Monday, July 25, 2005

On Becoming An Activist

Community service activity was always a part of my religious upbringing. Being a Campfire girl and later a Girl Scout, not only did I learn to fix a flat tire and to sell cookies, but I learned that it was my duty and my honor to give back. My mother always volunteered her time teaching Sunday school. My father coached the town soccer team. I learned to lead through example. I was taught very early on to give back to the community. I was taught to return everything better than when I got it. No matter how bad your circumstance, there is someone always worse off. I believe these values were ingrained into my persona from a very early age and set the framework for the woman that I am today.

Throughout my lifetime, I have always given (time and money) to a variety of different causes. I am humbled and blessed to be able to do what I love to do. It is selfish really because it gives back so much gratification in return.

During my college years, community service was promoted throughout the curriculum. I visited homeless shelters, hosted food drives, collected clothing, etc. After graduation, I found myself working for a corporation that treats civic responsibility as one of its top values. I know I would be dedicating my time regardless of where I worked, but it meant a lot to me to work for a company that hosted after-hours community events and occasionally took the afternoon off to host team-building, community service projects (E.g., sorting at the food bank or landscaping at the local zoo).

In my post-graduate years, I found a volunteer organization that made me aware of numerous Boston-based Non-Profits, all operating on shoestring budgets, that were in dire need for help.  I quickly became a project manager.

I helped train Special Olympics athletes.
I scooped mac & cheese.
I cleaned local riverbanks.
I wrapped presents, collected backpacks, and entered bowl-a-thons.
I read letters from the incarcerated requesting GED books.
I marched in parades and ran triathlons to raise money.

You name it, I did it. There are so many great causes out there. How can you really choose? You want all these service organizations to exist. Do you really want to gamble on which ones you want to be there when you need them? Wouldn't you be glad to turn to someone who cared in your time of need?

Last year, I tried to become a member of the AIDS community.  -->   I was turned away.

Apparently having an undiagnosed (a)cquired (i)mmune (d)eficiency (s)yndrome is not good enough for the AIDS community, as I was told repeatedly that I could not become a client because I did not have a HIV+ diagnosis. Wow?!  Perfectly healthy HIV+ people get all sorts of funding and free services.  They are not even sick.  Here I am, a sick undiagnosed acquired immunodeficient patient, and I got nothing.  I couldn't find anybody from the medical community, political arena or service organizations to tell me that they care about me --> not even the public health department! Actually, some went so far as to tell me that "nobody cares" .... usually followed by a slamming door.

Why do you need a HIV+ diagnosis to be a client of the AIDS community?

Hello??!  I am the one with the (a)cquired (i)mmune (d)eficiency (s)yndrome here, people.  Pardon my not understanding the inequalities, but don't you think that the funding and services should be going to THE SICK? {Please review my "Let's Redefine AIDS" http://cfsstraighttalk.blogspot.com/2005/07/lets-redefine-aids.html}.

I found myself with a very atypical and uncomfortable feeling -->
ENVY

I felt slighted. No community events with my peers. No pamphlets or literature to read. No weekly newsletters. No one to help guide me with my doctor, my insurance and my legal woes. Nobody to talk with about nutrition tips or treatment options. No weekly dinners or weekend retreats. No therapy groups. No parades. No sponsor to call when times got tough.

I got NOTHING, nothing, nothing...

Now, I had never been one to admit weakness, to ask for help, or to wear my feelings on my sleeve. It is not possible to grow-up with all brothers, and then to have a very successful career in the financial services industry, without possessing very thick skin. "Never let them see you sweat" and "Never ever show fear" were two mantras I often cited. The word mediocrity was never introduced into my vocabulary. "Good, better, best -Never let it rest - until your good is better - and your better is BEST."  For the first time in my life, I had to admit to myself that I was flippin' scared and, even while surrounded by loved ones, I felt very, very alone.

To help fill my void, I found myself volunteering at the HIV/AIDS center.  I figured if I wasn't good enough to become a member of their very-exclusive group (i.e., being HIV+ by FDA standards), I would just hang around.  I would hear the lectures and tune into the community events.  I would read bulletin boards to find out when Magic Johnson was coming to town.  I would read all the textbooks and pamphlets.  I figured I could learn about other people's strife with AIDS, their worries and their fears.  I thought I might learn from their perspectives, their inspirations, and their courage.

When I would look across the room of (very healthy - "I have never been sick") HIV+ members, I would see a big family. When they looked back, however, all they saw was a very tired, heartfelt volunteer helping them out. I know it's not their fault, but I couldn't help but feeling that I am good enough to help everybody else, but nobody is good enough to help me. It was all very humbling...

{Editorial Comment: I, like most volunteers I know, do not volunteer expecting anything in return. I continue to give to others, because regardless of the fact that no entity seems to care about me (or my illness) does not mean that I do not care about them. I like serving dinner to perfectly healthy people at their community center.

As for me, I created my own web haven for those, who battle my same "AIDS-like" illness.  I know it's not much, but I hope it makes the world seem less lonely of a place and, at the very least, tells you -- when every other organization has turned you away --> I CARE.}

Disappointedly, I coined my new spectrum of feelings --> DISEASE ENVY. 

