The
HIP Health Center just a few blocks away on the Grand Concourse seemed like
miles away to me. An eternity away. I was either walking to my doom or to my
salvation. I wanted to be there already,
but my body was not doing what my mind told it to do. I never concentrated so much on walking. “I think I can, I think I can-- you can do
it.” I kept telling myself. “Just a few more blocks and you’re there. One foot
in front of the next,” but my legs just dragged along the cold, dirty sidewalk,
refusing to do anything. It was as
though my legs were on a strike, so, my mother ended up dragging me there under
her forceful grip. I didn’t know which
was worse, the agonizing, debilitating pain or the relentless nausea and vomiting.
My stomach felt as though it were attacking me. Knife-piercing pain. I had to stop walking now. I was too weak and extremely exhausted. I also
needed to vomit again. My bile and blood
tinged vomit was another addition to the already dirty, stained-with-God’s-knows-what
sidewalk. Vomiting gave no relief to my
misery, but relief might be on its way-- we were almost there.
I
couldn’t wait to get to the clinic. I
must have been the much-anticipated coming attraction to the Grand Concourse--the
Grand Concourse’s Coney Island Freak Show. Everyone was in awe at my appearance.
They couldn’t keep their eyes off of me.
Never saw a sight quite like me. Hair scattered everywhere, resembling a lion’s
mane, eyes sunken in with dark black circles around them, thin as a skeleton,
and I had a ghastly pallor. I was the
shadow of death. An old man stopped
walking and locked his eyes on me until I was no longer in his sight. I also heard murmurs in the distance. “Stay close to me, you don’t know what that
girl has. She looks terribly sick”, said a mother to her child. This was the first time I experienced how
insensitive people were. I was glad to finally be there. I was tired at the nasty looks and comments I
got just because I looked so sick.
Once
my mother and I struggled opening the heavy glass doors at the clinic, a
security guard with the what-the-hell-is-wrong-with-her expression on his face
rushed to our rescue. “Miss, is she okay? She looks like she needs a wheelchair.
Just stay here, I’ll get you one,” he
said. “Thanks,” my mother replied. I was in too much pain to talk or even walk.
We waited for him to return, then, we took the elevator up to the fourth floor,
the pediatric unit. Looking like the
shadow of death had its advantages. I
didn’t have to wait. My doctor, Dr.
Reddy, saw me immediately. She was a middle-aged
woman with a horrible bedside manner. She
wore make-up ten shades too light for her complexion and had a strong Indian
accent. I didn’t like her. She didn’t know what she was doing and it was
obvious she didn’t care. After all, I
was just another poor black child who was abusing the system. The more I knew
her, the more I realized how destructive her behavior was. She taught me a valuable life lesson that
doctors cannot be trusted for they are humans just as we are.
While we were waiting for her, Dr. Reddy was
preparing for our appointment, but it sounded as if she were complaining
instead of preparing for my appointment.
I knew this because she was in the room right next to ours complaining
to her secretary. She didn’t have a clue that we could hear everything she was
saying. The walls were paper-thin—that’s
all any Bronx clinic could afford anyway.
“She’s
here again! I am tired of her. She is
wasting my time because she’s faking it. Either that or she has an eating
disorder. She just wants attention
probably because she was not getting enough attention at home. She’s a twin, you know. Sibling Rivalry,
perhaps” exclaimed Dr. Reddy.
How
could she say such a thing? She doesn’t know what she’s talking about. I’m not
faking it. Why would I put myself
through this hell? And what does my sister have to do with me? There is no sibling rivalry! We aren’t even competitive with one another.
We are inseparable and always did everything together. We felt like half ourselves when one of us
was missing.
The
only time Dena and I got separated was when we were entering the first grade. The
teachers thought that it would be beneficial if they separated Dena and
me. Dena was placed with Ms. Dalt, and I
was with Mrs. Bowen, who was a heavy-set woman from Jamaica, who would always stop
during lessons to reposition her girdle to its correct place. You’d see her big bosoms jiggle from left to
right every time she did it. It was
quite a sight. She was a gossiper, always
running over to Ms. Dalt’s class to dish out the scoop. I was even her messenger at times when she was
too lazy to go herself. Mrs. Bowen would
also always give us candy if we behaved in class or actually took a nap during
recess, and she always made learning fun. I remember one time she had a contest
on who could count to one hundred the fastest. The winner got a coloring book.
