The first time I saw another person with a desmoid tumor it was online. To this day, I have actually never been face to face with someone that shares my disease. Makes sense. The odds that I would just randomly run into a desmoid patient are very small. We are a one in a million bunch. To be exact, we’re a 3 in a million bunch, as that’s how many of us are diagnosed in the U.S. each year.
I blogged before all of this, before I found the lump in my hip. In fact, I was diagnosed while writing my previous blog. I remember writing about that diagnosis, almost flippantly, telling my readers that I’d have this thing removed and I’d be up and running in no time. It’s adorable how naive I was.
After my surgery, after the month with the drain in my leg, after the walker and the cane and the physical therapy, I just didn’t have it in me. I quit blogging. I didn’t want to sit around and write, read, and edit. After being in bed for so long, I wanted to move. I had so much to say about what I had been through, but it was too fresh. I couldn’t open the wound again. I needed to heal, mind, body, and soul.
About a year after I closed up shop at that blog I was given the devastating news that my tumor had recurred. Well, tumors. I now had two. I was still so physically and emotionally exhausted from my surgery and recovery that I didn’t know how I was going to be able to endure the next chapter in my desmoid saga. That’s when I began to consider writing again.
Tamoxifen was the first drug we used to try to kill my tumors. For those of you not familiar with the side effects of Tamoxifen, they can be summed up in one word – menopause. I basically began to shrivel up from the inside the minute that first pill touched my lips. The hot flashes were, let’s just say, intense. I did not have one full night’s sleep that entire year.
I wanted to write. I needed to write. I was so tired, though. I didn’t have the stamina to write a blog. So, I decided to start an Instagram account. I viewed it as a sort of mini-blog. My very first post was a picture of the two drugs I was on at the time, Tamoxifen and Sulindac. My caption was: The Marriage of the Sun and the Moon. Tamoxifen and Sulindac, the not so dynamic duo.
Shortly after I joined Instagram, when I finally discovered the magic that is the hashtag, I found another person that had the same rare tumor as me. In that connection I found hope. I hadn’t met him or corresponded with him. I’d not even commented on any of his pictures at the time, but I didn’t need to. I saw a person out living life, having a sense of humor about things, finding beauty around him, and I knew it was all going to be ok.
I’m not the only one.
Something magical happens when we’re vulnerable and we share some of our dark spots. We find ourselves in each other. We find peace and comfort. We see possibility. We know we’re not alone. Every fight is that much easier when you’re armed with the knowledge that someone else has already gone through what you have yet to begin.
My decision to start my Instagram account, to write about my illness, was in some ways a self serving one. My head was swirling with so many thoughts, my body swimming in emotion, I needed to express it somehow.
Time wore on, though. Treatments failed. Side effects consumed me. I shared all those moments for the emotional release, of course, but I also began to wonder if there was another me out there. Had someone been diagnosed with a disease they had never heard of and needed to find another them?
I found myself in others when I most needed to. I first saw myself in the guy on the motorcycle, but it didn’t stop there. Mothers shared about their children. Women showed their scars. People talked about loss and failed treatments and surgeries and despair. They also shared their images of hope and laughter. They wrote about treatments that worked and their years in remission. In all that, there I was.
I’m not the only one and neither are you.
We share our stories for myriad reasons, but there’s only one reason why we seek them, connection. We need these stories because the truth lives within them. And, the truth is, we need each other because we are each other.
I decided to get back into blogging because so many desmoid patients and caregivers let me read their stories. They showed me that, even though my disease was rare, I was not alone. They are me and I, them.
That’s what I hope happens here when you read. I know that’s what happens when I read your stories. And, it’s occurring in every photo we post, every Facebook status we write, every tweet, every time. We are finding each other and in turn we are finding ourselves. That is why I tell my story.
Why do you tell your story?
*This story was inspired by the post, Seeing Crohn’s Disease Through The Eyes Of Other.