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Interview
with 18 year old Megan
Lawler:
Life After
Her 7th Grade JM
Diagnosis
Special
thanks to 14 year old JM patient Morgan Gaither
for preparing the interview
guide.
 
Megan,
in treatment, at 13
Megan, Prom Queen, at
18
When
were you diagnosed?
I
started noticing signs at the beginning of
summer before 7th grade, and I was diagnosed the
first day of 7th grade. It was really,
really severe. It had gotten to the point
where my doctor, Dr. Pachman, had to admit me to
the hospital for 2 weeks. I couldnt stand
up from the toilet, couldnt get out of bed, I
couldnt walk up the
stairs.
How
has your disease
progressed?
I
have watched it progress from really, really
severe to getting better and better over
time. I have had a few scares,
though. There have been some times when I
have been nervous when Ive gotten a little bit
of sunburn that I thought I was going to have a
flare. There have been little ups and
downs in the road, but no times when Ive had to
go back to the hospital, no times when it has
been really, really
bad.
Tell
us what it was like when you were first
diagnosed in 7th
grade.
I
actually missed the entire year of 7th
grade. Once I got out of the hospital, and
was starting to get better a few months after
that, I had a tutor come, and we went through
the school stuff.
I
think the hardest part was the fact that it
happened during 7th grade. This is the time when
you are supposed to be coming into your body.
You are hitting puberty. You are
starting to understand yourself and find out who
you are and become a teenager. And I not
only had to deal with this, but it completely
changed my body. It was probably the worst
time to have to deal with
that.
I
did keep in touch with my friends, though, which
helped. I have always been a pretty social
person. I have a good group of best
friends. They were so supportive.
Theyd come over for IV treatments and sit with
me. Theyd watch movies with me. I
had a lot of support from the community, my
family friends, and especially my friends.
When I was in the hospital, I got cards and
presents from them, and people came to visit me
in the hospital. I had really great
friends who were really supportive of
me.
As
time went on, did your friends remain
supportive?
They
have been supportive, but when I was first
diagnosed and in the hospital, there was the
whole shock factor. They saw me in the
hospital. They saw me getting the
treatments.
As
time went on, in the next few years, even though
I will still massively dealing with this, I was
still on medicine, going to occupational and
physical therapy, I think it just didnt really
hit them that I was still dealing with
this. Theyd see me starting to act like
my everyday self, being able to hang out with
them. They didnt really think about it
even though in my life it was a huge thing I was
dealing with, but for them, they didnt really
think about it as much, even though for me it
was a huge deal.
How
did you cope with not receiving as much ongoing
support?
It
was hard. Most of my best friends knew
about it. I would talk to them about how I
was feeling and how I still felt down that I had
to deal with all this. The hardest part
was about my appearance. I had gone from
this athletic young girl, and all of a sudden, I
had just blown up, and at that age I was really
self-conscious about myself. I think that
was the hardest part. My best friends were
really supportive of me, but going to school,
and people forgetting I was dealing with this
disease and just seeing my outside appearance,
that was the hardest part. At first,
people didnt say anything because they knew I
was in the hospital. Later, when I still
looked like I did, but I was acting more normal,
it was more about my appearance. There
were a few things said about my appearance, but
I had great friends, and I didnt let anything
get to me.
Did
you ever go to counseling to help you deal with
things?
I
went to the school counselor a few times.
I brought some of my friends to make it
fun. I did that while I was in middle
school. After that, I didnt, but I did
have the resources
available.
What
was the hardest part of going to school with
this disease?
The
hardest part of going to school with this
disease was getting back on track after missing
that whole year of 7th
grade.
Also,
with my appearance in general, when I entered
high school, there was a huge pool of people who
didnt really know what I was dealing
with. Everyone at my middle school, for
the most part, knew what was going on. But
when I got to high school, no one knew my
background, they just saw my appearance.
By the time I entered freshman year, it had
gotten a little bit better, but they still saw
this person without knowing what was going
on. That was really hard. People
were making judgments without really knowing
what I dealt with.
How
did you cope with people making judgments about
you without knowing about your
disease?
Freshman
year I had my Make a Wish granted. I was
able to fly out to California,
meet Ty Pennington, and go to the Extreme
Makeover-Home Edition which I was obsessed with
at the time, and go see a taping of the
show. So my sophomore year, they printed
an article in my school magazine. They do
monthly bios on people, so they did it on how I
had a Make a Wish granted. It gave a
little bit of background information about my
disease. I had a lot of people coming up
to me afterwards saying Megan, I had no idea, I
had no idea that you went through this. I
definitely think it put things into perspective
for some people. Being open has definitely
really
helped.
How
did you deal with prednisone and steroids in
general?
This
is definitely the hardest part for me. I
cannot even tell you how much I despise steroids
and prednisone after this. It was really,
really hard. I literally just wanted to
eat all the time. Everything around
me. All the time. One thing that
kind of helped was I started going to a
nutritionist. She made sure to get protein in my
diet so it would fill me up faster and just
figure out little tricks when I was starving and
feeling hungry, just different snacks and
healthy things to eat instead. This with
the whole moon face, hair on my face and all
over, and weight gain was the hardest
part. I gained like 60
pounds.
It
was just terrible. I was an athletic thin
girl. I played basketball, I played
volleyball. I was really into sports,
really active. And then all of the sudden
I cant even walk up the stairs. I would
look at myself in the mirror and be like who is
this girl? I just thought I was some sort of
monster. I had gone from this athletic
girl to all of the sudden not even being able to
get out of bed. And the hardest part was
with prednisone and this disease is that Id eat
so much all the time, Id be so hungry, yet at
the same time I couldnt work out at all.
I couldnt eat a ton of food and then go to the
gym and work it
off.
The
hardest part was
I was gaining this weight and
looking like this when it wasnt even my
fault. Its not like I had all the sudden
just wanted to eat all this. The medicine
was doing it all to me. And that was the
hardest part. It was so out of my control.
I kept feeling like I never brought this upon
myself. Of course, there was the
woe-is-me-why-me, attitude, but the hardest was
that this was so out of my control. Not
just the disease, but at the same time, my
appearance. I had never wanted this.
I had never wanted to bring this upon me, and
now all of the sudden, I look in the mirror, and
Im this totally different
girl.
How
did you cope with this change in
appearance?
As
far as appearance-wise how I kind of started to
cope with it
I have always been a friendly,
social person. What I think I did to cope
with it
To have people look past my appearance
and actually see who I was, I really just came
out of my shell, Ive never really had a shell
to begin with, Ive always been kind of loud and
obnoxious, but I became really funny, really
talking all the time, being really loud, and
social, and being that funny, jokester person,
in hopes that people will look past my
appearance and see who I actually
was.
What
about the sun? Was that an
issue?
The
sun has always been an issue. Ive always
been the pale one of my friends. You look
at pictures, and I stick out like a sore thumb,
but it has been really hard, and that has been
one of the things with my friends, as time went
on, when there would be points when they would
forget that I was dealing with this disease, and
especially in the summer time theyd want to
be going to the beach or even just riding bikes
through the neighborhood. I would always
have to have my sunscreen and put it on.
Wed be out, and they would want to go to the
beach, and Id have to say, Oh, I cant. I
dont have my sunscreen. Its definitely
been a hard thing to deal with, literally having
to live like you are allergic to the sun, but
Im always carrying SPF 45 with me, Im always
trying to cover up as much as possible, Im
always the one jumping from shade to
shade.
Literally,
I probably heard this a million times from my
mom. You are going to have the most
gorgeous skin when you are older. So, Im
hoping for that. Im hoping to be 40 and
look young.
