I thought about writing this post many nights over the past few months, but drunk writing is like drunk dialing. It seems like SUCH a good idea and it feels so good when you are buzzed and reminiscing and sure that someone is on the other end just waiting to hear what you have to say, but the next day you realize the only person that really wanted a piece of that action was, well, no one. Not even you once the wine wears off. Same for writing. So, it's 10am and I am not drinking.
I've done a lot of talking about how angry I am - well, not really angry, but annoyed - at celebrities who have been diagnosed with lupus as of late who suddenly stop talking. They disappear. They go to "rehab" for "exhaustion." They call it everything but what it is until they are up and looking fantastic and through what I imagine was a nightmare to their diagnosis. I know. I've been there. It never comes easy. I have yet to hear a story about it coming easy. I have gone on and on about how I don't understand why they are doing this. If they would just be honest and talk about their real experience, call it what it is… Lupus… and explain what that means, more people would make an effort to research it, read about it, understand it and maybe help, but at the very least, stop pretending that they have never heard of this disease. I don't believe it is the responsibility of celebrities to champion this cause just because they have it. I believe it is the responsibility of EVERYONE that has this disease to champion this cause… and their friends… and their family. If not us, than who?
I had cancer. (UGH, we KNOW, Colleen!) There is a gazillion dollars going towards cancer research, new drugs, therapies, trials, support, which I think that is amazing, fantastic and wonderful. I am a part of this movement, I have benefited and will continue to do all I can. I have friends fighting for their lives, I have lost most of those I have lost to cancer. Billions of dollars are spent on cancer research - BILLIONS. There are roughly 1.5 million people who suffer from lupus in the United States, alone. Most, not all, are women. Most, not all, are diagnosed between the ages of 20-40. And, it is said that 10% of those will succumb (i.e. die) from this disease within 10 years of diagnosis. Yet, compared to the billions of dollars spent on finding a cure for cancer, only about $88 million is spent on lupus by the National Institutes of Health. There has been one new drug tested and released in 50 years - 50 years… ONE new drug. It still isn't for everyone and still it isn't a cure.
I was feeling like I was talking the talk, but I was only sort of walking the walk. I, too, hide my illness, especially when it gets really bad. I may post light-hearted or annoyed anecdotes on Facebook or Twitter, but I do not mention the really bad stuff. I know exactly why celebrities don't talk about it. I do the same thing and I am far from a celebrity. I am afraid that what people don't understand will distance them from me. I know that happens. I've experienced it. I'm also in this industry they call "entertainment" that is competitive and based on your drive and talent and looks and dependability and expendability. I am afraid I will be discounted and any image of me as less than will knock me down off whatever list I might have worked my way on to with years of hard work - gone with one post.
Instead of saying my insides feel like they are being torn out of my body and my bones feel like they are breaking from deep in side, so much so that I can almost hear them cracking as I try to laugh at your jokes or tell my own. Or, instead of showing the world what I look like when I am broken and sobbing in a ball in the middle of the floor, because that is the exact point where I could not go any further, literally, and that is where I had to stop, with my 10 year old running to me with tissue and a trash can and a blanket, because she knows the drill even though I thought I sheltered her enough. Instead of giving the run down of the insurmountable number of doctor visits, tests, bills, pills and fears I have… I say "I'm ok. I'm good." Maybe on a bad day I hesitate and say "I've had better days, but tomorrow I'll be fine." Truth? I never feel good, maybe ok. I am not sure I will be fine - probably not fine by what my definition used to be, but maybe fine by the new definition that is just "better than yesterday." Instead of saying that I often burst in to tears in my car at the sight of the most random things - my friends little babies or the abundant number of kids they have per household, a woman jogging down the street with a look of true content in her abilities to keep running, the fact that someone just told me they got 10 hours of uninterrupted sleep or just some stranger bouncing down the sidewalk with the happiest of faces. What does all of that feel like, people? I don't remember and many days I feel like I will never again know it in my life. I hate everyone in those moments. Everyone. I want to scream "I hate you all!" Growth and great things happening to those around me used to give me so much joy in my life and on my not bad days they really still do - of course. It inspires me and it warms me. I am embarrassed to say that today - maybe not tomorrow - it cuts me like a knife. I hate this the most about lupus. I hate this more than any of the pain and any of the uncertainty. I hate that it stole that love of love and life from me, if even only on the worst of days.
Now, let me be clear. These are not all of my days. I just don't know what days they will be or how many or how far in between an ok and an awful. I can still perform like a rockstar most days and I am still here, so please see me and do not discount me. My gratitude posts are genuine. I need them in my life and I mean every word. My ok days have become a blessing. I hated this for a long time - the idea of that becoming my baseline. I also want to be clear that people with lupus can have healthy babies, run marathons, live long, prosperous lives. I know that life is not a guarantee for anyone, but please do not tell me that when I finally do confide in you that I am afraid that I might die in my sleep. Please do not tell me a story about your cousin's friend who died of an aneurysm at 28 - "Poof, just like that. It can happen to anyone." That is sad and I am sorry to hear that and I know that death can happen to anyone, cancer can happen to anyone, lupus can happen to anyone and I am not the only one, but today it is happening to me. Today, it is my reality and I need you to get it. Just like yesterday your reality was kid vomit all over your backseat and burst pipes in your basement. That can happen to anyone, too, but I don't take that away from you. Yesterday that was your pain and I felt it with you. I rallied with you. I told you how bad that sucks and I grabbed a mop and a bucket and a bottle of wine.
The squeaky wheel gets the grease, they say. So, this is my attempt at being a little more squeaky.
Sorry if the noise is a little too annoying or long or just interrupting.