Author: R. Zamora

Originally from Los Angeles, now a New Englander though and through.
Gettin’ pretty tired of being the bad guy…

Gettin’ pretty tired of being the bad guy…

another rough day including a crushing reminder why i’ve had more than one bout of ambivalence with AA. simply put. there are times for rote platitudes and there are times when it doesn’t advance or help the persons struggle.

after 14 years, this last time, and numerous attempts for the greater part of 30 years. don’t you think i already know “they can only help themselves when they’re ready.” or “all you can do is say a prayer for them.” and the real humdinger “just keep coming…” as if i already don’t know my fucking way around the recovery block. get bent mister i talk while other people are sharing and i scan hot chicks on my crap boost pos on insta cuz i’m above this whole meeting stuff. seriously? back the fuck off…now.

i drifted away from AA more than a few years ago because i got tired of not being able to find people who can simply talk without using the AA lingo and verbiage as a crutch. for a program that’s supposed to be about working from the inside out and finally coming to terms with actual feelings rather than numbing them. i truly fail to see the point in ‘talking around’ the real issue some is having rather than just being real. listen to the person for fuck sake, don’t just regurgitate some lame ass bullshit all of us old timers already know. that wasn’t the question when i said “i’m struggling with a friend and could use someone with experience in <X> please find me after the meeting.”

the stakes are that if i cut off all ties with the ONE neighbor i’ve connected to since moving here 3 years ago. i go back to being an island of 1. no more visits from her daughter, who i totally identify with in having an erratic and undependable mother, and yes, i do worry about her safety. i get that i can’t save her and she already knows i won’t support her actions when she’s on one bender of another. she learned she couldn’t come over and ‘nod out’ on me and leave me to take care of her 6yo daughter for instance. we’ve already had that conversation and for awhile she learned i’d only tolerate visits when she’s ‘with it’ and present. all good easy peasy… until today.

as much as my instagram feed shows a beautiful view, and seemingly tranquil life, nothing could be further from the truth.

i’m alone, in a town where i don’t know anyone. and i’ve been through heel and back in just 3 short years.

when you get sober you’ll lose a lot of people in your life. i was prepared for that and once i did get rid of the enablers things finally began to change. what i wasn’t prepared for is losing regular friends as well. people who’ve let friendships slip away for some unknown reason and just ghost you as though you’re the bad guy.

logic says i’m supposed to know that ‘that says more about them then me’ but that’s not how feelings and emotions work. you can’t logic your way out of hurt feelings and loneliness.

by cutting off someone i clearly cannot help, i do in fact end up being even more lonely than i was before. that’s the part no one wanted to listen long enough to hear. no one ever wants to stick around long enough to heard the ‘real’ stuff. instead…

“Here’s your platitude for the day. Keep in the 24hours and tomorrow’s another day.”

yeah…fuck you and no regrets either.

Begin brain dump…

Begin brain dump…

5/29/19 4:46 pm – today was pretty rough. i’d been through the ringer trying to get medicare to answer a simple question and then i spun out of control from there. the following is a brain dump (i frequently fire up email and just type away as the thoughts flow freely and so as not to lose the natural train of thought.)

begin brain dump 3:24 pm

…the entry back into the medical system hasn’t been easy mostly because our healthcare systems haven’t fully caught up with medically complex people who already have a built in fear of people. in order to make it through that process, you’d have to be really comfortable with being repeatedly asked to recount your family history for each medical professional along your journey and therein lies the trigger…

given my history of sustained childhood trauma – sexual, psychological, physical and emotional from my earliest memories at the age of 2 – and continuing all the way through to the age of 14 when i first became a runaway living on the streets. it’s no wonder i have trust and abandonment issues to this day.

i’ve never stopped running and i’ve never really ever caught my breath tbh. i’ve been in an emotional dingy flailing through the sea of life for as long as i can remember. singularly. alone. afraid. let down. brief moments of defiance followed by longer moments of overshadowing self doubt…

i lack confidence. i lack trust. i lack resilience. i lack built-in healthy social cues and skills necessary to keep people in my life. i don’t lack insight or awareness however and for that i’m very grateful.

insight has allowed me to process a lot of brutal changes in my life in a very short three year period of time, all without stopping to fully process those feelings because i simply didn’t have that luxury. attempting to recover from emotional whip-lash isn’t an easy process but at least it’s familiar…unfortunately.

the loss of a mother who died alone in a hospital from pnuemonia. i was sent a usps box a little larger than a shoe box that represented her life. i tucked it on the top shelf of my closet and barricaded it with other storage boxes like a ticking time bomb…awaiting when my courage to break the seal overcomes me and i peer inside…see faces i’ve been fighting against in my dreams and flashbacks for decades. it’s torture untangling the good memories of her – with her – but it’ll come when the time is right. for now it’s simply too dangerous…

picking myself up after being knocked down by my father’s side of the family hasn’t been easy. the last interaction with them was before the holidays yet the feelings and emotions are still fresh and raw. having to deal with verbal abuse all while being keenly aware that his current physical and mental decline might be my own future playing our right before my eyes yet no one cared. a grim future confirmed by the same fate that ended my grandfathers life when he could no longer get himself out of his wheelchair on his own. thats my father today at 79, my grandfather gave up at the age of 82.

