Wednesday, November 6, 2013


Life has consisted of chemistry, work, chemistry and Lupus.  Fall quarter has been a mix of flares and more comfortable states.  Though the good days right now are still outweighing the bad. As usual there has not been a dull moment or day in my life in living with this disease.  Still doing 20mgs of Methotrexate every Friday night, still taking my twice daily cocktail of other fun stuff and smilling.  Though in the past week I got to do something a bit out of my norm and speak out about my adventure with Lupus.  It was an incredible experience. 

I started my speech by walking up to the front of the room with a lot of blank stares.  I could just see the "but you don't look sick" on the audiences faces.  This is the first reason why I speak about Lupus, because I don't look sick.  After settling in behind the large wooden podeum I began my speech, sparing few details.  The energy shift in the room was like a magnet.  The repulsive field of two positively or negatively charged magnets that repel were suddenly switched into a positive/negative marriage.  Everything just clicked, the expressions of on the faces of the people listening were shocking.  To me living in chronic pain and fighting for each day is normal... for most that is not.  In the process of drafting my speech I actually questioned extensively several healthy people what they did in their day.  They don't get up at 5:30 a.m. just to go back to bed to have the medications kick in in time to be able to move at 7 a.m.  I thought that was a little bit interesting... the idea of just getting out of bed.  Hmmm... sounds nice!  

As my speech progressed to how Lupus and I have journeyed through college things got quite dramatic.  I have not had an easy college experience with Lupus.  Professors have demeaned me, I have been told I am not ready for higher education, and have experienced a great deal of discrimination academically.  Speaking out about this really brought awareness not only to my situation but to those who also have other disabilities who experience the same thing that I do on a daily basis.  When my own body throws up the challenge card of even being able to function on more than a "merely existing" level, going to college and dealing with all the stress that comes along with it can be extremely overwhelming.  I cannot begin to count the number of times I have come home from school in tears frustrated over how the faculty just "doesn't get it."  This is my life and will always be my life.  People will not understand.  It is one thing to not understand, it is another thing to not try to understand.  

Aside from all the bad there was also some good.  Through the ACCESS services on campus and various student based caring professors I have managed to have success.  Success I would not have achieved without the ability to have a note taker or extra time on tests.  Little things can mean big differences in academic outcomes for me.  Sometimes all it takes is an extra day so I'm over the effects of Methotrexate to excell at a test.  

My favorite part of the speech prompt was "What has made you stay in college?"  I'm a stubborn, determined little blonde person and sheer determination has kept me going.  I want a degree, I'm going to get one.  It is taking a toll on my health, I'm having a flare that is just trying to kill me but I love learning.  Regardless of the pain, fatigue and other associated symptoms I know this is achievable.  Though some sleep would be nice as I approach the last three week stretch of quarter...   

After, I spoke as a panelist answering various questions in the audience.  It was a ton of fun.  Rarely do I get to sit down and discuss disabilities on a level that is equal.  Generally it is a non-disabled individual wanting to know more about a disability without the underlying experience of being disabled.  I was on a playing field where everyone understood and all I had to do was talk instead of explain in great detail.  

In the days following a number of people who attended the panel have come and talked with me.  Many did not realize I was disabled and many more didn't realize how significant my disability is in my life.  This week alone I have had two days of body crushing fatigue where I have gone to school as a zombie.  It has also been beautiful to hear people open up about their disabilities.  So much gets thrown in the closet and hidden for fear of judgement.  It is okay to talk.  Stigmas will be stigmas.  Those who don't get it and don't want to, won't.  The people who actually care and want to learn will listen.  I've learned so much since the panel and have really had my eyes opened to new aspects of disability from so many people.  Even at the pool where I swim early in the morning a lap swimmer took note of me practicing my speech while waiting for entrance.  He hasn't stopped talking about me.  A close friend of his has lupus and is thirty.  She struggles daily with the same things I do, including being medication compliant.  Soon she will be starting college where I attend and my story has really been an eye opener to her.  Life doesn't end after diagnosis, it begins.  Part of activisim is letting that come out.  As my closing line went "Lupus doesn't run my life, I run my life with Lupus."   



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