Last Thursday was the one year anniversary of my pump explant surgery. If you’ve followed along this crazy journey, you know that my pump broke in January of 2016. Instead of having it replaced, after a brutal period of withdrawal and amped up pain, I decided to wait a few months. Basically, after not dying from said withdrawal, I began imagining a life of not needing monthly pump refills – each consisting of being stuck in the abdomen multiple times. I imagined a life beyond having morphine manage my RSD pain. For those of you who (thankfully) don’t deal with a painful medical situation, I’m absolutely certain that it sounds strange. I thought it did too, until it didn’t. That pump saved my life.
Anyway, the pump came out. Despite initial complications, my body overcame the post- op nonsense and started healing. And not just physically. I began to heal emotionally. This year has shown me a whole new aspect of life. It’s helped me realize that there’s more to be done. Mainly that my life won’t consist of being in the background of my own story. Anyone can relate to that feeling. Whether I’ve accurately described it or not, I can’t be sure. For many years, I was just grateful to blend into the background. Now, I feel like the scene in “The Wizard of Oz” where everything changes into technicolor. I won’t live under the radar any more. I’m not even sure that’s possible.
Not long before my operation, I’d started classes at FIT, (Fashion Institute of Technology). My second year will begin in September! I realize that I’ve nearly finished all of the core classes. Now I can focus on the electives specific to my major, which is wardrobe technician. It wasn’t long ago that I doubted my ability to handle being back in school. Isn’t that what we do? We doubt ourselves into corners, into what we deem impossible impasses. I think mine stemmed mostly from spending so much time and effort trying to keep control in my own life. RSD strips away SO much of our ability to make choices, because RSD steers the ship. “I had planned to go out, but I’m in so much pain.” “I’m sorry I can’t meet you, I’m too tired.” “Mommy can’t play right now.” I remember telling my toddler, who was the gentlest little snuggler, that I couldn’t hold her because I had a boo boo arm. She’d stand next to me and give my knee the softest “pat pat.” Then she’d say “I’m sorry mama.” SHE was sorry. That broke my heart. Sometimes I’d hold her to spite my pain. Like, “Take THAT RSD! You’re not going to keep me from my baby.” But RSD makes a lot of the choices for us, despite our best efforts. So we must fight back, even for what seems like the smallest victories. I think every victory is a major one, because of the enormous effort required to win them.
As the year progressed & I traveled further away from July 27, I dealt with increased pain in my hands and arms. This will forever terrify me because I sew. There are things that have to be hand-sewn and any struggle sets me back. But, once again, I powered through. It’s like a battle, between me and my RSD. I’ll likely fight it forever.
And there will always be times when there’s a quiet period, a lull, and that really scares me. Things will be mostly ok and then – seemingly out of left field – they won’t be. But that’s par for the course. That’s part of the “chronic” in chronic illness.
I remain grateful, through all of this. Things could have gone differently with that operation. Things could have been worse. But they weren’t. I survived. And I believe that, most of the time, I’m thriving.
It’s kind of funny, my pain doc always asks me about the shows I’m working on. He even remembers that I work with dancers. As we chat, he reminds me to rest and take care of myself. And he’s constantly telling me to delegate. I merely ask, “Have you met me?!?” LOL.
When I was in the hospital for the pump trial, three years prior to actually getting one, I tried explaining to my daughter – who was very young at the time – what a pump was. After telling her about it, she got really quiet for a few minutes. Then she asked, “so you’ll be like a robot?” I can’t remember exactly how I answered her. But I do recall trying not to laugh and cry when I did.
Having the pump and all of the hardware in my spine made me bionic, at least that’s how I joked about it. So now I am semi-bionic.
If anything can be learned from this journey, it’s that we’re more resilient then we believe. Even if the balance of that resilience moves back and forth on the scale between “bad ass” and “not so much.” I’m ok with that.
Wherever you are in your journey, I wish you technicolor strength and courage. Celebrate yourselves because it’s not easy living with RSD – or any other chronic illness. Heck, living in general isn’t easy.
In the meantime, until you can really do it for yourself, I will celebrate each of you. And thank you for the support you give me. I’m so grateful. On to year two!
Be kind to one another.
Peace and painlessness,