Dialogue with my son, Tye, when he was 2 years old. He had just injured himself and was crying:
Me – “Where did you hurt yourself?
Tye – “On my body!”
Me – “But where on your body?”
Tye (pointing at his leg) – “Right HERE!”
Me – “Want me to kiss it and make it better?”
Tye – No, I don’t want you to kiss it ‘cause I’m CRYING right now!”
I started off thinking I was going to write about something completely different for this post… but, as life would have it, things don’t always go the way we plan.
Nearly 15 years ago, I had a neurofibroma removed (a tumor of the nerve sheath). It ended up being benign, but the damage that it did to my nerve left me with a condition called Reflex Sympathetic Dystrophy. I imagine I will write about this more than once in my forthcoming posts.
While I hated RSD for the havoc it wreaked on my life for the 7 years that I suffered heavily, I am grateful for it today. I feel like I have a better understanding of the things that really matter in life. I am grateful that I even HAVE a life… and that’s a crazy awareness to have. I recognize that I am clueless in this world and just doing my best to make a difference as I put one foot in front of the other. I have 2 children who otherwise would probably not be mine, had I not been forced to wait so long to get pregnant. It was certainly never my intention to give birth at 38 and 40.
But then again, it was never my intention to do a lot of things that I have done. The world has a way of redirecting you.
Easy for me to say… I have my health, with a few hiccups here and there. I have two healthy children. I have a good marriage, a small but genuine circle of family and friends, and the chance to pursue a career about which I am incredibly passionate. I even have the luxury of being home to raise my children. But it wasn’t always that way.
In 2007, I was in a wheelchair and weighed 85 pounds. I rarely talked with anyone other than my husband, because I never really had anything good to talk about. I was in pain. All. The. Time. Physicians told my husband that I should be put into permanent care. I should have my arm amputated. I would be dead in two years.
Fortunately, my husband and I are both fighters. We didn’t like what we heard, so we kept searching elsewhere. We found an experimental treatment in Mexico that was radical and risky. People with my condition were being put into comas – ON PURPOSE – using a drug called ketamine. The thinking was that this drug interrupted certain receptors in the brain, allowing the brain a chance to “reboot” just like a computer.
I know it sounds absurd. Crazy, even. That someone would risk their life to be put into a coma… it’s the thing out of which science fiction movies are made. Pure insanity. Right?
No. Not right. When you have nothing to lose, you will try anything for a win.
By the time we started seriously considering the coma, I had all but given up on life. I would sleep for brief stretches at a time, my sleep interrupted by periods of intense burning, stabbing pains all over my body. The right side of my body was covered in ulcers that burned deep down into the tissue, inviting infection. Every day I covered those ulcers with lidocaine patches in an effort to dull the horrific pain. Even if for just a moment. And every day, I was forced to rip those patches away when the medicine wore off. Little by little, I would peel them away from my damaged skin, trembling and shaking in agony. I would peel back an inch, and then allow myself to dissolve into tears for 10 or 20 seconds. Then I would start again.
Showers were torture. The water felt like little blades, every drop piercing into my flesh. Clothing was a necessary evil.
My mood swings were horrendous, induced (ironically) by both my pain and my pain medications. I stopped having periods. My legs buckled beneath me the moment my feet hit the ground, due to muscle spasms and weakness. My blood vessels stopped cooperating and my body lost the ability to self-regulate temperature… I couldn’t even sweat right. I had to have a port placed so blood could be drawn and medications could be given. But surgery meant another injury. And every injury taunted my disease, inviting it to spread further.
Eventually, my fear of the coma far outweighed my fear of living with RSD. It also outweighed my husband’s fear.
His fear of living with someone with RSD.
His fear of losing someone with RSD.
We made the decision. We traveled to Monterrey, Mexico, and I was induced into a coma using the drug ketamine.
But then something happened that I will never be able to explain. I got better. Slowly, bit by bit, my body recovered. The universe said, “Hey, Shannon, THIS is what it feels like to live without pain. THIS is what life can be.” I became pregnant only seven short months after the coma. Only seven months after saying goodbye to my husband, I was able to tell him that it was time to say hello… to our baby.
So how do you reconcile the universe when it redirects people back to hell over, and over, and over again… especially when they are good people?
How do you reconcile a universe where some people get better, but others don’t?
All the time, I find myself asking why I have recovered, when others still suffer. I have met so many beautiful souls during this journey. So many people who suffer from this disease.
One, in particular, whose story just rips my heart from my chest.
My friend and fellow RSD warrior, Jessica, has been through at least 3 comas. It is difficult to explain all she has had to endure. She initially went through the first coma only about two years after I did… but she’s back in Mexico today. Just a few days ago, she had surgery again. And today, she fights yet another RSD relapse.
The reality is that I cannot explain why. I no longer even try. I have come to realize that it is not my place to understand everything that we all go through. It is my place to do the best that I can do with the cards that I am dealt. It is my place to raise my children as well as I can. It is my place to recognize all in this world for which I am grateful. It is my place to never forget, so I can always be grateful.
Beyond that, though, I don’t have the answers. But during weeks like this past one, the questions still burn as badly as that damn disease.
This blog post is dedicated to my friend, Jessica Stevens, and her wonderful family. I don’t know why I’m better and you’re fighting again, Jess. But I’m with you. And I love you.