What comes next

Some people live relatively healthy lives and then suddenly at a certain age they have an event, a heart attack or a stroke or TIA so they get to enjoy a major part of their life.

Then there are others who Have childhood illnesses they grow out of and then they get to live.

Then there are those of us who live every decade with one diagnosis after another, when you are young you tell you yourself” it’s nothing” and when you get older you teach yourself to work around it. With epilepsy I took meds. I avoided strobes and couldn’t eat grapefruit because it voided the effect of anti-convulsants.

But as the decade’s fold one into another, and you start to fold a new diagnosis into every decade as well there is only so many folds you can do without turning your life into an origami fest. Then there are the ones that run in your family that you were never told about because to have an inherited illness was looked at as some kind of family shame, but when your life depends on it and they no longer take your calls it makes it impossible to find out what’s wrong, and by the time you do find out it’s too late.

Well I have spent almost 6 decades on this planet and the last decade I’ve had wheels under my ass and now I had a TIA and they tell me I have hypertension So now my life is an alphabet soup of doctors and my fear is that the doctors will only keep filling the alphabet up as I get older.

Those who know me will tell people that I can handle anything that I am indominable, but here’s the secret folks I don’t know how to handle it anymore I take more meds than I eat meals. I see more people in scrubs than I do normal clothes, and my life has become more discussions of symptoms than meals and I am a chef.

I wish for the days back when Ella and I gave each other permission to be silly ,to be the crazy aunts that our nephews love and to be the crazy dykes who did shit at a moment’s notice but right now if the present is a sign of the future I don’t know how to get back to that.

Many are going to say this is a “Mia crying woe is me post” but nothing is farther from the truth, this is Mia having what my southern friends call a come to Jesus moment although in my case it would be Buddha. I simply want my life back I want my love back I want the fun back I want to once again reach for a fine Barossa valley cabernet sauvignon without worrying will it Affect my diagnosis to eat a plate of fine Italian food without worrying about sugars.

I want to grow old with the love of my love and not simply spend my time with a nurse.

Apple creates phones that have more power in one small phone than the computers that sent the first astronauts to the moon, is it too much to ask that someone can create some way for the dis and otherwise abled to live la dolce vita?

“Close enough is good enough”

On November 23rd I was sitting home at about 10pm and suddenly without notice had a Tia A”transient aschemic attack” or a mini stroke, the difference between a TIA and an actual stroke is that the offending blood clot with a TIA breaks up just before it gets close enough to the brain to do permamnent damage and cause a brain bleed,

The effects albeit temporary are the same,

drooping facial muscles

slurring of the speech

weakness of the muscles on one side of the body

with a stroke they can be permanant, with a TIA they normally disappear leaving only intense exhaustion within 72 hours.

I was in Hospital for 5 days at flushing general hospital, A word of warning, if you get shot stabbed and run over in front of flushing general crawl somewhere else. They had the bedside manner of Osama Bin laden at a Jewish high holy day and the combined intelligence of a fart in a bottle!

Don’t believe me? a Tibetan surgical resident Dr tenzin said the TIA was caused by and I qoute” your sedimentary lifestyle because everyone knows once your disabled and in a wheelchair your physical life is over and you can’t exercise or do any sport you just sit and do nothing”

The wanker above had obviously never heard of the Paralympics or  Christiian Otter bailey or Wheelz Fotheringham and when I tried to point out that I rock climb, swim, road race teach judo from a wheelchair and run my own off the grid  farmland he called for physc eval because in his words i had “delusions of normality”

I also live with irritable bowel syndrome and have to live strictly on a vegan version of the FODMAP diet, now in 5 days 15 meals 4 dietitians three doctors and two nursing directors they could not organize a single meal that was not dangerous for me to consume?

So finally I was out and home, then came the barrage of specialists , neurologists, cardioligists eeg’s ekg’s stress tests, cardiac doplers, ct scans so Ella got busy organizing appointments.

