On The Lupie Side Of The Street

The first question I always get asked when people get to know me is "What is Lupus?" The second question I get asked after I explain myself is "How do you go on?" How do I go on? It's a question I ask myself every single day that I live here on this earth. How am I supposed to go on when my body feels like it cannot? How do I manage to live another day when my heart says "It's not worth it." I will tell you a little secret, I don't live for myself.

I don't choose to go on every single day for myself. On my bad days when I can't out of bed, when all I can do is watch TV and whimper to myself, I don't want to be here. I am not an active participant in life. On the nights when I am alone, so exhausted I can't sleep, in so much pain the thought of switching sides seems impossible. I sometimes wish I were dead. But on those days and nights when I feel I cannot go on, I think about you. I think about my Mom, my best friends, my Twitter followers, and complete strangers. I think about a person and I hold their love in my heart. The love allows me to carry on through the pain, the exhaustion, and the cruelty of my illness.

Today is the six year anniversary of my Grandpa's death. On Wednesday, April 28th, 2004, he passed away from diabetes complications, gastric paresis, and pneumonia. He was sick for a good two years but I always felt in my heart that he would pull through. He never did. But before he got sick, he could never express to me enough how proud he was of me. My Grandpa put me on a pedestal that in his eyes, no one else could reach. I remember sitting at dinner with him and his friends, every other sentence out of his mouth would be a compliment about me. I think that man loved me more than he loved himself. At the time I was able to make all of his hopes and dreams for me come true.

Sadly, life for me has not turned out in the way he would have wanted for me. I am not in the military. I am not protecting our country in the same way that he did. I don't wake up in the morning and put on a uniform like he did for so many years of his life. I do know that my Grandpa would be so very proud of me if he could see me today. I may not be the cookie cutter image of what he wanted me to be, but I am me. I am living today. If for nothing else, he would be proud of me for living. When the odds are stacked against me, I choose to go on even if it is for others.

If my Grandpa were here today, he would be sitting with his friends at dinner and he would say "My granddaughter Erika, she goes on no matter what. She stands tall when her illness tells her she can't. She lives when doctors tell her she won't. She never fails to make me proud." I know in my heart that is exactly what he would say.

So in honor of his life, on April 28th, 2010, I am choosing to go on for my Grandpa. He is the one who taught me how to be strong, to go after my goals. Trying to go on every day is my goal and it takes more strength than you can imagine. Thank you Grandpa for instilling those characteristics in me. I always carry your love in my heart. My soul never forgets you. I will forever miss you, Grandpa.

I'm not one who watches any of these late night commentary sort of shows found on Comedy Central. Stephen Colbert, Jon Stewart and the like really don't interest me. They are among the hundreds of commentators out there who really only let off steam. Sure, some parts of the general population find their shows to be amusing. I on the other hand, do not.

Last night Twitter was all a buzz because on "The Daily Show" with Jon Stewart, Stewart called Fox news "The Lupus of news." I did not see the show live but this morning I found the show online and watched that particular segment. Really Stewart? The Lupus of news? You just used a medical condition that 99% of America has no real idea what it is. "Lupus? Oh that's just one of those weird made up diseases, it's not real." Stewart, I can promise you that a lot of people were having that exact thought.

What hurt me the most is that you used Lupus as a punchline to make your point. People on Twitter thought you were "genius." Genius is something you definitely are not. Anybody can make a low blow, even I can do that and I'm not considered a genius by the folks on Twitter.

Now some people thought I was taking it too personally because I went on a rage last night on Twitter. No, I was not taking it too personally. But notice how Stewart chose Lupus as his punch line. Why not Down's Syndrome? Why not Parkinson's Disease? Oh yeah, because his behind would have gotten handed to him by the entire world. He made it seem OK to poke fun at Lupus though. Well listen up world, IT'S NOT OK!

On Twitter, my Lupus friends and I make a lot of fun about Lupus. But we live with this cruel disease each and every day of our life. We take pills in order to survive. Pills that aren't actually created to treat Lupus, they were meant to treat other diseases. We know there is no cure and the chance of remission is slim. We are aware that in a split second Lupus can turn on us and literally shred our bodies to pieces. It is a serious and deadly disease that is widely misunderstood. But sometimes we have to make a joke in order to survive through the pain, the suffering, the agony.

You, Stewart appear to be ignorant about Lupus so you do not get to crack a joke about it. Until you take pills, get shots, and sit through infusions so you can live a difficult life, you don't get to make a joke. Until you have to live through each day with no energy, but you're expected to function like everyone else, you don't get to make a joke. Until you cry yourself to sleep at night from pain, you don't get to make a joke. Until you are faced with the signs of muscle, bone, and organ damage, you do not get to make a joke.

Stewart, you could NEVER survive a day in my shoes. By 9 AM you would be sticking a pistol in your mouth trying to commit suicide. You will never have the courage that us "Lupies" have. You will never have our strength, our perseverance, all you will ever have are your jokes. Eventually people will find you to be out of date and no longer funny. But us Lupies, our courage will live on forever. Unlike your commentary and jokes, courage is never forgotten.