Of course, I was the fastest. I really enjoyed being in her class. I was her favorite student, and the class-monitor.
However, with all the privileges and fun I had, I only felt like half-myself. And Dena felt the same way too. We were
miserable. We hated that we were
separated.
"Mommy,
I don’t feel well. I have a tummy ache and a cough too. I can’t go to school,"
Dena complained as she tried very hard to look sick—hands wrapped around her
stomach, as she lay in bed in the fetal position. She wasn’t doing a great job
of it, but she was trying everything she could not to go to school. It was like
this everyday. Although we both loved school, it was not worth going if we
couldn't be with each other. We were twins--we were always supposed to be
together and do everything together.
Dena
and I always walked to school together. Dena walked on the outside of the
sidewalk while I always walked on the inside.
She always felt a need to protect me so she thought that walking on the
outside, closer to the street, would protect me from potential danger. Every morning on our way to school, Dena and
I saw this pleasant old man, Pablo, who only spoke Spanish. He always waited by the building’s entrance
just so he could greet us with his, “Hola, gemelas.” We later had to look in a
Spanish translating dictionary to discover it meant, “Hello twins.” After he greeted us, he would go back into
his apartment and go on with his day.
And this was his ritual everyday.
We never understood why he felt a need to greet us each morning, but
perhaps, we brought him some sort of happiness.
One
day when we were walking home from school with our mother, Dena exploded into a
hysterical fit. She couldn’t hold in her
discontentment anymore. "Mommy, I don't like my class. I want to be
with Dana." She begged, and I joined in with her. “Please Mommy, can
you let them put us together, please Mommy, please,” we wailed. Not too long after, my mom finally agreed. The next day, she went to St. Simon Stock and requested
that we be placed in the same class. At
last, reunited again! Dena’s desperate
attempt worked and from then on, they never separated us again. Back then, I thought that after our victorious
triumph, nothing could ever come between the two of us or so I thought.
“Dana,
get up off the wheelchair, you’re not an old lady! Stop doing this to yourself!” I tried to get up, but I couldn’t. I was too weak, too sick, and in too much pain
to get up, but Dr. Reddy wasn’t having it. After all, she thought that I was just putting
on a show for everyone. She grabbed me
by my arms and yanked me up off the wheelchair and yelled, “Walk, Dana, Walk!” I tried to walk, one step, two steps, three
steps, and bam! I fell to the floor—I
had passed out. I can’t remember
anything after that. I just remember
waking up on the cold tiled floor with about three doctors huddled around me as
my mother stood calmly to the side. I don’t know how she remained so calm
throughout everything. Even at the worse
of times, she was always strong and composed. I guess she didn’t want to show her pain, her
weakness. She had to be strong for all
of us, and most importantly, for me. Afterwards, my mom told me that I had passed
out for a good five minutes, and that was when Dr. Reddy realized that I needed
medical help.
Dr.
Reddy called the Our Lady of Mercy Hospital soon after and finally admitted me
into the hospital. There, they could assess
what was wrong with me and find out how to make me better. The hospital was
located in Woodlawn, on the other side of the Bronx, about two buses away. To
get there was another ordeal—another nightmare. The continuous vomiting, the relentless pain,
the constant stares, and my overall weakness still plagued me. Everything worsened with time. I thought this day would never end. Why didn’t it already?
When
I reached the hospital, they immediately admitted me to the pediatric
unit. Once there, I had to get an IV for
saline fluids since I was so dehydrated.
