The Pit Crew

Why do I get to survive and, relatively speaking – within this crazy-ass incurable NF2 world – thrive, while bright spots of sunshine and goodness like Michie O’Day and Felicity Lingle die?

As you may have noticed, I’ve fallen into the Survivor Guilt portion of our program.

I’m sure I’ve said this before and this is the absolute truth of it all – if not for Ten, Jen, and Oni, I’d be dead or in some crap nursing home and, most assuredly, would have been before the end of 2021.

Real life, in case you missed the newsflash, isn’t like the movies. You know, where John Wick takes blow after blow, gets shot, falls down zillions of flights of stairs, gets up and fights back or escapes on fleet feet. I don't have a John Wickian constitution – total bummer. I KNOW.

I know that, at my current health level, I could take care of myself if I had to but it would be a LOT of work and I’d need to move to an assisted living type apartment. Those are pricey as fuck though. Maybe just a regular apartment would be fine but I’d need one within a block or two of the T (the train/trolley line). I can’t drive anymore so I’d be on public transportation for all my doc appointments.

Whether on my own or in assisted living life would be a LOT more expensive, a ton of effort, and really lonely without Jen, Ten, and Oni.

Now I can focus on blogging, exercising (and feeling guilty about not working out enough), staying on top of my symptoms and in contact with my docs, making some art, reading, and, of peak importance, Cake appreciation time. Oh yeah, there’s also all that important time that I spend staring off into space pondering such world shaking concepts like:

• Do salmon dream?
• How long would it take for an abandoned golf course to revert to a natural state? How long before it turns into a field filled with wildflowers, bees, and bunnies?
• Are Republicans at all capable of self-awareness?
• Do orcas laugh? Do they bust a gut when they sink those yachts?

Our good boy Cake earns his keep by catching mice and looking tremendously handsome. Me? I’m more or less ornamental. Luckily, at this point, I’m still self-cleaning. No need to dust.

IF I was on my own, I’d have to spend most, if not all, of my time doing basic upkeep shit. What would take a healthy person no real time at all, might take me a day and I’d need serious naps afterward too. Laundry? Dishes? Scrubbing the loo? Vacuuming? Dusting? We can completely forget about cleaning the baseboards, high dusting, and windows. My balance is just not up to the task.  

Mind you, this might well eliminate the need for all those pesky PT exercises. I mean, wouldn’t performing all these chores amount to the same thing? I’d just need to add in some cardio and *BAM* I’m good. 

Okay, so there’s an upside. Nah, I WAY prefer having my family here. Cake may earn his board by slaying mousies and I don’t BUT at least Ten doesn’t have to clean a second, larger litter box.

Huh? Eh?! That’s something…RIGHT!?

Four Days and Some Change

I have to believe that Joe and Kamala are gonna win – that WE will win. Yes, I'm fully expecting that, after we win, the MAGAts will come storming out of their comfy suburban bunkers, loaded for bear (or, at the very least, anyone who looks or seems the slightest bit different – AKA not white). I don't anticipate a full blown uncivil war BUT I'm figuring we'll make the Troubles in Ireland look pretty fucking tame.

Actually, I figure the majority of ammosexuals just like how rough 'n' tough they think they look in camo T-shirts with weapons of war slung over their shoulders as they scream their plague germs all over cops and nurses. Gee, how manly...said no one but these tiny dicked morons and their pals.

Enough about that though. I hope we all survive the 82 days until Biden and Harris are sworn in. Considering that the only place I go with any frequency is Mass General Hospital, I should be fine.

Speaking of MGH, I met with my bean surgeon, Fred Barker, yesterday. I was kind of heartened to see that, since last visit (pre-Plague45) he's put on a few pounds. Why did this give me a little happy? Because it's nice to see that I'm not the only one! Jen, Ten, Oni and Hillel NEVER put on so much as an ounce. Swear to fuckin' Bast, either they never overeat (or consume fattening grub) OR they gobble down pizza, ice cream and onion rings and it goes straight to MY belly and butt. Glad I could be of service, fam. NOT!

In any case, the good Doc and I discussed the risks of next surgery. They don't sound terribly dire (left sided weakness – arm and leg) and it's a possibility, not a lock. When I have this next surgery depends on my symptoms. If my current left sided weakness turns out not to be an artifact from my August spine surgery, if it doesn't fade as I PT the shit out of myself, AND it gets worse, I'll have another brain slice 'n ' dice before spring.

