I him and haw over what to blog about all the time. There
are always thoughts running through my head. I usually try to write about
something that has happened to me to make me a better person, or make me
realize my mistakes, etc. Then I listened to an episode of This American Life
entitled “Our Friend David”. It was in memoriam of David Rakof, a brilliant
writer who recently passed away from cancer. One of the most poignant stories
in the series was the one highlighting his cancer diagnosis and then his inevitable
death. He spoke about it with such grace that I didn’t feel like I was hearing
of a stranger’s story, but a story of someone I loved. I reflected on how
difficult it must be to write about something so tragic, to write about
something that will change your life forever, to write about death, it’s
intimate.
I have a problem being vulnerable. I don’t believe in
actuality that anyone really likes to be vulnerable, but in my case I tend to
cover up so much of what I actually go through, simply because the thought of
people feeling sorry for me makes me sick. I don’t want people to look at me
with pity. I would rather be looked at with awe. And so I decided to let me
guard down (probably temporarily) and write about the day(s) that changed my
life. Grab a beverage; this might be a long one…
I have this weird habit of rubbing my eyes super hard after
I wash my face. You know when you rub your eyes so hard that when you open
them, it’s a bit blurry? That’s what I did. When I opened them, they were a bit
blurry, but I paid no mind. I went about my normal day, but soon started to
realize that the blurriness was not leaving my left eye. It wasn’t disturbing
at first, just a little annoying, but one night as I sat down at my computer to
write, I noticed that I couldn’t see the bottom half of the page I was looking
at. It was as if someone had drawn a line with sharpie marker horizontally
across my eyeball, then blackened in the bottom part. It was time to go to the
doctor.
Local urgent care told me they thought there was a piece of
something behind my eye. I figured with all the rubbing I had done from the
towel, I probably scratched something or rubbed something right in. I was
referred to an optometrist. I was waiting for results after several crazy
tests. I sat in the lobby, I remember this sweet old woman who was sitting next
to me asked, “are you ok, dear?” I replied “oh yeah, I’m just waiting for
results, the doctors think I have something in my eye.” She smiled at me,
seriously one of the warmest smiles I’ve ever seen and said “I’m sure things
will be just fine dear.” I thought it was an odd response to something that I
was feeling was no big deal. The doc returned and told me that I was definitely
experiencing vision loss in that eye from what they believed was something
called Optic Neuritis. It was briefly explained that this was an inflammation
of the nerve behind my eye and I would be referred to a neuro-opthamologistat. “Well
that makes sense.” I thought. I probably rubbed my eye so hard that I caused my
nerves to become really irritated. I called my mom, I have been to a million
doctor appointments in my life (that’s not an exaggeration) and I know when I
want my mom there and I know when I don’t. I didn’t feel like this was a big
deal, but she insisted saying “I know, but I just think I should come.”
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| An example of what some patients with Optic Neuritis see. |
The next morning I waited in a cold gray room for my neuro-opthamologist.
I remember now thinking how dank that room seemed, like nothing good ever
happened there. The lights were too low and there were too many unfamiliar
objects around. My mom and I joked as we always do when waiting for a doctor.
We caught up on family news and then my mom mentioned a friend of hers, Tom*.
Tom had been suffering from Multiple Sclerosis for quite some time, and my mom
would always ask about his progress when she saw him. She told me how she had
recently ran into him and how well he was doing and commented on some new meds
he was taking. We both talked about how nice he was and how upbeat he was even
with a debilitating disease.
Neuro-opthamologist walked in. He sat down on his cold metal
stool and looked at me. “Well, you do have optic neuritis.” He continued, “And
I’m sure you know from googling it that it is the first sign of Multiple
Sclerosis.” I’m not going to lie; I cannot remember one single word he said
after that. I became cold instantly. I looked at my mom and I could feel the
tears coming into my eyes. I started to cry. My mom took my hand it was cool to
the touch and made me feel like a little girl. She spoke to the doctor; again I
had no idea what they exchanged. I knew nothing about Multiple Sclerosis,
besides what I had been told about Tom. I knew it caused people to use
wheelchairs and expensive drugs, but aside from that, I knew nothing. I felt
like I had been slapped in the face. I couldn’t stop my tears. The doctor left
us with a referral to a neurologist and steroid treatments.