I never had an IV put in before, but I sure would never forget that day,
because before she finally found a viable vein, she poked me ten different
times and failed. It didn’t seem as though I was off to a good start at the
hospital, but I tried to stay optimistic and strong so I wouldn’t burden my
mother. During my stay there, the
doctors didn’t take any tests on me, only hydrated me, thinking it was all in
my head. After all, Dr. Reddy gave them
the heads up on my condition—telling them I was doing this to myself for
attention, which was complete bullshit.
After
a few days, I was fully hydrated, and following Dr. Reddy’s orders, the
hospital released me and that was it. I was still sick, and they discharged me
and that was when I realized that Dr. Reddy was destroying my life and slowly
killing me because of her disbelief. I
went home where my health quickly deteriorated all because my doctor didn’t
believe I was really sick. While I was
weak and fragile, I was frustrated because I was suffering so much and felt as
though she was keeping me from the medical help I obviously needed. So we went back and forth to Dr. Reddy’s
office after I left the hospital that first time, but she was no help. She was still convinced that I was doing this
to myself.
After
two weeks of going back and forth to see Dr. Reddy, I lost 22 pounds and
weighed 88lbs. That was because I
couldn’t keep any food down. Although my
body was weak and lifeless, my mind was still active; running rampant with
thoughts of being better again, desires to be with my sister, and countless emotions.
However, my body betrayed me—inactive,
dormant, and stubborn. I was like a baby,
unable to do anything for myself. My
mother fed me, washed me, dressed me, combed my hair, comforted me and even
wiped my tears away. I was helpless,
completely and utterly dependent on my mother and I was thirteen years old. I was constantly nauseous and still experienced
stabbing pains in my abdomen. I didn’t
think I could take it anymore. I wanted
to die. I was dying. A piece of me died everyday.
It
was morning time and I know that soon Mommy will be getting me ready to go to
the hospital. Today, she will demand
that they do a full-work up or else she’ll call Eyewitness News. She has had enough of Dr. Reddy’s crap. While I was still in bed, I heard Dena getting
ready for school in the distance and I couldn’t help but remember those
mornings when I was well when Dena and I fought over who was going to get her
turn in the bathroom first. In fact, I
recalled looking in the mirror that once captured our two distinct images that
amazingly resembled one. We would look
in the mirror and agree if we looked alike or not, because some days we agreed
we looked alike while on other days, not so much. But I know that this day is not that day when
I lie in bed suffering and wait for the door to slam, knowing that today she’ll
leave me behind again. We’ll go our
separate ways. She’ll go to school, and
I, to the hospital. I was despising this
illness more and more, because it was robbing me of the life I once had—a life
that was great with good health and lots of happiness. Most importantly, it was keeping me from my
twin sister.
I
missed her, but she couldn’t stand to see me this way, so she kept her
distance. She wouldn’t even come to the
hospital to see me. She only went once
and that was it. She couldn’t look at me
without bursting into tears, because this time she couldn’t rescue me or
protect me from my suffering. I don’t want her to see me this way, because I
know it hurts her--but I needed her support. A part of me is missing because
she’s not here to get me through this. Everyone
at school said that Dena’s not quite the same, that she’s only half herself. I was only half myself too.
Everything
changed in such a short time, but I guess I had to get used to it and cope with
my new and not improved life. Dena and I
were separated again, but this time, we had no control over this. We actually both had to learn how to cope. We
had no choice. Dena and I no longer fought
for the bathroom like we used to—we took our turns one at a time. Dena saw only
her reflection in the mirror. She no
longer saw our two images resembling one. And Pablo, that old man who looked out for us
everyday, he no longer looked for Dena and me to bring him the comfort that one
does not have to be alone.
Dana,
ReplyDeleteI love and adore your sisters, Shana and Dena, who have shared with me how much they love and adore you. Thank you for sharing the story of your life's struggles with CVS as it is so vitally important for everyone, not just doctors, to know about the debilitating effect the desease and insensitive doctors are having on so many people.
I also had an extremely painful and disabling disease growing up starting at 11 years old, endometriosis. My doctors told my parents that my symptons were either "made up" so that I did not have to go to school or were "all in my head". It was not until I went to college that I actually received proper diagnosis and treatment. I understand a small part of what you are going through. