Although I love and respect each and every one of you, there are some things we need to clarify. I have written this letter with no intention to hurt anyone; only find understanding.
With Thoracic Outlet Syndrome, surgery does not heal all. Our condition is so rare, doctors do not have a basis to go off of. It works for some, fails or makes worse for most. There are definitely success stories where people return to their normal activities and have a happy life. I am not there yet. So when I have a hard time answering your questions, please do not look at me like I am a fool; for not even the doctors know the answer.
Along with Thoracic Outlet Syndrome comes chronic pain. I've been dealing with this for years. If I may look grumpy or I'm less than talkative, I am only furrowing my brow because I'm in pain. Make no mistake, I try to stay in good spirits. I think of all the things I'm thankful for in life when lightning bolts strike my temples and run down my spine. I think of all of you. And I think of my support groups that have to go through the same pain and I loathe this condition for hurting my dear friends.
Chronic pain brings fatigue, which brings an undeniable feeling of depression. It's like waking up chained to the bottom of the ocean every day and not having enough energy to break the surface. If I do make it to the surface and leave the house, I have to mentally prepare myself. I need to plan out what I'm going to say every single day. I have to make excuses to miss out on great opportunities due to exhaustion. I have to force myself to go through a full day of work pretending like everything is OK, even though I want to fall over. The worst part of this is quieting my thoughts. Which is why you'll most likely see me with headphones or my iPod very near. By the time I get home, a storm has set in and sunk my boat. Dishes and housework, normally dear to me, become my enemies at the bottom of the sea. Finally resting in bed, I cannot shut my thoughts off and usually lay restless until the wee hours of the morning when my body can't take it anymore. I wake up to the sunrise and realizing I have to do it all over again, I smile knowing that I can.
You may not understand this, but I am battling with Thoracic Outlet Syndrome every day. If I have a really good day, I'm probably going to have a bad one the next. And that's not pessimism. You see, if I have a wonderful day with you and use all my energy, I will wake up sore the following. However, I will wake up with a sore body, not a sore heart. I appreciate my good times and that makes my bad days completely worth it.
On that note, I can do certain activities one day and may not be able to do them the next. Do not fret, a day will come where I can do them once again. It doesn't upset me. I've learned to live a content life and be happy with what I can do for now. I cherish my past and excitedly wait for my future while trying to live in the now.
Here's the kicker. I've heard, "You're too young to be dealing with an issue like this," way too many times. I deal with this battle every day and understand your frustration. I am not frustrated with the pain as much as I am with the mystery of it. Every time I hear those pain staking words come out of another loved one, it puts my body into panic mode. Because I AM only 23, I could very well be dealing with pain and exhaustion for the rest of my life. The less I think about it the better my mind is at ease. What doesn't kill me, will only make me a stronger woman in return.
I've come to realize my life is chaotic and unexpected. I learned that every day is going to be a battle. I learned that every day has something new waiting for me, whether it is good or bad. If I get a bad phone call, I make up for it by doing a small task that makes me still feel human, like painting. I read and catch up on my episodes of Mad Men and Archer. I take comfort in my cats, my biggest blessing of all through this. Some may call me a crazy cat lady, but I would be crazy if I didn't have them. I enjoy my nights out with all of you, but also appreciate my nights in. It's a roller-coaster I've come to ride on every day of my life for the last few years.
I don't know what the future holds, and neither do you. My days might be different from yours, and you might be battling a bigger or smaller demon too. This letter has no intent of complaining or looking for pity. I am well aware of every single positive that my life has held on to ever so tightly. Thoracic Outlet Syndrome is difficult for everyone of us that has to live in it's painful grasp, and it's more difficult if we don't have the support from our dearest. The purpose is to ask for a little empathy, hope and encouragement from each and every one of you, even on our toughest days. Because a little goes a long way.
Here is some help:
Encourage me when I've lost a battle to a phone call with a doctor.
Hug me lightly when I've had a bad day.
Tell me I'm strong when I feel like giving up.
Re-direct my thoughts positively when they stray into the darkness.
Tell me how proud you are of me, even at my weakest moments.
Make sure I never give up.
Equanimity,
Kelsey Lynne