Now what I’m about to say is not racist becuase it concerns a Russian doctor and Ella is Russian, but when we went to a Russian neurologist and when they went to take my blood pressure instead of having the kind of machine doctors normally have they had a $29.99 walgreens special home unit and TIA’s being caused by hyper tension which is high blood pressure I inquired “is that machine calibrated the reply was “aaah close enough is good enough”

Then not knowing we spoke and understood Russian the the nurse the pa and the neuro stood in front of us and started to talk insultingly about us in Russian .

When we made the appointment we asked are they wheelchair accessible? and they said they were. When we got there The  doors were not wide enough, they had to remove an entire sofa from the waiting room and they knew we had a service dog and yet when they saw him they said to each other in Russian the dog had to go?

We  started to realise with one cancelled appointment after another if it seems to good it probably is. Most secretaries have never heard of the ADA and have no idea what accessible means, and if your doctor was educated in the medical school of Grenada or Guatamala and theyre not Grenadian or Guatamalan there is probably a good reason why they didn’t get into an American medical school and a greater reason why you shouldn’t go to that doctor.

Here’s some tips for what to avoid in a doctor when making appointments

1/ If the secretary cannot speak English or sounds like she thinks conjugating a verb is a form of birth control and you’re calling an expensive specialist not an internist in a ethnic community

2/If when you ask if their ADA compliant or accessible and they have to ask what the big words mean

3/If the country they went to medical school in doesn’t have a us consul or is on a tourist warning list

If you ignore all of the above and you show up

1/If the staffs attire is more at home in a strip club (the neurologist was wearing a mini skirt fishnets and thigh high boots)

2/The staff shove you in a back lunch room and staff keep walking in and out and boxes of supplies are stacked all over the room because it’s their”accessible room”

3/ The ADA compliant entrance to their building is the garbage dumpster cherry picker in truck loading bay in the basement

Then to quote the movies “run forrest run” because even in 2017 New York City this is what passes for competent ADA compliant medical care sadly.

Everyone knows your disabled and can’t do anything that’s why you’re sick!

10pm Tuesday the 23rd of November I was talking with my wife watching tv and suddenly my face dropped and speech started slurring ,and it got worse by the second and later I was to find my left side had lost strength and coordination.

My wife called 911 and within 20 minutes I was in the ER of flushing hospital. Being treated for a possible stroke and had a ct.

The good news if there was any it wasn’t a full blown stroke but something called a TIA or transientaschemic attack, a TIA is a mini stroke the difference is the effects should wear off in 24 hours but the downside is they can hit in clusters.

There was a shift change in the ER and my new medico was a Nepalese doc called tenzin,I asked what caused this and he gave me a smartass look and said 

“well you’re disabled you do nothing people like you can’t do anything everyone knows the disabled can only sit and vegetate ”

Wtf ? I told him I rock climb , do judo , swim, do road races, am building a house off grid ,he called me delusional and wrote on my file that I not only did nothing but had delusions of a normal life?

I showed the nurses photographic proof and they said they were astounded an educated man could hold such antiquated views but they couldn’t argue with him.

My four days in hospital were hell, and with dietitians not giving me any food whatsoever for 36 hours , doctors mistakingly listing me as an insulin dependent diabetic and trying to inject me regularly  and when they did get me food it was not for a person with irritable. Bowel syndrome or vegan

 It begs the question if you cannot get competent care in a hospital where can you get it?

Those who forget history are destined to repeat it

The people who came on the mayflower and built Jamestown fled religious tyranny to start a country where men were free to live work and worship how they please.

We fought the British because they wanted the American colonies under British rule.

We fought sant Anna at the Alamo when Spain tried to claim Texas and California for the holy Catholic Church which in those days was ruled from Spain 

” in god we trust” was not on our money or in federal buildings until 1951 when we were told the godless commies were coming for us.

We the people went west we settled the south the Stuyvesant bought Manhattan the Louisiana purchase took the state from the church ran French 

We have built a nation of 330 plus million people that until the latest election cycle have been developing as an educated people who while being free to worship their god left others to worship whom ever they chose. 

We have long remembered that this nation was settled by all the people  as a republic free of tyranny ordained by churches.

So now it’s as if we the people by listening to trump and his gang of historically amnesiac cronies are willingly wiping the centuries of freedom from religious rule paid for by the blood of patriots. 

