it’s been a while since we have communicated…  i am hoping you don’t think i have forgotten about you.  the truth is, i have been struggling so much lately- emotionally, physically.  despite my acceptance, the wounds of your transcendence still have not healed.  i say this because i still feel very alone in the work of sharing your teachings with others.  i take these teachings very seriously (as you know); and even though the purpose is to just go forth and share it all, figuring that SOMEONE, just someone will recognize them…  it’s a heartbreaking experience to acknowledge the isolation in the experience.

i suspect the wounds have opened back up on deeper levels because the one person who i felt truly ‘understood’ me and the work i hope to do has transcended as well.  he was the one who helped me develop that show we did in your honor.  remember the show?  where we did our best to ‘recreate’ the general feel of your shows?  it’s obvious we could never even come close; but i just wanted to share with others what you have taught me, and barry supported me the whole time.  when i lost faith, he said ‘don’t worry about it’.

i remember the first real conversation we ever had…  it was about you, michael.  we spoke on the phone for at least two hours on the impact you’ve made.  he said, ‘wow!  i didn’t know you were into him like that.’  we spent hour upon hour of philosophical conversation- not just about you; but about spirituality, about astrology, government policy, work, relationships, music, cats…  when i was having a bad day i could call him up, and he’d calm me, he’d make me laugh.  he’d take at least an hour of his busy evenings to call me and see how i was doing.  i’d tell him of my deep wish to be a mother despite my desire to not give birth, and it was as if he was the only one who didn’t think i was crazy.

there are so many stories i can share…  he was a huge admirer of prince as an artist (like prince, barry could play pretty much every instrument under the sun) and we used to have those ‘prince or michael’ debates in jest.  even though he would extol the virtues of mr. nelson’s musicianship, he would always conclude with, “but michael is the baddest dude on the planet”; whereby my response would be, “you got that right!!!”.  and we would both laugh.

even though it was as if he knew the whole world he always made me feel like i was the most important person in the world. it was like i could do anything- take on the universe if i put my mind to it.  he always critiqued me with love.  whenever he thought i was going overboard, he’d bring me back to earth, but he would never TELL me i was going overboard.    he would just say something to the effect of, ‘don’t mind the haters.’  he’d never tell me i was too sensitive or crazy.  to him, i was never too much or too little of anything.

he opened his heart to me in ways no one ever has.  HE WAS MY ROCK.

he was my rock.  and now my rock and you, teacher are no longer here on this earth.  as i write this, i am struggling.  just as for you, i have accepted his transcendence.  however, as i think about him (and you) tears are welling up in my eyes.  i don’t know if anyone on this earth will ever comprehend whatever it is i do, in the way he did.

he would just immediately, before i said anything, ask me, “is there any latest michael news?”  he encouraged me to talk about you in ways other people do not.  even after two hours it was never too much for him.  and if it was, he’d never say a word.  he lent me a video of the show you did in 1977…  we both agreed the show was horrendous, but he’d always try to get me to watch it because “michael was a BEAST!  those turns he made, without getting caught in the cord- well, he got caught once, but how he came out of it…  dude was a BEAST!  watch it for that!”

for some reason i wasn’t able to watch it then (it was the ONE THING he actually got on me for)…  ‘how come you haven’t watched it yet!!!???’; and now, i don’t know if i’ll ever be able to watch it for a long time, without thinking of him.

since his transcendence on the 4th of this month, things haven’t been the same.  i haven’t really laughed all that much.  i’ve laughed some, fortunately, but it’s more of a struggle to.  sometimes, i don’t eat.  if i don’t have anything to do i just stay in bed.  sometimes i can’t even get to rest, unless i am really tired to the point my eyes cannot stay open.  sometimes it hurts to even be in bed.  it’s too much energy to walk, make food (and get lumbia some food) and even talk.  it physically hurts to do these things sometimes.  sometimes it’s a struggle to put on shoes, because they fit so tightly, when they usually do not.  my whole body, my joints ache and it feels as if someone broke my shoulder blade.  my heart and chest hurt.  i get headaches.  it feels as if i am in the process of having a heart attack.   the other day at work i had a panic attack.  i’ve had them numerous times in my life, so i know what they feel like.  it’s never fun, because you always feel as if you are in a compromising position, and there is nothing you can do.  all i could say, in tears, was that i couldn’t live like this anymore.

