Monday, December 14, 2015

Best of Luck to Us All

In 2004, living in the hell that Ohio calls Toledo, I began testing for lymphoma.  The doctor said the word to me within a two minute conversation without asking me any questions about anything!  Casual as they come.  I was 24 years old.  I think of how the world has changed and I'm dumbfounded.  In 2004, when you took an HIV test, they had a five page questionnaire they took you through like a multiple choice test, including questions like, have you ever engaged in sexual intercourse with animals including but not limited to primates.  Then you wait three days on the results.  Three grueling, horrifying, nauseating long days.  I don't care how safe you think you are, waiting three days makes you feel guilty, sick, and utterly distracted.  So when I go to a doctor's appointment and some of the first words out of his mouth are, "we're going to test you for lymphoma," all of the same feelings came rushing back to me.   Mortality.  How many times must we meet?

Eventually, meaning, five years later, my official diagnosis, (since 2005 I had the diagnosis of "mixed connective tissue disease" which means they knew it was autoimmune, just not sure which one) of scleroderma came back.  Again, it felt like a death sentence.  Today, when you take an HIV test, they swab your mouth and you wait 20 minutes and know your fate.  It took five years to find out what was going on with me from my first visit to the doctor.  I blame it all on moving to Toledo.  If you go to hell, part of hell will return with you.

Lying on the first couch I ever bought, so proud of that, it was black leather of course, binging on some tv show I was obsessed with then and have no idea what it was now, I noticed my lymph node was terribly swollen in my neck.  Not being sick, or having felt sick anytime lately, I went to the doctor, because I had free insurance through the university.  "We're going to test you for lymphoma."  Super.  Thank god when my next appointment came around, he was in Maui or somewhere absurd and I was transferred to a female doctor who knew a little more about handling patients with care. She tried, and luckily identified enough about me to get me on the right track.  And then, my contract was up with the school, which meant my insurance ran out, and I moved back to Cambridge.  Start all over again.

Found a rheumatologist in Zanesville; she's the one who gave me the "mixed connective tissue" diagnosis and began putting me through a myriad of medications basically as a trial and error methodology.  Then she transferred to somewhere in Pennsylvania.  I got notified by a letter in the mail.  The person who took over for her diagnosed me in my first visit.  I love him.  I saw him for seven years.  He has since moved on as well.  I have no luck with physicians. 

I have had general practitioners, rheumatologists, dermatologists, gastroenterologists, endocrinologists, oncologists, gynecologists, hematologists, cardiologists, I mean, what else is there?  Here I am, at 35, adding to the list.  Next week I get a surgical oncologist.  I don't have a problem with that.  I have been lucky to know so many doctors who are committed to their craft.  What I have a problem with is requiring such a plethora of medical personnel in my life!  I know people my age who don't even have a dentist.  I can't fathom the peace, or ignorance, of that life.

But after days like today, I almost understand my fate.  I've done nothing.  I do nothing.  Life will be taken from you when you take advantage of it.  Life requires motivation.  I believe I have lost most of mine.  Life requires love and purpose.  Life has beaten me to an inch tall thumbtack waiting to impede the soles of others' mobility. 

I try to write, nothing of worth comes out.  I try to do, my brain restrains my motions.  I try to think, life gets in the way.  I don't want to think about this life.  My life.  When someone comes to me about their own life, I beam positivity and motivation.  I apparently do not credit my own with the value which I do others'.  So at this point, I must ask myself, is my mind deteriorating my body, or is my body creating the rot that resides within my mind? 

I believe the purpose of life is to love and to give of yourself until there is nothing left to give.  I believe it with all that I am.  I believe that work is a way to manipulate us into feeding the upper pendulum of society.  I believe that kindness is the only thing that will allow you to feel free.  I believe that if you love something, you will only gain from the experience, if you do it selflessly.  I believe the world is now designed to mechanically deteriorate our brains to the point of maintaining our life and unteach us how to live it.  I believe their forces are much stronger than ours.  It takes someone special to conquer the obstacles they have erected against us all. 

Where does that leave me?  Still contemplating that.  I have cancer at 35.  It's getting redundant.  My adulthood has centered around doctors.  I know more about the Hippocratic oath than most premed students.  I've had nearly every single brand of insurance that is currently offered.  I can recite my twenty four pills in both generic and brand name forms.  I can talk to any doctor like a champ, and get "good question" as a response from most.  I'll always have medical debt.  I have as many "health" apps on my phone as I do shopping apps.  And I've had my will and final wishes done since I was 25 years old. 

What a bleak and dark perspective on my life, right?  I don't see it that way.  I am strong.  I am prepared.  I love to crochet. I love to watch marathons of tv shows I was obsessed with when they were on tv in real time.  I love reading three pages of a book and putting it down then playing solitaire for hours.  Then picking up a completely different book.  I adore the smell of English lavender and hate French lavender.  How are they so different?!  I love making travel plans, and I'm completely obsessed with checking out different hotels.  I think swimming might be the greatest thing to do in the entire world.  And I couldn't give two shits less how I look in a bikini, because I'm wearing one regardless.  I love learning.  Anything.  Absolutely anything.  I am a knowledge junkie.  Give me something new to learn everyday and I feel complete.  It's all I crave.  Information.  Give me what you got.  Because of that, I know this much is true:

; My story isn't over.  It may not be exciting.  It may not be uplifting to most.  I may not have anyone to share it with, and to some of you, that makes it worthless.  But to me, it's not over yet.  I have meaning to find.  I have meaning to provide.  So in the deeply poetic words of my television soul sister Max, from Two Broke Girls, know this, "I'm fine.  I'll always be fine."  Life's never been easy.  But it's almost always worth it.  I wish us all the level of success we see for ourselves.  Best of luck to each and every single one of us. 

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