Today’s inspiration is written by my friend and guest blogger, Jenn Heater. “Jennifer Love Heater” and I met at a little comedy school in Los Angeles. She is incredibly smart, has a great sarcastic sense of humor and has a huge heart for politics. I knew vaguely of a sickness a bit after we met but I never expected my good friend to be chronically ill and/or bedridden, etc. a majority of the years I would know her. I find her strength to be dumbfounding and courageous, and motivates me personally to remember how good I have it. Be sure to send her lots of love in the comments.
Young & Sick: Coming to terms with being chronically ill
It’s a strange thing to live a diverse, vibrant life full of friends, fun and an enviable career, and then watch it ebb away slowly. In my case the shift began quite gradually and continued for years at a time until I could no longer deny that the days of struggling to get of bed had become the norm instead of the exception.
Looking back, of course, shows a much different picture that what I had accepted as my reality while it was happening. These days when my memories pop up on Facebook, they are likely to include references to feeling bad, but are tempered by my laughing it off. A simple winking emoji to deflect the precariousness of my slipping health.
When I suspected that my pituitary gland had stopped functioning again, besieged by a tiny tumor with the ability to send many of my body’s functions out of whack, I was not immediately nonplussed. I had faced this beast called Cushing’s Disease twice before and I was still living my life on my own terms.
You’ll notice I wrote was.
“In the throes of my first battle with Cushings.”
Roughly three years ago, things started to slip. I was having intense pain on the right side of my face, accompanied by bright red flushing. It was like I had heavily applied clown make up to one cheek and completely bypassed the other. I was referred from doctor to doctor (including some heavy hitting medical centers like UCLA and the Mayo Clinic) and no one quite knew what to do with me. Things took a turn for the worse when I looked in the review mirror while parking at work and noticed that the entire right side of my face was drooping. I walked into my friend’s office and asked what she thought, and she replied with “you are going to the hospital now.”
“Hospital stay this year. One of three.”
After the emergency room doctors ruled out stroke, it was determined that I had a fairly mild case of Bell’s Palsy. Reflecting back, this was the moment that things began to advance from a slow roll to a full force spiral down.
After I was diagnosed with a third occurrence of Cushing’s Disease I figured that once the neurosurgeons deftly obliterated my pituitary tumor, that I would be on my way to healing, like I had done twice before. Turns out this was not the case my third time out and I’ll admit I grieved the loss of my old life deeply for a while. It’s hard to have this picture in your mind of what your life will be like and realize that this cannot be so. Not because of the choices you made, but because of the state of your health.
Friends and family often ask how I keep going despite the pain and the constant medical issues that keep popping up. My answer to these queries, has always been the same: it’s better than the alternative. Keep getting up in the morning is better than not having that chance at all.
“Five hour infusion test.”
Am I angry that life has turned out this way? No, absolutely not. That doesn’t mean that it’s always rainbows and sunshine. There are days when the pain is excruciating or I attempt a small task (think taking the shower or cleaning a few dishes) and am totally exhausted and have to lie down. Those days, when my standard “I’m fine”/crack-a-few-jokes mask slips, you can glimpse the weary part of me that wonders why and feels beaten down and sad. I try not to dwell in these moments, but sometimes seeing all the life milestones my friends and former classmates celebrate only serves to remind me what I’m missing.
Because being chronically ill does not take a vacation. It doesn’t care whether I have to miss my 20 year reunion, countless birthdays, political conventions or lovely weddings in Mazama. But I cannot dwell on the things that I missed. I can only send my heartfelt apologies and hope to start engaging again. Someday. Sometime. I don’t ever expect to be back to the busy, engaged me that I was before I lost my health, but I still hold on to the hope that I will someday be some version of better.
“This summer with my mom.”
And those that I hold close are there, hoping along with me. Silently waiting for the moment when I start to reappear in their pictures. Smiling and laughing like we used to, but now knowing so much more.
So very much more.
Jenn is a sometimes government affairs professional who is currently learning how to take time to focus on her health. With her yorkie Gracie by her side, she is finding new ways to fill her days and reinvent herself. Jenn enjoys finding humor in the inanities of being chronically ill and battling Cushing’s disease. You can follow her journey here: http://www.talesofamedicaloddity.com