The Citizen, 2019-06-13, Page 12PAGE 12. THE CITIZEN, THURSDAY, JUNE 13, 2019.
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of the fact that everyone has
something to contribute if you just
allow them the opportunity to do so.
My friend Chris puts it so clearly:
“my satellite dish has grown”. I have
made friends with people that I
would never have even met.
I am continuously working to help
educate people about why
accessibility matters. How everyone,
at some time in their lives, will need
a bigger washroom for
maneouvering, a ramp instead of
stairs, colour contrast along the
sidewalk, a grab bar to steady
themselves and better acoustics in a
restaurant. Accessibility is about
safety, independence and the
preservation of personal dignity.
Everyone deserves it. I have run
workshops for builders,
homeowners, businesses and
students, spoken to youth and
written about how much energy is
consumed by someone with a
disability just to live, let alone have
a job, eat out or travel. People who
disregard accessibility most often do
so out of ignorance, plain and
simple. They just don’t know.
Ignorance also comes into play
when talking about a spinal cord
injury. It’s not just a matter of not
being able to use my legs. All the
other body parts below the injury
line don’t work either, like the
bladder and bowels. There is also a
complete (or incomplete) lack of
sensation -- including sex. Try
pulling up your pants while sitting
on them! Wheeling up an angled
slope in a gravel parking lot in the
rain takes a great deal of balance and
energy. Explaining what nerve pain
feels like is very difficult, and
understanding how a urinary tract
infection can make you so sick --
with no real symptoms -- potentially
leading to kidney failure. In these
times, depression can take you to
some dark places.
DARK DAYS, DARKER
NIGHTS: JAN 7TH, 2017
I have started this post many,
many times, but mostly in my head. I
have not actually been writing
because, frankly, I have nothing to
say. Nothing good, that is. I did not
want to write about how crappy I
felt, how absolutely miserable, full
of pain in my body and darkness in
my mind I have been for the past
months. Feeling like there is no way
I can continue to live like this. It was
just not possible. So, I didn't write.
Because this is what it has been like.
Barely able to make it to bed
before falling apart, usually in tears.
UTI after UTI. I scarcely
remembering what it felt like to not
have an infection, to not hurt. To
have my feet feel like they are
immersed in a bucket filled with icy
water. Or the nights the nerve pain
made my feet felt like they were
squeezed into size 6 shoes for a full
day (I wear an 8). My T4 line pain
like a burning hot belt pulled tightly
around my chest -- to the point
where I could feel every breath,
every heartbeat all the way around.
Cancelling appointments. Doing
nothing that I didn't absolutely have
to do. Nothing but watching Netflix
and sleeping until 11 am - so not me.
Pain sucks the life out of the
living.
All the while I am trying to
understand, to figure out, why do I
feel so awful? I had many months of
feeling “good”. Why, now, is the
pain so bad? What is different? What
did I do/not do that I
should/shouldn't have done? What
did I eat that I shouldn't have? Is it
the weather? Is it an infection? What
am I not doing that I should be? And
worst of all, is it all in my head? It is
known that thinking of pain makes
the pain even more pronounced. Am
I bringing this all on myself? And
then my head goes down the road to
the future...how will I ever do the
things I have planned: travel, work,
contribute to society? How?
Dark days and even darker nights.
I last, without tears, until about 8
pm. After that all bets are off and
you would not want to keep me
company. Christmas didn't even
cheer me up for long.
So, what’s the deal?
I have no idea.
I have taken no fewer than three
urine samples for analysis. All were
negative. What? Yeah, right. Try
again. I got to the point of saying,
“when you dip it, it will be negative.
You have to do a CNS (plate it) and
it will grow something.” Here I am,
telling the professionals how to do
their jobs. I was beginning to feel
like a real pain in the ass. Twice to
emerg. A total hypochondriac. I
knew something was wrong. I could
feel it. But because my body is so
fucked up, it could not tell me what
was going on. What was wrong.
Guess what?
I still don’t know.
My doctor called yesterday, and
we had a good chat. No infection. I
no longer feel like a hypochondriac,
nor a pain in the ass. But I still have
no answers. I think I am coming out
of this darkness. I think this only
because I have felt okay for three
days now. Not three in a row, mind
you, but three out of at least 30. I
keep a calendar where I track pain
and meds and any crazy shit that my
body does. I was, back in November,
tracking the days that I had
particularly bad nerve pain. Well, I
stopped tracking the bad days and
instead tracked the good days, which
was easier to do. Because there were
none. Back at that time the pain was
the effect of infection after infection.
Three in fact, back to back. So
naturally in the end of December, I
assumed that’s what it was.
Now, I think that it was a virus. Or
maybe an allergic reaction to the
antibiotics (as would explain the
hives that have come every night for
the past two weeks) and goodness
knows my poor gut is feeling the
effects of those.
So now I am trying to make my
head think that I am coming out of
this darkness. I have to be. It was
one (maybe two?) months out of 18.
I’m no mathie, but in the grand
scheme of things, that’s not a large
ratio. It is so hard to find
perspective. The gains are small now
compared to what they were at the
beginning, and Lord knows my
expectations are still high, but good
things, improvements, are still
happening. It’s just hard to see them.
Hard to remember them.
That’s where my people come into
play. To give me love. Hugs. To
remind me that things are
happening, getting better. Stronger.
Like how, just in the past five days, I
have been able to stand in my
standing frame without my head
spinning (hardly at all). I still need
my people. I can't do this alone and
my poor family, well they need love
and hugs too. What am I saying?
Everyone does.
It’s funny how writing helps. I
manage to spin all these thoughts in
my head into words. Words that, in
order to reflect accurately what is in
my head, should be dark and scary.
More so now than ever. But here I
am, again, trying to find something
good. Flipping it. Do I do that
because I am writing and others are
reading? Or do I do that because I
know it will help me feel better?
Maybe a bit of both.
And, now I will remind myself that
the sun will come again.
It can’t stay dark forever.
Sawchuk encounters dark days on road to recovery
Highs and lows
While Julie Sawchuk found herself with some “dark days and darker nights” in early 2017 (read
below), she would soon find enjoyment in learning to dance alongside instructor Les Cook for
a local Dancing with the Stars competition. Sawchuk is seen here with artwork from her
dancing days, created by her daughter Ella, and a copy of Shine: Inspirational Stories of
Choosing Success over Adversity. (Photo submitted)
Partnership
Julie Sawchuk was paired with Blyth East Side Dance co-
owner Les Cook for a local Dancing with the Stars
fundraiser, through which they both learned a lot about
dancing. (Photo courtesy of Devin Sturgeon)
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