I have been sick since I was just a little girl, we just
didn’t know it. It took around 10 years but I was finally diagnosed with
Multiple Sclerosis in 2003. My symptoms date back to when I was just 9 or 10.
Multiple Sclerosis still is not widely considered a disease that children
develop. It is a chronic, progressive, debilitating disease that needs to be
treated from the beginning but so many of us go years being told that we’re
essentially crazy before finally a neurologist recognizes that the symptoms are
real and goes hunting.
I was still fairly newly diagnosed with MS when I went for a
routine arthroscopic outpatient surgery on my right knee to correct an old
soccer injury. That one small surgery was the spark that ignited the fires of
hell in my life. I developed a life-threatening infection in the surgical
site. After that first infection, my
knee continued to re-infect no matter how many potent antibiotics were thrown
at it. I was even sent to specialist who eventually amputated my leg above the
knee after infection and surgery had completely destroyed it leaving me in
excruciating pain every minute of the day. I’ve spent the last 10 years in the
fight for my life against recurrent infections in my right leg even after the
amputation. I’ve had so many surgeries that I’ve lost count.
I know how to be the patient. I know how to be the one who
is fighting for her life. I know how to be the one in the hospital bed or the
one feeling horrible for weeks on end. I know how to be the one pushing herself
through physical therapy and I know how to be the one living with fears she
can’t quite find a way to voice. It sucks that I now how to do all of these
things but I’d rather it be me. I’ve held on to the severely irrational thought
that if I’m the one constantly taking the medical hits that meant that my
sisters wouldn’t have to learn how to be the patient. Recently it was proven
just how incredibly irrational a thought that is.
I know how to be the patient. I don’t know how to be the
sister of one.
My family was recently dealt a massive blow when my oldest
sister, someone I love and respect and look up to and admire, was diagnosed
with brain cancer. A large tumor was found and removed the very next
morning. We were all in shell shock and
we still are. This is the girl with an incredible intelligence. She’s always
been so sharp and brilliant and even managed to pass her PhD classes all the
while a tumor was growing in her brain.
I’ve been through a lot medically and as a whole the medical
world no longer scares me. I know what I’ll go through with each new infection
and family and friends sometimes turn to me to help them understand medical
situations in their own lives. It is a very rare thing to hear me speak the
words, “I’m Scared” even in my own battle for my own life. I’m also not one to
cry frequently and am very cautious about who I cry around.
The minute I got the call that my big sister had a brain
tumor I felt fear. I saw my PTSD
therapist while my sister was in surgery the following day and I cried. The
minute I was told the news from her first post-operative appointment and
learned just how bad this cancer is I again felt fear but to an even greater
amount. I again saw my PTSD therapist right after and I again cried.
This is my big sister. This is, as life frequently is,
unfair. I’m the one who takes the medical hits. My sisters are supposed to be
protected by that even though I know that’s an irrational thought. I’m the one who was the troublemaker and
constantly caused problems growing up. My sister never did. She was a straight A student with an incredible
work ethic that has only become more incredible as she has gotten older. This
should not be happening.
I’m learning now what it’s like to be on the other side of
this particular coin. I’m learning how to be the caregiver instead of the one
getting care. I’m learning about the emotional rollercoaster my family and
friends are constantly on when I get sick again and again. I’m learning.
I know how to be the patient. I don’t know how to be the
sister of one : but I’m learning.
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