Driftwood

I sit here staring at the egg-white walls of my bedroom.  My cell phone, propped on the coffee table in my living room, is supplying me with unlimited Ray Charles Pandora.  It is interrupted as a familiar ringtone echoes through my apartment.  It was my Mom's.  One ring.  Two. Three. Four.  Hound Dog by Elvis Presley fades back in as guilt swallows my body.  I haven't felt like this since my rebellious days in high school.  Where every emotion I had was negative and hurtful and swallowed me whole.  It makes me realize I don't know my place in life right now.  It makes me feel like I am no use to anyone.  It makes me feel alone.  I drag my computer across my fuzzy minion blanket, open up Word and start typing.

Dear Family,

I no longer can be a part of you.  I cannot feel my place in this once close clan.  I am not understood.  I am not accepted.  I feel belittled.  I feel worthless.

I see your stares as you watch me slow at work.  I wince in pain as I bend down to grab papers my clumsy hand every so lovingly dropped.  You do not help.  You do not question.  You only stare.  You do not even feel sorry for me; you just look at me like I am nothing. 

You are angered easily when I forget something, go to dinner with friends during the night and can't go to work the next day and when I say I don't feel well enough to perform a task.  You are annoyed when I talk about my condition to someone in front of you.  You avoid the subject when I try to give an update from a doctor's appointment.

You don't question my progress.  You have no knowledge of my medication withdrawals, which gives me sweeping mood swings, alarming brain zaps, and nausea majority of the day.  You don't know that my chest gets tight when you argue with me or when you look at me with a blank stare as I tell you I'm not feeling well.  You don't feel the panic that flows through my body.  

You don't realize I have an every day battle with getting out of bed.  My body works against me as does gravity.  It pulls me down until my bed swallows me whole.  Depression is the same way.  I stare around my apartment, feeling a foreign sense of where I am and an unknown sense of where I should be.  I become angry knowing I'm late for work and you will instantly judge me; then I decide if I can face it or let my guilt and sadness eat away at my soul while rotting under the covers.  

I'm down to my last resort of treatment options for pain, fatigue and my overwhelming feeling of being alone.  Waiting for a phone call is like waiting for a police officer to write you a ticket.  Going to doctor appointments is exhausting and emotional.  Repeatedly telling my story and my symptoms is debilitating.  Most of the time I am driven there; but I know that I am alone.    

There are some things you should know about me.  I have chronic pain and fatigue.  I have TMJ, all three types of Thoracic Outlet Syndrome, Cervical Dystonia with a side of frozen muscles in my shoulder, above my collarbone and in my chest, Winged Scapula, Joint Hypermobility and possible Nerve Entrapment.  It beats the living crap out of me every day. It throws me around like a ragdoll.  It tries to take all my hope and optimism and faith.  And I'm ok with it because I've been dealt my cards.  What I'm not ok with is you treating me like I am nothing.  Like there is nothing wrong with me.  Like I'm lazy, unmotivated and weak.  Pretending you can turn your head and it's all going to disappear with the drop of a hat.  Because that is what's killing me faster than my medical history.  

To me, acceptance and understanding is the most important part of living with a chronic condition.  I don't have that.  I've never once heard from you, "I'm sorry you are feeling like crap, is there anything I can do," or "Do you need help with anything," or even "I wish you didn't feel like this."  I am going through it alone.  You ignore my condition rather than talking it out and voicing your understanding; if you even have any.  

You are selfish.  You are introverted with what's going on between my body and I.  You don't know how to talk about your feelings, and maybe it's just the way our family is.  But someone with my condition needs help more than you realize.  Acceptance.  Empathy.  Understanding.  Even just a hug.  Just knowing that you're there would make this a lot easier and tolerable.

I'm starting to think maybe it were easier if I weren't in the picture, or didn't live in the same city, or work at the same job as you.  I wouldn't be such an inconvenience then.  Tears well up and anger boils my blood when I wonder what would happen if I never developed TOS.  What would our lives be like?  Would it be different?  Would you love me unconditionally and be there for other difficulties in my life?

My Thoracic Outlet Syndrome Warriors have been more of a family than you.  My friends that aren't going through what I am show more empathy than you.  My cats, my two lovely boys, show more compassion and understanding unspoken than you show in your words.  

"I'm sorry for having this.  I'm sorry for annoying you with my complaints.  I'm sorry I can't be the perfect family member you envisioned."  These are things I want to say to you, but it's all wrong.  It sickens me with the thought of having to say that to you and lie through my teeth.

I sincerely hope that you come around and realize what you're doing to me.  Because I will die faster from a broken heart than a broken body.  I love you.  I want to be apart of this family.  I want ever so much to make this all go away; but I can't, and you can no longer ignore it.  

I doubt I will hand this to you, because I know what the outcome will be.  You will get mad that I wrote it in the first place, argue reading it and after making me sob you will finally take it from my hands until it makes its way crushed under piles of paper on your desk or in the garbage, pathetic and abandoned. 

Love, 

Daughter, 
Sister, 
Driftwood.





Equanimity.

-Kelsey 

Equanimity

Dear friends and family,

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