Inspiring Me Now

  • "The Purpose of Life is to Be Happy" Dalai Lama

December 22, 2010

Hope for my Holidays

Most of you who know me well know about my latest "mission". I'm affectionately calling it "Operation Hookworm".  I have several auto-immune disorders. It started when I was but a tot with eczema, then came the asthma and allergies, and 4 years ago I was diagnosed with MS. My devoted doctors have literally run out of new treatments for me. One fateful day, while I was discussing the most extreme option I've yet to hear (immuno-suppressant drug therapy) my doctor told me about a story he heard on National Public Radio. A man with several of the same immune issues I have had intentionally infected himself with parasitic hookworm. The results had changed his life.

Here's the theory on how it works: Disease like allergies and asthma, multiple sclerosis, ulcerative colitis,and psoriasis, are almost unknown in developing countries, largely it is now believed, because of helminth (worm) infection. To prevent their destruction by our immune system, helminths have evolved ways to turn our immune systems down. Because of helminth infection our immune systems have evolved to account for their anti-inflammatory effect. Remove helminths, or worms, and their affect on our immune systems, and the result is an out-of-control immune system much more prone to chronic inflammatory reactions, causing allergies, asthma, Crohn's disease, multiple sclerosis, etc., etc., etc.

After getting more and more information on this, one thing was clear, I wanted some worms! Unfortunately hookworm and most other parasitic worms have been eradicated and are illegal to have in the United States. The only way to get them, is to travel out of the country. Additionally, as you can guess, since this is NOT a treatment that is approved by the FDA it is not covered by insurance.  While it's supposed to last for up to 7 years, the inoculation alone is over $3000. And that doesn't include the price of travel. Since I never made it big in Hollywood, I didn't have the funds to cover this. That's when my brilliant mom decided to do something about it. We decided to do a fundraiser. And here's the reason I'm blogging today.

 My entire life I have tried to hide my medical problems from everyone  It's been a sort of defense mechanism. It seems as soon as people really discover how "sick" I am, our relationships change. I've lost friends, boyfriends, and worst of all, a husband because of my illnesses. It's easy to understand why I like to try to keep my issues under wraps. I don't like pity and I do not like being viewed as weak. But I am not a normal person.

I deal with things every single day of my life that other people will never comprehend. I have to watch what I eat in the case there is something i'm allergic to in my food. I can't randomly drop by a friend's house if they have a cat. I have to take pills at night to help me sleep, otherwise my skin itches so bad I'm up all night scratching. Every one of my shirts I sleep in at night has blood stains on it from itching. My MS has caused extreme fatigue issues. I can nap for 4 hours straight and still go to bed at a normal time. I have to make sure I'm not exposed to cold for too long or I get hives and my asthma flares. I can't be exposed to too much heat either, or my MS will react. I wear long sleeved shirts in the summer to cover up my patches of eczema, and you'll NEVER see me in shorts because the skin on my legs is usually horrible. It is literally exhausting to be me for a day. But, these are the things I never tell people. When they find out, I suddenly become the "freak" or the "weird one". I'm not treated the same and I can feel the pity. I hate it.

Because of all the negativity and discouraging reactions I've experienced regarding my health problems, I've taken a cynical view of the world. People look away with disgust when they see my eczema. They stare at me when I pull out my inhaler to take a puff. I'm always feeling like I'm being judged. Now here I am, exposing myself to a world of strangers, asking them to help me. It's been a very overwhelming experience.

When my mom and I started this fundraiser people began asking more questions about my health. I made fliers outlining my illnesses and the treatment I was seeking.  People began taking the fliers and word started to spread. The outpouring and generosity of complete strangers has touched my life in a way that I cannot describe. These people are not looking at me as the sickly, diseased girl I often see in my mirror. They are looking at me with hopeful eyes. They see the girl I cannot see. The healthy one with a big future ahead of her

These people want to pick me up and help me fly. They aren't looking to hold me down and point out my flaws. The imperfections I see in myself have made me realize just how fortunate I am. Because I have the health issues I have, and because of this support (mostly from complete strangers) I see a new window in my life. It's being held open with the graciousness and goodness of people who simply want the best for someone else.

So it seems this Christmas I've discovered just how good the world can be. I can see that we are put here to help each other, to find the good in one another and to give hope to those less fortunate. Even if this treatment is unsuccessful, I will be grateful for the experiences I've had. And though some of them have been rather tough, I wouldn't go back or change anything. I am who I am today because of what I've gone through thus far in my life. And because of the simple kindness of others, I am now looking forward to what the future holds for me. I have the courage to be less ashamed of my afflictions and I can see life now as hopeful and bright not dark and dim as I've viewed it for so many years. Thank you doesn't seem to be enough to say, but it's a start. So thank you to everyone who's cheered me on and held me up. I love you all and you have literally changed my life!

Merry Christmas