My house is a mess now, but that’s because I’m downsizing in anticipation of second retirement in September. I pulled a bunch of stuff out from under the basement steps and began sorting through it a couple weeks ago, giving some to recycling, some to Goodwill, and some to the Greensburg Historical Society. I’m still going through it, and I’ll be distributing stuff around again and again over the coming weeks. But it left me with a lot of empty space…enough that today I was able to move stuff out of the storage room and close it. That’s a monthly rent off my back now.

I told the lady at the storage place why I was downsizing and with a smile she told me to enjoy my retirement “this time.”

This is a process I expect to take several months…I’ll be able to work on it more energetically when I don’t have days at the office…but at the end of it I want the house to be a lot lighter in weight than it’s been. Because I want my life to be lighter in weight going forward.

This is good, but let me add some detail specific to me at this point.

#1: Yes…all this. I thought it was just about having tremors. But no…there are entire subsystems that are affected by not having enough dopamine. I actually don’t have much trouble at all with tremors, and that almost exclusively on my left hand. Which is good because my right hand is my drawing hand and I’m not ready to lose that yet. It can be a challenge now though, when I need to steady something with Both hands. Like (sigh) a camera.

#2: The feedback I get now and then is mostly about random, slight, but noticeable speech difficulties. Sometimes brain and mouth don’t want to cooperate. As to the face, I think it’s mostly just resting grumpy old man face. When I’m talking to you it’s pretty lively.

#3: This is the big one. People I’ve only socialized with online don’t see any of this. Anyone who’s had my physical presence probably doesn’t notice much of this at all. Living with it is all this. Except for pain. I am in no pain. Thankfully. A little muscle stiffness is all, and so far that isn’t bad.

As far as anxiety and depression…I’m a gay man who came out to himself in 1971, but to be brutally honest I knew when I was 14, I just lived in denial until that moment in December 1971. Anxiety is something a gay guy just lives with. Also any kid, gay or straight, who was raised in a very religious household, or one with a lot of family drama. I grew up with a bunch of that too. Anxiety is an old friend.

I’ve no digestive issues except I notice lately I’m losing a little more of my appetite, which has always been slight anyway, as anyone who’s ever dined out with me and seen me not touch half of what’s on my plate can verify. But I could use losing a few inches off the waistline.

But the rest of that…yeah. Fatigue. It’s the worst. So far. Brain fog comes and goes, but focus, concentration, is harder to accomplish now. Which I need at work, and my drafting table…

…and for photography. I have taken a pretty well stocked camera kit with me on various road trips and not touched any of it, over and over and Over again. I did get something out of me on my recent trips to Sunbury, but I was hoping to get more out when I went to Greensburg last week and my cameras remained untouched the entire time. I had to apologize to them when I unpacked the car. It’s really starting to distress me.

I’ve had insomnia for decades, I’ve learned to work around it, so I really can’t say Parkinson’s is making it any worse. I don’t consider vivid dreams a problem. I have very few nightmares. Mostly they’re just strange and kinda fun. Sometimes they give me story ideas.

#4: Yes. Yes. Yes.

#5: My friends and co-workers are all good people who don’t need telling. I have wonderful neighbors on my little Baltimore rowhouse street. I feel at ease with all of you. As for the rest of humanity…I think Sartre was mostly right, but the exceptions make dealing with it worthwhile. I try to be patient and remember that I can be pretty annoying too.

I am not asking for understanding, but curiosity. Stay curious. If you have that mindset then you know how I’m dealing with this. It’s an interesting puzzle. I’m learning more about human neurology probably than I otherwise would have.

#6: Yeah…

…fatigue, brain fog, balance problems. But all that didn’t start until a few hours after I got up. In that little window of time I got some stuff done around the house, working off a long term project of downsizing, sorting, filing. I’m really not seeing the benefit from the new medication the neurologist was telling me I’d see. There is some, but it’s disappointing. I have a follow-up appointment with him first week in August. We’ll talk.

I dropped off a bunch of stuff with the Greensburg Historical Society last Thursday, but there is more I need to uncover here. Plus, I am gathering stuff to donate to Goodwill. The sad truth is selling, or even giving away stuff is difficult. There is a “Buy Nothing Hampden” page here I’ve had some success with in the past, but lately no bites. I took a bunch of things to recycling knowing that at least some of it can become something new and not just end up in a landfill. The stuff I take to Goodwill can find another home. But I need energy to do all this and Parkinson’s, plus old age too I’m sure, leaves me with very little.

