I never really thought I was different. Getting my blood
drawn was routine, and a finger prick or a needle in my arm was never anything
to be afraid of, though the kids in my fourth grade class often discussed
horror stories of getting even a shot. But, knowing nothing else, children
accept the circumstances they are given, as I did with getting my blood counts.
I do not even remember if I knew for what reason my blood was periodically
taken.
 |
Davíd (brother, 12), Me (9), Ilene (sister, 22), and Ashley (niece, 19 months)
in February 1998 at Natural Bridge Wildlife Ranch near San Antonio, Texas
|
Eventually I would learn I was a patient of the lifelong
disease Diamond Blackfan Anemia (named after the doctors who discovered it; not
intentionally meant to sound dark)—lifelong because it is a genetic mutation
and there is no cure. Only 600 to 700 people in the world have this disease,
which will cause the bone marrow to produce no or little amounts of red blood
cells. It has been known as a crib death, since the ultimate result of a waning
red cell count is cardiac arrest and death. Patients are most commonly treated
with blood transfusions and/or steroids, a miracle drug that stimulates the
bone marrow to produce red cells, though how or why it does this is unknown.
The nature of the disease is often unpredictable. On occasion, a patient’s
anemia may go into remission that they may live healthily, free of transfusions
and steroids.
Apparently, I was exceptional, though. When I returned to
Santa Rosa Children’s Hospital in San Antonio for the first time in four years,
having recently moved back to the San Antonio area, everyone knew me, even
those who were new since I had last been there. They knew my story. I was one
of those who lived, treatment free, on my own, with the blood disorder in
remission. I had not been on steroids or had a blood transfusion for years and,
thereby, was taller than a twelve year old girl also with Diamond Blackfan that
was at Doctor Briton’s office the same day as me. This remission is what made
me known and a commonly discussed case among the Children’s Cancer and Blood
Disorders Center. After all, I had just spent three years in Saudi Arabia, in
which we had needed special permission for me to live there, where emergency
medical attention would be even more difficult to come by than it already was.
Many within the hospital department and those who knew me when I was very
little found me an inspiration and would reverently express that.
As I came to understand these things, I took pride in it. I
commonly prided in my facts. That is what I was known for—the one who traveled
the world and always knew the right answers in my classes. I was never gifted
with many abilities, as athletics or other talents. I played piano, because I
had had lessons. Besides that, I did not do very much but was known for
knowing stuff. If I were to get any attention or to be known by anyone, I would
have to rely on the facts about me and the facts I knew.
Also, I was not very good-looking, I had determined. What I
saw in the mirror and in pictures was unimpressive, unlike some of the other
boys my age. There were often girls crushing on them. I had never heard of any
girls crushing on me or of any other validation that I may be good-looking, so
I resorted to believing that I was ugly and would not grow to be handsome like
my older brothers. The only physical definition I had was being tiny, fairly
short and thin. I was born small but also received the stunted growth that came
from steroid and blood transfusion treatments. I enjoyed being small and
thought it was ideal, though I often perceived disfavor from others about my
size, but still, they would know me for my tininess. I figured that it at least
got me some attention.
***
 |
| With my seventh grade awards in May 2001, Age 12 |
Over three years later one Sunday, I sat in my family’s hot
minivan passenger seat with the door open, waiting for my family to come out of
the church building, so we could go home. Celia Blaine [names changed] came out
with Paul Abrey. He carried her baby to his car, but she approached me. She was
a tall woman, very thin. I had always thought she looked like a model and had
somewhat of a crush on this married woman who was more than twice my age, but I
often wished for her sweet attention, as well as other people’s attention or
praise—a sign of value from them.
I knew I would not get very good attention from my
appearance. The older I got the scrappier or homelier I looked. I perceived I
needed to show off my thin frame by moving lightly and feathery, and that, in
turn, led me to feel insignificant, though I was only trying to give that
quality notice.
Now, I was doped on steroids, and my body had honked up in
size. This body bore no comfort, while it faced the effects of the steroid:
water retention, weight gain, change in hair and eye color, stunted growth,
stretch marks, and many other side effects of the drug. At times I could not
operate. For instance, gas would be trapped so hard inside me, my chest would
feel like it would explode; or, my indigestion so great my insides felt like
they would implode. My body did not feel like my own.
