TERMINAL UNIQUENESS
“I'm glad that you're near
And I'm sad when you're here
This is what it's like to be me”
-Daryl Palumbo
Everybody has a story. Mine is not more or less interesting,
and here it is:
I recently went to an event and left thinking, without
reasonable basis, that the people who attended must be lonely weirdos. Then, I
thought about myself and how I’m a lonely weirdo. Same concept, but it’s
different somehow. I don’t experience things like other people do. My situation
is very niche and I don’t think anybody could fully relate to it.
A friend introduced me to the concept of terminal
uniqueness, a common phrase in the world of addiction recovery. Basically, it’s
the (untrue) notion that one’s life is so different from anyone else’s that
nobody could possibly understand.
I get the idea but still feel like my circumstances are exclusive
to me.
I’ve always felt like an outsider, regardless of the
situation. I never felt like I fit in with any group, even those I got along
with well. (And I said ‘felt like’ to acknowledge that it sometimes has been in
my head, as opposed to being reality.)
Whether I’m with friends, acquaintances, or strangers in a
place that’s either familiar or new, I have a feeling of being “other”. There
are two groups- the people present and me. I’ve tried socializing many times,
but very rarely felt a connection I thought was worth exploring.
A lot of my friends I’ve had for decades. Do I actually care
for them? I think so, but feel like it’s something I should know for sure.
Maybe I’m just too comfortable with them.
Imagine, if you can, wondering if people who’ve been in your
life for a long time are important to you.
I don’t know. I truly don’t. And it sucks.
I question absolutely everything, which leaves me with
intense unease. And it’s exhausting.
Woe is me
If there (finally) was a zombie apocalypse, I’d be among the
first killed. I have no practical skills and cannot run. I’d probably pretend I
planned it that way, so I wouldn’t have to deal with friends’ deaths, when the
truth is I’d let myself be taken out. I like to think I would do something
noble, like sacrifice myself so the group can escape. But in reality, I’d
probably just cough, be found out, and get eaten.
Yeah.
Anyway, time for some venting. Here goes:
I have a complex strain of hereditary spastic paraplegia, a
rare and incurable nervous system disorder that causes my muscles to
deteriorate. It makes my movements slow, produces a verbal stutter, creates
swallowing issues (regularly, not with food or drink), and occasionally brings
urinary urgency. It’s greatly reduced my overall confidence. “Luckily”, I have
a relatively-mild case of HSP, but that seems to be the exception, since
everyone I’ve spoken to who struggles with it needs some kind of mobility aid.
Even within the rarity of the disease, I feel like an outsider.
I inherited Depression from my mom and have taken five
anti-depressants, all of which have had zero effect, positive or negative. People
I’ve heard talk about Depression have mentioned being unable to do basic things
(like eating) and not getting out of bed for days. I’ve never had those problems,
so regarding Depression, too, I am an exception.
I think what I’ve got leans toward a low-key but constant
form of Depression called Dysthymia. My motivation to get things done is minimal
and my mood is generally gloomy, even if I don’t seem that way. I don’t
consciously hide my emotions, but expressing them is difficult and I have no
idea when I last felt genuine excitement.
I’ve also diagnosed myself with AuDHD, a combination of
autism and ADHD, since neither by itself described me accurately enough.
(Self-diagnosis made sense, since getting a “real” one seems pointless for me.)
It makes me have contradictory thoughts, such as craving a structured routine
yet getting bored easily and wanting newness. Opposing ideas have always plagued
me, but at least now I know why. Because of the need for precise stimulation, new
things (people, places, movies, music, etc.) have to fit in a very small window
for me to be interested in them. I tend to judge something quickly and rarely
give it time to become appealing and grow on me.
All-or-nothing thinking makes something not going according
to “plan” feel like a complete disaster. For example, if I go to a place when
it’s not “supposed to” be busy but is, I freeze, not knowing what to do. I’ll try
to convince myself that the situation is OK, but will probably just give up and
leave. That makes everything fine and doesn’t throw me off *too* much.
I feel defeated very easily.
I can be very hard on myself, but I think it’s justified.
Though, is it really?
This kind of neuro-divergence has always made me feel like
an outsider, regardless of the setting.
I go places and do things, but am very introverted and
easily annoyed. I’ve done a bunch of travelling and have even tried stand-up
comedy several times. I currently host a game night and ran a mental health
support group last year. How am I both social and anti-social!?
I’ll tell you how: necessity. I’d rather join something that
exists, but if it doesn’t, I consider creating it. I weigh my discomfort and the
effort required against bringing it to life to decide if the idea is worth
pursuing.
This continual experience has led to chronic loneliness,
because I feel disconnected from everybody. There’s always been a sense of not
fitting in, even when I have things in common with people. At a concert, liking
the same band would be a way to relate to anyone in the crowd, since we
probably enjoy a lot of the same music. But I’ve made no friends this way. I
don’t talk to people at shows, then criticize myself later for not doing so.
…
When my parents died, they left me financially OK (not
wealthy, but enough to sustain me).
I haven’t had a full-time job since my last one let me go in 2007. I had no
idea how much remaining on the path of not working would negatively impact my
ability to socialize. After the job dismissed me, I decided to take some time
off, since I had other stressful things going on as well- a sick father and a tense
relationship with a chaotic girlfriend.
I largely squandered my time, both then and since. I’ve done
things, but not as much as I’d like. I should be fluent in at least one
non-English language. I should have travelled to more places. I should have
taken advantage of the situation.
Therapists have told me not to ‘should’ on myself. I should
have listened.
If I had to pick from the plethora, my two biggest issues
right now are:
1) I’ve tried physical therapy, medication, many kinds of
talk therapy, tai chi, a breathing class, yoga, a wellness retreat, and I don’t
even know what else. Nothing has worked, even a little bit. At this point, a
bad side effect would be welcomed, since it would at least be different. Of
course I don’t want to spend an entire night throwing up, but it would be oddly
comforting if there was some kind of reaction. Everything has been neutral and
felt more like just another thing I did rather than something that helped. I
understand that things take time to work, and I’ve given them the opportunity. But
doing something that happens every day, like getting out of bed, and thinking
‘That was a bit easier than usual’ would be incredible. I keep trying though,
because both parents gave up, and I never want to.
2) My physical condition is much worse in my head than it
appears. I think I look like a swaying drunk and sound like a bumbling fool.
People have said that I look and sound fine, but that doesn’t change what I
experience. And part of the problem is related to that- being told I’m OK.
Within the past few years, people have begun to say, ‘What?’, often enough when
I speak. I’m curious, so I’ll ask what happened, but only get excuses like
‘It’s loud in here’. Being incomprehensible has never been an issue, so I want
to know what has changed, but I guess people would rather be “nice” than
helpful. Or maybe they’re being honest and it simply differs from how I see
things.
I didn’t have a ‘wild’ time in my 20s, as is apparently the norm.
I probably did some silly things but never got the experience of ‘living it
up’. I’ve never even had a one-night stand, which is supposedly a common thing.
This stunted me so much that if I was ever asked, ‘Want to come back to my
place?’, I would probably freeze and then think of a way out of the situation,
even if it was one I wanted.
I’m also usually the only person my age wherever I go.
For one more thing- I’m tired of explaining things
(verbally). ‘HSP is means this and AuDHD is a combination of that…’ (Thank God
for Depression, huh?) People want to know what’s going on but don’t realize how
draining it is to tell them.
I think the idea of not being like that anymore pushed me to
try vagabonding for 20 months. (Spoiler: It very much did not work.)
And that’s why is feel so incredibly distant all the time,
like I can’t relate to anybody.
The future is
wobbly
I fell during a hike recently. Thankfully it wasn’t bad, but
it could have been. Really bad.
As I was laying in the mud, I took deep breaths and
contemplated why it happened. Did I stop suddenly? Was I distracted? Or was it
just one of those things?
It rattled me.
It also got me thinking about who would take care of me if
things become dire. I know people care about me, but the thought of anybody
giving up their comfort to help me is indescribably awful. Having been a
care-giver, I know how exhausting it can be. (And thankless, in my experience.)
I would probably just be another name on a nurse’s sheet,
and that idea scares the hell out of me.
I think it’s fair to say that anything can happen at any
time. No amount of caution and preparation would suffice to deal with a careless
driver or maniac with a sword.
But I don’t worry about such things. If I did, I’d never
leave the house, and that’s no way to live. (I’m not sure of the correct way
*to* live, if there even is such a thing, but I know being afraid of everything
and staying inside is not it.)
Instead, a future of possibilities plagues me.
My mother’s headaches got so intense that she killed
herself. I’ve never even thought of doing the same and hopefully never will,
but part of me fears becoming that over-whelmed and desperate. I wake up every
day with brain fog and a painless pressure in my head. I don’t think it’s anywhere
near the chronic migraines she had, but will it turn into that one day?
My dad gave up when he got the Parkinson’s diagnosis. It’s
not hereditary and my test for it came back negative, but I can’t keep it from
being on my mind anyway. I’m always trying different things that could make my
situation better, but is it enough? It’s more than he did for sure, but will be
result be the same? Some of my symptoms are similar, so I can only wonder if
I’ll get to that point. Hearing how a situation could end up is harrowing
enough, but actually seeing it is the stuff nightmares are made of.
Like I said, my case of HSP is a mild one. It affects
everybody differently, and there’s a chance I could simply stay like this,
which would be awful but manageable. But what if it gets worse? I won’t know
unless it becomes true.
I also fear being alone. I do many things by myself and my
cold demeanor has not eased that. People don’t want to approach me. I have
resting don’t-bother-me face. I’ve become numb. Emotions are in me, but they
don’t know how to come out. I’m not expressive. (I’ve been asked, ‘Are you
having an OK time?’, on many occurrences.) I have plenty of feelings but don’t
know what to do with one when it reaches the surface.
For example, I was dating someone who said she had a
headache and was going to lay down. Later, I asked how she was feeling, and her
response was, ‘My headache came back with a vengeance’. That was,
word-for-word, what my mom wrote in her suicide note. I didn’t know how to
handle it, so I put the phone down and paced around. Was I angry? Yes, but not at
the one I was dating. She had no idea. Was I upset? Definitely, but about what?
I felt unease in my chest or stomach or… I don’t even know. Somewhere. Was I
remembering how reading the note felt? I don’t think so, but maybe.
I told myself to sit down and write in my journal, which I
did for a bit until I got distracted by something unrelated. And that’s when I
got rid of the “weird” feeling.
Cautious
optimism
So, now what?
As somebody who is generally lost in life, I ask myself that
question a lot. My goal is to convince myself to embrace my situation. I
dislike how it came to be, but I cannot change what’s happening.
Nothing is keeping me where I live now, so the idea of
travel is appealing. I could make a list of places to see, in case I become
unable to one day. I am currently in no pain and don’t need any kind of
mobility aid. The phrase ‘Things could be worse’ never resonated with me, but I
think it’s time to consider it.
Yet I like having a home-base. I may not enjoy the apartment
or where it is, but it’s familiar. I go to places weekly and people at them
recognize me. I’ve made connections, however loose they may be.
I have to make some kind of plan, then- gasp!- motivate
myself to put it into action...