i just want all of this pain to end.  it’s hard to function like this.  my brain feels so clouded.  i feel lost.

i spoke to a friend about how i was feeling, and she recognized the symptoms right away. ‘it’s the sympathetic nervous system’ she said.  when i got home i looked it up right away, and everything matched.  i haven’t really seen much on how to deal with this system being compromised.

here is a page i found on this:

http://www.veroniquemead.com/sns.php

“Under Normal Circumstances, the Sympathetic Nervous System promotes the ability to be active and the defense mechanism of fight or flight. It affects activities in red. An individual who is exposed to states of SNS dominance has an increased risk for Symptoms and Illnesses listed below, which have long been associated with stress.

The symptoms and illnesses associated with SNS dominance are those of fight/flight, and include: hypertension, hypercholesterolemia, fast arrhythmias, heart disease, type 1 diabetes, sjogren’s; anxiety, panic attacks, hypervigilance, poor sleep,…

Increases vigilance and arousal to quickly notice and respond to danger.
Symptoms: hypervigilance; startling easily;nervousness;anxiety;fear;
Illness: chronic or severe anxiety; panic attacks

Increases blood pressure to get blood to the brain and vital organs:
Symptoms: ? white coat high blood pressure;
Illness: hypertension, strokes from prolonged high blood pressure, heart disease; heart attacks

Increases heart rate to circulate fuel and oxygen to vital organs for activity and defense:
Symptoms: fast heart rate
Illness fast arrhythmias (?atrial fibrillation; PSVT?)

Increases fuel availability (sugar, fats…) to the brain, muscles and other organs who need it during exercise and defense. Because insulin promotes food storage, it is inhibited during sns activity to maximize fuel availability.
Symptoms: high blood sugar; high cholesterol;low insulin;
Illness type 1 diabetes, with increased risk for high blood pressure, high cholesterol, heart disease,…; hypercholesterolemia

Increases adrenaline to facilitate changes in blood pressure, heart rate etc
Symptoms: shakiness; palpitations; butterflies; difficulty concentrating
Illness chronic anxiety, panic, hypertension, and others listed here

Increases oxygen circulation to vital organs to provide fuel for activity and defense while decreasing circulation to non-vital organs such as skin, the extremities,…
Symptoms: cold hands and feet;headaches
Illness peripheral neuropathy

Increases blood clotting ,which minimizes blood loss if wounded during defense such as fight/flight
Symptoms: strokes; clotting disorders
Illness strokes;

Increases pupil size and peripheral vision to maximize awareness of sources of potential danger
Symptoms: blurry vision when trying to focus on narrow vision (reading…)
Illness prolonged visual changes requiring corrective lenses”

all i know is that i want all of this to stop.  some days are worse than others, but i want it to all end.  all i know as well is that the beginning of this year for some reason has been really difficult for me, emotionally.  the trouble sleeping, the wanting to stay in bed, not eating…  that’s been going on since january.  but barry’s transcendence has really lessened the pain threshold.

i had another dream…  i’ve been having very detailed dreams since you left this earth, and i can’t tell if the dreams have anything to do with you telling me anything or not.  i cannot tell if the dreams are leading me to anything i write, most of the time.  the dreams are so vivid, and sometimes painful.

this one though, involved john legend (yes, the popular artist)…  i do not know why, but i was itching to tell him about an idea i wanted to get across.  i wanted him to help me with a film i wanted to do, from the perspective of someone who is going through a debilitating illness, and how the world reacts to them.  the camera work would be from their perspective.

i kept running after him, and he initially ignored me, saying he was busy; he then approached me and asked me what it is i wanted.  as i began to describe the film i wanted to do, i got out of the dream state.

i have been thinking so much about this lately; looking at videos of people speaking about their experiences with illnesses such as lupus.  and because lupus can be difficult to detect at times, people may not believe the person when they say they are suffering.  i can only imagine what isolation you may have felt, when looking at interviews given by people like quincy jones…  when you informed people of some symptom you had (without actually saying what it was), like lung inflammations or whatever; people did not believe you, and attributed your issues with ‘plastic surgery’ or some form of racial self-hatred…

what was it like to be in the state/position you were in, having to conceal your medical condition in order for there to be SOME semblance of privacy about your life, having it all backfire?  what was it like to to live with autoimmune disorders, with arthritis, with the pain which is synonymous with ‘dancer’s feet’, and have to go out and perform night after night?

http://www.angelfire.com/oh2/chezsarah/dfeet.html

“Insiders are hesitant to reveal the secret for fear of embarrassing the dancers, but the truth remains. Dancers have ugly feet. The years of pounding and strain that their feet endure create crooked toes, discolored nails and skin rubbed raw. Not to mention calluses, corns, and bunions. The wear and tear is endured to achieve performances that appear graceful and effortless.”

http://www.calgaryherald.com/entertainment/Agony+Feet/4307106/story.html

For Caron the more painful irony in ballet is not, as The Black Swan would have it, that individuality must be obliterated to achieve professional stardom, but rather that “pointe shoes are about making a dancer appear weightless, like a sylph, but when we take off our shoes, it’s not the prettiest thing.”

i wanted to show the perspective that everyone’s pain is different.  there are people i know with MS, and the stages they are all in are so disparate.  there are people i’ve met with far-gone autoimmune disorders, and they function as if nothing ever happened; when some folks have lesser effects, and it hurts them to even walk.    for you, i wonder…  i wonder what your experiences were before you left this earth.  in that clip which surfaced a day after your transition, many people were saying you looked healthy and happy.  what i saw was a man who was struggling to even move and breathe.

are those who experience pain often sensitive to others who experience pain as well?  i cannot say.

i think about this as well because the pain i have, it’s not necessarily an autoimmune issue.  people deal with grief in many ways, but i don’t know if the physical pain that goes with it is often discussed.  and so people may not recognize this pain and think you are just being grumpy or dramatic.  when grieving, we are expected to ‘get over it’ quickly, and go about our day.  i didn’t ask for this pain to happen to me though.  no one does.

frankly, i’m not sure what to do about this grief.  i’m not even sure which stage i am in.  maybe all of them at once?

http://grief.com/the-five-stages-of-grief/

i know that barry is laughing at me now, saying he’s okay, and that i shouldn’t be sad, or worried.  i know he’s telling me to never forget the things he (or you) told me, and that i can go for whatever it is i want.  just like, as you once taught:

…the power’s in believing
So give yourself a chance

‘Cause you can
Climb the highest mountain
Swim the deepest sea

All you need is the will to want it
And uuh,
Little self-esteem

Because it’s just a matter of time
Before your confidence will win out

Believe in yourself no matter what it’s gonna take
You can be a winner but you got to keep the faith

Lift up your head and show the world you got pride
Go for what you want
Don’t let them get in your way
You can be a winner but you got to
Keep the faith

Look at yourself and what your doin’ right now
Stand back a minute just to check yourself out
Straighten up your life and how you’re livin’ each day
Get yourself together ’cause you got to keep the faith

Straighten out yourself and get your mind on track
Dust off your butt and get your self-respect back
You’ve known me long enough to know that I don’t play
Take it like you want it but you got to keep the faith

i for sure know he’s in a better place, and maybe it’s just me being selfish that i don’t have him here anymore.  i know i will always miss my dear friend barry, who encouraged me to be the best student i can be.  his message to me has always been: to those who don’t grasp what i am trying to do, either they will some day, or i just need to not pay any mind to them.  even though that sentiment is difficult for me to grasp to this day, i know he’s right.

michael, if you ever run into barry, can you say hello to him for me?  i know you two will have some very interesting times.

love, jamilah