Illness doesn’t come with an instruction manual, especially when that illness is rare. Even I didn’t truly understand what my disease was, how it functioned, what my risk factors were, how it was best treated, or why I have it until years into my diagnosis when I finally consulted with a specialist. Add that to the fact that I’ve never really been seriously ill in my life and you can imagine I’ve been flying blind since my diagnosis five years ago.
Desmoid tumors don’t have a ribbon. Well, they do, but the last I checked it was shared with no less than two dozen other diseases and causes, including knee injury awareness and agoraphobia. Desmoids don’t have a month or a week. They have a day, a day that is shared with countless other rare diseases. Since there is very little study done of them, there is no five year survival rate I can look to for my tumor. Even my insurance company is sometimes like, what the hell’s a desmoid?
When I set out to write this blog I had a few goals in mind. First and foremost, I wanted people to be familiar with the words desmoid tumor. I wanted to be a voice shouting those words as far as my voice could carry them, giving a rare disease another shot at getting noticed.
Secondly, I wanted to raise my hand for other desmoid patients to see that they are not alone. I will never be able to fully express to you how impactful it was for me to finally find people that were going through the exact same trials and tribulations that I was. People that understood the treatments, the isolation of a diagnosis with a rare disease, and the frustration of having one, or more than one, of these beasts in your body.
And, I wanted to document all the life altering events that had just unfolded. Things that were so awful, but had somehow been such a treasure in my life. Events that had taught me to prioritize my time, hold on to the things that matter, and let go of things that didn’t. I wanted to write about the one thing that happened to me, beyond motherhood, that had cultivated such an enormous amount of love and empathy in my heart.
Mostly, though, I just wanted to write again. Being sick for so long had robbed me of my creative outlet. All those treatments I was on stole from me in so many ways. They took my energy, my happiness, they snatched the words right from my brain and held them hostage. A writer can write when they’re moody, they can have another cup of coffee when they are lagging, but when the words are gone it’s over.
And that was what I was thinking about when I wrote A Year Ago Today. I was thinking about my words being taken from me. I was thinking about the nausea, the diarrhea, the body aches, the pain, the lethargy. I was thinking about the financial toll and the emotional toll that it takes on me and everyone around me when I’m on chemo. I was thinking, I can handle it, but can they? I was thinking, I can handle it, but why do I have to?
Every time I have difficulty walking, experience pain in my leg, feel more tired than I should, I think about that last MRI. I think about increased cell activity. I think about the relentless nature of desmoid tumors. I think about friends dealing with recurrences and undergoing treatments again and again. I think about my words being stolen from me by the only treatment that seems to work for me. I think about the odds and the odds are not in my favor. Sometimes that breaks me.
When I set out to write this blog I had those goals in mind, but the one thing I didn’t want to do was shovel out unsolicited advice. I wanted to say to anyone who wanted to hear that this was how I got through it, get through it. But you have the absolute right, nay the obligation to yourself, to get through it however you see fit. There is no instruction manual for illness. I don’t know how the hell to get through my stuff. How the hell would I think I can tell you how to get through yours?
If I could, though, give out one and only one piece of advice, the only one that has ever made sense to me, this is what it would be: It’s not a sprint, it’s a marathon. And that’s really what A Year Ago Today was about. The first few years, I was gung ho. You could not stop me. Desmoids picked the wrong chick to fight with. And that gets you through in the beginning. You need to be mad as hell and not take it anymore, but that model is unsustainable. It won’t last you for the whole race. And, for a lot us, there is no finish line and we’ve got to run for the rest of our lives.
There will be times in this race when I have to slow my pace to a crawl. That may mean I participate in fewer activities, add more fun to my calendar, or it may mean I have to break a little bit. That’s what I did. I broke a little bit. I broke because I needed to. But that doesn’t mean I’m broken permanently. It doesn’t mean I quit the race. It just means I have to catch my breath for a minute, but I’ll be back.
I have a friend named Kate who put it best, “Sometimes it’s what the moment requires.” Kate has multiple sclerosis. When I tell you she’s one of the most intelligent people I’ve ever known, it’s not hyperbole. She’s a gifted woman, so damn witty. She will joke about drooling from temporary paralysis and appearing as though she’s drunk when she can walk. She also breaks from time to time too. Her disease has put her through hell, but as she told me, “We get through it because we have lives to live and shit to do.”
And that’s the only advice I can ever give to you, sometimes you have to break. This race is a long one and you won’t last at full speed. Break, and don’t feel guilty for it, don’t think of it as defeat. Break, and let people know it, let the ones who love you carry you for awhile. Break, and catch your breath. The race will be there when you’re ready. Break, and you will get through it because you have a life to live and you’ve got shit to do.
*Featured image courtesy of Pixabay