I’ve been thinking it over and I suppose this diagnosis of Parkinson’s seems sudden to most of my friends. Pretty sure not to my brother in California, who has seen me struggling at his house with fatigue and balance and memory. My co-workers and project leads have seen me struggle to get words out when I suddenly can’t put a sentence together, because brain and mouth momentarily stop cooperating. More distressingly is a loss of mental focus that I was hoping the meds would improve. But since most of my socializing these days is online, most of my friends and classmates wouldn’t have seen any of this building for the past couple years. And it’s been a gradual thing, punctuated by a few sudden episodes of fail.

I’m really not in a bad way now, and probably won’t be for quite some time; just not the fully functional me I used to be, even accounting for age. It’s mostly subtle…until for a brief few moments it isn’t. If the diagnosis seems sudden to you, rest assured it is not to me, or to anyone who has had my physical presence for more then a day or two; something is a bit off with Bruce.

I am grateful for the diagnosis because it gave me clarity, Finally, as to what was happening to me, and something to take the measure of, and try to manage.

But there is so much more I need to do. I have artwork I want to get out. It’s going to be harder than I’d anticipated, and I’m not going to get everything done I want to.

Please Stand By…

I’m in Greensburg Pennsylvania presently, the ancestral home of my mom’s side of my gene threads. I used to post these travelogs often here on my blog in real time, but I don’t anymore because thieves and burglars might be listening in and see an opportunity to break into my house and steal things; and never mind I always have neighbors and security cameras watching and my alarms set. It’s the world we live in now. But I’m getting tired of that, and I think I’m going to post about my travels here more often.

I’m here in Greensburg to drop some family history I inherited after mom passed away. Family bibles with birthdates, death dates, and marriages recorded in them, and lots and Lots of old family photos and random artifacts. I’ve given it all to the Greensburg Historical Society. I still have family living in the area I suppose, but I’m completely estranged from them because of how mean they were to my mom. The only person I’m still close to on that side is mom’s cousin, who stood by her all throughout her life and whatever the family drama was. But like mom, she doesn’t live here anymore, and hasn’t for decades.

As I type these words I suddenly realize that, like mom, and her mom, mom’s cousin never had any interest in returning to Greensburg after they left, long, long ago. Mom took me here often when I was a kid for visits, but in retrospect that was mostly for her mom’s benefit, to visit old friends and the one son she still had living nearby. We would stay with a distant relative, whose relationship to mom’s family I’m still uncertain of. I still have fond memories of those visits, but that was before the family drama really started touching me.

When I came to the Greensburg Historical Society the other day to drop things off, they gave me the tour of their collection so far. The people working here are very nice folks, history nerds, and so friendly it did my heart good because my feelings toward this place are mixed now at best. I’m writing this to my blog just to put this one more little message in a bottle out here for you because the collection of German artifacts they have surprised me, and then made my heart ache in a different way from the ache I expected to have being here. I always knew in the back of my mind the German influence here in central Pennsylvania, but seeing it all collected together and representing a significant part of the history of this place startled me.

There was a magnificent old bible, one of those big heavy embossed leather bibles with heavy metal clasps to close it, well preserved in a glass display case, and it was in German. There were school books in German, travel books, written histories of Pennsylvania and Westmoreland County. Stories of the people who came here, made a life here, in the language of their homeland. The folks who work here said they’d brought a translator in to help with cataloging all that. And I immediately  thought of you, and wished you were there with me just then, because you could have looked all that over and told them things about it that maybe they didn’t know. And I began aching for a life I never had a chance to have, and which probably one you wouldn’t have wanted with me anyway.  The old dream that will never completely die, but that becomes something to just acknowledge, like getting old.

I’m letting go of all that family history now because the Parkinson’s diagnosis leaves me with a new perspective. You always kept telling me toward the end of it, that I needed to let go of the past. Live in the present you said, using the word as a double entendre.  I wouldn’t exactly call Parkinson’s a present, but it works well enough as a mile marker. I can let go of a lot of stuff I’ve carried with me since mom died, because I was never much a part of it anyway, and I am going to need to carefully manage the energy I have left to me. I’m sure at some point the people in my family here became aware that mom’s son by the father they all despised is gay, but they’d have kept me at arms length anyway because I was his son and the sins of the father will always convey to the son if he’s the only convenient target.

Mom loved me, I’ve never doubted that, but she’s gone now and my connection to the others was tenuous at best because that was how they wanted it ultimately, and I came to accept it. The life of the only child teaches him how to rely on himself. The only one who took an interest in me was the one who left Greensburg for California and he never went back either. How I’ve wished I could have grown up closer to him. But then I would never have met you.

