Category: Anxiety

Living With Anxiety During Covid…

Living With Anxiety During Covid…

I’ve been dreading checking in here because I truly don’t know where to begin. Like every one else’s story there’s pre-covid and then there’s whatever it is we’re all calling where we all are right now.

The journey continues on all fronts. Still getting my bearings after landing here on the south coast after a lifetime in Boston. Living and working in Boston’s Back Bay & South End are some of the best memories of my life. And therein lies the rub…

I arrived in Boston in the early 80’s fresh from L.A and landed in a shared apartment in Allston. Seven of us in some weird configuration of a three bedroom apartment on Kelton. We were L.A. kids winging it month to month using old pizza boxes to sled down the street during our first winter. My roommates worked in retail or coffee shops & salons and we all made enough to cover rent as well as n active nightlife in Kenmore Square.

I’ll visit my twenties another time though. Tonight is just a check in. A way to resume writing about what’s going on during this truly unprecedented time in all of our lives.

There’s been some clarity and progress in putting this puzzle together. And that’s definitely what recovering from childhood trauma feels like even after all these years. There’s no time table to when “it” all starts making sense. There’s no time table on when you’ll find the beginning of your own personal thread. You just keep working at them and eventually the burden is supposed to lift…right riiight?

Has my mental health improved? Yes. Has that been because of access to direct one on one in person counseling here on the South Coast of Massachusetts? Definitely not. The same can be said for routine medical care, a topic covered in previous posts and too painful to revisit. (I re-read one this evening and it gutted me. Funny how making progress works.)

I’m a party of one and I’m also among one of Covid’s scarier demographics. That is male over the age of 50 with at least 2-3 underlying health risks. Nothing like a pandemic to bring things into focus when it comes to “getting your affairs in order”. No no no, not that and not yet.

What I hope to write about is my putting all my legal and health paperwork in order. Things like trusts, wills, DNR’s etc. We all think we’ll complete them but in reality we just ignore it until a pandemic changes that for you. If I’m going to avoid one of the scariest things I could ever imagine happening to me at the end of life than I better get started. I’m not dying alone in a hospital and that’s that.

That means getting back to not only a daily routine of cooking, cleaning, litter boxes, mowing the lawn, cleaning the gutters and on and on as well as and tackling more complex things like finding a notary during #covid. I’ve never had to file these things before and don’t make it a habit to seek out city offices. The #anxiety and thought of that pre-covid was already sky high. Add to the mix having to navigate public spaces where the use of masks by ‘other’ people is questionable at best and it’s downright terrifying.

It’s time to tackle the stack of childhood photos I’ve been avoiding yet carrying around a box all these years, in hopes that I can resolve the other side of my story. The story of my Mother through photos. Back to 1960’s Los Angeles and the Hollywood of the 1970’s & 80’s. Back to where it all began no matter how painful it may be and regardless if we’re in the middle of a pandemic.

So. I may be a little banged up and bruised up along the way but I’m still standing. I’d lost hope there for a bit but the #MeToo movement picked me up and gave me a reason to share my story. This is a continuation of that conversation with myself.

I gave up drinking 15 years ago  and I can honestly say that nothing has been harder than learning how to live with clinically diagnosed #anxiety in the time of #covid19.

If you’re struggling with the fallout from childhood sexual abuse please know that it does get better. If you have access to Telehealth I encourage you to reach out to your providers as soon as you can.

Telehealth has been a life saver. It’s allowed me to reconnect with a previous therapist from Boston, one I had to give up due to a grueling drive, but thanks to FaceTime I finally feel connected again.

It’s been awhile…

It’s been awhile…

Fall has always been my kind of season. When I moved from L.A. in the 80’s I’d never experienced all four seasons before. That magical low humidity high clarity time of year, the lower angle of the sun and change is in the air.

I had a roofer come over for an estimate the other day and as I met him coming from the yard he said “Holy cow, did you see the two great blue herons? Like literally right there?!?” Uh, yep…they’re kinda always…around??? And it’s true. I’m blessed with proximity to nature’s ultimate HD experience day in and day out! I just chuckle and we watch the last one give us the stink eye for spoiling his fishing before taking a swooping flight around the pond.

_DSC5221-1Update: Right after this post look who dropped by for a visit.

Let’s see… Anxiety, check. PTSD and its related derivatives, check. Progress on processing early childhood trauma and its context to human connections today, major check.

Going through the #MeToo movement via Twitter, Instagram & Facebook has been an eye opening experience. On the one hand I have greater awareness that I’m not alone. I’ve also learned there’s a lot more layers of complexity out there when it comes to the over all topic of “Childhood Trauma” within the sexual abuse category alone. I still haven’t found anyone who’s had my personal experience but that’s okay.