in short – complete lack of mobility, decreased strength resulting in a wheelchair, ultimately dementia and then the final lack of will to simply continue living. i’ve had a lot of family members give up on life. they reached a place in their lives where they just gave up eating and let go of their timeline…

the word timeline is this linear way i view life. we all have one. in an ever expanding universe my vision of it is that of a bright light blue beam, disappearing into infinity behind and ahead of you. perhaps you’re one with your fist firmly grasped around your timeline, riding it for all it’s worth. connected. plugged in. you understand it and you’d be right there with the majority of other humans who are healthy and well adjusted. that see a future even if it’s “unknown”.

then there’s people like me. left hand lightly resting on it’s electrical hum, tangible yet ethereal, i flirt with just how far can i loosen my grip…can i let go completely and grab it again in time or is it finite once i let go…i wrap more fingers around it while looking all around me at the infinite other timelines near and far. left, right, up, down, is there anyone near me that’s on the same path or same speed? will i be alone when i let go of my timeline?

will there be other strangers sharing the same wink and nod that we’re ready at the same time yet not alone? a comfort for all of the other ‘party-of-one’s’ in the world as we let go in unison…

i’m not connected right now and that’s okay. i’ve lived my entire life touching the timeline of life just enough not to get entirely lost, but loosely enough so as not to feel everything it throws at me along the way. not always but that’s the goal. soften the bumps and be less afraid when change rears it’s head and adjusts the speed to uncomfortable and terrifying levels.

pity about a timeline that i never asked for no longer serves a purpose for me. it robs you of today’s time…the time you need to right the sails and see your way into a safe harbor. i’m the master of this ship. i choose where i set my sights.

even after getting to a place of “okay, here are your insurance options based on location, returning to boston isn’t possible and that’s just where you are.”  the larger question is still “just how far am i willing to go in order to avoid my physical medical needs because the mental anguish will just be too much?”

the pcp side of the process, at least as far i’ve experienced up to today, hasn’t fully caught up with supporting the mental health side of your limitations. don’t let the slick ads and misleading websites fool you, they really haven’t caught up and disclosure, imho, is still very risky.

i don’t have the energy to lament the misleading, outdated and biased use of ANY “Find A Doctor” search feature currently in existence. google it, they act as funnels and not in a good way. out of date info and even if you do weed out the bad info nine times out of ten you’ll call and something makes it not possible. “They’re only in the office Tuesday afternoons and Saturday’s from 7:00 am to 10:00 am.” really? how is that a PCP???

telemedicine may be the buzz word du jour but reality couldn’t be farther than the truth. looks good on a branded website or a mission statement but good luck with that…

so… today i once again tried to get a simple answer from medicare and once again it was like speaking martian… “If I call my Dr. because my elbow, wrists and joints are hurting so bad I can’t drive is that covered?” <enter circular conversation head explosion in 3-2-1…> “As long as it’s medically necessary and the Dr. deems the appt. necessary.”

blink…blink…blink

“so you’re telling me that when i’m experiencing pain, that is getting worse, and you know I’m on SSDI (disability). You can’t tell me whether a routine office visit for pain of a key joint such as my elbow is covered or not and that i won’t get hit with a bill that i can’t afford afterwards?” “As long as it’s medically necessary…” CLICK

earlier i tweeted something to the effect of no wonder suicide is on the rise. people are terrified to see a dr. because there are zero guarantees you won’t end up one bill over the line…that one bill that breaks your financial back and sends you into credit, financial and medical free fall.

that’s the anxiety. that’s the key issue. that’s my barrier.

today i was told by a very nice woman that in today’s system “you really need to be your own advocate.” and not in a bad way. she let me know she ‘got it’ and that was based on her experience, not from a judgemental way. problem is back at the start of this post. the lack of self confidence and resilience. i just don’t have those skills.

i know i’m precariously close to giving up my pursuit of medical care and by the same token i also know i needed to reach out for help today. the woman at the agency i contacted was super empathetic and understood my situation. she was super patient and sensitive. she could tell i’d done a lot of work in therapy so we were able to use familiar terms which made the conversation easier.

i made sure to fully disclose my trauma and how that manifests today in the form of complex ptsd in the form of anxiety, panic attacks and general fear of being in public…today. i haven’t always been this way of course and hopefully i’ll find my way back soon.

i’ve reconnected with a friend from high school. a friend who’s family gave me a place to live during those turbulent times. it’s taken me a few years to sort things out. i pushed a lot of people away during this life altering transition and i’m still coming to terms as to why while finding ways to make amends. when you’re in that dark place and you’re only connection is social media or other electronic means, other people’s happy lives hurt even though it has nothing to do with them but everything to do with you.

when you’re parents and family should have been wiring your brain for a life of confidence and self esteem but instead instilled nothing but fear, worthlessness, not capable and defective on a daily basis…well…that’s a whooole lot of re-wiring that needs to be done.

while i wait for a call back the best i can do for today is the serenity prayer.

God grant me the serenity to accept the things i cannot change; courage to change the things i can; and the wisdom to know the difference.

Managing Anxiety From PTSD is Possible…

Managing Anxiety From PTSD is Possible…

It’s been a rough couple of weeks when it comes to personal space. When I moved to Little Crab Cove I was so so grateful for the privacy and beauty that a wetland could provide. Great Blue Herons are frequent visitors. The Osprey’s are back and circling the pond in the mornings and early evenings. And sunsets are a birdwatcher’s paradise from the deck.