I remember getting in my mom’s car. I remember her calling
my stepdad and crying. I remember calling my then-husband and telling him. I
don’t remember the ride home. Looking back now, it seems like I cried for days.
I remember at one point putting my head in my mom’s lap, still not knowing
anything about this disease and saying “I don’t want to die.” She hugged me
close and through her own tears said “oh honey, you are not going to die.”
The days after that ran together. I went in for the steroid
treatments. Steroids are not new to me. I have taken them since I was a kid for
my asthma. They are both a nightmare and a wonder drug. A “normal” dose when
treating an asthma attack is somewhere between 100 – 150mg tapered off over
time. Unfortunately for me, I’ve been on steroids so much, that I experience horrible
side effects including disabling joint pain, terrible mood swings, extreme
hunger and weight gain as well as hair loss.
I’m usually able to convince my doctors to give me a 50mg dose and taper
from there. However, the recommended dose of steroids for someone having a
multiple sclerosis “attack” or “relapse” as they are sometimes called, is
1000mg via IV for 3 days. I cried again.
Now I sat in an old patient hospital room. The beds had been
moved and replaced with fake leather type arm chairs. Sort of like the chair
you sit in at the dentist. It was explained that a nurse would insert an IV and
they would administer the steroids over the course of an hour. The first thing
I freaked out about was the IV. I have had terrible experiences with IVs in my
life. Because of my asthma and I suppose some genetics, I have small, flat
veins. I’m terribly hard to start an IV on and it usually takes more than once
to get a good stick. The second part of this ordeal that terrified me was the
thought of having an IV port in my arm for 3 days. Since I would be having this
treatment 3 days in succession, the nurse thought it best to leave my IV in so
they didn’t have to restart one each day. I felt lower than low. Might as well
wear a sign that says “I HAVE A DIESEASE”.
At this point my mom
had gone home. I cannot remember how many days exactly were between the days I
was diagnosed with optic neuritis to the day I started treatment, but I know it
was quick. I was scared and alone. My then husband was at work and
wouldn’t/couldn’t take the time off to go with me to my treatment. I remember
sitting in that off white dentist type chair sucking on a piece of candy.
Because of the rapidity at which they were administering the drug, I would
acquire an awful taste in my mouth. I started up at the tv that was turned on
for me and for the first time since this happened thought “why me”?
I’ve had my fair share of medical issues in my life. I spent
a great deal of my childhood in the hospital or at home sick. I was even
homeschooled for a brief period of time when I was too ill to go to school. I
had terrible asthma, disgusting eczema and a plethora of allergies and now I
was looking at the possibility of Multiple Sclerosis. I still kept a faint
light of hope in the back of my mind, that maybe…just maybe, I would see the
neurologist and he would tell me this was just a fluke incident. I held on to
my eye rubbing theory, even though in my heart I knew it wasn’t true.
For anyone who hasn’t had an MRI let me tell you, it’s an
experience in itself. I lay on table maybe three feet wide. My hands are placed
on my stomach. I had a brain/spine MRI, so I had my head locked in place by
something I can only compare to a vice grip. It’s tightened around both sides
of my head. Not to the point of pain, but it’s definitely uncomfortable. Then
they placed a sort of mask over my face. It reminded me of a hockey goalie’s
mask. You could see out of it, but it was close to my skin. Then I was rolled
backwards into a metal tube. I got to wear headphones and listen to “music of
my choice”. Really? You’re sticking me in an open ended coffin and you want to
know if I want to listen to Lite Rock or Bach? I was in for an hour. I was
rolled out briefly so a tech could administer a dye into my body. The dye would
highlight any lesions on my brain that were “active”. That hour may have been the longest of my
life. There isn’t much to do when you’re stuck in a tube, but think and think
and think.
