I was only thirteen when my mother
took me to a national, annual VHL conference in Palo Alto, California. It was
basically a gathering of doctors and patients that met with the intention of
discussing the disease and all the new medical breakthroughs that had been made
that year. I wanted to take it seriously, after all my father had just died of
complications from VHL only months earlier but, unfortunately, my age took
precedence over my desire to soak up all the information. If memory serves, it
was a three day conference that began at 8 in the morning and lasted until 6 at
night, (a vast majority of that time was designated for the three meals of the
day, breaks, socializing etc.) but several hours were carved out for doctors to
give speeches about their medical research. I went into the lecture hall on the
first day with my pen and paper, all ready to take notes and be studious and
within 30 minutes I was fast asleep. It turned out they were more lecture then
speech, they used a lot of medical jargon I didn’t understand, and from this it
was clear that these doctors were used to talking to medical students. As an
adult, I would have taken this as a challenge, recorded the whole conference
and paid attention to every word; trying to understand as much as I could and
Google whatever I couldn’t…but as young teen, despite my best efforts, I spent
most of those three days either sleeping or doodling.
The speeches were a bust but I had
high hopes for meeting other kids my age with VHL. I was the only child on my
dad’s whole side of the family, though my father and uncles had the disease, I
was eager to find someone who could relate to balancing middle school life and
a potentially deadly illness. I needed to see some other smiling, youthful
faces so that we could have a dialog about how it was hard but manageable. I
told myself this all the time but having it reaffirmed was something I was
desperate for. As it turned out, there were no kids there. Rationally, I can
see why, these lectures were aimed at a much more mature crowd and I am sure
that no adult wanted to drag their teen along, rolling their eyes and
incessantly asking “can we go home now?” but at the time I was disappointed.
Even though I didn’t meet any other
teens, I did get approached by several parents who asked me very in depth
questions so that they could better relate to their kids. I specifically
remember one parent who had a child with a spontaneous mutation (this happens
in 20% of cases, both parents are healthy but the child has VHL) who told me
that his sixteen year old was not dealing with the news of his diagnosis as he
should and since I seemed to be handling chronic illness fairly well, would I
mind emailing him. I said sure and I took the email address but I never
contacted him; I was hardly holding myself together, the last thing I wanted
was someone else’s wellbeing in my shaky hands. Retrospectively, I still don’t
know if this was a good or bad thing. Maybe I could have really helped him. I’m
sure he felt isolated and the help his father asked me to give was exactly what
I had been hoping for if there were other teens at the conference. On the other
hand it could have been extremely insulting for a sixteen year old to get
advice from a thirteen year old and I had only been diagnosed two years
earlier, it isn’t like I knew a whole lot on which to advise. I am also not
joking about my mental state. I had just watched my dad deteriorate over eight
months into a shell of what he had once been and then die; I was not in any
condition to be someone’s support.
So it seemed that all the things I
had hoped to gain from the conference were not going to happen. What I did get,
was something I had not anticipated…and perhaps something I did not want: a
gruesome look into my future. This was the first and really, the only time I
had been around other people with the same disease who were not directly
related to me. Most of the patients there were between 30 and 70; all of whom
had stories about what they had been through as a result of VHL. I was regaled
with accounts of lost eyes and pieces of brain, cancerous kidneys; pancreas and
liver resections and shown innumerable scars, some healed, and some still
fresh. For each of them, they were telling tales of triumph and perseverance;
for me, it was like getting a visit from the Ghost of Christmas Yet to Come. It
was ominous and menacing, and worst of all, inevitable. I felt beaten.
The fear from witnessing that
didn’t last forever…but it did last about six years. Granted it was not
something I thought about weekly or even monthly but there were times it
haunted me. Assignments from school like “where do you envision yourself at 30
and 40,” or when it came time for college applications and I had visions of
surgery scars dancing in my head and I’d think to myself “should I even bother
applying? Will I have time to finish before my health goes to shit? What if I
just start a career that I love and get sick?” After a few years, I pulled
myself back from the jaws of depression (not fueled by this encounter, I assure
you—read my other blog posts to learn more) and as my outlook got better, my
memory of this conference got better too. I realized what a point of pride it
is to stare down Death and live to tell about it. Now I have my own surgery
scar to traumatize kids with (lol). For years I had images of an old woman
(probably in her mid 70s) tapping on her eyeball to show it was glass. She told
me that she had lost it due to retinal tumors when she was about 40. At the
time I was petrified but now it’s inspirational. She was so happy and old…which
sounds disrespectful but it means that she lived a long life, eye or no eye.
That’s the positive outlook I want to have. I may be in the same position now,
I won’t know for a few more days but I might need surgery to remove a tumor in
my right retina and one of the possible risks is eye loss. Where there was once
horror, now I find a glimmer of hope. If things do go badly, and I end up
losing my eye, it won’t be the end of the world. Sure I’ll be sad and I’ll cry
with my one remaining eye but I’ll live and hopefully a long time.
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