When
I first wrote this introduction 6 years ago, I was 3 years into the diagnosis
of hypophosphatasia and life had only just begun to change.If you sat next
to me, there are a few things you might notice right away. I talk a lot, and
sometimes way too much. I love learning, asking questions, asking more
questions, and getting problems wrong and then right. Most people call me a
know it all but I really hate that about myself that I sometimes come off as if
I think I know everything when the reality it is just the opposite. I am an
outgoing college female and I am very active. I used to do a whole list of
things: tennis, swim, volunteer for various organizations, coach, nanny the
occasional ankle biters, cook amazingly delicious meals, have random nights at
Walmart with friends, play president of a club, worked as an EMT, work as a
caregiver, was a full time student.
That all
looks different now.
My name is
Julia, and I am 25 ¾ years old. The ¾ matters because that’s another 9 months
that I have lived and I feel like that those months matter a whole heck of a
lot. If we just stopped at the 25 mark we would be ignoring some of the biggest
ups and downs that life has thrown my way in the past, well nine months.
In 2011 I had
stress fractures that didn’t look great on MRIs and certainly were not healing.
A few gut instincts of amazing physicians lead to going down a rabbit hole of bloodwork
and then genetic testing. That’s where I got my diagnosis of hypophosphatasia
at age 17. At the time I was still playing competitive tennis and would get to
even play my freshman year of college with some minor adaptations. My life
looks completely different than it did when I was first diagnosed, because hypophosphatasia
is a progressive disorder.
I stopped
counting after 38 fractures but in the past year I have lucked out. Really only
3 “ish” stress fractures and one traumatic fracture (not caused by overuse).
This all comes down to that life has
changed. I physically can no longer run without fracture. Even the modest mile
could lead to a stress fracture let alone walking could do similar damage. I
don’t do any contact sports, at all. No rec basketball, soccer and no more
skiing for now. I could go on the list of the crappy things but I think the
real reason you want to read my story is because I took what my best friend
told me and ran with it (well rolled with it). “You are competent and capable,
you will be wildly successful and it just might look different.” -Katie Eckert
She was
right. I was going to be WILDLY successful. Like do a marathon in under 5 hours
wildly successful. She was also right it would look very different.
In January
of 2019 a friend encouraged me to pursue what is called pushrim, the wheelchair
adaptive equivilant to running. Special gloves are used to punch or push-rims
to move the chair forward. Keep a look out for the sport at the beginning of
all the major marathons and the Olympics too! Tatyana McFarden is one of the
most famous push-rim athletes for many great reasons!
A few calls,
way more than a few actually, later I found myself setting up an appointment
with a recreation therapist at Craig hospital. Craig is a world renown hospital
for spinal cord injuries and traumatic brain injuries, but also really amazing
in supporting the community. Chris, my now rec therapist, took me to the “toy
room” at Craig which houses all of the athletic equipment. We briefly looked at
handyclces (most people were encouraging me to do this at the time) before I
spotted the pushrims and ignored everything else. I told Chris, I want to do
push-rim.
The first day I just got to sit in the two chairs at Craig and see
what it was like. I remember the joy and the butterflies in my stomach. I get
that same feeling at every start line I touch with wheels now.
A few months
went by and Chris and I were able to do some fitting as best as possible in a
chair and take it around outside the hospital briefly. April rolled around and
weather allowed us to take the chair, the one that kind of fit but not really,
to the track. I will never forget how ridiculously hard it was to push the
chair around 3 laps over close to an hour of time. Literally less than a mile
took forever. It was hard it sucked and I absolutely wanted more of it.
The following
months were not without challenge of their own. I spent a total of 65 days in
the hospital from January through July. I battled sepsis from my port after
being on multiple rounds of antibiotics in attempt to prevent the sepsis. The
worst of flairs from my other disease, mast cell activation disorder, consumed
my life. My friends became pros at knowing where the closest hospitals were and
what to do when I turned blue. They knew what to say to doctors who said “she’s
doing this for attention,” and how to support me through it all in the best
ways possible.
In July came
a breaking point. I wasn’t making wise decisions and took a huge risk that had
huge consequences. A trip camping out of state led to a two-week hospitalization
for sepsis in a whole other state. Almost alone. Family friends that I had met
only once visited every other day during those two weeks while all of my closest
people were hundreds of miles away. I wasn’t a stranger to hospitalizations or
being far from home home but I had always had friends nearby in my college
days.I missed a
lot of important things during those two weeks and came home very sick. With a
boot on one foot, supposed to be on crutches, a central line in my chest hooked
up to IV antibiotics 24/7. . .I began to truly change the direction I was
headed. After years of barely managing my world and mainly putting bandaids over
things that needed stitches and seriously healing; I started to truly take the
time it requires to recover. A luck of the draw with circumstances led me to
dive deeply into stand-up comedy as I took baby steps to recovering.
Laughing
over how crappy I looked with a hole in my neck (my permanent trach), my IV
line, an broken foot, gave me traction to keep moving forward. The support I
found in my community of comedy was just what I needed to find reason to make
the wise choices that would lead to some pretty amazing opportunities.
With a
central line in my chest still and on iv antibiotics, I reached out to Lisa the
Green Events Race Director out of Fort Collins, CO. I simply asked if it would
be possible for me to race in the human race 5k in a pushrim chair. With no
experience with a pushrim, she did the research and made it all possible. I
borrowed the chair 3 days before the race (remember with only ever having done ¾
of a mile around the track) and set my sights on my first 5k. I remember going
over and over the course. It really wasn’t complex. A down and back with a
slight uphill (which I quickly learned would feel like the biggest climb of my
life) for the first mile and half than a slight downhill. By slight I mean any
normal runner on two feet would think you’re crazy if you mentioned there was a
hill. 50 feet of incline over a mile and half is nothing to fret. So in my head
I decided I really was only doing a 1.5 miles. If I could do .75 I could double
that. It might take forever but I could.
She believed
she could so damn right she did.
I did my first 5k in pushrim coming it at 37
minutes and guess what?! I won my division and was invited to do my next 5k. In
October of 2019, the real blessing came when I found Achilles International, an
origination dedicated to making accomplishment possible for athletes with
disabilities using mainstream activity. I did my first 15k which quickly turned
into doing a half marathon and then the craziest of things happened. I traveled
out of state to do my second half marathon in Las Vegas and I didn’t end up in
the hospital! I made wise choices, had the support and turned my can’ts into
cans and dreams into plans! The next craziest thing happened I did another half
marathon in another state! This time I traveled alone, but was never alone that
weekend. I even got to perform stand-up comedy on a showcase in the same city I
was running in!
Two weeks ago,
to the day, I did what I thought was just a crazy idea. With lots of training,
binge listening my favorite podcast (Ali on the Run), and a whole heck of a lot
of support and sacrifice. . .I did 26.2 miles as a pushrim athlete in 4 hours
54 minutes. I was the first female physically challenged athlete to cross the
finish line in Phoenix, Arizona!
So yup, I
break easily. I struggle with the basics big time right now. My life is
completely changing in how I do it. I am going from the girl who could play 6
hours of tennis competitively to the girl who uses a day chair to go to class
and get around campuses. But the difference between shoes and wheels is the
difference between walking the driveway and 26.2 miles.
Let me finish
with this.
You are capable,
you are competent. You will be wildly successful. It is beyond okay if it looks
different than the person next to you or the plan you had yesterday. Celebrate
what is possible.
“Start where you are, use
what you have, do what you can.” -Arther Ashe.