The pond is a blessing but not really curse level when it comes to living with this sort of responsibility. It’s an officially designated wetland and yet the people who frequent my neighborhood could care less about the impact their activity has for the entire eco system.

How this relates to my PTSD and Anxiety is when people don’t respect your personal space and actually challenge and provoke you to defend it when you shouldn’t have to. When no matter how politely you try to appeal to someone’s environmental sensibilities, they really really don’t care.

Today’s post is a positive one. The background is where the Anxiety levels were escalating and I knew I needed to find a solution. That meant having to call a town office and actually speak to an official. Something I usually never ever do. Are you kidding? Those things usually terrify the hell out of me. Talk to someone? One on one? Not get jumbled up with my words? That’s madness!

Not today. I knew I needed help clarifying where my private property rights as well as find an environmental balance with the town and that required a phone call and an in person visit. We agreed on 4pm and somehow I went on auto-pilot.

“You have a right to ask for help. You’re only positive intent is to find a go forward solution, focus on that when you’re speaking.”  that was how I prepped and I’m glad I did.

Today was a day I can put in the win column and it also validates my new approach in dealing with Anxiety. Talk myself through things. Throw out the old negative thoughts and audio tapes that say you’re ‘not a worthy person’ and start fresh.

If you assume positive intent and/or lead with positive intent, you’re more likely to be rewarded with a positive outcome. You may not alway like the answers in the compromise you have to reach and that’s okay.

The gentleman who dropped by, same day appt. btw, was super nice in hearing me out as well as being opening minded and factual as we walked the property. That type of personal and positive contact means a lot.

It’s been a tough transition from 2016 and the beauty that surrounds this place it what helps me find balance in my life. It’s healing and it’s worth fighting for.

La Mirada Ave, Hollywood CA ’77

La Mirada Ave, Hollywood CA ’77

who knows why i capitalize things or write the way i do. i’m not a professional and i failed 10th grade english. the transition from junior high school in 9th grade to high school at 10th grade was when my life began to fall apart…

13 – 15ish were the years living with my father on a street called La Mirada Avenue in Hollywood California. a classic hollywood neighborhood in between santa monica and sunset blvd. little armenia i think its dubbed now which i find kinda odd and offensive but that’s another topic…

traditional as well as side by side spanish style stucco duplexes co-mingled with 50’s retro apartment buildings, replete with large lettering, backlighting and landscaping. some stand alone classic california bungalow’s mixed with various corner stores upstair apartments and a new thing called a mini strip mall made for a diverse mix of people. rick dees’ disco duck was popular at the local laundromat.

le conte junior high was just around the corner which made getting to school easy in the morning. le conte and hollywood high schools were open campuses back then. on a trip to L.A a few years back they looked more like prisons which was sad.

7th grade in 1977 is when i was abruptly dropped into the city of hollywood. uprooted from a year of stability and safety where i was finally learning coping skills. a city where everything and everyone was completely new to me…including living with my own father.

i had spent my 6th grade year living in arizona with my grandfather and other aunts and uncles because my father had sent me there for a summer and then didn’t want me back…and then suddenly he yanked me from where i was perfectly comfortable living and it changed everything…forever.

1977 hollywood was a huge change from living on a farm in arizona. a place with wide open spaces a sense of routine and grounding were the best thing for me back then. so when it all changed to having to live in a one bedroom apartment stacked up with 8-10 other units, it was all too much for me. i’d try to tell my dad but he didn’t get it. he never did when it came to things i could and couldn’t handle.

i don’t want to go too far back tonight so just some quick back story on meds and ADD w/Hyperactivity disorder.

i had lived in arizona before when i was 7 and had to spend 2nd grade there as well. this is when ritalin and eventually dexadrine became part of my life and would continue until i would come back for 6th grade. the same year my grandfather threw out the drugs and taught me how to farm and keep busy. it was the healthiest i had ever been…ever. even my childhood dr. was surprised to see me go from a sickly kid on 3 different meds to a strapping teen farm kid who was happy and healthy.

i would come to be in hollywood at the strong objection of my grandfather and and aunt who was only 18 herself at the time. i also didn’t know they wanted me to stay until just last year when my aunt and i began to reconnect over the health of my now ailing father. she told me they both told him he should leave me where i was but he didn’t. that’s a hard feeling for me to reconcile even today. it’s difficult to stay away from the thoughts of ‘if only’ he had just left me where i was. it’s not productive but it is my default programming. work in progress…

the desert offered me something no one had ever bothered to ask me about in all of those childhood psychologist pick your brain discussions. the peace and solitude of wide open spaces with stars that lit up the night sky as far as the eye could see. the smell of rain or a thunderstorm on the horizon. the smell of the creosote bushes on the breeze as a wall of rain and lightening sweep through…i wish i was there right now.

teenage years are rough enough and when you’ve been yanked all over the place your entire life all i wanted by the age of 11 was to get off the fucking carnival ride of drama that my father created for my mother and myself and just be left the fuck alone…i’m here because of you jackass, go live your life and leave me alone i would cry into my pillow. i didn’t want to leave.

noise. noise is the single biggest trigger in my life. it was a trigger throughout my entire childhood at school and no one would ever listen to me. i’m putting the emphasis on school because that was my father’s idea of how parenting was supposed to work. you send your kid to school and they baby sit you, that’s what his taxes paid for you know. his idea of fatherhood was basically financial meaning up until 7th grade he had always

paid other people to take care of me. paid-them-to-board-me-like-a-fucking-pet.

