Another day in someone else’s paradise

The sun’s coming up in the distance. Gradually. The sky is getting pink, and small clouds are hovering over the horizon. Street lights glow orange, and the tail lights of cars blink on and off on the streets below. My room is on the “boring” side of the hotel on this trip, which is good. The “exciting” side is bright and loud and exhausting. This room is my refuge.

I had a great time with my relatives, last night. I have not seen one of them in 30 years, and I had never met their spouse. You can really tell we’re related. Our mannerisms and sense of humor are very similar, and we talk about the same kinds of things. It was also good to connect with real people who are not working at the convention. Real people. Who talk to you because they want to.

I managed to escape the drunken forays of my workmates last night. I went to dinner with my family, and they went their own way – dinner and drinking till all hours. I cannot do it. I cannot tolerate alcohol, and being sleep-deprived is a hazard for me. My whole system starts to degrade when I am overly tired, and I make bad decisions that get me in trouble. I say things I should not say. I get combative. I get off-balance and am in more risk of falling. I make stupid choices and make myself even more tired, which compounds my difficulties. I cannot afford to get in that kind of trouble – especially in a work situation. I have a spouse and a home to provide for, and I also need to keep myself safe.

That is something that people with no health challenges can understand. They can just run around and do whatever they like without repercussions. A playground like this is paradise for them, and they can let their hair down and run wild, staving off their fears of dying and getting old.

My life, unfortunately, is all about repercussions. But I cannot tell anyone, because if people find out that I have “issues”, they can be very unkind. And they can start avoiding me. That’s why I never tell anyone about my brain injuries. They just don’t get it, and this is difficult enough, without adding constant isolation to the mix.

Brain injury can be deeply isolating. People do not want to confront human limitations – especially when it comes to neuro stuff. They just don’t. So, I spare them the discomfort of disclosure, and we can all just live our lives. But that’s the double-bind. If I don’t tell people I need special consideration and assistance, I can never get it. But if I do tell them, I can lose my job. And don’t tell me it’s illegal to discriminate. Employers, bosses, whoever… will find other ways to exclude you, if you’re “not a good fit”.

I like having a job. I like having an income. I like not being homeless and living on the edge. And silence is the price-tag on that.

Muddling through. Battling back the demons. Dancing carefully on the razor’s edge. And never letting on, just what is happening with me.

All the lights and noise and busy-ness that energize others… they exhaust me. I’m on constant guard against the onslaught. All the excitement, the long hours, the rich food and drinking… they fry my system, and I can barely keep it together… then collapse at the end of it all. I get so depleted, that I am pretty worthless for weeks after. It’s the price I pay for keeping up with “normal” people, and it has been this way my entire brain-injured life.

So, I suck it up. Keep going. Just focus on this being over in a few days. Three days and counting. And I really only need to work part of that time. I just want it to be over. But in the meantime, I enjoy what I can. Focus on the positives. Take time to myself. Recharge as best I can. And sleep whenever possible.

Focus on the good, so I don’t overwhelm myself with negativity. Just stay the course and be grateful for what good I can find.

Tracking sleep

The countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

Doing to be

I got home late last night. “Late” being nearly 10 p.m. on a work night. Greeted like a returning hero of sorts.

I was back.

I did it.

Part of me thinks this shouldn’t be such a big deal, and a week-long business trip to an industry conference shouldn’t elicit praise and celebration. But part of me also knows that I did good work on this trip, I made good connections, and I made a positive difference in the world, in however small a way.

I was courteous to my colleagues in the convention center. I was kind to the poor on the streets. I was considerate of the hospitality staff, wherever I went. And I actually convinced professional peers who have been afraid of the folks in my department, that we are here to help, and their opinion matters.

I met with wary almost-strangers, and parted ways with new friends.

Actually, come to think of it, I think this should elicit praise and celebration.

Gandhi and Mother Teresa might have done more. Albert Schweitzer and Dorothy Day probably would have done more. But for where I was, and what I did, I did alright.

Best of all, I did no harm. Which is a far sight more than many people do. And I looked people in the eye when they talked to me. Unless, of course, they were culturally uncomfortable with that. In that case, I looked away. Didn’t intrude. Either way, it was fine.

Thinking back, I will say that I had some very dark hours, on that trip. There I was, 2000 miles from home, sleeping in a very uncomfortable bed, off my daily routine, surrounded by people who all seemed to know each other, some of whom couldn’t be bothered to give me the time of day and actually ditched me several times. Assholes. And they sit right across the hall from me at work.

What the hell was I doing there? I asked myself more than once, at the end of long days, when the fatigue caught up with me and I couldn’t muster enough mojo to feel much of anything about anything other than dread and depression. Start of the day –> mucho moxie. End of the day –> zip, nada, zilch. It’s a rough, rough ride, going from way-way up to way-way down in the space of 18 hours, with your joints aching and screaming, your lower back in knots, your neck and shoulders a mass of tender ropes, your head pounding non-stop… And doing it four nights running.

So, I did the only thing I could — I went out for long walks after convention hours, then went back to my room and drew a hot bath and soaked till the pain was eased, and I could sleep.

In those minutes, as I was debating whether to numb my pain with Advil or get my mind off it with a walk… fighting off that gut-wrenching loneliness that comes from talking to your Beloved (or a good friend) and hearing their voice and knowing they are a looooong plane ride away, and as good as their voice sounds, it’s nothing like having them There Beside You… god, that hurts.

But then the thought came to me that this was a valuable experience to have. For as painful and as awkward as things were for me, I was probably not alone. I was at a conference filled with thousands of people who were also far from home, and many of them may have felt exactly the same way — all by their lonesome in a strange place, without the ones they loved nearby. And there were the ones from other countries and other cultures, speaking a different language and eating different foods and interacting in ways other than what they were used to… for them it must have been even harder.

And so I used it. I used that feeling, that pain, that anguish. I “sat in it” as my therapist friends like to describe it. I marinated in it. I didn’t turn on the television, I didn’t listen to my iPod. I just sat with it and felt it and knew it was real… and knew that there were countless other people in the world around me who were feeling very much like me, right at that same moment.

And I took that feeling, that sense, that experience, and I did something with it. I carried it with me, as I went out into the world, attending sessions at this conference, meeting people and talking with them — both officially and just by-the-by. I took that sense of loneliness, that isolation, and I acted as though each person I ran into felt exactly that same way. And when I caught their eye – or they caught mine – my suspicions were confirmed. And they appreciated the smile. Or the handshake. Or the nod.

See, here’s the thing for me… I’ve got my issues. Who doesn’t? But when I take those issues, those pains, those sorrows, and I do something with them, they completely transform my experience. They turn me from a lonely heart looking for love in all the wrong places, to a human being offering other lonely hearts the kind of compassion and human connection you can’t often get in this techno-virtual world, where the most contact some people have with the rest of the world comes from a few hours spent on Facebook.

And as I simply went through the motions of being courteous and kind and considerate to everyone I met, doing the same sorts of things over and over — holding a door open, nodding hello, smiling and giving someone’s hand a firm shake — I felt like I was coming back to myself. Instead of staying lost in the malaise of my own isolation, when I put the focus on someone and something other than my own insecurity and loneliness, I found the isolation lifting, dissipating, fading to the background. It was always there, but it almost didn’t matter — except for the fact that it made me more aware of the isolation that others were probably feeling, every bit as much as myself.

And in that doing, I became something other than what I was in the silence of my hotel room. In that doing, I found a sort of redemption — not only for me, but for those others, as well. Perhaps even for the others whom those others encountered later on each day. Doing my part to not let my insecurity and self-consciousness get the better of me, turned me into a ‘pebble ambassador’ of sorts — toss me in the human pond and see what happens to the ripples.

The more I did it, the better I felt. And by the time I left, the anxiety and fear and self-conscious insecurity and loneliness had all but gone away. They were always there in the background, sure, but it almost didn’t matter… except to remind me how the rest of the world just might have been feeling — and perhaps even moreso than me.

 

I’m fading, now. Fading fast. Time to sleep. I’ve earned it.