Fall is arriving in my small town... this is a tree I see when I go on walks. |
October 8, 2012
I was taking a walk this morning, and was
enjoying how warm and toasty the sun felt on my shirt despite the cool
temperatures. I was coming to a turn in the road where I live, when a truck
slowly inched into view. A man waved for me to cross the street before he went
ahead, but I made a hand motion showing I wasn't crossing the street, I was
just turning onto the road he was on. I smiled because it would have taken him
less than a second to drive through that intersection, when it would have taken
me two and a half minutes or more at the speed I was moving. Suddenly I felt
special, like someone thought I was worth two and a half minutes or more of
their time. The guy smiled and waved again as he drove away, and I recognized
him as a neighbor. I kept walking on, but felt like I had been hit with an
epiphany. Which is: "People out in the world are nice." I was walking
on air the rest of the walk home. I kept thinking, "I can make it
in the world. People out there are nice. They aren't cruel and against
me after all."
It has felt like the world has been against me
for the last few years. When I got sick and had to give up my career and my
apartment three years ago, I didn't know that I was also giving up my
independence and all of the things that I loved most. It was a big adjustment.
It has taken awhile to get used to no longer hopping in a car to go places
anytime I want to. My health isn't good enough for me to be driving yet and it
isn't safe for me to be behind the wheel of a car. When I lived in NYC, I could
walk anywhere, but I'm in a small town now, so I can't walk to convenience
stores or public places.
I have to admit, it's been tough being tucked
away from the world like this year in, year out. It's been several years now
where I've not gone out to the grocery store, mall, parties, other people's
houses, to a work place, to a gas station, to anywhere except my backyard. My backyard
is a wonderful place, don’t get me wrong! I see so much more in nature and in
details now that I didn’t see before and now appreciate. But I think I forget
what real people are like. There aren’t any people in my backyard. I forget what
my old life was like. It's kind of like I am living in someone else's story, in
some remote world far from the world I used to live in. It's odd, to be sure.
People don't tell you what happens when you get sick. They don't talk about
these things. They don't talk about how difficult it is to accept this
different world.
People don’t tell you that when you get sick, the
scaffold of your life just might fall out from under you. Why would they tell
you this, though? It’s an unthinkable possibility. But all those threads woven
so tightly underneath your feet, all those supports that you’ve unthinkably assumed
would always be there for you if you fell might suddenly unravel at a moments’
notice. I guess I was oblivious in
thinking that of course I had a scaffold. Naive. Head in the clouds. Thinking
more positively than I possibly should have been. I guess I couldn’t have
imagined that so many organizations, groups and people who I thought would
support me... could just bottom out all at once and let me fall suddenly
through the cracks. For example, once I became so ill that I couldn’t work
anymore, my health insurance gave out, and then I got denied coverage due to a
pre-existing health condition. So you lose your coverage because you are sick,
but you are denied future coverage because you are sick. The
healthcare system here in the US currently sucks, so this wasn’t a surprise to me. I
knew that the condition I had doesn't qualify for disability benefits. Again,
not a surprise. The doctors I went to for years on end eventually also had no
answers for me. This was upsetting for me, but it wasn’t the end of the world.
What was most surprising to me is that suddenly my closest supports started
faltering. First my coworkers and friends disappeared, and then somehow my
family and the church started acting shifty.
I think that at first, the hardest thing for me
about getting sick was falling out of the old social network into this stretch
of isolation. Nobody I knew pre-illness keeps in touch with me anymore. To be
honest, I didn't really have close friends back then since I was a private
person, but it was nice having coworkers while I was working. I got my taste of
social interaction by going to work. Now that I’m not strong enough to work or
invite people over, I resort to making friends online. These friends are mostly
sick, so they don’t have the juice to interact much. Which is understandable.
At times I get mad at my ex-coworkers and friends because they don't try to keep
in touch with me. But then I realize that they are busy with their own lives
and have long forgotten me as the coworker who rarely talked with them and kept
to herself. It's not their fault, or mine, or anyone's fault. It's just how it
is. But that doesn't make it easy. Even though I enjoy my alone time out in
nature or holed up with a book more than most people, these long stretches of complete
isolation aren't something I enjoy.
I guess one thing that surprised me most about
getting sick was the way different churches and ministries treated me. I was
shocked, honestly. Back in the day, ever since I can remember, I fit so well
into the church scene. I was saved and meant it, was baptized, was an excellent
teacher, a peaceful law abiding person, going to church, volunteering to teach Sunday
school, tithing, helping others. I was in
that bubble, part of the group. I didn’t think I’d ever be the one outside the
bubble, pressing my hands and face against the wall trying to get in. And yet,
when I got sick, each ministry and church I tried to get in contact with
refused to get back in touch with me. This was heart breaking. I was too sick
to leave the house for a few years and not one ministry or church returned my
calls or emails to come visit me or talk on the phone. They treated me like a
leper. A few of them told me I had unconfessed sin in my life, and demonic
spirits that needed to be exorcized. I got myself exorcized, did a ton of self
examination and confession. One pastor told me that based on my exhaustive list
of symptoms, I must have done an enormous amount of sinning, more than any one
person could reasonably rack up. He told me I needed to study the Scriptures
and repent more. So I studied voraciously for the next couple years and got
nowhere except sicker. I checked back in with the pastor and he basically told
me he was done with me, there was nothing more he could do. And at this point,
the other ministries still wouldn’t speak with me. It was confusing to me how
of all organizations, the church could turn its back on me. I wasn't even
asking for much. I wasn't asking for money, or anything. I just wanted a kind
word, a sympathetic ear. But no. None of that did I get. I was told that
everything that was happening to me was my fault, and there wasn’t a drop of
compassion to be shared with me. It did make me angry, but I was so unwell that
I didn't have the energy to stoke my feisty side and make a scene. Over time, I
became disgusted at their response, and eventually gave up even trying to
contact them.
So how the church treated me was interesting, to
say the least. I would have never expected that. But the thing that they really
don't tell you when you get sick is.... your own family might turn on you. My
family has never been the type to call or stop by, and although I thought that
my being ill would change that, it hasn't. It's like my family just keeps going
on in their normal daily lives, while their sister/daughter is in a crisis. I
tell them all the time I'm lonely and would love company, but it just goes over
their head. I think they think they'll catch the illness from me, or something.
But I never thought they would push me away. Not in my wildest dreams. And yet,
how does the saying go, "When tragedy strikes, you will see the true
colors of those that say they care about you."
I started noticing subtle signs that things
weren't as loving as I'd imagined they'd be soon after getting sick. My parents
couldn't drive up to help me move from NYC to PA, and they knew nobody who
could help me either. They grumbled and complained if I asked them to drive me
to get groceries. They went out of their way to judge me behind my back and whisper
that I wouldn't ever get better and get my career back until I "got right
with God." After a few years, I went through a period of time where I was
very sick, unable to shower, cook for myself or care for myself. I thought I
was dying. I asked my parents if I could move in with them, and they told me
no. They told me I would be a nuisance, an intrusion to their privacy. I was
told to check into hospice care, and no I shouldn't expect them to give me a
ride. I didn't have a place to go after that, so I became very confused and
sad. Let me tell you, I was completely shocked. I always guessed based on my
family's treatment of me that I wasn't really that loved, but I never thought
when it came down to the wire, my family wouldn't have my back. I was so unwell
that I couldn't think straight, and was very scared to be alone. I thought I
dreamed it up, it seemed so unreal. And I didn't have a network of others to
tell, to check in with to see if what was happening was really happening. I
don't think that what happened was right, but to this day no one mentions it,
no one is sorry about it, and no one hears me if I try to bring it up. But,
back to the story.
I kept asking myself, what did I do to deserve
this? What could I have done to have prevented this? And I realize I didn't do
anything to deserve this, except agreeing to get born into this world. The only
way I could have prevented this was perhaps having some real friends as a
support. But if I knew how to make friends, I would have gone about that
business real cheery like a long ago. But my dad beat us as children for making
friends, so the neurons that normally connect as a child when you learn to make
friends got severed back then, and no matter how old I was, I always felt like a
large presence was going to beat me if I got caught smiling at another human. So
I get the feeling that I couldn’t have created a better, stronger safety net. I
couldn’t have known. And yet, I get the
feeling this isn't how life is supposed to work. This is not how I imagined
life to be like. The only thing that happened was I got sick and couldn't care
for myself, and all of a sudden people run from me willy nilly, like I have
something contagious they don't want to get. Like they don't want tragedy to
rub off from me to them.
Is that how life works? At the moment you are no
longer contributing to society anymore and have to ask for favors, you are on
the outs list? I just can’t believe that something as simple as getting sick
for several years on end could make people drop their love and care for me. Had
they never loved and cared for me in the first place? Was I just simply that unlovable,
and nobody had ever bothered to tell me? Or I just never realized it before? It
was so difficult for me to wrap my head around believing that my family never
really loved me. I resisted this, because it meant that I was by default unlovable.
But I didn't know the truth then. I hadn't yet experientially realized that my
value as a human being didn't depend on what those closest to me said or did. I
had not learned this before, and didn't know it then. I was in a dark place.
But that morning when the neighbor waved for me
to walk by, I felt loved. I felt like maybe the world wasn't against me after
all. I wished that man was my father. I wished that I could re-experience all
over again the breaking apart and shattering of my world, but this time with
the knowledge that my parents would have my back after all. When your world
falls apart, the last thing you'd want to fall away is the safety net of your
family. Guess what? I had no safety net. I went into free fall, and got stuck
there in that vortex. Spinning there, dizzy, but whoosh.... out of the corner of my eye, the neighbor smiles and
waves, and waits for me to cross the road. Love. There are good people out
there. The whole world is not out to get me after all.
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