1st grade was when i lived with my grandmother on my mothers side, the years when the sexual abuse began, and 3rd through 5th grade i lived with people we weren’t even related to and i were people i didn’t even know. it’s no wonder i craved the stability of arizona and the time with my grandfathers side of the family. nothing bad ever happened there, it was where i wanted to stay you idiot, couldn’t you see that and not be selfish? no, that was too much to expect…another theme in our relationship. his needs always came first and my disappointment was something he hated. he hated it because i could never hide it, i could never hide my feelings not then and not even today.

as of last december, he still hates it…

we’ve all had those times when you’re told “Oh just ignore them, it’s no big deal.” and i get it. for most people it isn’t a big deal, you learn to tune it out and it becomes part of growing up. trust me i toooootallly get it. but…with ADHD and meds, well that’s a whole other ball of wtf is going on in my brain?!? did they reeeally know what the long term effects would be for meds at that age and for that duration? 7-15? that’s a long time if you ask me, oh that’s right. kids…seen, not heard…

noise, especially repetitive noise still makes me lose my shit. city living and apartment living in particular is a noise and scenario i’ve been running from my whole life. the thought of falling so far down the economic ladder that that’s where i end up again terrifies me. not so much my apartment living in boston but those of the L.A. type. thin walls of cheap and expeditious stucco, shared stairway landings and trying to block out the sound or visual movement of people less than 15 feet from your screen door. THAT kind of city apartment proximity…

while my health may be in the shitter right now, i am grateful that despite the route my life taken, at least i have a roof over my head and the only noise i have for company at the moment is my ticking cuckoo clock. i’m thoroughly grateful for moments like these. moments of unbelievable quietness, peace and solitude in order to organize my thoughts and expectations for the road ahead.

hollywood was noisy and close proximity apartment living. sometimes good sometimes not, but definitely not quiet. the quiet older married couple downstairs, the single lady across the hall and the armenian family below them made up our front quadrantof the building. that was in our first la mirada building before moving to a two bedroom just up the street.

funny how tonight’s emphasis is on noise and basketball. two things i hate the most as a kid. i mean i loved hanging out at school and stuff but sports totally weren’t my thing. the only reason my dad is even part of this writing is because he would often come and play after school. on one hand i loved that we were spending time together but on the other hand he didn’t hide how he felt about me not being good at sports either. this would become a common theme with us. what was wrong with me and why i couldn’t be like him. he never missed an opportunity to verbalize or physically lash out about it either.

to get through the health challenges ahead i’m going to have to deal with how it is that he triggers me today. and by triggers i mean being triggered when asked about my parents or childhood/familial history which is part and parcel when interacting with dr’s and hospitals.

as i write this i’m struggling with my fingers not working like they used to. keeping my arms raised to type becomes fatiguing and my wrists and right elbow feel like i just want to rip them off from the constant pain. i’m way past over the counter meds, which never worked anyway, and now i really do have to see a dr. which absolutely terrifying for me. the probing questions always lead to an un-rehearsed question i hadn’t planned for and then there’s the whole body touching thing.

i’m definitely ‘not there’ yet at all…

i was watching an old james garner movie called “Mister Buddwing” one night and then it clicked. Probing. Probing questions are what cause my anxiety to go through the roof and now i finally know why!

i found it channel surfing one night, TCM had been plugging it the week so i figured why not and what’s not to like about 1966 NYC?

the architecture, the style, the costumes and jazz. not to mention Jean Simmons, Suzanne Pleshette, Katharine Ross and Angela Lansbury. man wakes up in central park, has amnesia, then tries to piece it all together retracing his steps with each woman.

apart from the visual eye candy ala a 1966 film set in NYC, it’s still a drama dealing with some very tough subject matter.

Mister Buddwing is a made up name until he can put the pieces of his memory back together while various storylines play out with the female characters. in one scene a man asks to share a table with him while eating lunch. Buddwing seems put off but says yes.

then the barrage of questions start. the usual small talk typical of a 1966 nyc urban setting. the, what kinda work, where ya from ,what’s yer name kinda stuff. all things Buddwing can’t answer so he bs’s the pestering fuck until he blows up at the rapid fire bullshit!

Bing Bing Bing! We a winner! – that’s me to a fucking tee!

when i first saw the scene i hadn’t realized another twenty minutes had passed before i snapped back to the present. my mind had been tumbling the thought over and over that that’s exactly what happens to me but for one small difference.

i don’t ‘want’ to remember things people ask me, i never have. not that i can’t, i really really don’t want to and if you keep pushing me i will explode.

once my father uprooted me like he did and then proceeded to abdicate any and all responsibility for my difficulty adjusting from farm to city, i began running away from home and living on the streets doing things to survive a 14yo shouldn’t have to…those are the parts i don’t want to remember.

unraveling how my #anxiety and #ptsd manifest itself today has been a very long journey indeed. but. now that i have some distance from the holidays, i need to go back to forgetting things again. that’s not a bad thing and it’s not a negative commentary on my father either. it just means means i’ve found a few more pieces of the puzzle and that’s half the battle.

