Thursday, February 28, 2013

My Thoughts for Today -US Rare Disease Day 2013

Today is US Rare Disease day, and I find myself swirling in a sense of irony. This morning I wrote a letter to my congressman and to President Obama in order to pay my contribution to RD day, as well as posting several blurbs about it on various social networking sites. 

The reason that I say this is ironic is because 3 years ago I would not have even paid attention to a cause like this. I can recall living in downtown Miami and griping when the streets would get closed off for various "walk for the cure" events. I would never even stop for a minute and think of the people whom these movements mean so much to. The people who actually live with conditions like cancer, MS, or a rare disease. I was more concerned about the detour that I had to take in order to get around the event and get to class on time. I would think to myself "What the heck is walking going to do anyway? It's not like it's going to make any difference but inconvenience a bunch of people that need to  use these streets." It was harsh. It was horrible. But on this blog I am nothing but honesty, raw and uncut.

Today I found myself feeling like such an insensitive fool for acting like that. I never thought that there would be a day that I would become "one of them". Now that I am, I realize why there are so many movements and so many efforts to try and raise awareness. To unite as one big voice in hopes to be heard. It's because we need research!  There is nothing worse than sitting across from your doctor and hearing them tell you that you can't be cured, only "managed". That you need to accept this as your new way of life and hope that one day there will be a cure. It's a tough pill to swallow for you, as well as for your family and friends. 

Now I look at awareness days like today in a whole new light. Since my diagnosis, I have had the privilege of getting to know some of the strongest and most courageous people on this Earth. These people are fighters, living every day with an immeasurable amount of willpower and faith. They refuse to let their diseases conquer them, and they refuse to take it lying down. 

When I first got sick, I was scared and I felt alone. I was suddenly thrown into a world that was completely unfamiliar to me, and my entire life as I knew it was turned upside down. But it was these wonderful people who helped me. They guided me and they supported me. They lovingly opened their arms to me and accepted me. The same people that I once complained about making me late for school with their awareness rallies. Big reality check.

Another big reality check came to me today.  I busied myself all morning posting awareness blurbs and writing letters. After I was done, I was really happy with my efforts and that I could share my story with the others on such an important day. Now, as I sit here at the day's end, I am stricken with a sense of sadness. Hardly any of the healthy people paid any mind to my efforts. Photos of my duck have gotten twice as much attention as my posts for such an important cause. This brought me back to that day in the car, and I realized that back then I probably wouldn't have paid any mind either. 

Today on RD day I want to say thank you to all of you who have given and continue to give me guidance. It has been a bumpy, scary, and uncertain road but I am so grateful to be walking it along side of such incredible people. Thank you to foundations like NORD (National Organization for Rare Disorders) who continue to be such a powerful voice for those of us with rare diseases. Thank you to my family for always being there and keeping me strong. Thank you to everyone out there who refuses to give up and who won't take no for an answer. 

Today is the day that we make our voices heard. Never give up hope. The answers are out there, and together we are strong. Together we will heal.

God Bless all of you!!

~ Shannon

Friday, February 22, 2013

The Price of Whiskey

Believe it or not, I actually hold down a menial part time job. It's only 15-20 hours a week, but nevertheless it is the one little scrap of a somewhat normal life that I have left and dammit I hold on to it. Most days I wake up and pray that I will actually make it there; that I will be able to see straight on the drive over and that my legs will carry me through my shift.

I work at a liquor store. It's actually the perfect job for me seeing as though alcohol is totally off limits. I know what you're thinking- and yes, it is very sad when one cannot even drown out their own sorrows in a bottle of wine now and then. Oh, and did I mention that I am allergic to chocolate as well? I must have really done something to piss off the universe!

Anyway, while on the job I get to deal with my fair share of wackos. Most of the time it's pretty entertaining. The hobos that come in to share their tall tales of delusional grandeur while purchasing their $4 pint of Gilbey's vodka are always a hoot. The non-english speaking Latinos that come in asking for Aguadeinte (sp??) and then become quickly disgusted over the fact that we only carry the shitty kind,  and follow with a shower of Spanish lingual obscenities that I cannot for the life of me understand always makes me chuckle.

This day something different happened. All day I had been struggling to maintain clear speech patterns, and to keep fighting the good fight against gravity. When this woman walked in, I could already guess what she was going to ask for, and I prepared to retrieve the Gilbey's. Of course, when she got to the counter she asked for whiskey.

Not only did I have to trudge through the brain fog and remember where the whiskey was, I had to attempt to make double vision into single and actually read off prices to this woman. Was this some kind of sick joke? Was she sent in to put my last few responding motor skills to the test? After making me run the whiskey price gauntlet, she finally decided on a brand. As she counted out her change to pay, I listened to her gripe and moan about how expensive the whiskey was. After going on for what seemed like forever, she tossed all her change at me and shouted "Here! Just take it all!" Now healthy me probably would have thrown that change right back in her face and told her to get the hell out of the store, but I can't afford to waste that kind of precious energy these days.

Then she looked dead in my face and asked "Don't you just feel horrible?"  I stood there in shock, trying to process what she said. Do I feel horrible about taking your money for the booze that you are about to drink? Really? I wanted to smack her across the face. I wanted to scream at her to walk one day in my shoes and then ask me the same question. I looked at her and said "Yes, as a matter of fact I do feel horrible! I feel horrible every single day, and when I see people like you who choose to screw up your life, and I feel worse because I didn't even have a choice! Why is it that good, hardworking dedicated people like me have to suffer with a crippling disease, and people like you get to CHOOSE to destroy your own lives? Now don't YOU feel horrible?!"  
Not a word from her. She grabbed her booze and was out the door.

After that, I excused myself to the bathroom and I cried. I cried because it took me back to that day at the Cleveland Clinic. That day that it took everything I had to drag my brittle 125 pound frame into that hospital to see a so called "expert" that would barely give me 15 minutes of his time. That day that I stood at the counter and paid for my appointment in coins. I wanted to ask the receptionist that same question- "Don't you just feel horrible?"

I didn't mean to shout at that woman. I don't walk around wishing this curse upon anyone (except maybe a few of those doctors that told me it was all in my head). But I will admit, it felt good. It felt good to yell at someone who takes life for granted. To make them feel just a tiny ounce of the pain that I fight every single day. That woman probably went home and drank herself into a coma- another luxury that so many take for granted. I hope that this wasn't the case; that maybe my words actually touched her in some way, but I doubt it. She probably won't think about me, or the conversation we had. But I hope, at least, that she will think twice about the next time she decides to complain about the price of whiskey.