Basically I'm in wait and see (over the next few months) mode.  I fucking HATE wait and see mode! I'm just hoping that, by the time I'm back in the OR, the Plague45 vaccine will have come out. 

Rumor and some news reports have it that Massachusetts is shutting down again. GOOD! People have gotten complacent or just plain bored and impatient with being careful. I get it – really I do. BUT I'm not about to lose my life or further banjax this skin suit just so's I can eat out at Fusion Kitchen...fer fuck's sake.

Yesterday alone there were 1,346 new cases of Treasonweasel Plague here in the Bay State. 561 new people needed to be hospitalized. What, the goddamned actual FUCK. Wear your damn masks! Wash your paws and stay six bloody feet back (if you're in my vicinity, keep 12 feet MINIMUM away)!

There was good news from yesterday. My pal Felicity (a fellow Nf2er) will be headed to a nursing/rehab facility right here in my little town. This means I'll get to see her more often – YEA!

Wonder Women

This post is for Celeste, Felicity, Michie and everyone else who’s struggling with the bullshit of a sketchy corporeal and/or cerebral existence.

I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.
~ Anonymous

I’ve always tried to be strong, unafraid and unfazed, always moving forward to meet the challenges of 48 bazillion scary surgeries AND, at the same time, maintain my warped sense of humor. I’ve done this not just for me but for my younger sister who also has the family curse, Neurofibromatosis Type 2.

Warum? I motherfucking REFUSE to let this rat bastard, shitheelian disease consume my life. Yes, the last couple years have been action packed (the battles, it seems, come in clusters – a few years in my 20s. My 30s were quiet, My 40’s were WAY too fucking busy (one spine slice up, three brain ops and my hearing took the last train for the coast). NF2 left me mostly alone until my late 50s. Since hitting 60, I’ve had two spine surgeries, almost lost my left eye and, so far, just one craniotomy. And I just turned 62 – all this excitement is one hell of a challenge to my cynical yet weirdly buoyant state of mind.

I don’t want Celeste or my young pal Felicity to despair or define themselves by Nf2. My friend Michie, who’s my age and also a painter, is much like me. She’s a partner in FUCK this Nf2 shit – I will enjoy all that I can/while I can and I will laugh. Nf2 is NOT the boss of me!

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.
 ~ Martin Luther King Jr.

Right, the fuck, on!

On those days when I can’t even crawl, I rest. Yesterday was one of those.

Resting is not laziness, it’s medicine!
~ Glenn Schweitzer

If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.
~ Carmen Ambrosio

That’s hard to keep in mind and, more challenging yet, to give myself credit for those small bits. It’s necessary to keep me keeping on though. This morning I've brushed my teeth AND flossed. I walked down the stairs. Later, I’ll take a shower and wash my hair (standing up, if my legs feel strong enough). I won’t be able to walk down to the seawall every day but I will again and, in a few months, maybe I’ll even be back to my regular mile and a half morning rambles. I can see that happening!

Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.
~ Kelly Hemingway 

I don’t like freaking out or swimming in the Sea of Despair. Who, the fuck, does? We all gotta feel what we feel ‘cause it ain’t gonna go away if we push it down into that steel lock box in our beans. What’s BIG important for me is to know that sadness and panic are temporary.

I just need to breath deep, eat a cookie and, maybe the same day or maybe tomorrow, reboot my system.

Life is either a daring adventure or nothing at all.
~ Helen Keller

TELL it, mi amiga!

I often say now I don’t have any choice whether I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make.
~ Michael J. Fox

Right on, mon frère!

Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.
~ A. A. Milne

The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.  
~ Anonymous

Just Imagine

This morning we’re back with my friend Felicity. When we last saw her she told us a bit of how she navigated homelesnesss while deaf. Here's more of her story.
~~~
I heard about Boston Healthcare for the Homeless from another guest at the shelter. She suffered from chronic pain, and had been homeless for a while. She was a good advisor.

Boston Healthcare for the Homeless would not accept me as a patient. My situation wasn't critical and there weren't any beds open anyway.

Ed. note: Remember, Felicity, like me has Neurofibromatosis Type 2.

I asked Rosie's Place if I could stay in bed to comfort myself while enduring this brutal pain (from brain tumors) and sleepiness (from chemo and anti-convulsants). Their answer was absolutely not!

Ed. note: I find this appalling, cruel and astoundingly clueless. Often, when I’m rockin’ the schwannoma and meningioma headache action, nothing at all helps but laying flat with an ice pack on my throbbing tête. Had I been tossed out onto the streets, survival may well’ve been beyond me.

I never resorted to panhandling. I spent my days at the library or a cafe or walking around. I carried a backpack with everything I needed. It weighed maybe 25 pounds. Manageable, but heavy after walking around with it all day long, in all types of weather

I left the shelter on July 21st. Every guest was allowed a three week stay. I then stayed at various other shelters including Sancta Maria, Woods Mullen, and, now closed, Long Island.

My story isn't unusual or unique at all. You may see homeless people panhandling on the sidewalk, but many more, you never see. They blend right in. They're still getting chemo infusions, going to cafes, museums, libraries. They keep up appearances and you would never suspect that they're homeless.

I once had a stranger approach me and ask if I was an architect. You see well-groomed and polished women walking around the city with rolling suitcases. They may be a tourist or they may be homeless. They may work at Macy's, Shaws, the Pru, or a boutique on Newbury St.
~~~~~~~~~~~~~~~~~~~~~~~

Poverty is not a character failing or a lack of motivation. Poverty is a shortage of money.

I grew up hearing over and over, to the point of tedium, that "hard work" was the secret of success: "Work hard and you'll get ahead" or "It's hard work that got us where we are." No one ever said that you could work hard - harder even than you ever thought possible - and still find yourself sinking ever deeper into poverty and debt.
~ Barbara Ehrenreich, Nickel and Dimed: On (Not) Getting By in America

...it is actually more expensive to be poor than not poor. If you can’t afford the first month’s rent and security deposit you need in order to rent an apartment, you may get stuck in an overpriced residential motel. If you don’t have a kitchen or even a refrigerator and microwave, you will find yourself falling back on convenience store food, which—in addition to its nutritional deficits—is also alarmingly overpriced. If you need a loan, as most poor people eventually do, you will end up paying an interest rate many times more than what a more affluent borrower would be charged. To be poor—especially with children to support and care for—is a perpetual high-wire act.
~ Barbara Ehrenreich, It's Expensive to be Poor

Ehrenreich has brilliantly written about the working poor, the criminalization of poverty. Imagine being unemployed, poor, homeless, deaf AND sick.

How I navigated being homeless while deaf

When we last heard from Felicity, she was on her way to Rosie's Place. Here's what happened next.
~~~~~~~~~
I went to Rosie's Place on July 1st 2011. They are a woman-only shelter with 20 beds, awarded by a lottery system. If you win a bed, you are allowed to stay for 21 consecutive days. I arrived around 7:30 am and stood in line with about a dozen other woman, all ages, all races. They had 3 beds available. They handed us each a numbered playing card, then drew numbers. Miraculously I won a bed on my first attempt.

The other 2 women became my new roommates, along with a fourth woman that was already staying at the shelter. One of my roommates was middle-aged, she'd been living in her car after getting laid off, my other roommate was in her 30's, her boyfriend had abandoned her after moving with her to Boston from the Dominican Republic. My fourth roommate was middle-aged and had a full-time job at Macy's.

At some point during our stay, my roommate who had been living in her car, developed a serious kidney problem. Her leg swelled like a log, and she had to be transferred to the hospital. When our Macy's roommate's stay ended, her bed was taken by a young recovering addict.

At this point in time, I was getting bi-weekly chemo infusions (Editor's note: one of the new treatments for Neurofibromatosis Type 2 is chemo!), and swallowing gobs of prescribed Carbamazepine, an anti-convulsant, to treat The Worst Pain Known to Man. So on top of the stress of being homeless, I was enduring extreme pain and fatigue.

We were not allowed to stay in our rooms during the day. We were required to leave at 8am and be back by 6pm. If you didn't adhere to the rules, you'd lose your bed.

No one cares if you have brain tumors, are deaf, are getting infused with poison to save your life. No one gets special treatment when you're homeless.

Shelter employees are not medical professionals. They are mostly ignorant about disability and disease. They treat homeless clients like criminals.

One day I returned to the shelter and entered the dining room with a bottle of water, it was the middle of July, blazing hot.. The kitchen manager began screaming at me. I said, I'm deaf, I don't understand. She continued raging at me, until I finally deduced that my 16.9 oz, half-full water bottle from CVS, was prohibited contraband. How naive of me. //snark//
 
Another time a supervisor instructed guests to go downstairs. We roomed on the 3rd floor, I went down to the first floor. The counselor came down and began screaming,

counselor: What are you doing down here?!?!?!
 
me: I'm sorry I'm deaf, you said go downstairs.

counselor: NOT THE 1ST FLOOR, THE 2ND FLOOR!!!

Once a week there was a medical clinic. I went one day, ailing my ass off, to ask if I could be transferred to Boston Healthcare for the Homeless facilities. The answer was no, because I didn't require in-patient care.
~~~~~~~~~~
Felicity's story will continue.
 
Just FYI, here are some other shelters for women in Boston:
Project Hope
Sancta Maria House For Women – no website listed (that I could find) but here’s the phone number 617-423-4366
Woods-Mullen Shelter

On Becoming Homeless (while deaf)

I asked Felicity, How did you become homeless? What was the lead up?
~~~~~~~~~~~~~
In 2011 I had been living in Allston with three guys. A cab driver/artist, a stoner who worked at the Tootsie factory, and a scumbag piece of shit who worked in sales at the Herald.

I had moved to Allston in February 2010. In 2009 I had a swift and drastic hearing loss in my "good" ear (already deaf in the other). I left Western, MA to be closer to MGH and the Neurofibromatosis clinic. I'd heard about a clinical trial for Avastin, which could possibly restore my hearing. I wanted to participate.

In 2008-2009 I was working at Springfield Public Schools as a substitute teacher. I had intended to go back to school and get licensure to become an actual teacher. I wanted to teach English as a Second Language. I had my preliminary teaching license and needed my subject license. My best friend's wife is a teacher and gave me tons of resources and study materials.Then when I learned the test was administered by audio, I bailed. My hearing was way too far gone.

At the same time the Springfield Public School System didn't ask me to return. My hearing was total shit and I had no control over the kids – I subbed at the high school level. I also required tons of days off for MRI's, Audiograms and other medical needs.

So when the school system didn't ask me to come back, I filed for unemployment but was told substitutes are not eligible for unemployment. I'd always been good with money and had enough savings to move to Boston and set up while I looked for a job.

I never found a job even though I worked tirelessly sending applications. I applied for sub jobs in Boston and Cambridge on a weekly basis. One thing about being deaf – you'll find most people will refuse email contact. This happens with apartment hunting as well.

I lived on the little savings I had. My dad told me I should apply for Social Security. The Social Security Administration had the audacity to tell me "you can hear," and they denied my application. I had sent them doctor's notes from MGH and audiograms from MEEI, and they had the fucking balls to call me a liar!

Unbelievable!

Editors note: !!!!!!!!!!!

I was in Allston for 17 months. Twice I almost ran out of money, and thought I was doomed. Once I made it through with funds from my tax-return. Another time, I "struck gold" when I remembered a little money I had stashed in a 401K.

Finally on July 1st of 2011, I was totally broke. The timing could not have been better because a couple weeks earlier my scumbag roommate assaulted his girlfriend in our apartment.

I was awoken, one night, by a deep, visceral growling noise. I got up to investigate and outside my bedroom door, scumbag John was growling at his girlfriend and she was bawling. I asked, "what's going on out here?" John just looked at me and they both moved up the stairs to his room.

I woke up the next morning and saw cop cars and a paddy wagon on the street below. I went outside my room and saw a trail of blood going down the stairs. I looked out the window again, and Johns girlfriend was crying hysterically talking to the police. Meanwhile John was in handcuffs, being led into the paddy wagon. The police entered our apartment and interviewed me. I told them what had happened the night before.

Later that day John returned to our apartment. He showed no remorse or shame for beating his girlfriend. I learned later that he also threatened to kill her. It was his girlfriend who had bailed him out.

Editors note: !!!!!!!!!!! Jesus. Typical and desperately sad.

I discussed the situation with my other roommates. The stoner roommate thought John deserves another chance. My artist roommate was more neutral and removed – he usually stayed with his girlfriend and didn't spend much time at the apartment.

I spoke to our landlord, who was utterly indifferent. I was adamant that one of us had to go. John refused to leave, and the landlord had no problem with domestic violence. So I left.

On July 1st I went to Rosies Place.
~~~~~~~~~~~~~
There's more to the story. New in town, without a safe home, job or solid friend and freshly deaf – how did Felicity navigate this challenging world? We'll find out!

I’ve made a new friend!

Her name’s Felicity.

How’d we meet? I was looking for an ASL MeetUp group that was, well, more vibrant and not a dating scene. Felicity was starting one up and it’d be in the mornings not evenings. AWESOME!

Here’s a coolio thing, found out in our early convos – not only is she a fellow deafie BUT she’s late deafened (like me), has the rare genetic disorder Nf2 (like me!) AND Doc Plotkin is her neurologist too! Oh and while I just lost the love of my life, her beloved father died a couple months back. Yeah, we’re sisters in mourning too. WILD!

Here’s another cool thing – she’s a disability rights activist. Wow. I asked her about that – how did she get into activism and what are some of the issues that she’s involved in.

She’s graciously agreed to share with us. (MORE awesomeness!)
~~~~~~~~~~~~~~~~~~~~~~~
It goes something like this.

In Fall of 2012 I was taking ASL 2 at Deaf Inc. in Allston. There I met a woman who works at the Boston Center for Independent Living. I was familiar with BCIL. I told her that they were instrumental in helping me navigate resources after I became disabled. I mentioned what wonderful advocates they were – key in helping me find housing. I had been homeless between July 2011 and January 2012.

The BCIL woman asked if I would be willing to go to the Massachusetts Statehouse to testify about my experience as a homeless disabled woman. I agreed. From there, I followed her activities and offered my "services" whenever they were needed.

In Spring of 2013 BCIL formed a Boston chapter of ADAPT, a national Disability Rights group. BCIL recruited several members to travel to Washington DC to convene with other ADAPT groups throughout the US.

I believe there were between 100-200 attendees with various disabilities. Primarily wheelchair users but a few deaf and blind activists were there too. We traveled there on Saturday afternoon and left Thursday morning. That allowed our group three weekdays to march and protest.

We lined up outside of the hotel, all 100+, and marched to HUD, the U.S. Department of Labor, the White House, Tom Perez' house in suburban Maryland, Service Employees International Union (SEIU) Headquarters, U.S. Department of Health and Human Services.

We demanded that caretakers for the disabled be paid a fair wage, we advocated for the Olmstead Act to be implemented, so that disabled people are allowed to live independently in their own homes, rather than languishing in nursing homes like prisoners.

We gathered in front of the White House, handcuffed ourselves to the fence, and got arrested. They really just wrote us citations. They didn't have the nerve or equipment to transport 100+ wheelchair users to prison.

We used civil disobedience. We would block the entrance and exit to the parking garages of the various Government Departments, inconveniencing the Government employees, until they relented and met our demands.

We took the Metro to Tom Perez' house. He was the Chief of the Department of Labor at the time. When we arrived at his house we were met by the Secret Service. Again, we used non-violent, civil disobedience. We sat and stood on his dead-end street for about six hours. He finally came out and spoke to us. I don't know what he said, as I'm deaf, but he stood his ground and did not agree to our demands. We were demanding that personal assistants (healthcare aides) earn more than minimum wage.

I've also done local activism with Boston ADAPT, Boston Senior Action Committee and Jobs with Justice, fighting for lower fares for the RIDE – Greater Boston's para-transit service. We shut down the roads near Park Plaza, where MBTA headquarters is located.

I've also testified numerous times at the Statehouse and Boston City Hall.

I was the squeaky wheel that convinced City Hall to make captions available at Hearings and City Council Meetings.

I prompted BCIL to participate in the PRIDE parade. I've spent several years nagging PRIDE to provide CART (Communication Access Realtime Translation) at their festival stage. They do in fact provide ASL.

That's all for now. I've run out of steam.
~~~~~~~~~~~~~~~~~~~~~~~
Too cool!