The trick in letting go of things is knowing what parts of that life you lived made you the person you are, what you need to honor and respect, for better or worse, and what was just the back story, not your story.

I really needed to get some more cat food, in case Walter comes for a visit (he didn’t last night). And cookies. But talking even a short walk is risky in this heat, and especially for someone my age. I decided to wait until after sundown and the temperature dropped to at least 95. One of the perks of living where I do is there is a really good Giant Food store that’s not more than a 10-15 minute walk from my front door.

Out on the front porch it was still like an oven but not so intense that I didn’t think I could manage it. So I grabbed a small canvas shopping bag and headed out. All I needed was a few cans of cat food to tide me over until I could drive out to Cockeysville and the Pet Smart there. So I wouldn’t be carrying a lot back home.

What I hadn’t figured into this was that the intense heat of the last couple days had really baked the pavements and everything else in my environment, such that even if the sun wasn’t bearing down on me and the sky was getting dark, the heat was rising up at me from the ground all around me.

But I made it. I have food (and cookies). Probably not venturing out again until Monday when this heat wave is supposedly scheduled to end.

Oh yes…I went on a crash diet. After I reconnected with my high school crush after 30-something years. The pain of holding those Oh So Nice bluejeans in my hands just now was almost as bad as the memories they drew out of me.

So…recently my storage room raised its rent on me, which still isn’t much but I’d like to get it off me before I second-retire this coming September. It shouldn’t be too difficult with all the stuff I’ve decided I don’t need to keep anymore going to recycling. But I have seasonal stuff I still need a place for. Garden stuff for spring and summer, Halloween stuff for fall. My Christmas stuff has a place in the basement, but I might get off a bunch of that too since I don’t see myself putting up a tree here at Casa del Garrett (East) anymore. I’d rather spend the holidays in California with that side of my family now.

I have two cedar chests, one that’s been mine since I was a kid, that allegedly my maternal grandfather built himself. The other a very nice old Lane I inherited from mom. What’s in both of those I think I can let go of, and repurpose them for the seasonal stuff. I also have two old steamer chests I inherited that are allegedly from the trip from England to America mom’s side of the family took when they came here to live. One of those is in use for storing bedding. The other I have completely forgotten what’s inside of it, which is a good indicator that whatever it is I don’t need to keep it.

The fact is I don’t recall much of what’s in the two cedar chests and so just now I opened the one I used to have in my teenage bedroom, only to discover it packed full of shirts and bluejeans I cannot get into anymore, that I could as recently as 2008 – 2016. Those, uncoincidentally, were the years I’d reconnected with my high school crush and I went on a crash diet after he asked for a photo and I was too embarrassed to show him all of me. For about eight years after that I felt that I looked pretty cute. We had our nuclear war in 2016 and for some reason I gained all that weight back.

So I suppose I was saving those shirts and bluejeans on the off chance my waistline would drop back down to 30-31 inches. But that’s unlikely now. A shame because I thought I looked pretty nice in them once upon a time. You get that slight male hourglass (which I define as having a waistline that’s visibly narrower than your hips and chest) and a lot of things look good on you that Really Don’t if you don’t got it. All the low rise hip hugging bluejeans I just discovered in that cedar chest for example.

It all goes to one of those clothing bin drop-offs I see around here.

Sigh.

Been a while since I updated my blog but don’t think that means I’m bored with it. Far from it given how unpleasant commercial social media has become. But the Parkinson’s diagnosis has thrown me for more of a loop than I’d originally thought (that happens) and I’ve been engaged in a process of downsizing and letting go. I’ve taken several large storage containers full of stuff I’ve saved for nostalgia value to recycling because I’m feeling now like that past I had, while valuable and important, is not something I need to keep as close anymore, if I’m to spend a few final years of my life in peace and serenity. And adventure.

It seems to me now that there is a lot I should just let go of, so I can be me, and not as much a replay of the me I was once. Some of it I will never let go of, because it made me the person I am today. But I don’t need the details of my past as much as I’d thought I would. Those 16 and Tiger Beat magazines I saved to remind me of the closeted gay teenybopper I once was, I can send to recycling and let the paper they were made of become something new, just as I can finally become something more than everything I used to be. There is a saying that’s particularly relevant to gay guys my age and my generation, to the effect that the task before us is to remove everything about us we had to become in order to survive, so we can finally be our authentic selves; the persons we were always meant to be, and would have been if not for all the hate we had to endure. And I have always said there is no such thing as growing up, but only growing. I think that diagnosis of Parkinson’s has given me some perspective. I am letting go of a lot of stuff, so I can grow, while I still have time to grow. Before I become a prisoner inside my own body.

More later…

At some point, either while I was packing for my December trip to California, or during my train ride there, or while I was there, I either misplaced or lost my passport. And it’s been driving me nuts this whole time, not even being able to remember if I actually Did pack it, or when it went missing during the trip. It’s like a black hole in my memory. If you’ve ever experienced anything like it you know how disturbing it is.

I’ve been mostly assuming it was stolen out of my luggage while traveling, but something that argues against that is it would have been in the same luggage pocket where I also had $200 in cash for miscellaneous trip expenses, and all that money, less what I spent, made it to California. I just can’t remember if the passport did or not, or was even in my luggage at that time. I remember unpacking when I got to my brother’s house, but I don’t remember if I saw or did anything with the passport. What I do remember is when I packed for my return home I looked for the passport, could not find it anywhere, and assumed I must have left it at home. But when I got back home I checked the safe for it and it wasn’t there.

I looked everywhere in the house for it after that, and began to panic when I could not find it, and worse, could not remember what I did with it while packing for the trip, or during the trip, or after the trip. I remembered taking it out of the safe while considering whether to take it with me because of all the ICE activity happening just then, and thinking I might need it for identification. But I kept drawing a complete blank as to whether or not I actually packed it along. It was maddening because I know I would have been careful about what I did with it it and yet I could remember nothing about what I did with it.

For weeks after returning from California, right up until last Wednesday while I was packing to go visit a friend in Sunbury Pennsylvania, I kept revisiting all the places in my house that I searched, hoping to find it in some nook or cranny I’d overlooked, or that it would just magically appear right before my eyes somewhere I’d looked before and hadn’t seen it. I checked every piece of luggage I own for the umpteenth time. I checked my briefcases. I checked all my backpacks, including the ones I plan to give away because I don’t use those anymore. I checked the other safes in the house. I checked my file cabinets. I checked every drawer in the house. Oh…and under the bed.

I asked my brother to double check my bedroom there in his house and he could not find it anywhere I suggested it might be. Which must mean it was stolen on the way out to California. But not the cash too? Nothing made sense, and I could remember nothing.

Since my Parkinson’s diagnosis, which I got finally some months after the December trip, I’ve been wondering if the Parkinson’s brain fog hasn’t played a part in all this.

So I felt that I had to tell the Feds that I’d either lost my passport, or it was stolen, and get a replacement. I didn’t want my passport being used for crime, so the Feds needed to know I didn’t have it.

Reporting it lost or stolen was easy-ish. I got online and filled out a form. But where it asked if it was stolen or lost I had to say I could not say. Maybe it was lost somewhere or maybe someone stole it while I was on the train, or while my luggage was in the luggage room in the first class lounge in Chicago. Those Amtrak bedrooms don’t lock on the outside, and anyone could have got in and rummaged though my luggage, which I hadn’t locked because I was carrying it with me. A mistake I won’t make again. The form asked when the passport was issued and I did not know because I only copied down its number not its issue or expiration date. Another mistake I won’t make again. I made an awkward guess as to the issue date.

I discovered I could not simply ask for a replacement passport, I had to apply for a new one. So I downloaded the application for a new passport form. I would need to submit it with a birth certificate. And so I came to another difficulty: I’d lost one of my birth certificates too. And once again it was a situation where I could not remember what happened to it, and looking everywhere in the house for it and not finding it.

I think the last time I had it in my hands was when I went to the Maryland DMV to get the Real ID thing on my driver’s license. I might have left it there. But I don’t know. I would have taken a folder of identification things with me, including the passport, and like when I applied for TSA Precheck the person behind the desk just glommed right onto my passport and ignored everything else. Which convinced me that a passport is the gold standard for ID.

Luckily I had two copies of my birth certificate. For some reason mom had ordered two copies and I inherited the second one after she passed away. But the second one, identical to the first one, did not have the notary seal on it, but on a separate California document stapled to it with the notary’s signature. I wasn’t sure that one would be accepted, but I went to the post office with it anyway and the application for a new passport I’d downloaded when I submitted the lost or stolen document.

The lady at the post office looked that other birth certificate over and didn’t throw it back at me so I felt a little relieved. She took another passport photo of me, bundled everything together and I paid the usual, not the expedited service fee, since I mostly wanted it for whenever I needed that gold standard ID, and maybe some possible trips outside the country when I retired a second time.

A couple days later I got an email saying my passport application was being processed and it might take six to eight weeks to arrive. I felt a wave of relief. It was short lived. About a week later I got a letter from the State Department telling me my application was put on hold and I needed to submit a birth certificate and, confusingly, the lost or stolen passport form that I’d submitted digitally on the website.

I found myself thinking the digital submission didn’t take for some reason. But the request for a birth certificate was more troubling. The one I submitted was identical to the one that got me my first passport, but it didn’t have the notary seal directly on it, but was stapled to it on an official document with the notary’s signature. I figured that was that sticking point.

So I looked up what the State Department regarded as a legitimate birth certificate and neither of mine looked anything like the sample on their website. They were both official documents from either the State of California or the hospital I was born at, a “Certificate of Live Birth” (that phrase always creeped me out a bit). But apparently they did not meet the standard. My mom’s birth certificate, which I have, looks exactly like the one on the State Department website: a very ornate thing like something you might frame and put on the wall next to your Employee of the Month Performance Award. (Here is my certificate of Live Birth, and here is my Five Years Without A Sick Day Service Award…) Until I looked it up I had no idea birth certificates were so…official looking. Mine looked something like a W-2.

I had a co-worker who was born at the same hospital I was (small world). He retired but I saw him one afternoon in the Institute cafeteria and asked him if he knew how hard it was to get another copy of a birth certificate from that hospital. He told me the hospital was closed some time ago. It was considered a California heritage site but the building had a fire that destroyed a lot of the interior. Our physical records he said, might have been lost.

I began to despair. I stalled for weeks about going to the California website and at least seeing what I might have to do to get a new copy of my birth certificate. I checked a few places. One thing I saw was if I had a passport that would make the process easy. Swell. I considered waiting until I could get out there with whatever documentation I had, Real ID driver’s license, past tax forms, mortgage statements, the old passport with holes in it, anything that might help, and throw myself on the mercy of the bureaucracy.

It was getting scary. In this day and age of Trump/ICE if I’m asked suddenly to prove I’m a citizen, how do I do it without either a passport or birth certificate? That fear was why I’d thought to take the passport with me to California last December in the first place.

This whole thing was severely stressing me out for weeks. Not just that the only ID I had now was my Real ID driver’s license, which I kept hearing was not good enough for Trump’s goons, but also that I could NOT remember what had happened to either my passport or that birth certificate that got me the first passport. And now I didn’t even have the other one because it had been sent to the State Department which it seemed didn’t like it.

Every time I began gnawing at it I would stress myself into a state of despair. It was the perfect storm of executive disfunction: having an array of paths to take, none of which I liked. All I did was stress every time I tried to think my way out of it.

So I just sat on it for weeks.

Last Wednesday I began packing for a trip to Sunbury Pennsylvania to visit a friend, Peterson Toscano, and maybe get my photographic eye opened again because Sunbury always gives my cameras something to love, and I desperately needed to feel that fire in me again after what Parkinson’s has been doing to my mind. While I packed, I took yet another opportunity to visit every place in the house I thought my passport might be. Again. And once again I could not find it. It was becoming a routine.

When I came back home yesterday I saw I’d received a priority mail envelope from U.S., Government Official Mail with a tracking bar code on it. As soon as I picked it up I could feel something like a passport inside of it. I bolted for the kitchen table and opened it up. There Was a passport inside of it.

I was so overjoyed you can’t imagine! All these weeks of stressing over it suddenly over. The wave of absolute relief practically swept me up off my feet. And then, more confusion.

My first thought was this was my lost passport and someone found it, sent it to the Feds and they’re sending it back to me. But no…checking it more carefully I could see it was a replacement, in fact it says on the first page that it is a replacement for a lost passport. It had been issued only a few days previously, and it arrived within the six to eight week timeframe they originally said a replacement would arrive in. But why then did I get that letter telling me my application was on hold until I got the correct documentation submitted?

I have no idea what was going on. None. Maybe my stalling over it for weeks had left it in someone’s inbox and a supervisor took another look at it and decided my old California birth certificate was good enough and yes I’d submitted the lost/stolen form digitally and that was good enough. Maybe my passport Had been stolen and some crook tried to use it and got caught and my passport confiscated and sent back to the State Department, which caused somebody to look and see if I’d reported it lost or stolen, and that broke the logjam on my application. I have no idea but I am So glad, So relieved, that I have a passport again and I’m not without that gold standard of identification anymore.

These days being without ID is risky. I keep thinking of this from the Notebooks of Lazarus Long by Robert Heinlein:

“When a place gets crowded enough to require ID’s, social collapse is not far away. It is time to go elsewhere.”

Heinlein seems to have thought of himself as a “rational anarchist”. The older I get, the more I have to live in Donald Trump’s America, the more I find myself moving toward Heinlein. But I’m not there yet.

And this is the here and now, and my passport is Not leaving that safe again unless I am travelling with it or going somewhere to have some sort of ID background check done (like another Goddard badge, which isn’t likely now since I’m about to be retired again after Roman launches) and if that’s the case it is going in one of those around the neck passport wallets and Not Leaving My Body until I can get it back into the safe!

Hopefully they send me back the birth certificate I submitted my application with. But I am going to try and get another good one from California. Having the passport now might make it easier. If my original documentation didn’t go up in flames when my birth hospital burned.

I ordered a few books on the subject from Barnes & Noble and I had to laugh when I saw the “For Dummies” title in the list. But then I thought that one would give me an overview that would point me to topics to dig into further, and I ordered it anyway. In addition to these two I also ordered Navigating Life With Parkinson’s Disease (second edition) by Sotirios A. Parashos, MD. PhD and Rose L. Wichmann, PT.  They came yesterday.

Today starts my second week on the meds and I go to one pill three times a day. Last week was a half pill three times a day and those darn pills are a bit too crumbly. I have to be really careful when using the pill cutter on one or I’m taking a dose of pill dust. But for some reason the doctor needs me to ramp up to the correct dose over three weeks. It might be because a common side effect is nausea and they want my body to get accustomed to it gradually. I can say that so far I’ve experienced zero nausea. Which is good because that is the worst feeling ever. I’d rather have a toothache than nausea.

I’m hoping to see some improvement now since I really didn’t see any on the half pill dose. This morning wasn’t a good one when I first got up and took my morning coffee walk, but I’m feeling noticeably less unbalanced now. I have some work in the backyard I want to take care of so I’ll see how it goes.

Nobody is more self aware than the overthinker. I’m getting used to taking the measure of things as I’m getting ready for my day in the morning. How is the balance? The finger tremors? I do some practice quick turns to see how bad the unbalance is this morning. As I make my morning coffee I pay attention to how well my fingers are doing my bidding. Where once was a really irritating loss of focus and precision I had no explanation for, other than every doctor I talked to about it saying oh its just you’re getting old, now I have a reason for what’s happening. I have something to take a measure of. So how’s the Parkinson’s today?

I feel like I should be more angsty about it, but it’s not even close to debilitating just yet. It’s not great, but I can handle it at this stage. See my previous post about altered states of consciousness. I really want to be able to focus on some of the art projects I have in mind before it gets too much worse and the focus isn’t there. I’m really hoping the new meds give it at least some of that back for a while longer. I want to take more road trips while I’m still good to drive, but thank you all the idiots who voted for Trump, fuel prices are making that impossible, especially on a retirement income.

But the big factor as to why I’m not more upset about it is I’m in my 70s now and it’s not like I got this diagnosis in my twenties or thirties (that does happen), and the life I thought I had in front of me suddenly isn’t there anymore. I can look back on a lot of…interesting times…my only regret, and it’s a big one, is I had nobody to share it with heart and soul. But at least most of that is behind me now, not a lost life I could have had in front of me.

At this age your sort of expect it’s going to be Something. I just thought it would be the heart.

Some morning’s when I get up I’m a bit more out of balance, have a bit more hand tremors, then others. At least now I know why. Knowledge is grounding in its way, but the fact of it is still irritating. That said, I and my particular generation may have a slight advantage navigating Parkinson’s. At least some of us.

A friend told me once about how his elderly mom had been given an opiate for pain relief, and how the side effect of being all fuzzy headed was distressing her. He reassured her that it was okay, that happens, and it was all part of the treatment. Then he mentioned how since back in our younger days we’d all been getting high on all sorts of things, we’d become familiar with the feeling of being high, and navigating on foot while a bit wobbly. We had experience with altered states of consciousness, while his mom had not and it was all new to her and a bit frightening.

This may have played a part in why I hadn’t pushed more vigorously about getting a diagnosis. I could navigate the wobbliness because I’d done it often enough before. Coming on out of the blue like that it didn’t scare me so much as irritate me. And confuse me a bit as to what was going on. No, this isn’t just getting old. Something’s up. Maybe if it had sacred me I’d have pushed harder for a diagnosis.

It still irritates me, but at least I know what’s happening now.

I’ve already told those closest to me about this. Yesterday I talked it over with my project lead and his deputy at Space Telescope. Now I’m going to share it with the rest of you. Because at this age sharing our stories about aging is something we can all do for each other. Also, I’m an artist and wearing our hearts on our sleeves, and on the canvas, is just something we do.

For just over two years I’ve been struggling with our wonderful health care system trying to get a handle on what’s been happening to me. I’ve been getting forgetful, fuzzy headed, can’t focus. I’ve been losing balance, nearly falling over sometimes when I have to change course while walking through a crowd, or going back into the house because I keep inevitably forgetting to take something with me. I have tremors, mostly in the left hand thank goodness because it’s my right hand that’s the drawing hand. But that one’s getting them now too ever so slightly. I favor writing with one of my good fountain pens, usually my Mont Blanc 149 (the Diplomat), and lately I’ve had to be extra careful putting down some of the curvy letters of the alphabet while writing. Sometimes when I’m trying to draw I need to steady the pen with both hands. But I’ve also lost a lot of ability to focus and that’s kept me away from my drafting table and my cameras for going on a year now and that alone is killing me inside. For over two years I’ve been trying to get doctors to look at me and tell me what is happening and all I get is oh you’re just getting old take some vitamins. Okay, fine, I’m 72 now, so I reckon yes that’s old, but this didn’t feel like normal aging.

I ended up changing GPs (general practitioner) because my previous one retired and the new one they gave me at Whitman-Walker just didn’t take an interest. I looked for one at Union Memorial because they’ve done all the work on my heart since the heart attack in 2019 and I’ve never felt better cared for there. It’s an easy place for me to get to from home and I thought it would be good if I had all my doctors working from the same sets of data about me. The new GP I got took an instant interest in what was going on and she gave me several referrals.

First was for a brain scan. It showed nothing out of the ordinary for someone my age. Then there was one for a sleep study that I didn’t follow up on because I’d had a really bad experience with one at Hopkins about a decade and a half ago. Third one was for a neurologist. I had a session with him last Thursday, and finally got clarity.

The session was in thirds. First third was he asked me about what was going on with me and I gave him my laundry list of complaints. Pretty sure he was observing my body language and occasional difficulty getting words out. About halfway through he started asking me questions I wasn’t sure as to their relevance. How is my sense of smell? (it’s been nearly gone since the mid 1980s) When you wake up are your blankets all tangled up? Answer is somewhat, but not much unless I’m too hot and kicking them off.

Second third was your usual neurologist reflex/coordination tests. The little hammer on the knee, can you feel this vibrating here, does that feel cold there, follow my finger with your eyes, touch your nose. He had me walk back and forth in the hallway outside the examination room. I think by then he’d already figured out what was going on and he was trying to see how far along it had progressed.

Tests done we had a chat, which he began by saying to me “What I’m about to tell you isn’t good, but it’s not as bad as you might think.”

I have Parkinson’s.

And this might sound strange, even for me, and inappropriate, but my first reaction to that was an overwhelming sense of relief, because in that moment everything Just Clicked. Finally, after over two years of fighting with the American healthcare system to take my complaining seriously I had an explanation for what was happening to me that made sense. No it’s not good, but going for years and years and still not knowing could only let it keep getting worse and worse when I could have been taking the right meds and doing whatever I need to do to keep it at bay for as long as I can.

Neurologist says I have at least five, if not ten more years before I’ll be needing help. I’m going to make the most of this time, however long it turns out to be. I feel suddenly unchained from worrying so much about my future. I’ve never liked that live for the moment philosophy but now I can see some benefits there after all. I’ve been put on a medication that shovels dopamine into the brain and the neurologist said I should notice an immediate and significant improvement in mental clarity, balance and motor functions when I start taking it. I’ll reach a plateau of improvement that will slowly decline because there is no cure for this, only management. Fine. Whatever. I’ll manage.

I’m not going to troll for sympathy. I don’t even like playing the senior citizen card (just give me my discount). But you get to the ages I and my classmates are now and things just start dogpiling on us and one thing we can do for each other is tell our stories. I’ve been blogging my life ever since blogs first became a thing, and I reckon I’ll keep doing that. Also searching out others who’ve had this diagnosis and listening to their stories.

So now the rest of you know. I’m okay. I’ll deal with it and keep you posted.