My eating tripled, because I always felt hungry. I
never reached satiety. Before I understood this effect of the steroid, the only
reason I would stop eating was because I could not fit another parcel of food
inside of me.
My personality changed, too. I was irritable about every
thing that was even slightly out of place. This increase in stress made
sleeping difficult and gave me headaches and migraines.
I did not recognize myself and was uncomfortable with the
drastic changes in my bodily function and appearance. Others did not recognize
me either. Some people would not look at me anymore. Had they stopped seeing
me? Few would talk to me previously, and now even fewer did. I became the smart
kid who suddenly got FAT in a month. Some would unsympathetically tease me,
particularly about my abnormally chubby cheeks. But, after all, junior high is
not when a lot of people are the most understanding. Still, as a preteen often
contemplating the point of anything in life, I found these interactions
not the least bit encouraging.
As Celia approached me, I sat up, expecting her to give me a
message for my mother, who, at the time, was the leader of the women’s
organization for our church ward. I was used to being a messenger regarding her
business.
She hugged me. “You are so brave,” she said quietly and
left.
***
As I look back on that day with Celia, she amazes me. I
remember her as a quiet person. It did not strike me at that age, but now as an
adult, I sense irony in her message, in that she probably braved to hug me and
to say those words.
 |
| November 2012, Age 24 |
Still, that was one of the kindest things that anyone did
for me during that time. I did not feel brave, but it made me realize I could
be, more than I was being. I did not feel as alone, and I felt like there were
people watching out for me. I could brave through my condition, despite how I
felt about myself or how I felt others saw me. If anything, I could brave
through my condition for others.
Now, ten and a half years since I received steroid
treatment, eleven years since I received a blood transfusion, I walk across a
university campus to meet a friend to discuss a personal essay I wrote for one
of my classes. I did not wish to write about my topic, but it burned within me
to be written. It is something that has usually made my body involuntarily
shake when I discuss it. I rarely bring it up, unless I feel it is appropriate,
but I never shy away from it when it is brought up.
That essay led me to investigate my blood disorder further.
As I have scrolled through websites and Facebook pages and groups, I find
pictures of patients posted by loved ones. They are all seeking hope. Many of
those pictured are no longer living. Some only lived to the age of four, others
eighteen. It is not easy to face.
In the past, I investigated these sites but eventually
banned myself from further viewing, because my body would shake and they would
lead to tears from recognizing the result of fellow patients and, perhaps, from
a silent fear of the same for myself.
There was even a discussion board of parents with an
infected child in my area wishing to reach out to others that may be
experiencing the same disease. Others responded, although they were not near
these parents. I did not participate. I did not want to face this with them,
though I could have met them in person, as was their hope. Was I being selfish?
I could hardly face looking at pictures of other patients, let alone
comfortably recount my own story. Perhaps, it would have been good to meet
them, but I was not brave enough.
Now, as I see those who are struggling more than I have had
to and those who have passed on, I know I have been given this time. I have
been granted it—not that I am more deserving than others. I sometimes wonder
why I am given this. But I have it. I must use it. It should not be spent
moping about what I feel I lack or in dispute with or fear of others. This is
life. Every breath is a gift. I have the opportunity to live. I am here.
I attend a university where people are kind to me. My peers
know me for my kindness and my humor. They enjoy my personality and smile when
they see me, as I smile back.
 |
| May 2011, Age 22 |
Often, I am told how good-looking I am. “Cute” is the most
common word used. Anytime I perform a scene for my film acting class, my professor
raves about how good I look on film.
And in this, I am grateful. Being considered good-looking
can be especially beneficial in landing a job in my line of work as an actor,
but beyond that and getting ready for my day, I hardly think about appearance,
though I assume value in tidiness, as I have all my life. I find more to life
than how I look, physically and in action.
I love people knowing my personality and find great reward
in that. Rarely do I discuss facts about me, having felt like a museum exhibit
in the past—something to see, learn about, and then move on from. Very few
people know of my international birth or world travels, and even fewer know
about my blood disorder. I desire them to be honest and unbiased with me and
treat me as they would anyone else, without affected favor, respect, or
disregard based on these facets of me. It is not that I hide these things about
me. I am open to speak of them when appropriate. I prefer people to know the
current operation of me and I them.
We all have our pasts, but life is now, and we do not know
how long we will have it. Now is what we are given, even if it requires being
brave.
