There. I said it. I am publicly admitting that I am frightened to my core nearly all the time. I don’t need to be, well, at least I don’t think that I need to be. I don’t know. Life was so much simpler when we were kids and naively assumed that we were immortal. Then, without warning, life kicks you in the babymaker and suddenly you realize that there is cause for concern. You find yourself learning how to compartmentalize things, bartering with your emotions. Let me back up for a moment and bring some of you up to speed.
First, if you have a few minutes, go back and read (or reread) this post from last fall: Finding My Way.
Cystic Fibrosis is a bitch. It’s hard to believe that on September 8, 2014, it will have been one year since my lung decided to collapse. I have been chugging along ever since, keeping busy as ever but knowing when to listen to my body and slow down for a while. I have suffered from occasional panic attacks most of my life, though now when they occur they are a little more devastating having been compounded with PTSD. At the point in time that I wrote that post, Finding My Way, I had been released from the hospital and sent home with a chest tube. I returned to as many normal activities as my body could stand; very few, as it turned out. Once a week, we would drive the nearly 4 hours back to Charleston so that the surgeon could place a clamp on my chest tube. This allowed them to see if my lung would stay inflated without the assistance of the tube. Each time they clamped it, my lung would collapse again. They would remove the clamp and I would feel the air forcibly and instantly re-inflate my lung. After the third trial, I was told that I would have to be readmitted to the hospital for further surgery.
“You have to wait one more week,” I told them. Uncomfortable as it was, I was surviving with the chest tube. If I could tolerate it for another week, it would allow me to celebrate my 40th birthday with my family. The doctors agreed to it and I was scheduled to be admitted on November 5th, the day after my birthday.
On Halloween night, we put up our Christmas tree…just in case. You can revisit that emotional ride HERE.
On Friday, November 1st, my friends threw a birthday party for me at our favorite karaoke place. On Saturday, November 2nd, more of my friends (and trivia teams) threw a birthday party for me at the pizza bar where I host trivia. At 2:00am, my husband loaded me into the car and we drove to Atlanta to spend November 3rd at the inaugural Walker Stalker Convention. We got home that night in time to watch a new episode of the Walking Dead. I did, in fact, spend November 4th celebrating my birthday with my family. And then I left again.
Short story long, I was admitted on the 5th, had one final major surgery on the 7th, and was discharged on the 15th. At a follow-up appointment on the 26th, I finally received the “all-clear” from the surgeons, and all stitches and so forth were removed. Two days later, we absolutely enjoyed Thanksgiving together.
It was a long winter. First, I had to detox from all of the pain medications they’d had me on for two months. Then, I had to regain my strength. My CF doctor realized quickly that I was hesitant at doing a lot of things and becoming a bit of a hypochondriac with every twitch, twinge, and ache I endured. He reminded me of what I already knew: You can’t live life if you’re going to be afraid all the time.
I had to learn when it was okay to shake it off. It’s not always easy, but I have to do it. I’ve spent a good portion of my life building the reputation that I am some strong person; always smiling, always laughing, conquer-it-all “super” Kerri. I am the queen of fake-it-until-you-make-it. The thing is….I am that person. I just need the coward in me to shut up for five minutes and accept the strength that’s there.
To this day, every ache and cough and twinge makes me pause. I find myself lying in bed at night listening to myself breathe; every snap, crackle and pop emanating from my lungs. And every time I close my eyes, I wonder if it’s my last. Will I go to sleep and not wake up? Oh man, anesthesia did a number on me! I still have no feeling on the right side of my chest, from my rib cage to underneath my right breast. The scars and discomfort follow the exact line of where a bra should lay. If I could get away with never wearing one again, simply because of the pain they cause, I would do it in a heartbeat. I just don’t think my friends are ready for the National Geographic version of these funbags.
Currently, I find myself in the position of reliving the past. Last summer, I went to Florida with my daughter, sister and mother for a week. When we got home, school started up and I got busy doing stuff and thangs. Boom! The lung collapsed. All of the plans we had for the fall–Halloween, family get-togethers, the Old Town Zombie Crawl, conventions, all the holidays, and so forth…all of it went haywire as I began to fall apart. Fast forward a year….My daughter, sister, mother and I just returned from Florida. School just started back. My schedule is filling up with family get-togethers, the Old Town Zombie Crawl, the holidays, conventions, and so forth. Wow. My heart rate literally increased as I typed that last sentence. Paranoia has forced its way into my brain. I have an overwhelming sense of deja vu. Every single day that goes by, I wonder if it will happen again. I get more and more nervous about making any long term commitments. I know that it is crazy, and so I fill my schedule regardless. But, I can’t help feel insecure about it.
Living with cystic fibrosis is like living with a clock over your head. Living as long as I have with cystic fibrosis is like living with an entire clock tower over your head. If only lightning would strike it, and freeze time for me Back to the Future style.
I’m not sure why I wrote this, and I apologize for the length of the post. I suppose it feels better to acknowledge it once and for all. It’s okay to be afraid. It’s okay to be upset about what I went through or the cards I was dealt. It’s not okay to let it fully consume me or cripple my day to day existence. It’s not okay to allow paranoia and irrational fears about death and dying to prevent me from living life to the fullest and enjoying every moment with my daughter and husband, or our family and friends. I am going to get up every day and do what needs to be done, in spite of that stupid clock. I am going to celebrate my favorite holidays in order this year. I am going to walk into the Walker Stalker Convention and actually get to spend a full three days there, giving the event proper media coverage this time. I am going to hug Norman Reedus and Melissa McBride without a chest tube getting in the way.
And, I am going to turn 41 years old without being afraid of what comes next. My family here on the Island of Misfit Toys loves me even though I am broken. Beyond the love, none of the rest of it even matters.