to all the special people i know:

 

i've written this letter, in my head, more times than i can count. others have written parts of it for me and to help guide me. i and we had always thought the hardest part of giving life to this project would be writing the letter itself and asking for your help. but i've been wrong. very deeply wrong. the hardest part has not been writing this letter, nor asking for help -- all risk taking activities -- but in truth the hardest part is being chronically ill with a deeply debilitating disease. a disease that each day -- and at times hour by hour -- presents itself in some new way or repeats over and over something that has changed my life in ways that i still find almost impossible to fathom or imagine, unacceptable and for some time now untenable. the hardest part is not to be found in the telling of my story (though i don't call myself a writer). the hardest part is figuring out how to live again. to regain quality of life which for me means friends and friendships renewed, creating music and art, presenting it and selling it to the public, talking about and teaching others what it means to be ill in a society that shows and tells you that you are no longer useful if you can't earn a living, get up and go to the job each day whatever job that may be. i walked around sick for many years before i was formally diagnosed with systemic lupus. relief is not the most common reaction most people have to being told they have a life-threatening, incurable, chronic, debilitating disease. although the two years prior to be diagnosed it was very clear that my health was failing in ways that it had never before. the episodes grew not only longer and more serious but were occurring more frequently. but i was relieved. being the new yorker that i am my thought process ran something like this: finally. now i know what it is. what do i do? (long pause -- late one night, alone, 4am at the computer, reading things that perhaps i am not yet ready to know and the dr has not said anything about.) then it was: this disease picked the wrong person. i will not give in. i will continue to do what i do. and if i do go down, i will go down kicking and screaming. i have no interest in resting. i can rest when i'm dead. (i really did say that. i really did laugh at that. it's called disease humour. you've faced your worst fear. now what?!)

 

perhaps it is odd to say that a disease that is debilitating is more difficult to cope with than a disease that might take my life straightaway. but it's not. at least for me. because we are all different. the way i felt about being ill ten years ago is not the way i feel now. physical and emotional pain that i couldn't conceive of and of course thought i could not tolerate has become part of my life. strangers and friends who know me well tell me i am strong. they say things like i don't know how you do it. especially with all that you have lost along the way. i want to scream BUT I AM NOT DOING IT. all i am doing is surviving. hour after hour. and the hours turn into days and weeks and the days and weeks and months turn into years. almost a decade has passed since "the troubles" truly began (to borrow a phrase from the irish independence movement). i did not become sick ten years ago. i know now that i've been sick since i was in college. but nowhere near the intensity that i am now and it was certainly not my life as it is now. and i will explain why….

 

we have one of the very worst health care systems (if you can even call it that) in the industralised world.

if you are not by chance or by luck in one of the major cities, ie nyc, chicago, la chances are you will not be able to receive the type of care that a complex and complicated disease like lupus requires/demands. generally speaking, because it is a systemic disease (full body), it is necessary to have a team of drs taking care of you; as a new problem presents a new dr will be added to the team. you will also need access to a modern teaching hospital where drs are up on the latest treatments (that's a whole other ball of wax -- see: treatments, manageable diseases, and the soft story of misinformation that is constantly spread around regarding lupus). even with having one of the greatest rheumatologists in nyc, i still had a team of drs. some i saw on a regular basis either due to ongoing medical problems or would see because of a med i was taking that could cause blindness.

 

wrong disease. wrong major organ involvement.

aka the hell i have been through having this particular disease. story of my friends with aids. story of being arrested. regular story aka frequent flyer aka drug addict aka drug seeking.

 

what you need when you have a major disease. what qualifies a disease to be categorised as major? and why are these things so very important not only the physical aspect of your illness but also even more so the emotional and mental well being.

 

our society does not deal well with illness. esp chronic illnesses that may last a lifetime or may end your life in a short period of time. we also do not deal with deal. well or at all really.

we have very few things set up to help you unless you happen to fit into a couple of very rigid categories. most people have no idea that going on disability is worse than the very worst job you have ever had. it is NOT a free ride. there are no housing reimbursements. who is supposed to help you if you are not wealthy and/or have wealthy friends?

 

inspiration [quotes] -- *hope is only the love of life*

 

what does life below the clouds mean and why that name?

 

what is creative activism? what are the universal languages (music and arts)?

 

discrimination.

larger picture = like aids, it effects a group that most or at least those in power don't care about. the other = even though i am of the smallest group that gets it i have faced horrifying experiences due to disease discrimination. the worst of it being down here in the south.

nobody did this to me, but when i am treated poorly because i am ill that is something that somebody is doing to me. i have always detested the phrase "don't take it personally." my go-to response would be: how should i take it? i am a person and this is happening to me. so, it is personal, no? over time that phrase has taken on meanings i never dreamt it had or meant before now.

 

my story.

how i would like to use this story to first help myself get back all the things that made having this disease worth living and maybe someday helping others. but certainly raising awareness and bringing this disease, the word lupus, into people's minds the way cancer and/or aids is. tell the story of the mj group w/aids saying they would rather have aids than lupus.

 

what the disease of lupus is and what it has done to me. no two people who have it are the same. graphic deteriorating health.

 

what the emotional fall-out has been. what can change that. culture shock. home is a place of freedom, privacy, environment, space, etc. so many seemingly odd things are necessary when one is ill. it is too much to ask someone else, unless they are a partner, to compromise and adjust to those needs.

 

life services. what i need now to help me change all that. or at least some of it.