Before I start, I want to say thank you to those who read
and reached out after reading the last blog.
Look everyone, Little Lisa is here and I’m all grown up and in a place
to share my journey.
1987 – 1996 is what I refer to as my personal dark
ages. Hands down it was the ABSOLUTE
WORST PERIOD OF MY LIFE! Typically,
people thrive and glorify their high school days—whereas, I hated high school. I won’t pour into exactly why, but just know
it had to do with physical appearance and physical ability and the lack of
both.
Let’s get into the Dark Ages, shall we?
After having my first blood transfusion I had a regular
doctor, Dr. Sepa. Dr. Sepa was a
pediatrician—a great man, but you could tell for me as his patient he had to
dig a little deeper into this Sickle cell disease in order to have a medical plan
of action.
Keep in mind I was now in a
house with an 80-year-old man, so we’re GENERATIONS apart. My mom is in her own world, my uncle moved to
Seattle with his girlfriend (now wife), and my dad was establishing his new
family that I only saw on the weekends.
Therefore, I had no one to go with me to my routine doctor’s appointments. My grandfather would drive me to the
appointments, but he would either wait in the car or lobby until I was
done. I think it was because he didn’t
want to try and fully understand all of the medical jargon of what was going on
with his grandbaby. He knew his
grandbaby was sharp as a tack and I would understand more than he could of what the
doctors were saying. Luckily each time
I’d go to the appointments, and they ask, “Is anyone here with you today?” I’d confirm that my granddaddy was in the car
and he’d be in soon, but that was a little white lie. So from 13 – 18 years old as a pediatric patient, I went to all of my
doctor’s appointments alone. I was a CPS case waiting to happen.
Go ahead, let that sink in for a moment.
I was just in the hospital for a blood
transfusion. I have a BLOOD DISORDER! I
was 13, and NO ONE went to these follow up appointments with me?!?! Ask me if anyone would follow up with me in general? Mom?
Hell no. Dad? Didn’t care.
Uncle? Sometimes. Granddaddy, only when I got in the car and
even then I’d just say, “oh everything is okay.” The
only time my dad and I would really have a conversation about health is when
I’d get my new Group Health insurance card because I was on his insurance. He’d ask, “Have you been going to the
doctors?” I’d say yes. Then he’d say, “Okay, here is your new
card.” That was it. Nothing more. As I got older, the questions would
change.
My mom: “have you
started your period, yet?”
Me: “No”
My Mom: “okay good”
That was it. I was
16. Now, for most girls they start their
period at 13- 15 years old. You’d think
a mother would say, "hmmm, you should’ve started your period by now, what does your
doctor say?" Her only concern is that I
didn’t end up like her, pregnant at 17.
One of the most memorable doctor appointments I had, Dr. Sepa explained to me the importance of my health and that reality of having Sickle Cell was that I would not live past 55 years old. Again, imagine a teenager hearing that their life expectancy was 55 and processing that information alone. While 55 seemed far away, it planted in my head that basically I could die at anytime. This did a number on ANY expectations I had in life or for myself for A LONG TIME!
If you remember the definition of Sickle Cell, it described
two key factors that would be vital to a teenager in high school: delayed
growth and extreme fatigue.
So what did that look like for me?
A skinny, awkward, lethargic kid trying to make it at school everyday
not knowing how to fully explain what was wrong with me, and we won’t even talk
about puberty that I clearly wasn’t hitting.
Suddenly, Sickle Cell became taboo, no one ever discussed it
or even researched it out of curiosity, because lets face it, no one really
cared or had time to care. Therefore,
I never talked about it and started to not care. The only other person I knew
who had it was my friend, Carmelita, she had a cousin in Georgia who had it—that’s
it! Anytime someone heard I had sickle
cell, immediately it was the “oh, I didn’t know you had that” and then pity
face. I never wanted pity, but it was
something that was always served to me.
Then realized I could use it as a “get out of a situation” card.
Prime example: Physical Education. That’s right, P.E. Fuck P.E.
And I say that with every fiber in my body. Because of P.E., it held up a mirror of
reality in how weak, fragile and incapable I really was.
Luckily,
by my junior year, Dr. Sepa hooked ya girl up with writing a note that excused
me from any physical education due to my disease. Whoooo hoooo ,okay Sickle Cell, thank
you!!! I couldn't do a lay up, spike a volleyball, run a mile, climb a rope, hit a tennis ball, throw a pitch, hit a ball, kick a ball to save my damn life!
Therefore, my lack of physical
capabilities built a slight wedge between me and my dad, COACH Bebe and my
siblings—the athletes. I am THE ONLY one
who didn’t play a sport and looked at as the weakest link. So, it was my
personality, quick wit and intelligence that got me a conversation at any
table. I'm not saying this to plant guilt, but it was the reality of my world.
In high school, I am literally taking care of
myself (and my grandfather)the best I know how, which wasn’t very good. At night when I was in mild pain—I’d stay up
till the wee hours playing Nintendo and talking on the phone with tons of
blankets over me trying to “doctor” my pain and mentally get through it.
This type of “self soothing” again set the tone for the rest of my
life. Horrible sleep patterns—lack of
production during the day.
My high school routine pretty much looked like this:
I was up late, wake up early, don’t eat breakfast, off to
school, grab a bag of chips and an orange soda (that’s breakfast). Lunchtime I hated the cafeteria food so most
days I’d give my free lunch to my brother, and I’d eat a bagel w/cream cheese
and another orange soda. If I had money,
I’d go with the kids with cars down to Lincoln Heights to either McDonald’s,
KFC, Pizza Pipeline or Zips (only my Spokane peeps know about Zips!). Come home
from school, usually walk to 7-11 to buy a hot dog, a bag of Doritos and a
Grape Crush. Granddaddy probably cooked
something, but by high school, I was acclimated to white people food and would
rarely eat anything he cooked. Middle of
the night during my Nintendo playing, I’d pause to make fish sticks or top ramen. I ate like this ALL 4 YEARS OF HIGH SCHOOL. Talk about malnourished! Water? Water? Didn't have bottled water back then, so NEVER drank water! Forget about it!
Pause: I was a gamer! From Atari to Playstation, I had EVERY GAMING CONSOLE. Video Games was my emotional support! I didn't have any real emotional support to deal with the mourning of my grandmother, the stress of being a teen, the feeling of rejection from my mom and simply being an only child with an 80 year old guardian, NINTENDO saved my spirit! I was a BEAST at Tyson's Punchout, Super Mario Bros, and ironically Tecmo Bowl.
No, I never beat Tyson, ugh. Where was the cheat code? lol
By the time I was 17 right before graduating high
school, I had developed gallstones. Keep
in mind, Dr. Sepa told me I had gallstones, I knew I had them, but it went in one ear and out the other until shit got real. Not only was this due to poor eating, but apparently, with Sickle Cell, Gallbladders were one of the first organs to be attacked. If anyone knows anything about having
gallstones, OMG you might as well have killed me.
Each time I ate food; 30 minutes later I was
violently throwing up. And instead of
taking me to the doctor both my grandfather and mom accused me of being
pregnant. OMG, I’M A VIRGIN AND I STILL
HAVEN’T STARTED MY PERIOD!
Yet, no one
took me to the doctor and I damn sure wasn’t volunteering to take myself. I can’t even begin too calculate how long the eat, throw up, eat, throw up cycle went on for before one night, my
uncle was in town from Seattle and I got so excited, I ran to the door to let
him in and due to having no nutrients, my blood sugar was low and I
fainted. My uncle and my aunt rushed me
to the emergency room. I get to the
emergency room and throw up all over the floor.
The nurse walks in “oh, all she needed to do was throw up, she’s
fine.” And let me go home.
Let me be very clear when I say this:
EMERGENCY ROOMS TREAT SICKLE CELL PATIENTS HORRIBLE!
EMERGENCY ROOMS TREAT SICKLE CELL PATIENTS HORRIBLE!
EMERGENCY ROOMS TREAT SICKLE CELL PATIENTS HORRIBLE!
EMERGENCY ROOMS TREAT SICKLE CELL PATIENTS HORRIBLE!
White doctors. White Nurses. White patients. White city. My black ass. I won't say there were discriminatory issues, but lets just say if Sickle Cell was a white disease--my experiences and testimonies would be a lot different. It may sound harsh and abrasive, but this is an UGLY truth.
Even now at 40 years old, I avoid the ER!
Luckily, as part of my discharge, they had to
send all my tests and paperwork to Dr. Sepa.
Dr. Sepa called the next week and informed me (not a parent/guardian) that I needed an emergency
surgery because I had gallstones and a hernia.
Next time on Life with Sickle Cell: Sickle Cell Support
I love Dr. Tim Sepa I worked for him and he was the kids doctor and Diantre's too... When Eshaun turned 18 he was pissed he couldn't continue to see him... I so upset and troubled that you were alone, I miss my Nana and Joe too.. Love you cousin
ReplyDeleteLove you too, cousin! When I turned 18, I hated that I couldn't go to Dr. Sepa anymore, he was great!
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