if i’m going to get through the medical hurdles ahead i’m going to have to work on familial triggers and pre-empt them ahead of time. i’m going to have to practice being asked the same questions over and over and over again while not losing my shit – especially when it comes to my father and his medical history.

i can’t let him rob me of a future, i just can’t.

i don’t ask why so much anymore when it comes to how or why life unfolds they way it does. it’s counter-productive and robs you of the present. i mean when a random movie can trigger an insight like that it’s pretty hard to not to be grateful.

grateful for something like the simple gift of clarity. grateful i’m still here. grateful to have found another piece of myself…

…end brain dump

Another closed door…

Another closed door…

contacted my old therapist in Boston. got the same reply i’ve been getting for months from All healthcare professionals. “Oh I don’t know anything about Medicare, that’s not my thing.”

Really? Than why and how is it you’re a Medicare “P R O V I D E R” yet you know nada??? Yeah…okay.

all i can say is that i truly am in a no mans land when it comes to medical care or mental health care. of the hospitals or medical centers that within driving distance of me the locals won’t even go to for specialist care.

if i’m lucky enough to bump into a neighbor long enough to strike up a casual convo, they all say the same thing. “I’d never go to that hospital, we always go to Boston, it’s waaay safer.”

so wtf am i supposed to do. i can’t drive that far on a regular basis. so far no one in either the medical side of things or mental health side of things seems to know what the fuck a Social Worker is or how to get one.

how, how the fuck is it that you can be disabled, yes i have my social security letter, be on Medicare AND have a Blue Cross Blue Shield Bronze supplemental plan but i don’t qualify for any type of outside help coordinating all of this??? zero? zip? nada? Hello???

i fantasize about just selling my house and taking whatever cash is left over and then try to get lost in another country somewhere. i mean why not just get a passport/visa and whatever else it takes and just leave the US all together?

i don’t have family any longer. i’m done chasing after friends who inevitably never call you back or make the effort to reach out themselves, so if i’m truly a ‘party of one’ as i call it, no one will miss me anyway.

if all else fails there are always the more immediate solutions.

when you’re an adult male of early childhood sexual abuse by a female family member, your world and perception of people is forever changed. you ‘may’ find a way back to normalcy and i’m thrilled for you if you have.

that’s just not in my story unfortunately. mine is shaping up to be one of solitude and permanent loneliness because i’ve been kicked to the curb so many times i’ve just given up trying. maybe i was never meant to understand how to navigate friendships or how to build an extended family of strangers.

i dunno. so many maybes…still so much left unanswered…

with whatever energy i have left in this timeline maybe i should really un-tether myself and just go off into wherever the wind might take me. it’d certainly be better than struggling with a healthcare system that has zero interest in helping someone like me.

life’s not so kind to single white me of a certain age, we’re always the first one’s to be cast offs of our society…

I’ve been coming to this decision for quite some time…

I’ve been coming to this decision for quite some time…

I’ve resigned myself to the fact that my health is what will ultimately decide my timeline.

By that I mean given the lack of support to get to and from appointments mean I don’t have any other choice. My health will get worse. I’ll eventually become wheelchair bound or some other sort of mobility issue is only a matter of time. I can last on home delivery for awhile but then the next hurdle will be my lack of being able to drive, go up and down my front steps, unable to go up and down stairs to the basement to do laundry and the list goes on and on…

This isn’t a defeatist attitude it’s just plain honesty with myself, what I’m capable of and what I’m not, there’s no changing that. I can’t drive 50 miles in each direction for a Dr. appointment in Boston and then spend the next 3-5 days recovering because my body is rebelling in pain, soreness and lack of movement.

No one wants to listen to me. No one wants to even offer a little word of encouragement. Instead, everyone seems to think their level of ‘assistance’ in your journey is to throw multiple phone numbers at you hope some ‘other’ agency can help you. Because…”That’s not something I would know about…” is everywhere you turn.

It’s so hard to bite my tongue and honestly, I’m not good at it in the least. My feelings and emotions are always always right at the surface, it’s who I am.

Today a “Social Worker” pretty much inferred, although not directly, that my situation is my fault because I live so far from Boston. Really? A neighbor just two streets over gets cab rides from here to Boston and back all the time but I’m somehow not on the same level of need? According to who? Medicare says appointments for a medical diagnosis are covered yet no one will honor those guidelines. Their response when pressed? “You can always find another Dr.”

So that’s why I can say with confidence the only way I’m going to get medical care is when my body collapses and I enter the ER feet first. It’s true and that’s that…

My father’s decline was as if I was watching my own health future. Five as in F I V E family members on my father’s side have either already died from colon cancer or are actively fighting it now. But somehow explaining to my PCP “Hey Doc, my last GI said I’m due for a colonoscopy this March and I need help with transportation.” his only reply was “I don’t approve transportation for my patients, that’s ludicrous.”

Today’s healthcare – Even when you do have Medicare and the most expensive Blue Cross supplemental plan, don’t expect anyone to offer you any form of assistance.

On the plus side Spring is coming and if this is where I meet my end, at least it’s a beautiful place to have accidently landed at this point in my life.

I’m not trying to be dark. I’m trying to be realistic given that I’m a ‘Party of One’ in life. There won’t be any long lost cousins, aunts, uncles or anyone else to help. There aren’t any friends, most still live in Boston and seem to think the phone is a foreign object for some reason. And I don’t know any neighbors in a town I literally just picked off of a zillow map that had a house I could afford.

I mean what were the other options? I could have gone the full section 8 please pay for everything will I sell all my assets…to what end? So that I’d be taking more gov resources rather than less? I decided to keep my own roof over my head, pay property & excuse taxes, water, sewer, trash, flood insurance, home insurance, care insurance, part D insurance, dental insurance, medication costs…last on the list? Food.

I did my part by not making myself a burden on a public system that doesn’t need it and instead of being supported in that choice I’m stuck in a medical gray area where you qualify for nothing.

I tried finding others in the survivor community online with mixed results. While I still want to find others that I can identify with, I don’t know that Twitter is the best tool for that scenario. Reliving trauma every day is exhausting and counter productive and that’s what Twitter does to this particular scenario.

Sure you want to support others and of course you want to listen just as you’d want to be listened to in times of need. I guess my position is that I really don’t need to see it in my feed in a very prominent and pretty constant stream. That may seem like I don’t care and that’s not it. It’s more from a self preservation perspective rather than place of judgement. We’re all valid and we’re all at various places in our recovery path.

Anywho…

Who knows what tomorrow will bring and at this point I can’t waste mental energy worrying about the what ifs or when will they call me’s anymore. It’s clear that unless you’re 65 and older on Medicare you’re basically on your own and it’s not a very comfortable place to be at all.

i should have known better…

i should have known better…

kicked to the curb on xmas eve by my father, aunt and step mother. why ask me for help turning my world upside down only to disavow all of the hard legal work you had me do in the first place?

after doing everything in my power to get legal documents completed from 3k miles away both last year and this year i’m told “we’re all set…” “we don’t need or want your help any longer…” “oh, you can see you father if you want but only on my terms.”

all of this via text on christmas eve…

really? you all couldn’t have the maturity to treat me with enough respect to pick up the phone and call me? or better yet. why not just wait until After the holidays have passed like normal people?

because none of you are normal people and i’m done being made out to be the bad guy.

i was an idiot to believe my father and family understood that in all of the legal paperwork i had sent that the one most critical for me today was a medical directive. it didn’t have to be to ‘direct’ his care but it would have allowed me to talk to and work with his dr’s directly. when you’re talking about the kind of genetics we have, that was all i had hoped for. a possible shot at and a small glimmer of hope that by accepting him for who he is today i’d at least have some hope as to what my own future might hold medically.

today all of that was thrown out the window without a care for me…as is always the case.

i’m sure i’ll be made the bad guy again. i’ll never get a thank you or a simple “I know what you’re going through, let’s find another way to help you.” kinda stupid to expect simple things like that right?

i’m not bitter. i’m tired. i’m tired of always being the one left holding the bag. i’m tired of always being the one mentally and emotionally battered and bruised without so much as a passing thought.

i’m tired and yes i’m truly done… goodbye dad, goodbye family and goodbye to my past. i won’t remember you fondly. i won’t spend a single thought trying to piece together gauzy idealistic dreams of what my childhood should have been like. there aren’t enough positive things that can overcome the negative now, it’s all become one black sludgey slimey memory i never ever want to recall again.

my holidays will be only mine from now on. no more nervous expectations there ‘might’ be a xmas card (and there never is). no more waiting for birthday cards or any celebrations. you’ve forfeited the right to be part of my memories.

i’ll go back to erasing all of them from my memory and feelings. there’s no space for them going forward and today i’m truly a party of one on this planet. i’m hurt and lonely. sad yet relieved as well.

relieved because i can now go back to cordoning off my holidays without the intrusion of an overly ‘entitled’ family who never gives a second thought to how it may upend mine.

it’s a little before 3pm and i’ve only just received the text 6 hours ago. my body feels crummy and yet it’s depressing but i’ll battle back before the evening sets in.

light snowflakes fall outside and i need to restock the firewood for an evening watching old movies. i have a spiral ham i’m going to make along with twice baked sweet potato’s and baby peas.

someday i hope to cook for more than one, just as i always do, but tonight and tomorrow will be as they always are. spent in solitude and safety while i safely shut out the world.

Happy Birthday Linda…

Happy Birthday Linda…

I’ve been laying low trying to prepare for today. Clearing Dr. Appt’s off my calendar, dealing with my father and generally freeing up my mental space to just breathe and squeeze in a little solitude and happiness.

With my sisters birthday being December 21st it’s always been a day that I try and reserve just for myself. It’s taken a lot of work over the years to remember her in honor rather than sorrow. Smiles rather than sadness…

The story with my father still unfolds. I make no promises and there are no expectations on that front. Yes I was very low there for a bit but I seem to be regaining some forward momentum again and for that I’m grateful.

I’ve been able to make it to Boston for a few more Dr appointments each with mixed results. Mostly having to do with accepting my physical limitations when it comes to driving multiple hours in traffic. The anxiety and PTSD impacts when it comes to hours of sustained and very heightened anxiety for long periods of time are one thing. It’s also the physical toll it takes on my back, spine, hips and neck. I’m down for the count for at least 24-72 hours after one of those trips.

The good news is I’m now in a different hospital system should a particular surgery be needed. One good use of my two years away from regular healthcare was to research patient outcomes by surgery and organization which is surprisingly easy nowadays.

