Articles, Blog

Grace on Chronic Illness

February 5, 2020

I started experiencing daily
fatigue and pain when I was kind of near the beginning of eighth grade so I guess
I was 13. I just kind of progressively, like every couple months,
I’d experience a new set of symptoms so it was this kind of cumulative effect.
In January, I’d start experiencing like tingling on my face
and then in March all of a sudden I had like this muscle stiffness that wasn’t
there before and then by July I’m starting to have
abnormal heartbeat, so that kind of thing. It just progressed over I guess about
four years, so I was seeing all of these specialists and people just kind of over
and over they’re like we believe you that something’s wrong but we just can’t
put our finger on it and they just refer me to a different doctor and then they’d
say they didn’t know either. The disease progressed for four
years and then I was diagnosed at age 17 at the beginning of my senior year of
high school. I met a specialist who specialized in Lyme disease and he was
like you have had Lyme disease for four years and the disease has progressed all
of that time. I also had co-infections so with Lyme disease
there’s several common co-infections which just means that when you receive
the original tick bite it’s carrying several different diseases that all kind
of manifest themselves in their own different ways but it also interacts
together. It was hard because there was just so
much uncertainty and kind of the only thing I knew was like well I’m in high
school I really like school I want to get to college so I just kind of focused
what little energy I had on my academics. I kind of had to like sacrifice a lot of
things because key things kept progressively getting worse so even
though I was already in a lot of pain like I was still able to be like captain
of my JV soccer team and like blah blah and then just slowly but
surely I just had to kind of like prioritize where I spent my time and
energy and so that kind of ended up being just like school and then the
school choir and those were the only things I could do. I also missed like two
to three days a week so I had to kind of make special arrangements with the
school. There’s a kind of a little known fact, but like especially in the public
school system, a lot of people with chronic illness are just like kicked out
of the system because they’re classified as truants meaning they’ve broken the
law by not attending school as is legally required to them. So they’re put into like special programs where they have to
be homeschooled even if that child wants to go to school and have that social
interaction they are isolated they’re kind of a challenging factor for
the school so I was really privileged growing up because my parents were able
to send me to a private school and so they were able to be very accommodating
of me and at times it was challenging because they didn’t even have like a
disability or accommodation specialist. I was kind of the only —
one of the only kids getting any sort of accommodation so I kind of just played
it by ear like I told the teachers what I needed and they just gave it to me
because we had a relationship. It was a really small school. I was just really
lucky in that way, we just kind of made it work and I ended up doing really well
like I got into the colleges I applied to and then I kind of just ended up with
this question of like okay “what next?” I got into my dream school of
UCLA, and then, I couldn’t go because they didn’t have any sort of transportation
for students with disabilities so like I went like a couple months like a month
before I had to make my decision and I went and talked to the office of
students with disabilities there and I was like “I can’t walk to class, is there
a way that you guys can help me?” and they’re just like “no, sorry” so like I
couldn’t go there. That was hard, but in the end,
this ended up being the right place for me anyways. It was extremely difficult
and I had a lot of self-doubt because you know, you have to be kind of
I don’t know what word to use, but it’s kind of a gutsy move to be
that sick and be used to having — I had a lot of trouble
doing anything physically so my mom always did my laundry, my cooking
all of that so having that support, going to a small
private school where all the teachers were like super loving. And, just
showing up here, on my own, having to figure it out. It was extremely
stressful. I remember I was — My first quarter here was so hard that
when my mom was driving me back to come to winter quarter I threw up in the car.
because I was so scared to go through that again and yeah I mean it was really hard
because I was trying to do all of these daily tasks that were so hard for me on
top of my academic work which was so much more challenging than high school.
Doing laundry was super painful for me and I just had to
do it because there was no one to help me. Because I was physically limited
and Triton Mobility only ran like unto a certain time like I couldn’t
go to any of the Fall events so there was nowhere for me to go to like make
new friends. I was just kind of like on my own
just had I don’t know how — I just made it through with pure
survival instinct at that point. But, I’m glad that I’d made
the decision to come back and to keep trying because what I told myself was
you know growing is hard, these are growing pains and I will learn how to
adapt to my situation and I did. By the end of freshman year, I felt
confident that I could get come back to school and that things will
continue to get better for me. You know, we all have kind of extra
little things that we’re going through that maybe other people aren’t going
through. With chronic illness, it was hard — I remember
I came here with two friends from high school and they were kind of like my
only friends for a little bit but they both joined Greek life and they’re
like having so much fun and I got so jealous of them watching them be
able to you know have fun and make mistakes and get messy because I didn’t
feel like I could afford to take those risks. I remember just
scrolling through Instagram, seeing my friends from high school at their new
colleges and like all the fun they seemed to be having and all the things
that seemed to be accomplishing and I was struggling so much to just pass my
classes. So, it just put me in this kind of place of despair where I started
to wonder you know — “why am I doing this?” We all face a point in
life where we’re suffering so much that we have to wonder — “why is it worth for me to persevere through this?” When I face that question,
it made me kind of come in to get in touch with my values and what was
really important to me. Should it be so important to me that I
got grades that were you know the best or competitive at this university? Should
it be important to me how many friends that I have? And, I think I started to
realize that you know we live in this kind of broken system and flawed
definition of success where we define success by things that we can’t control
like so many things that have to do with privilege that have nothing to do with
our own personal merit. When we define success through money, by our
grades, by how many friends that we have like these things are things
that are always dependent on luck.
So, I started to think about okay you know I feel helpless here… what can I
do for myself, what is within my locus of control?
And, I realized that the way that I treat myself, the way that
I live up to my values like these are things that I will always be able to do
no matter what I’m going through, even if it’s really really hard. So,
I started to judge my success based on my ability to
live up to those values that I have which are just simple things like it’s
not like they’re my unique values or something but just the values of you
know being a kind person, being someone who
continues to try and who’s resilient in that way and also being a person who is
resilient and that I’m flexible, I’m willing to change my strategies if the
first strategy didn’t work. Defining my success
based on my choice to pursue my passions even if it’s a smaller way that I
originally thought. I’ve tried to contribute to disability advocacy
on campus and honestly like some of my first efforts kind of crashed and burned and
that was hard to go through but I’ve been able to find small ways that I can
still continue to do that in ways that are realistic for me. I think a lot of the time we get to
a season in our lives where things are going really well
and every single times like “oh this is the time where it’s permanent,”
things are gonna be easy from here, you know the whole like narrative of happily
ever after — we’ll meet the right person and that’s just it. We have
achieved– we’ve achieve happiness, there’s no going back, and it’s
like you know the silly thing that we do, and these narratives that we buy
into. I think that something I’ve learned that has been really valuable is
that I don’t you know I take care of myself, and I really take pride
in taking care of myself but knowing that taking care of
yourself is not the same thing as trying to be comfortable all the time. One of
the biggest things for me to kind of grasp has been being able to accept that
life is uncomfortable, life is full of suffering but that doesn’t mean it’s not
beautiful, that doesn’t mean we can’t enjoy it. I think that’s been really huge for me like looking into the future, I don’t
picture a future that is perfect or that is luxurious or that is
comfortable all the time. I picture what I can and obviously when I
picture the future for myself, it’s happy. I’m not like picturing myself, you know,
struggling. Because I’m able to embrace that reality about life, I’m
not afraid of the future because I know that
I can suffer and I can survive it and even in these like times of my life — I
really like to think of life in terms of seasons because we have times where
it’s like winter and it’s cold and you just feel like you know everything’s
gray and then other times where everything is warm and fresh and
exciting and new. Knowing I’ve been through many winters and I
still, that sounds super silly, but I still had found
you know bright points in that and I kind of feel like
you know things that suck suck. It’s silly to say —
sometimes it sounds silly to be like oh “I’m glad I went through that” or maybe
it sounds like disingenuous but I think that we are able to choose to find the
beauty in things. We can’t always choose like what happens to us
but we can choose to make that effort to create something beautiful from that. And that is an idea which has been so
empowering to me that I feel so much more comfortable now with
that uncertainty you know sometimes I do kind of like have those little
breakdowns thinking like “am I always gonna feel this way?”, “am I always gonna
deal with these things?” but you know there’s just no way to know it but if
I’m able to be to find happiness even during these difficult times, then I feel
confident that I will always be able to do that regardless of what comes my way. I would tell her that, you know, even
though you don’t believe that things can change you just you never know and I think
what’s so beautiful about uncertainty is that you know we so often get filled
with anxiety and when we’re uncertain about something we prepare ourselves for
the worst and we completely forget that there’s this entire range of amazing
beautiful things that could happen, and so, I would tell her that when you feel
uncertain and you feel in the state of despair just you know maintain a sense
of hope you know and don’t hope for things to be perfect because they won’t
be and don’t hope for things to be easy because that’s not the way life is. But still hope for your own happiness and
choose to pursue joy in whatever way you can regardless of your situation.
That means choosing to care for yourself, choosing to pursue treatment
even though it seems totally pointless and you know choosing to have fun sometimes even though you’re
tired and choosing to maintain an attitude of you know gratefulness and
choosing to find beauty and create beauty
out of whatever life gives you.

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