Are we willing to drink his koolaid ?’ to turn America back to the days of Jim Crowe  and women barefoot and pregnant? and gays are so far in the closet they need a canary to stay alive?

The “good old days”he wants us to go back to we’re lit by the burning crosses of hatred  and the misogyny of a male dominated work place and lives lived in secret. And turning the civil rights back to a time where people of color used another door and sat on the back of the bus!

Pt Barnum said “there’s one born every minute”and “never give a sucker an even break”!The only difference between Barnum and trump is the sheer number of suckers, so before you reach for another glass of his flavor of koolaid Google Jonestown they drank a madmans koolaid for a better world too.

ABC 7 Newyork were not bound to anything but your incompetence!

A month ago abc7 news with Liz cho had a story about a stolen wheelchair and they referred to the user as ” wheelchair bound” I tweeted Liz whom I follow and told her we are not bound or crippled we are “dis and otherwise abled” and we use wheelchairs were not duct taped stapled or glued to them in short do not call us bound!

She replied immediately and during the time it took  to reply they had two more stories where they again referred to us as ” bound”?

I contacted the news via Facebook twitter and called the channel itself, yet day after day after day were referred to as bound by abc7 they obviously do not consider we the disabled people as important as a juicy story about trump or Kim kardashian. If they described reversed al sharpton as ” that colored guy” hell would pay and rightfully so if they were sexist to a famous women shit would hit the fan. But if a black women is disabled and uses a wheelchair there research is so pitiful terms like “cripple,retarded ,and bound” are used without thought!

The dis and otherwise abled community have had enough, you can’t say you weren’t informed.

I have had two conversations with Liz alone and left many posts.  We don’t refer to to the news anchors as “the Asian chick with the Jewish weather guy” so how about returning the respect.

Locker room talk?

Donald trump has described his talk with billy bush as ” locker room talk” well let’s look at that

I have since I was a small child played Australian rules football 





American football

I played lacrosse at club state and national level and judo at club regional state national and international levels I have been in hundreds of locker rooms in my life and never heard that kind of shite!

Yes they talk about their conquests but never wanting to rape someone.

And let’s disect this 

trump was on a bus owned by an entertainment gossip show 

being interviewed by a gossip reporter 

He was wearing a microphone?

What’s the number one rule of interviews? Nothing is ever off the record and the mic is always on!

Now his mail order nude model wife says the reporter egged him on ? OF COURSE HE FUCKING DID that’s what reporters do,they um and ah and laugh and say things like “wow tell me more” it’s called a fucking interview.

If he can fall for that what the hell is he going to do Dealing with Putin or AngelaMerkel,  or any other world leader?

He says the media is rigging the election? But all they’re doing is connecting the dots,he has for the last twenty years run off at the mouth about how he forces himself on women, to Howard stern to sixty minutes to Matt lauer and any other person at a bustop if they’ll listen.

He is every mothers nightmare “I love troubled teens the troubled ones are wild in bed” so now mom not only had hormonal teens and weed dealers   To worry about she has  to worry that the seventy year old running for office is hunting her too!

He rants at 3am about non existentsex tapes, spits the dummy when the most popular comedy show in the western world parodies his creepy antics.

Is this the person you want running the country? I don’t care republican or democrat just decent human being.

Now his response is “bill Clinton did bad shit”

 bill isn’t running, did anyone attack Barbara bush ? Or Nancy Reagan?

 Now their reply was ” she went after bills bimbos” OMG you mean a decent honest woman got angry and wanted revenge on the bimbos fucking her husband? Well that makes her guilty… guilty of being a hurt betrayed wife now what’s the word for that? Oh yeah HUMAN

So he has 9 women who never met each other all claiming he did exactly what he has been bragging about doing for twenty years, he says they all made it up is he a five year old whining or a presidential candidate?

If Hollywood wrote this character the show would be shelved,no one would finance the show.

If this  person applied for a job you’d never hire them 

If they dated your daughter you’d run them off 

If they  were a suspect for sex crimes you’d probably convict them


HE rabbits on about Benghazi and what happened was horrible, during the bush years there were 22 attacks on consulates.

The man buys 100 grand pianos for his trump casino 10 years ago and has never paid for them

He hires an architect for a golf course clubhouse and has to be ordered by court to pay him and to date the architect has only ever received 20%

He’s been bankrupt 6 times

Every business he started from airlines to steaks all went bankrupt 

He’s indicted by a grand jury for trump university 

He’s under investigation for the rape of a 13 year old at a party at the house of a friend who’s in prison for pedophilia.

He has refused to listen to intelligence conferences because he thinks the CIA don’t know anything

He asked three times in 90 minutes during a CIA briefing “why can’t I nuke them”

His first manager was a pr agent for Russian former KGB yet denied any connection to Russia 

Anyone of these listed above would discount anyone else from mayor let alone president irrelevant of party affiliation 

America you need to pull your heads out of your asses and put down the koolaid, I don’t care if the president is republican or democrat I just prefer he or she is not a phsycopath!

A waste of days, and wasted nights

A year ago this week my nephew was in town on leave from overseas deployment in the US MARINES, as I left my apartment in my wheelchair with Zeus the service dog on handsfree waist leash a group of local gangbanger wannabes circled around us on skateboards aiming straight at Zeus and in the melee I was thrown out of my chair slamming into a right angled steel gate post. The sharp right angled crease of the hard steel slammed my left shoulder, the impact causing a 97% tear of my rotator cuff and fractured my shoulder blade and crushed two nerves to my left bicep and right there in that moment my active productive “who the fuck is disabled not me” life screeched to a screaming fucking halt!

I wrote many times about the five month struggle to find a surgeon who gave enough of a shit about the disabled to operate, most saying they did surgery to give back quality of life and in their opinion in the case of the disabled we had none in the first place so surgery was a waste of their precious coveted hospital privileges?

On February 4th this year I had all the above repaired except when the bandages were changed the surgeon forgot to suture one of my five surgical wounds! Yes and he replied “oh shit my bad”

I was promised “3months and you’ll be better than you were pre injury” eight months later and I can barely lift 5 lbs with that arm but 150 with my other?

The other injury to my life that day that surgery can’t touch was the injuryto my soul! That morning I was s 275-280lb 6ft4 excellent disabled “adaptive ” climber who hated staying home did 10 mile rolls in my hybrid off-road wheelchair for fun and climbed rocks like a spider.

Month by month with searing pain reducing me to a power chair and being house bound and nothing but my depression daytime tv and the fridge my depression agoraphobia and waistline all held a race to see who reached maximum growth first.

It was I think a draw, in eight months I won’t answer the door unless I absolutely have to, I won’t leave the house without Ella and it’s absolutely necessary my PTSD rules both my waking and sleeping(when if ever it comes) and depression understudies for it when it doesn’t come knocking and these days I am weighing in the 350lbs and hopefully losing.

It’s a vicious circle,I can’t climb because my arm is fucked I won’t climb because I’m too fat I can’t climb because I have to leave my safe studio apartment in flushing to do it and on the days I think I might try PTSD and depression toss a coin and it doesn’t matter which wins ultimately I don’t so I toss a coin between the tv the laptop and the fridge but fuck why choose there’s room for all but if these days keep up there ever increasingly less room for me so then I worry over my waist line and that’s just one more piece of shit to totally fuck my days!

All because the ” kangbangers” (Korean teens who think they’re the bloods and the crips if they rolled on skateboards and swapped soul food for kimchee!) chose to pull there shit on me and Zeus that October day.

Yes they might have done the physical damage but they have no idea  the mental and emotional spiral it caused? I was never someone who used the wheels under my ass as an excuse but these days the cats ride my chair more than me and Zeus while still alerting to seizures is more a lap dog than active chair pulling outdoors dog he usd to be.

I hold on for my final move to New Mexico there at least even being housebound means acreage and sunshine and fresh air , the world it serms just keeps building walls between us and the move, walls that would make trump jealous.

I know things will get better I hope at least physically I should it’s just undoing the damage this year has done is harder than any route or cliff I ever climbed and as I get closer to 60 than 50 taking the weight off is so much harder than I ever remember!

So sorry for not writing for so long but the fog had to clear long enough to form a cognitive concept and even this had to done in an iPhone because my laptop got waterlogged.