I was able to meet with my old therapist Karen and we’ll touch base in the New Year. It was like seeing an old friend and I’m soooo glad I don’t have to start from scratch. $36 to park might be an issue but she’s open to video conference which is just as acceptable really.

Tonight’s the night I make all kinds of Christmas cookies and get lost deep in thought and time…

Classic Christmas music, measuring, tasting and baking while humming and keeping busy in our own private little world…it was how i used to distract her from the chaos that was our mother…

Merry Christmas & Happy Birthday Linda, I miss you… Xo

25592062_10215538806806487_7658071103993987476_n

Linda’s first skateboard lesson, I was holding her up on this lime green skateboard trying to keep her from going down the hill… #CaliforniaSummer77

Dear Dad, thank you for calling…

Dear Dad, thank you for calling…

I look at it this way Pops. Our futures have intertwined so that both us may come to know a final peace and understanding of ourselves. I’ve always known the only way through any or all of this was was by having to find a way to not only forgive and forget, but to also remember the love that was there as well.

If you’re willing to reach out today and ask for help, and I’m more than touched that you did. Than let’s find that peaceful journey for you to the next chapter of you life and in turn both our lives as father and son. I picked a beautiful spot by a pond with wildlife galore. Come and enjoy it with me…

I’m sorry your wife wants to move on right now. I can’t imagine how difficult or painful that must be while continuing to combat the effects of parkinson’s on a daily basis. We can and will find a way to provide better for you including living with me in a two bedroom home already outfitted with support bars in the bath and shower and your own bedroom to boot. (I planned it that way when I moved here two years ago,)

You’ve always trusted me to handle complex paperwork for you. When I was younger and there were all sorts of health insurance forms or union documents to read and figure out you always turned to me for help. It was out bonding time together. I loved when you’d trust me because you knew I was smart and I’d get a kick out of seeing you smile like “Oh yeah, I get it now. Thanks!” I never knew it was from the dyslexia you’d grown up with all your life. I enjoyed the trust and you trusted me in turn.

I was proud to be the son of a union factory worker. You worked you way to shop steward by reading and re-reading all of the contracts and union books. You always had a strong sense of right and wrong when it came to the working man and you’d go to bat for them. Some of the best memories I have is going to union hall meetings with all the cigarette smoking and guys yelling at the mic;s in the aisles. You never gave up and you never took a hand out either. I remember more than a few strikes and picket lines too.

I’ve never forgotten where I came from Pops…

I can safely say that after spending more than just a few 24 hours “on the inside” of more than a couple dozen rehabs and psych wards. I fully understand the fear of having your life upended and landing somewhere when you no longer decide what bedtime is or where or when you get to take a walk. It’s scary and I totally get it. That’s why I need you to trust me now and let’s get you someplace safe. Hopefully with me here in Massachusetts. If you’re going to need 24 hour care for medication reminders every three hours, I’m more than willing to do that for you.

I’m glad you called this evening. And I’m even more glad that you acknowledged I was angry but that you were willing to move on. That meant a lot to me. So if you’ll trust me once again to get you to the next step I’m ready when you are.

Your Son, ~R

Emotional Rubber Bands…

Emotional Rubber Bands…

rubber bands, whiplash, herky jerky, it’s all the same when it comes to my family and it simply can’t continue like this. i have to choose not only my mental health over my family but also my physical health as well.

two years without health care is a long time when it comes to reestablishing healthcare especially when it comes to specialists. with my families history of colon and prostrate cancers, the first up was the new GI which started a cascade of #ptsd and #anxiety symptoms.

i did my homework and made sure to bring all of my medical records from the previous medical system to expedite the process and also to show that i was informed and cooperative new patient. the dr.’s extremely knowledgeable which is why i chose him so that’s a good thing. what i hadn’t planned on was the aggressive push for even more medical info when it came to my father…

these days i can relate to how my mother always had a hard time with dr’s and hospitals. it’s all the questioning even though it’s right there in black in white that’s the trigger. no one wants to recall their past when it’s riddled with land mines. it’s a friggin’ war zone and when one goes…they ALL go.

anywho… i had prepped like a good student…four color coded folders for each speciality in case he asked. the g.i. folder was the largest and had every letter, mri, sigmoid, tech notes, xray notes, pcp notes…”do you have the results of your father’s last colonoscopy?” “can you get them?” “you do have power of attorney don’t you?” “these are things you’re legally entitled to you know.” “i’m just trying to take what you provide me and turn it into science.” he says gesturing from outstretched hands at me motioning to random notes onto one sheet of paper because the medical terminal was down… really? no…are you fucking kidding me???

of course he was an hour late and i hit grid lock rush hour traffic right at five thirty, an hour and half just to get out of boston via route nine. it’d be two more hours before i was finally back home. exhausted, not angry or frustrated, just frazzled like shell shock and everything hurt. my stomach, my head, my body, just everything like a spiral…

who knew the next jolt was to hit the very next day. yep, the voicemail from my father asking for help for what i’m guessing may be his final wishes. i mean, i’m compassionate to what he’s going through, but realistic just the same. i mean, it doesn’t change what he’s done but that’s not the point. the point is moving on and still being able to live with myself.