I won’t get into categories or descriptions regarding the topic either because it doesn’t really matter. No ‘one’ person’s story is ‘less than’ anyone else’s. To take that a step further. None of our lives or stories are any ‘less than’ each others. When I think of things in those terms I don’t get stuck living ‘in the trauma’ and find it easier to live in a solution.

Growing up on my grandparents farm in Arizona meant everyone was exposed to geology. Whether it was something like the International Tucson Gem & Mineral Show or even The Grand Canyon itself, you kiiinda pretty much had a clue that the earth has been around for quite awhile. Sorry Ark Experience folks but no…uh uh. Not buying it. Hence my obsession visualizing and trying to find a way to express my personal timeline in some manner. I have a zillion childhood photos of a very unique time in Los Angeles I just gotta figure something out. Watercolor, mixed media, who knows.

Think about it. In the longevity of mammals we’re literally shot out into the world in 16-18 years and then, with fingers crossed, we’re expected to somehow stick the landing and not land on our face. That’s a preeetty narrow window of time when your little childhood sponge of a brain is literally sucking up every image, sound, scent, feeling, phrase, touch, lighting angle, fabric and surface texture along the way. Assuming you find a decent career or living after all that, then the next 30 years are kinda on auto pilot. That’s a pretty big if…

Recently I reconnected with an old Hollywood High School friend and it’s made a difference in moving forward. I’m trying to keep using FaceTime so that it pushes me to keep up with things around the house. The joints had me down most of the summer and given the mosquito issues it’s probably just as well I didn’t get to work in the yard as much as usual. I can’t get to a gym and keeping a 1c yard cleared, mowed, trimmed and stacked with wood is quite a bit.

I took some time off from ‘processing’ the tough stuff from my childhood. Not because I let it go or found any sort of resolution, but because some of it sorta just resolved itself. #MeToo got me in touch with owning and living my truth. Now it’s time to live what’s next rather than keep treading water and wondering why I’m still stuck. If you’re reliving the trauma over and over via social media. It makes it harder to transition to a more positive affirming life approach and that’s pretty important to me.

I closed my FB account and definitely don’t miss it one bit. I’ve unfollowed a lot of news media outlets/hosts from Twitter and Instagram. I use Tweetdeck because I can put in filters, which I cannot encourage strongly enough if you want maintain some sense of sanity. Total lifesaver during the FratBro confirmation hearings for example. Definitely didn’t need those kinda triggers in my life.

Rambling, I know.

My whole reason for firing up this post was because I spoke with my Dad today. I never thought I’d hear his voice again to be perfectly honest. Not in a mean way. Just in a way that I really didn’t have a clear idea of just how bad he was the last time we spoke. I make leeway that he’s old and can’t stick to any one topic for long so I’ve always just let him go from one to the other. Today was no different…almost.

He left a voicemail last Friday but didn’t say anything other than. “No I don’t want to leave a message, thank you.” and hung up. I’m guessing at 79 with parkinson’s he thought the VM prompt was a real person and more a result of old age not dementia. Another side effect of old age is answering your phone no matter where you are because you’re old and you’ll do it if you damn well want to. Lol.

When he answered there were some musical instrument sounds in the background. It’d fade in and out, sometimes it was quiet on the line while he moved around. I’ve learned not to revisit any past phone conversations and I can sense he appreciates that. I casually ask how things are and let him go from there.

Definitely not happy he can’t drive anymore but seems to understand it’s his parkinson’s that make it unsafe. “Can you believe it? You don’t do good on one test and boom, no more car. One, ONE test, sheesh.” I commiserate and support the absurdity, he slightly chuckles and moves on.

His reaching out to me is his own way of trying to be fatherly, I can only guess, with him it’s never been clear. The conversation went on for awhile as he discussed each physical change that has now limited movement. More of the ‘gee whiz’ exclamations and how he’s fighting having to use a wheelchair and how he definitely doesn’t want to be in a home. He wasn’t angry but logical and accepting of the fact that of All the conditions he’s been through Parkinson’s is the worst. He says worse than going through both Prostrate & Colon Cancer which is ming boggling.

The hardest part of today’s call was hearing the constant jangle on his phone while his voice was sort of far away. He didn’t want to admit it but his admission earlier of having to wear a bracelet now and with his left hand being the most prone to shaking, it all eventually made sense. He’s left handed and he was trying to use that hand to hold the phone hence the rattling bracelet. Sigh…(that kinda really hit home tbh)

So. Where am I with all this shit? Tread lightly I suppose. Even though he’s at the root of most of if not all my childhood trauma. I want to be able to look at my childhood photos again and keep the good memories like a normal person. Put them in actual frames, on the mantle or bookcase and not keep living the life of a ghost like I have.

The question of forgiveness hasn’t been resolved but it doesn’t have to…for now. For now, I just gotta keep putting one foot in front of the other and be okay with not being okay. 

It’s Fall in New England, time to get that camera out even if I feel like shit! And I own that in all of it’s profane positivity!

 

Getting closer…

Getting closer…

#anxiety, #depression, #cptsd, #childhoodtrauma, #childhoodsexualabuse – these are the things i still carry as an adult. they don’t go away. they don’t magically disappear when those around us can’t bear us as we are, we have to fight allll the underlying symptoms and pretend things are normal when they’re anything but…

i reached out to a mental health alliance three weeks ago for help. they did an extensive intake over the phone and i disclosed my sexual abuse as a young boy in hope of finding a trauma informed therapist.

everything seemed to go well. the intake person was nice enough. paused when she needed to let me get my muddle thoughts out. reassured when she could and made me feel like i could trust her. after confirming all the necessary personal, medical and insurance info i was told the director would contact me and then i’d hear from a therapist they felt ‘could’ be a good match. (meaning after that conversation the director would have a better sense of who to match me with but the ultimate connection would be between myself and the therapist.)

that was three weeks ago and i’m still without mental healthcare.

i’m losing the will to keep getting back up. over and over and over again…i’m worn out, tired, defeated and fearful.

when you’re told from your earliest memories to “be a man, it’s not that bad.” or “stop crying, you’re bigger than that” or “oh stop being a baby, sheesh.”

i wasn’t a child in anyone’s responsible form of care. i was just an annoyance. nothing more than a pet. something you just make sure there’s water in their bowl, food in their dish and once and awhile you let them out to take a piss on the lawn if they bawl loud enough…

i’m alone. i’m scared. i’m not sure of what’s next.

suicide? dunno. one time i tried pills. i swallowed the whole bottle of Restoril that i’d just filled. 30 30mg’s should do it. my eyes began to feel heavy and i did doze in and out a few times. barren apartment, my first, hard futon on a hardwood floor, lighting from the outside courtyard coming through the blinds…that’s the last thing i remember.

my apartment was within walking distance of a major hospital area near Fenway Park. walk out of the courtyard take a right and 5 minutes later you’d be in the lobby of their emergency room. it seems i was on auto-pilot because that’s the only way i could have gotten there.

my head was pounding, awful taste in my mouth, black stains all over my hospital gown and arms. it wouldn’t be until much later that i’d see my reflection in a mirror where my teeth had been blackened by them charcoaling me. stains down my chin indicate either i wasn’t conscious enough to aid in drinking it or they just wanted to get as much of it in me as possible and hope for the best.

this was my first inpatient stay in a mental hospital. later i’d learn the term was ‘feet first’ versus signing yourself in or someone else had ‘sectioned’ you. feet first referring to being wheeled in on a gurney…

i was there for 7 days, long by health insurance standards, not long enough by mine but there would be many more in-patient stays to come…

without an external support system (no friends or family) i had to live off clothes others gave me when they left or had extras of. it was a humbling yet lonely experience. certainly not one that got me on the road to figuring anything out anyway. i was only 30 and didn’t know how to explain what was going on inside of me.

they’re goal is to just stabilize you with meds give you a treatment ‘plan’ and you’re on your own after you’re out the door. no clean hand off to a psych for meds or a therapist for skills. nope. just some SSRI’s du jour and “Best of luck, you’ll do fine, keep up the great work!” and all the rest of the platitudes i assume the train them to say.

i suppose pills were less dramatic than the 15th floor balcony ledge in downtown boston some years later. another time i’d fallen through the cracks and felt like i had no way out or anyone to help me.

who knows why i chose a hotel balcony given that i have an extreme fear of heights. all i remember is climbing over the rail and facing outward but gripping the railing so hard i couldn’t feel my hands…

the side of the hotel i was on was well lit from below but i hadn’t noticed any sirens or lights. the door opened with what looked like 4 firemen and a hotel worker. who knows why fate works out the way it does but the hotel worker turned out to be someone i know as a friend of friend kind of thing. shame and guilt immediately came over me, then panic…

“Rob…it’s me Kyle, please don’t do this. Just stay with me and let’s talk okay?”

my eyes met his and i crumbled into sobbing tears while a phalanx of arms and gear lurch me back into the hotel room…another ‘feet first’ visit back to the same hospital.

therapists always ask me if i feel safe or have plans to kill myself. it’s a tricky question because the truth is i always, always have a plan on stand by. anyone who’s ever had to keep suicide in their back pocket as a way out of pain always always has a plan.

i try and be honest i try and trust but i never fully commit. i’ve never met a therapist or single friend who’d stay around long enough to hear my story so that i ‘could’ in fact trust them. trust…my achilles heel.

it’s tuesday night June 25th and i had a really hard time driving into boston to see my MD for meds yesterday. the prescription is all screwed up which means multiple phone calls to him, the pharmacy, medicare, aetna and so forth. all of those things drain a person with #Anxiety from #CPTSD so quickly and so deeply it takes days or weeks to bounce back from that stuff.

and that’s why i’m tired of, well, everything. tired of being let down. tired of people saying they’ll call back and don’t. tired of people saying they’ll come visit me and they don’t.

tired of being invisible and of no consequence…

i don’t have any answers other than i know i’m not to blame for things or thought processes i can’t control. when you’ve done all you can to reach out and say “HELP ME” and nothing comes back to you from the echo chamber of life what else are you left with besides…why bother?

no i don’t need a wellness check, not tonight anyway. just know that this is all being written in real time with real names details and timeframes. full and complete honesty is they only comforting characteristic i’ve come to value in this life, it’s the only way i know how to navigate people and it’s also the source of my greatest pain. when all you know how to be is honest and authentic, when people cast you aside your brain doesn’t know how to process that except for making yourself the failure.

this house is a trap and i need to leave here if i can. if i can’t find a solution soon than those ‘plans’ will definitely become more of a reality even though i really don’t want that to happen.

even if i don’t want that to happen – there’s still only so much pain a person can take in life before there’s just no more room. your brain, body and emotional capacity starts to push back and say “no…not anymore…yeah i’m sure…i’m done.”

 

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.

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 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

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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

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…

 

barricading complete…

barricading complete…

the blinds are drawn and taped, latches latched, door locks checked and triple checked, i’ve even cut the cords on the blinds so that i can’t raise them unless…well, unless…

facebook and instagram accounts have been deactivated, only twitter and this blog remain.

it’s never been this bad before so i’m in uncharted territory here. i don’t know how else to protect myself other than to keep everyone as far away from me as possible. depression and anxiety have a complete hold on me right now, perhaps it’s just another waiting game. a game i’m tired of playing…

i need to lose track of time…to not be conscious of where i am in my timeline is the safest place for me right now. it’s too painful otherwise. the holidays are usually bad enough, and this isn’t just holiday depression of course, so with my father’s recent voicemail it’s really muddied the waters.

december 21st is my sisters birthday and i still miss her. she was murdered on july 4th and my father’s birthday is groundhog’s day. every holiday was a nightmare as children for my sister and i. with my mother’s own #anxiety #agoraphobia and #ptsd challenges it made it nearly impossible to ever make it to someone house for a simple dinner. there was always a meltdown of some sort so we either never made it into the car and on our way anywhere or we’d last less than an hour before she had to go home. not just her, all of us.

birthday’s and most celebrations were forbidden, either for some manufactured reason such as “oh it’s just another day, it’s not a big deal.” to outright bans because she wanted to be a jehova’s witness. why not, the catholic church had failed her so she would follow any religion that had her attention.

it was so heartbreaking to see my sister cry during these times. not understanding why her special day was “no big deal” and to not even have christmas celebrated…i ache now just thinking of those days…

so. this is why i clear everything and everyone off the calendar from october to may. this year i thought i’d have peace but it wasn’t meant to be…

between good quality outdoor solar lights, auto sensing security lights with a video doorbell and indoor home automation lighting schedules, everything looks perfectly normal…from the outside.

it’s a reflection of me as a person i suppose. everything all nice and tidy on the outside and a crumbling quivering mess inside.

i don’t know what i’m saying other than i’m preparing for whatever form of communication i’ll get when it’s my father’s time…and it will hurt. deeper than anything i’ve ever known. not because of love but because of the loss at a chance to experience what it would have meant for a father and son bond when this time comes.

i’ll grieve now so that i’m better prepared for when the news does arrive. it’s a natural reflex when it comes to my family. never let them see you cry because they love to prey on the vulnerable. in this way i can say with safety and confidence that i don’t care to know what his final wishes were nor does anyone owe me anything. keep what you want just leave me in peace.

 

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