For decades this blog has been my way of journaling. I’ve said often that it is a life blog. It gets political at times because that’s life in these United States these days. But it’s a life blog, not a political one. It’s where I write about my life. If it gets strange, I’m strange. If it gets disturbing, you should see my life from my perspective. Welcome to my life. Blog. Thing of it is though, I don’t get a lot of feedback here. And even if I did, it wouldn’t be of the kind we all really need. I never found a boyfriend. I never found that significant other to talk with, to share our innermost selves with. It leaves you disconnected, drifting through life. I can get things out of me in my art, and here on the blog, but it’s a one-way conversation. I’ve never had the chance to share my life with anyone, who would share theirs with me. I’ve had no companion on this journey.

I recently bought a couple journaling books in the hope that, at this end stage of my life, I can gain some better insight into myself. Self acceptance is a hard thing to achieve, especially when you believe you’ve already achieved it. I’ve often prided myself on never feeling ashamed of my sexual orientation, but that is one aspect of personality among many, and looking back I had it very hard growing up, in a bunch of different ways. Picking through all of it to rescue the exuberant, curious, expressive boy I was before getting tossed into grade school has been a lifelong journey. He got suffocated, first by my maternal grandmother and most of her family out of hatred of my dad, then by my grade school teachers who thought I talked too much and took excessive interest in my art projects, then by the pervasive homophobia that surrounded me as I came of age. After mom passed away I entered therapy for a brief period, but it was shallow at best. I was told being an only child was a “toughie” and that I “present young”, as if that was somehow a bad thing and not a lost little portion of that exuberant and expressive boy I once was, still trying to live.

I came across a card game with the title “How Deep Will You Go”, and bought it not to play with anyone, but to draw a card every morning and try to answer the questions: What is your biggest struggle right now? What’s something simple that makes you smile? Is there closure you never got to have? What are you afraid to let go of? I thought these could be helpful for solitary me, who never found a soulmate to have these sorts of conversations with. 

Later I saw a daily journal book, each day a page with a similar sort of question at the top for you to write about on the page below it. Write something you’ve been wanting to tell someone. What’s something you haven’t said out loud yet? Write a letter to someone who hurt you. When I went to order one there was another journal you could get bundled with it, inviting you to dig deeper. Where do you go to feel closest to yourself? 

These were both hardbound books and I figured I would write out my answers with my good fountain pens, my awful handwriting might even improve a tad since I seldom write longhand anymore until I’m signing a document or putting my name on some artwork. My handwriting is very scrawly. But the books have arrived and I’ve begun the work, and immediately discovered a difficulty. I have nowhere to actually write, that isn’t a computer desk with a keyboard taking up the space where handwriting would otherwise happen.

In grade school my maternal grandmother bought me a student desk with open shelves instead of drawers so I couldn’t hide anything from her. I used it all through school and when I finally moved out of the apartment I shared with mom and broke it into little bits because I didn’t want anything of hers to follow me into the rest of my life. I’ve not had a writing desk since, but I bought a very nice drafting table while I was still living with mom and it’s followed me to the little Baltimore rowhouse of my own. I’ll do the journaling exercises on that. Seems appropriate. 

I thought I knew what being a solitary was like after all these decades. But I didn’t. I thought I could always handle it. And unfortunately, I can. But I see something I never really appreciated before. And having that significant other, a body and soul connection where our innermost selves feel completely at ease with each other, embraced, loved, seen…grounded…home…would be really good to have now.

I never found him. I’m an only kid. Maybe that made it easier for me to get used to the inner solitude, even in those times when I tried to escape it and couldn’t. Plus the torrent of abuse gay kids got in the 60s/70s, to remind me that love was not mine to have. I tried to find him, but as I became a senior citizen I settled in to the void because there was no where else to live (people who look like that want people who look like that…) and by then I’d made it comfortable. It was the room of my own I always had ever since I left the cradle, where I could occupy myself with pastimes, where love could have been but never was. I never really grasped how it would feel, when I finally came to this moment, and I saw the void was bigger than I realized without that significant other to keep us both steady.

Got my brain imaged at Union yesterday morning. They said they got good data because I didn’t move throughout the procedure. I perfected the art of playing rag doll for the doctor ages ago. The only time I have trouble with it is when they need to examine the area around my stomach because I am massively ticklish there.

The slow steady increase in my memory problems, combined with my having subtle but definite balance issues, and trouble getting words out sometimes, is troubling me lots. So I am keen to see the results of this. There are two possible things that could be causing it, neither of them are good outcomes. But hopefully it’s just I need to be more regular about taking my vitamins at my age, and getting out of the chair in front of my computer more.

Like…now for instance.