It made me sad.  It made me jealous.  Lupus. Jealous. Lyme Disease. Jealous. Epilepsy. Jealous.

I always considered AIDS to be one of the worst things imaginable.  I quickly concluded that being "undetectable" is 1,000,000x worse.  You know you are in trouble when you are turned away by the HIV/AIDS community.   Jealous. Jealous. Jealous.

Where are my peers? Statistically speaking, I know that my idiopathic illness is not rare. So, where are all these other people?

Speaking from experience, I think a good place to start would be to look at the unexplained suicide rate.  Sadly, I can only suspect that there are likely too many untold stories.  Another good lead would be to scout out the local psychiatric hospitals (e.g., McLean or Faulkner), as I suspect that there are plenty of perfectly-ill immunodeficient people who were driven insane listening to their ignorant doctors telling them that they were crazy (while pumping them full of psych meds).  Now, some might argue that I am a CFS/CFIDS patient.  I have chronic fatigue.  I have an immune deficiency syndrome.  I probably would be a CFS/CFIDS patient, if I allowed myself the generic label.  But, did you know that CFS/CFIDS is not a reportable disease?

Generally speaking, if you say to someone that you have CFS, people think you are over-worked and stressed-out.  Big deal, who in this world isn't?  But, if you say you have HIV-Negative AIDS, which is what it is, people very quickly realize that the medical ailment is much graver than the 'yuppie-flu.' I have spoken to CFS organizations. I have been informed that only ~10% of their clients are accurately diagnosed.  I do not believe I am a CFS patient.  Even if you argued that I am, why would I want to be amongst the 90% erroneously diagnosed as such?  What makes me different than most CFS patients is that I know exactly when, where and how I acquired my undiagnosed pathogen.  I know that I have a "viral syndrome of unknown etiology" --> my official clinical diagnosis.  Thus, I prefer to be referred to as a HIV-Negative AIDS patient.

So, I went to the internet.  It did not take long to find many groups of "my peers" scattered across the world in many web forums.  I had email conversations and chat sessions with people I did not know.  We exchanged stories, timelines and symptoms, and diagnostic tests that had been performed on our bodies.  We built phone relationships and forged new friendships.  We emailed photos.  It was interesting to me that we all rejected the CFS diagnosis, and for the most part, we all remain jealous of anybody who has a legitimate diagnosed disease -- JUST GIVE US THE DIGNITY OF KNOWING OUR NEMESIS WITH OUT NAMING IT A SILLY, BELITTLING NAME.  Finally, I had found some peers.  I have since traveled to meet with a few of my new friends.  To this day, I get calls from people internationally.  People anxious to talk to someone, anyone, because their ignorant doctors (like mine) chose not to listen and treated them like they were insane.  It's like we have all found one another since we are smart, driven, and are battling the same flawed medical system.  We associate with one another so well because we are the survival of the fittest.

The Massachusetts State Department of Public Health mission statement states that they are "dedicated to the health concerns of those most in need."  I have reported myself to them multiple times.  It remains unclear to me what benefit I have gotten from doing so.  Apparently, the State health department does not believe that I am in most dire need because I would have to suspect that in accordance with their mission that they would be helping me by now, if they did.  Thus, I can only conclude that having a deadly incurable illness that no test can detect and because it can not be detected it can not be treated does not qualify as "most in need."  I would love to know exactly what category of people is in more dire need than me because the State Health Department has slammed the door on me more times than I care to recollect (at this time). 

As a population, if our public health system does not know how to handle emerging infectious diseases, we have very deep-rooted problems.

So, as my parents once taught me, as bad as my circumstances may seem, I guess there will always be someone far worse off than me. I don't know who they are or where they are, perhaps in Omaha or Africa. So, I will continue to dedicate my time and my efforts to them.

I continue to count my blessings.  I am blessed that I can afford to see endless doctors, therapists, nutritionists, yogis, kinesiologists, acupuncturists, chiropractors, massage therapists, cranial sacral experts, herbalists, and the like.  I am truly blessed with family and friends who I can talk to endlessly, who have never doubted me for a second, who look beyond my illness, and treat me like the same ol' me.  Also, I am truly blessed to be smart enough and strong enough to challenge a flawed health system that nearly pushed me over the edge before I had the chance to share my story with you.

I never really thought about what an activist was before 2003 while I was sorting clothes and running road races. It wasn't until one day last year when I woke-up and started reflecting on my life (what I had accomplished and what I still intended to do) that I realized that I had become an activist. Over the past couple of years, my lifetime giving has evolved into intentional citizenship.

And while you may never care about my plight, I care and I intend to lead through example.

"Everything happens for a reason" and "Good can come of all evil," both are (and will always be) my unwavering life philosophies.  Thank you for providing me with an amazing opportunity to return this world better than the way I found it.

I already know that I make my parents proud, so all I can say is that the rest is......selfish gratification.

Bittersweet.

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