“With Love from the Glass Princess.”
That young woman who thought she was made of glass had no idea that she was so wrong, and that someday, she’d discover she was really made of. She would learn that she was forged in fire, stronger than anything that could ever shatter.
When I got my diagnosis of fibromyalgia in 2013, my boyfriend at the time was both very supportive of me and also nervous about what this would mean for his life. At times, his focus was more on himself than anything. What would this do to him? Our future as he wanted it to be?
It’s understandable. We were planning on getting married. We had talked about living out in the mountains of Colorado many miles from any major city, and all of a sudden, I knew that I needed to be close to top-quality medical care, meaning that we’d need to be in or near a big city. It wasn’t what we had planned (well, more like what I had followed him in wanting and planning). It was inconvenient for him and us as a couple, a unit.
But what about me as a person, the one who was in extreme pain and wondering what my future would look like as an individual – not part of a unit, not someone’s girlfriend, but just me? How inconvenient this pain was. How soul-shaking. How dream-shattering. My life had been ripped open by a single word – fibromyalgia. Nothing was ever the same after it. It was split into before and after. My skin and bones were on fire because of the untreated symptoms I was dealing with at the time, but my heart was on fire too, and the ashes were landing wherever they damn well felt like it. Everything I knew was changing in ways I never thought I could regain some control of someday. I had no idea how to face this, and no matter how many times I reached out to friends and family members or tried to start conversations with my boyfriend about it, the ashes were everywhere, and they were clouding my vision and hurting my eyes.
When I had a life-changing experience that inspired me to start this blog, I talked to him about it and he was in full support. We were brainstorming names after we identified the main concepts and hopes it would have. He had been treating me differently since the diagnosis, with a scared sort of distant touch, like he was afraid he was going to break me because of the extreme pain I was experiencing. I looked at him and said, “How about ‘With Love from the Glass Princess’?” He waited a moment before telling me that he thought it was sweet.
When I had dinner with my family later that night, I shared with them what I was about to do. My mom stared at me and told me I needed a different name because I was bigger than that small way that I saw myself. We all went back to the drawing board, and we ended up with the more hopeful name of “Illness to Wellness.” The wellness piece felt so fake. It was only there because my family said that someday, it could be part of my life experiences again.
It took me a while to feel any sense of agency about my health. I started getting it when I went to physical therapy for the first time, and it kept building as I got put on some medications and talked about my pain with therapists and loved ones (even, and especially, after my near-fiancé became part of my past rather than my present). But the wellness piece continued to feel so fake for so long, despite my best efforts. I eventually hit what became my rock bottom, and while I was down there, I sought the best help the medical system had to offer. I ended up at Mayo Clinic for a month-and-a-half of my life, where with the love, dedication, and skill of others, I started crawling my way out of the depths, by hook or by crook. I started seeing the light again, and I went out of the tunnel of my deepest sorrow and anguish and climbed higher than I ever thought I would. I not only got out of the tunnel, but I stood up and felt the warmth of the sun once again. And I have kept on climbing ever since.
This climb has sometimes come with a step back or two in between, and yet it always continues. There have been many stumbles along the way, and I’ve struggled with the idea of being a success story because my life – and everybody’s life –is so much more complicated than “yes” or “no”, “good” or “bad”, “painless” or “painful.” Yet the victories have overwhelmed the stumbles, even though the stumbles are as much a part of my path as the victories. It’s a both/and story. It’s not a perfect victory, and yet these days, I don’t resonate at all with the idea of being made of glass.
I’m stronger than I ever dreamed myself to be. It’s a tricky word, strength – it’s not perfect. My life will always be really complicated because of the incurable (at this point in medical history!) illnesses I live with. I’m still figuring out what wellness looks like to me, but I’m fighting like hell for it every day. And it’s working. Not perfectly, but it’s working. I’m returning to Mayo Clinic this week, not as a patient, but as a potential employee. I am six months away from crossing the graduation stage at my seminary. I have fulfilling relationships. I exercise and go on hikes. I laugh easily and often. I’m not so scared to travel or plan for the future that my fear stops me in my tracks. I’m going to be working as a hospital chaplain resident next year somewhere. Even though I don’t know exactly where yet, I know it’s going to be brilliant.
These days, I know with certainty that glass is not what I’m made of. I’m made of tenacity. Determination. Stories. Silliness and seriousness alike. Patience and impatience in a synergetic relationship. Empathy. Passion. And most importantly, hope. So here’s to the people who have helped me realize that I am unbreakable, even though I have scars. Here’s to the hard work I’ve done to believe it, too.
I’m not made of glass. I’m made of hope.
One thought on “What I Almost Named My Blog Five Years Ago”
Wow. Thank you so much for sharing your journey. You are so right not to have called your blog what you wanted to originally. As someone who has suffered severely with long-term illness as a child through to twenties, I can relate so much to the woman you wrote about in the beginning. The idea of glass and fragility can be so potent at first, until you realise just how strong you have to be in order to get through each day and that you may actually be made of the toughest material out there. You should be so proud of yourself and all the steps you have made. Congratulations on all you have achieved, and well done too!!