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| The green highlighted areas show "active" lesions in an MS patient. |
I met Dr. Garreth Parry the second week in December 2006. To
this day I think of him as one of the kindest persons I have ever met. He saw
me right after my MRI. I remember how kind his eyes were. When he spoke to me I
felt a sense of calm. He sat down and explained to my mom and me what he had
seen on my MRI. I had an “active” lesion which was what was causing my optic
problem. There were also several other inactive lesions. They are sort of like
little scars left on your brain after an MS relapse. Because of the number of
lesions, active and inactive, that were spotted I was diagnosed with Relapsing
Remitting Multiple Sclerosis. Dr. Parry explained that this was not a death
sentence and that many people with MS lead very active normal lives. He
explained that I didn’t have to start any medication right away but the option
was there if something happened again.
I left his office feeling both anxious and relieved. I was
relieved that I would regain my sight, I was relieved that I was not going to
die, I was relieved that my MRI wasn’t worse than it was, but I was anxious, now
I entered into a waiting game.
The ironic part of this story and my diagnosis (and why I
often believe this was bestowed upon me) is the fact that Multiple Sclerosis is
unpredictable. I could at any time, even as I sit here typing this, lose
feeling in my feet, feel tingling in my hands, experience painful muscle
spasms. There are no warning signs; there is nothing to prevent another attack.
It’s a waiting game. Anyone who knows me well enough knows I am a
self-proclaimed and medically diagnosed control freak. I like things done my
way, in my time, under my circumstances. With this disease, I can’t do that and
it was initially driving me crazy! I had more anxiety about what could happen
than I did about what actually happened. It took a very long time to come to
terms with the fact that just because this is my body and just because I am
bossy, does not mean I have any control as to what goes on inside. Sure, I can
do some preventative measures. I can keep out of the heat and eat healthy. I
can exercise to keep my muscles in shape, but I can’t stop another attack from
happening.
It is five years later now, almost 6 actually, and aside
from a few strange feelings I’ve had in my limbs, I have not had another
diagnosed relapse. My MRIs continue to go unchanged and there are some days
when I don’t even think about having MS. Most days I do think though. Sometimes
I have pity parties. I am terrified to imagine what my life might be when I get
older. Will I be able to handle having children? Will I ever be in a
wheelchair? But more frequently I think of how lucky I am. I have been dealt a
shit hand but I feel like I’ve managed to play my cards right. My mom constantly
reminds me of the good things in life. My friends and family have been 110%
supportive, offering up any and everything I could possibly need, and my sweet
boyfriend looks at me with eyes that hint that he doesn’t see a single thing
wrong with me. And last but not least I have Luxie Lou. My lou dog. I can’t
help but smile while I type this. She has been with me every single day since
this happened. No matter how sad or pissed off I’ve been because of this, she
always greets me with her wiggly butt and happy tail. I’ve found it’s those
simple things like that, that keep me going every day.
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| How can you not love that smile! |
I didn’t write this so people would pity me, I wrote it to
prove to myself that I shouldn’t be ashamed of the person I am and have become.
I wrote it so other could understand why I’m sometimes a crank. I wrote it
because I’ve never told some of those details to anyone. I don’t have a cute
quippy ending for this post, quite simply because this disease changes me every
day. It changes the way I look at my life and the lives of others and because
of that, I don’t think I can end this with a ‘lesson learned’ sort of
paragraph. So I shall end with this: “The lotus is the most beautiful flower,
whose petals open one by one. But it will only grow in the mud. In order to
grow and gain wisdom, first you must have the mud --- the obstacles of life and
its suffering. ... The mud speaks of the common ground that humans share, no
matter what our stations in life. ... Whether we have it all or we have
nothing, we are all faced with the same obstacles: sadness, loss, illness,
dying and death. If we are to strive as human beings to gain more wisdom, more
kindness and more compassion, we must have the intention to grow as a lotus and
open each petal one by one. ” – Goldie Hawn
