Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


Where the hell have you been? And other awards.

My inborne Jewish guilt  has gotten the best of my slacker-ality (add it to the neuro-ictionary), and whala... here I am, with too much and too little to say.

So, here it is, in the best form ever invented - the list form:
  1. WE WON AN AWARD!!!!!!! 

    1. Top Chronic Illness Blog
  2. Thank you, thank you to all who nominated Neuro Detour. Wow, what a friggin' honor! Gee, it almost makes me feel lucky to be so effed up that I can write Neuro Detour and win top 35 gimpalicious blogs of 2010. Yippeeeeeee!
  3. Now for the down and dirty....
    1. it's been a shitty ride as of late, but (and there's always that stupid optimistic idealistic but) I've been lucky too to be in the right place with the right people to get the best out of this life that I can.
  4. I did have a recent fall or 2, cracking a rib or 2, but mortal pain is nothing once you've had RSD pain, and I've had quite a bit of that.
  5. Vertigo has taken me way yonder to using the original Vertikal Kris-O-fellow-
  6. So, special thanks to Verikal Kris for keeping me vertikal [sic]... for the time being.
  7. And dear Judy, thanks for being my partner in RSD and portacath crime. We all need a bosom buddy, or in our case, it's porta-buddy - same diff.
  8. Being sick really fucking sucks.
  9. Losing people you love because you're a sicko really fucking sucks.
  10. Losing yourself because you are a sicko really fucking sucks.
  11. Losing yourself because you are a sicko on really whacked out meds really fucking sucks.

    Ketamine DanImage by christophe dune via Flickr
    Nice Logo... not quite, but close....
  12. Some of the meds, like IV Ketamine, not only make you (me) better, but get you (me) trippin' and hallucinating grand realizations that disappear as quickly as the last 2 years have.
  13. I am now a graduated TM-er, reaching my 2-year anniversary in August, 2 weeks after my 35th birthday.
  14. My Neuro Detour should be over.
  15. My Neuro Detour is just beginning.
  16. I am no longer a TM-er.
  17. I am a TM-MS-Stage 4-RSD-aka-CRPS-er-with lots of ancillary shit diseases like osteoporosis tied in.
  18. I belong to no one, no group, nowhere.
  19. I belong almost everywhere.
  20. I hate that I am not free to go anywhere, even certain restaurants or stores or art galleries because they are not handicap accessible.
  21. I hate sickness, and bigots, and nasty cabbies who charge you before you sit down because you take so long to get in the cab with your walker. 
  22. I hate chic-chic and down-scale department stores and boutiques who may be accessible in architecture, but not in service. 
  23. I hate insensitive people. 
  24. I hate inequity.
  25. I hate being a triple-quad minority.
  26. This is the internationally recognized symbol ...Image via Wikipedia
  27. I hate that society does not commit itself to the laws of the Americans with Disabilities Act (ADA).
  28. I hate that my life is so expensive, but my income is so controlled.
  29. I hate that I've ruined other peoples' lives, e.g., my mother, with my chronic illness and disability.
  30. I hate bitching and moaning. Mine and others'.
  31. I have started my first real physical rehabilitation, and I LOVE it. I'm only permitted to do aqua therapy at this point, but Aquatic Therapy of Chinatown is giving me something to look forward to 3x/week.
  32. I wish I could walk through life in an 8 sq. ft. pool.
  33. I am practicing transcendental meditation - by prescription
  34. I am exploring the powers of one's mind.
  35. I am starting an international movement (in my head and on a piece of foam core)
    1. Gimp This! (imagine the i in "this" as middle finger.), of dedicated equalists, anti-disability-haters and -prohibitors (silence is as much an act of hate as exclusion, ostracizing, blah, blah, you wronged me, blah.)
    2. In other words, watch out out gimp-haters and ADA-non-compliance-ers, Gimp This will get you, out you, and picket you. Looking forward to ruining your business soon. :)
  36. I am selling more and more of clothes:
    1. Who needs a wardrobe when you're 35 and your job title is patient? (HOWEVER,  I do not sport hospital fashion, rather I am neurochic,,,, and you could be too.)
  37. When asked what I do, I no longer say writer or painter (which are both true), or dancer or choreographer (long - gone professions), 
    1. I say patient. And that is at least 3 jobs in one.
    2. I am often completely alone.
    3. I am not recovered.
    4. I still have no prognosis.
  38. I can not go a day in public without being asked, "What's wrong with you?"
  39. I can not go a day in public without being stared at by children. 
  40. I can not go a day in public without being stared at by people who should be my peers, or perhaps employees. 
  41. I love Provigil. 
  42. I love all pain meds and pain management procedures.
  43. I am afraid my doctor will retire, and I will have no one behind me.
  44. I avoid people, even virtual people, when I am sad or conflicted.
  45. I gave my birthday away this year, not because I don't want to age but because of what this birthday signified... what should have been the crest of closure.
    1. Please take a copy of my birthday for yourself.
  46. I have made scenes and thrown cups of frozen yogurt in response to injustice.
    1. I have been stupid and assertive against drunken privileged white men harassing a homeless black man. 
    2. And when the cops showed their racist spirit, even the black ones, I opened up my mouth again and took badge numbers and said things that could get me arrested.
    3. I am a defender of my rights. 
    4. I am a defender of my people. 
    5. I am out of control more often than before. 
    6. I am tough, and I can be mean if necessary. 
    7. I may be a cripple or a glamour gimp, but I'm not gimpified. 
  47. Please help me Gimp This here and elsewhere.
  48. Doesn't asking for help suck?
  49. Whole numbers and silence are for pussies.
PS I am not participating in POST (Philadelphia Open Studio Tours) this year. See right column top for more info.
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      If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


      In Pictures

      Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
      To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

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