Heard on the subway: “Even when I was a vegetarian, I ate escargots.
They’re just bugs you know…”
Je suis seule…
Just have to love the French. They even make the most simple, saddest
statement sound beautiful. (So sue me, I’m a cheeseball on the level of Margo
Martindale’s “Carol” from “Paris, je t’aime”.) New York can be that beautiful
sort of romantic lonely (you know that grey rainy, tea kettle whistling in the
background while wistfully looking out the window sort of heart-string lonely).
Today, this is a different sort of lonely. Having a chiari in New York can make
the lonely go down a devastating route.
Damn, I have never felt more alone.
I’m fighting this war against my body in the city, on my own. My folks
live back south and my boyfriend (at my age, feels so weird using that word,
but can’t come up for a better term for him after all these years) lives in Boston
due to a job that was truly too good to pass up. The problem is my docs don’t
want me living alone. The idea of giving up that independence is something I’m
just not ready for yet. Look, don’t think I’m writing this to say people aren’t
there for me enough. My parents and boyfriend, do everything they can for me,
and I am forever indebted to them for their support, love, and all they do. I
also have one incredibly dear friend. He’s a little brother sort, who has keys
to my place and checks in to make sure I’m alive and not in one of those stupid
situations of, “Help, I’ve fallen and I can’t get up!” It’s just (I know, step
away from the computer) I read on Facebook and other blogs about people with
illnesses and disabilities (who live outside of NY), and their amazing support
systems of family and friends, and wonder how having a huge network like that
would feel. I used to have friends, or I thought they were friends. Now they’re
just Facebook icons posting pics of their food, kids, and such. Yes, FB is a
plague in our time, making everyone go through simulated connections and
destroying true communication, but this whole annoying chiari business can
cause even more friends to peel off in grand numbers since you can’t go out
much any more.
Here’s a little of how the lonely creeps in.
As mentioned before, balance is a massive issue with my chiari, so
daily tasks can be quite a challenge. Day begins, get up and if it’s a good day
there’s no wobbliness. Then there’s the case of the bad day and you swing the
legs over, attempt to go upright, sway, nosedive forward and bean yourself on
the head on a chair arm. I even managed to knock myself out once. Imagine
explaining the purple and green egg on my head at work. Ugh. Showering can be
quite an adventure also. Damn it! I am not ready for a senior bar in the shower
or shower chair! Unfortunately there are days I could really use one. You got
it, I’ve fallen in the shower and even clean out of the shower onto the floor,
then there’s also the case of hitting the towel rack. Sigh.
Jumping ahead to the commute Well, it’s NY so it’s going to be by
subway, and we all know how that is from a previous d post.
Now, as for work, I’m pretty fortunate. Am at least behind a computer
(even though that’s not the best thing for ACM), and don’t have to be wobbling
around constantly. Sitting though can be torturous. Lean one way, brain slides…lean another way, bone protrudes
more…find the perfect sitting position, someone f@cks with my chair. Yes
Dorothy, we are still in high school. Even though there is a “DO NOT SIT IN THIS
CHAIR” sign on it, people readjust the chair that work got for my spine and had
also set it up especially for my size. Every little thing like this chair can
help me make it through the day with maybe just a little bit less pain. I used
to love my job and worked extra hours on projects that really made me feel
fulfilled. I even ran an art blog, partnered in a successful gallery, and was
out to all hours promoting my artists and seeing friends. Now, I just do good
to make it through the day and hope that no one thinks I’m weak. People
understand exhaustion for people with cancer and chemo, or the flu, or a broken
leg; but when they can’t see my screwed up inner workings, they can’t
understand why I’m about to collapse. I feel like vulture sh*t.
Time to head home. Can’t feel my hands and feet. Head has a spike
piercing through the back of the top of the skull. Eyesight is quivering and
fading. No, there’s no going out for post work drinks, dinner in Chelsea,
spending time with friends. Rattle around the subway again. Home. Click on the
lights. No one’s waiting for me with arms outstretched ready to hug me. No voice messages. Too much pain and numbness
to cook. Uncork a bottle of wine and become one of those couch potatoes I swore
I would never become.
Damn, I am so alone.
Not every… but on random nights, I’ll hear the lock turn. “Hellooooo,
you around? What’s happening?” My friend that checks in sometimes pops his
smiling face around the doorframe. “You eat yet? You need to dump your
boyfriend and date a sandwich. C’mon lets get some food.” A little later “Ping”! Skype jingles, and I
know it’s Boston calling. My world may be smaller, but maybe I’m not always so
damn alone. Now I know who really
matters, and truly know who all those people I used to call “friends” really
are.
Note this
entry was written in advance and after putting the first blog post up, (And
yes, I posted it on Facebook. Was the only way anyone would ever see it.) I
have started hearing from some people again. Honestly, I can’t even find a way
to express how much it meant to me. Maybe FB isn’t the plague. Would just so
love to see more people face to face, and have real intelligent extended conversations.
Friends have always meant so much to me, and so many of them I have always
considered my family. Miss cooking for you. Miss listening to your tales. Miss
you all.
#chiari #invisibleillness
#chiari #invisibleillness
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