The end of 2017 was very difficult for my family. There were some legal challenges with living situations and my son and I are temporarily staying in the extra room/office of the house my brother and his wife are living in. My parents are also here. We’ve always been close, sharing, if not living space, then the same town. This time is different.
This time, my parents are older. Mom has some medical issues that make her life incredibly challenging. Dad is 81, and raised in an era when emotion was not a trait that men showed nor learned how to properly handle within themselves. This time, my brother is married and has two beautiful children of his own. This time, we’re in a state without a support system of friends that lend a helping hand when things need to be done that are too much for us.
My brother, mother, son, and I all live with Ehlers-Danlos Syndrome. Haven’t heard of it? Don’t worry. We still have to educate medical professionals on what this connective tissue disorder is and the constant pain and fear of injury with which we live. Whereas you may wake up with a slight ache or pain, generally a 1 or a 2, we wake up at a 5 on good days, struggling to force ourselves out of bed. A fall like the one I had a week ago, may not injure you severely, whereas I cracked two ribs. My mother, a Navy veteran, always taught us to keep going. That the work needed to be done, whether we were up to it or not. Somewhere along the way, I lost that mentality. I bought into the idea that when it hurts, we need to stop. Unfortunately, it always hurts, and I’ve let a lot of things get away from me in the past few years.
Colorado is a hard place for me to live. There’s a lack of vitamin D, high altitude, and a pain level that’s through the roof. However, Colorado is also where I was finally diagnosed with a cholesteotoma that threatened to poison my brain with infection. Colorado is where I found the most amazing surgeon I could imagine who persisted, by my side, through two mastoidectomies, before a final third radical mastoidectomy with canal wall down. I’m convinced he saved my life as I’ve struggled with that ear for years, having doctors tell me it looked perfect. It’s time I stop regretting that I am ‘stuck’ in Colorado, and start appreciating that I am alive to find where I truly belong.
Why are all of these things important? Because I submitted a story tonight. I am proud of it and I wanted to tell my mom. But my mom is tired. She is battling against the same exhaustion, the same pain, the same depression that I battle, but she’s been doing it for 32 years longer than I have. Almost twice my life, she’s lived with all of this. My mom was in bed because tomorrow she has to take care of my son, something she does with love everyday while she homeschools him so he can have the kind of education he deserves instead of that which was provided by a system that hears autism and not Aspergers.
Tonight I came to the realization that writing must come second. It sounds logical, but for me, writing and resting go hand in hand. I can sit and write. I can rest and write. My imagination remains active, even as my body falls apart. My family, the people who I love, must come first. I am tired. I hurt more than I have before. But this is the high time. It will just continue to get worse. If I stop now, if I put off doing the things that will help my family now, when I’m older I will truly have nothing left.
So tonight, I will sleep, knowing that tomorrow I will go to work. When I get home, I will start on the long list of things I’ve promised to get done, but neglected while I rested. Tomorrow, I will focus on the next thing that needs to be done, until each thing is completed and the people I care for most have the support they need; the support they give me.