do i have to forgive him? i already had in a way. i mean after our last parting two summers ago, i had already began to do just that, it was what it was and move on. i knew these’s dr’s would be key and i still have three more to fit in by january. oh, and it’s winter which i haven’t driven in for at least thirty years.

yeah, forgot that one. i had to learn how to drive two years ago after being able to walk, subway or taxi anywhere in the city of boston and now i have to drive just to get coffee. i’m not whining on that one, that accomplishment i feel really proud of actually. from finding a driving school to sponsor my road test to the registry for the written, i earned that one.

however…

while i was comfortable with having to make the trade off of country driving over city driving. i hadn’t anticipated the lack of quality specialists here on the cape. the largest and closest healthcare system is the one i’m trying to leave and also doesn’t have the best track record. all my neighbors do the same so i’m not alone in how most of rural mass. thinks about specialist healthcare which is kind of a shame. boston is a great teaching hub and it certainly has innovation on its side. what it does lack though is a broader network of care for all regions and especially those beyond just the greater boston area.

switching from as needed to daily medication was a huge leap for me but it’s necessary if i have to rely on a car for everything. when i lived in the city if i had to run out for coffee or a sandwich and cat food. even in the worst weather or worst of winter colds, i could usually muster a coat maybe some sunglasses winter boots and headphones for a block and a half to the corner bodega. fun little place on the edge of villa victoria called Casa Cuong, just the basics in it’s two small yet well stocked aisles… i can recall the rush of hot air from the ice cream coolers when you open the door in winter like it’s just outside my front door now.

i loved the juxtaposition of corners here in the south end. Casa Cuong with its treasure trove of goya, kix, friskies and klondike bars on one corner. venti iced coffee, turkey wrap, yogurt w/granola and peppermint bark at Starbucks on the other. total time out and back was about twenty minutes maybe thirty when dressing for winter.

nowadays twenty minutes seems like a luxury. a luxury in that it could take me twenty minutes just to get through tying my shoes and getting on some jeans and a shirt if i’m real lucky. i’m winded at just about anything so i have to stop about every fifteen minutes to sit, catch my breath, take the next incremental step and so forth.

you get the gist…

i miss the city for a lot of reasons chief among them is it was my home for my entire adult life until 2016. there’s not an inch of of it i can’t recall and that’s a huge blessing on my journey.

if there’s one thing i’ve learned while emerging from this self imposed cocoon it’s that new memories are going to be important if i’m ever going to make that final hard tack in my life that i’ve always dreamed of. the type where after a vigorous and difficult struggle through wave after wave, you’ve somehow managed turn face first into the wind and you’re no longer concerned with what’s behind you only with what’s ahead and ensuring that horizon as as clear as glass.

i can’t keep having these emotional rubber bands from a toxic family keep whipping me all over the place. it’s too much. i don’t wish him or them any ill will. i just need to focus on me before i end up not being able to care for myself.

when i think of the health issues that run in our family it’s crucial that i get through these next three to four dr. appointments, not including things like labs, colonoscopies, MRI’s etc. etc.

i always knew there’d be stress once i lined up these appointments, it’s the impact from the driving that i hadn’t planned for. toss in my father’s voicemail and that was that…face plant into bed for next five days.

it’s slow going and while i did manage to have an “up day” for thanksgiving, i am sidelined by the gritty scratchy eye thing again. that and the whole body still hurts which means the auto-immune system is in over drive and does it suck. mostly it sucks because i know i’m still a long way from any relief. psoriatic arthritis? maybe, all of the men on my father’s side have ended up in wheel chairs so there’s that… ankylosing spondylitis? that’s another maybe except with my father’s diagnosis in 2016 there is a genetic component to consider or rule out. after this many years neither is palatable but at least there’s a regimen to follow, a plan, something to hang your hat on each night and finally sleep with some peace of mind.

the mind, body and gut connection isn’t lost on me. while mindfulness, meditation and yoga can be helpful. i’m at the stage where we need to move to the next step in the process. living in thirty minute increments of effort isn’t normal for someone my age and yes that’s depressing and yes i know that doesn’t help. look up #IBS, #PA or #AS and they share many of the same symptoms including #depression and #anxiety. that’s good and bad. good in that one medication or plan could solve more than one issue. bad in that it takes all of those specialties to test and agree on who the lucky winner is.

the blinds are open again and there are plenty of leftovers lucky me. during the two days i had energy i was pushing through all of my batch cooking and stocking up the freezer with things like homemade chicken soup and stock. two staples for any gluten free and/or anti-inflammation diet. i made another roaster for thanksgiving day and i’ll throw that in the slow cooker for shredded chicken. an afternoon with the kitchenaid and foodsaver should knock out a couple 1lb bags which are perfect for quick meals.

my neighbor who’s recovering from breast cancer says she’s grateful for the up days too. we both joke about the mornings when you wake up and you just know your body isn’t going to hate you that day and you zoom through laundry, cooking, mail, a shower and collapse.

tomorrow supposed to be sunny and warmer than the past two days of single digit wind chills. the plan is to finish the leaves we all got clobbered with here in new england. one day the leaves were on all the trees and then two back to back wind storms mean everyone was buried all at once.

weather looks good? check. leaf blower batteries charged? check. your body still hates you in the morning? check check and triple check.

tomorrow after the leaves?

why i gave up facebook…

 

%d bloggers like this: