple of months. I still received the only ‘A’ in one of my classes. And though I have gotten so much better at allowing my body to rest when it needs to, that stubbornness is definitely still a part of me.) You see all of this work because it is what keeps me going - every blog post is a stepping stone, something to focus on and be proud of and keep in my sights on the days of pain. My work saves me every day.
6 years ago, I thought I was going to die. I had a massive flare up and lost 30 pounds in a month (how??) Being a fairly small person, those 30 pounds were the difference between feeling secure and, well, feeling like this:
I felt like a bag of bones. I started going in and out of “the space between” - using self-hypnosis to try to escape the constant excruciating pain. I stayed in that space between awake and asleep, in the gray fog of almost-dreamland. There were times I would go 72 hours without sleep because of the pain, and then would collapse to get a few hours of rest. There were nights that I was so convinced I was going to die that I wrote goodbye letters to my family. On those nights, struggling to hold on, the rope that I clung to was “I’m not finished here yet.” Those words pulled me back from the abyss and gave me something to fight for. As I slowly recovered, I started to understand that I’d been given a second chance (hell, I fought hard for that second chance), and I was going to make this one count. From those seeds of thought, The Wondersmith was eventually born.
I hope this explains just why my work is so important to me. It saved me. It continues to save me. Being able to contribute something positive or beautiful or heartfelt to the world is why I held on when letting go would have been so much easier. It’s why I am fighting once again to try to find stability in this painful body. Being The Wondersmith is my PURPOSE. It’s everything I want to be. It’s my 5-year-old self cheering. It’s my teenage self nodding in approval. It’s my 23-year-old self looking forward instead of down. It’s my 60-year-old self looking back on a life full of meaning and feeling proud of who I am right now, in these difficult moments and nights of pain. It’s why I am still here.
Thank you for reading.
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