What
keeps me putting on the sunscreen is that Ive
heard stories of kids. There was one guy,
who this one time, he just forgot to put on
sunscreen, it was kind of a cloudy day, but he
was outside in the lake tubing and stuff, and he
got sunburn and had a relapse. And every
time I go out, and even if it is just a couple
of hours or something out in the sun, I always
remember that story, and I always still put it
on. Me wearing this hat or me putting on
this sunscreen that will save me from going to
the hospital or getting on these meds again
I
will do whatever it takes because there is no
way that I want to go back into what I had to
deal with before.
How
has your family dealt with the
disease?
My
family has been amazing. My mom is
actually a nurse. That has really, really,
really helped out. As far as dealing with
my medications, with my doctors appointments,
shes been a huge help, and managing when I get
my blood drawn, and all that stuff. She
actually took time off work to stay with me when
I was at home and really took care of me
then. My entire family and relatives have
been really, really supportive and have always
really been there for
me.
How
have you been able to maintain a normal
lifestyle?
Now
being in college, I try to maintain it by
remembering all my meds. My mom is not
here with me, so I have to set them all up by
myself and get the prescriptions and
stuff. I went through those years of
occupational and physical therapy. Getting
through that, making myself stronger.
Keeping up with my strength and stamina.
Keeping up with my doctors appointments and my
meds and all of that. Just falling into a
system. Knowing in the back of my mind
that I have this disease. Always having to
keep track of my meds, my appointments, all of
that. Me and my mom and all my doctors,
weve gotten into a good pattern of keeping this
remission sequence going, and I think we are
doing a pretty good
job.
How
do you think JM has affected the person you are
today?
It
has made me a stronger person. I always
have the perspective in mind of what Ive gone
through and how its changed me. It changed me
so much physically, but I tried my hardest to
not let it change me emotionally or change my
personality. I didnt want it to put me
into a slump. I didnt want it to make me
into this cynical person. I tried my
hardest to keep my faith up, and of course it
was hard. I had to keep those motivating
words from my mom and friends in mind the entire
time, but I just tried my hardest not to let
it. All this changed me physically, and I
didnt want to let it change me emotionally or
personally.
If
you had a choice, thinking of every way JM has
affected your life, would you choose not to have
this disease?
That
is so hard. Obviously, immediate reaction,
of course, I wouldnt want to have to go through
all this, being in the hospital, missing school,
physical therapy, occupational therapy, the
medicine.
You
think of all that, but at that same time, if you
think about how much Ive gained from this, how
much I think every kid gains from this
Its
given me a whole new perspective on life.
I try not to take my health for granted.
It has definitely made me a stronger
person. I know I can get through so much
more now. It has kind of given me the
everything-happens-for-a-reason attitude.
It has made my faith a lot
stronger.
My
whole outlook on how fast your life can change,
and how much you shouldnt take anything for
granted. It has given me a perspective
that only people who have dealt with these
medical issues can have
And I feel lucky enough
to be able to have this
outlook.
And
so thats a really, really tough question, if I
actually had to choose, but the fact that Ive
gone through this and that I have that
perspective, Im really, really grateful
for.
Have
you noticed anything that helps or doesnt help
you with JM?
I
think having a really great support system like
I am lucky enough to have with my family and my
awesome friends. Surrounding yourself with
people who will understand whats going on and
help you through it as much as
possible.
What
was it like to be voted Prom
Queen?
Oh
my gosh. It was awesome. It was so much
fun. It was an awesome night. It
just felt so amazing to be up there.
Especially for me personally, just standing on
the stage, with my little crown and stuff, and
knowing just 5, 6 years ago, I had been stuck in
the hospital, not even knowing what is going on
in my own body, feeling horrible about myself,
and then to have come to this point where I have
been loved by my peers and being able to feel
really great
inside.
It
just shows the transformation that can
happen. Ive gone through this disease,
but in the end, Ive hopefully let it make me a
better person. It just made me feel like
Ive gotten through this all and it has been
worth it. And Ive become a better person
because of it. And just standing there as
prom queen was
awesome!
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