“How Scleroderma Changed My Life”

June is Scleroderma Awareness month, a fact I am well aware of due to my family
history.

When I saw the Scleroderma Warriors website come up on my Facebook for-you page, it
made me smile. Not only because of Scleroderma awareness month, but also because it is the
anniversary of when my mom had a second chance at life. In 2012 my mom was diagnosed with
diffuse scleroderma. I was 8 at the time and had no clue how much my life would change.

It was never kept from me that Momma was sick, I went to doctor appointments and
wrote school assignments on Scleroderma, but it was never very real. Trips to see the specialist
at UCLA were filled with beach days and shopping at the American Girl Doll store. Less than
savory appointments were shadowed by days spent with my cousins.

The physical effects of Scleroderma weren’t obvious to me, since I lived with her and spent the majority of every day with her.

Things began to change in 2013 when a debate began with our insurance company.
Momma needed a stem cell transplant and they weren’t willing to pay for an experimental
treatment. Due to the terminal diagnosis, they ultimately relented and paid for Momma’s
treatment in Chicago. There she would receive a life-saving stem cell transplant at Northwestern
Memorial Hospital by Dr. Richard Burt, the leading doctor in stem cell transplants for
Scleroderma.

I know now that her prognosis had been getting rapidly worse with her life expectancy
shortening to only about two more years. As the process continued, it truly felt like an adventure.
Although I was sad when Momma and Nana had to leave for Chicago the day after my 10th
birthday for the start of the procedure, I got to stay at Auntie’s place for a few weeks and got to
help repaint Momma’s room. I got my first taste of what was to come when my mom had to
shave her head due to chemotherapy. My whole family came over and it unsettled me. This was
the first change that I could truly see. And then everything was normal again. She kept coming to
my school events and as the end of the school year rolled around, I said goodbye as she, along
with my nana and auntie, left to have the transplant. With my cousin Hayley staying with me, it
was a summer of pool parties, daily 7-11 slushies, and complete separation from what was
happening in Chicago beyond my phone calls with my mom. It was also one of uncertainty. My
cousin implored me not to cry when in front of Momma to keep her from worrying, as daily
FaceTime calls moved to voice calls.

Two weeks before the 4th of July I was woken up at 3 am abruptly by the lights in my
room as Hayley and our family friend Kate threw my clothes into a bag. Our family friend
Kristine came in to tell me that there was an emergency in Chicago and that I would be going
there immediately. I was sent with my uncles and we were in Chicago by 7 o’clock that night.

Every image from that night is clear in my mind. I had never seen buildings so tall, lit up so
beautifully.

The hospital itself was larger than any other I had ever seen. As we were led to
Momma’s room, my feelings went numb. The nurses and Dr. Burt all told me just to focus on my
mom, they didn’t think she would survive. After her transplant, Momma’s heart was beating too
fast and wouldn’t slow down. With nowhere to go, blood began to fill her lungs. Luckily, as a
nurse, she realized something was wrong and was intubated. With her last moment of verbal
communication, she asked for me. I remember the noise most clearly, beeping and honking, with
the most important person in my life connected to all sorts of tubes and machines. I hugged her,
feeling the unnatural rise and fall of her chest, and left the hospital with praises of my bravery.
Little do they know that as soon as Nana, Uncle Kev, and I reached the corner, I broke down in
tears. I now knew. I was horrified. I was 10 and I knew something was very, very wrong. And
yet, the memory of the trip is not covered in fear. We went to the mall and the Hershey store, I
tried my first deep dish pizza and ate chicken strips every day. I watched the Navy Pier fireworks
from my mom’s hospital room on the 4th of July. Just as they did before Chicago, my family
kept me safe. They made a traumatic event easier and allowed me to experience these things
while maintaining my childhood.

As my mom recovered and was moved from the ICU to the transplant care unit, my
uncles and I returned home to prepare for her homecoming. Whenever I am asked about what
affected me the most, the recovery process was by far the most difficult time. When I left
Chicago, everything seemed okay. She was a million times better than she was when I got there,
it felt like she was back to normal. When she got home, everything was different. After being
bed bound for so long, she had to relearn how to walk and had skin ulcers down to the bone. It
was a constant cycle of physical therapy and wound care. She was facing the aftereffects of
chemotherapy treatment and her compromised immune system caused us to take many
precautions. This was one area my family couldn’t shelter me. No matter how many weekends I
would spend at Aunties or how many ice cream trips Hayley would take me on, I would return
home. Over time, she recovered, and when I reached 7th grade I chose to go to therapy in order
to learn how to deal with the leftover trauma and anxiety. Eventually, I stopped flinching at
coughing, although I still struggle with anxiety to this day.

The COVID-19 pandemic presented the world with new challenges. For me, these were
all incredibly familiar. The distancing, the masks, the handwashing, and the isolation, were all
things that I had been doing for years. When you are in a family of immunocompromised people,
these things are what help keep your loved ones alive. As with all other things, my family stuck
together. Meeting 6-feet apart on the porch or out back, and having a zoom party for my 16th
birthday.

And as I face my high school graduation and my future in college, My experiences
have allowed me to be confident in my family’s consistent support.

They let me have my childhood and have supported me through the more adult challenges I have had to face.
Scleroderma has had many negative effects on my life, from the anxiety to my ever-present
health concerns, it has also taught me some important truths. No matter the struggle, I know my
family will always be able to face it together. I know my family will continue to fight
Scleroderma (we all still have our teal shirts that say “We Kicked Scleroderma’s A**” that we
wore when Momma came home). And I know that it is a lesson that will continue to be passed
through the generations to come.

Although my mom can no longer work bedside, she works as an RN with the Asante Post
Visit Call Program and is fortunate enough to work from home. Scleroderma changed the course
of my life, but it didn’t change the outcome. I was able to live as a child. I was blessed with an
incredibly loving family and I still have my momma by my side. I have seen my family through
the best and worst parts of our lives and continue to be comforted by our resilience. June is
Scleroderma awareness month. It is also Momma’s “rebirth” month and we celebrate it every
year. According to that calendar, she is now 8 years old.

– Emma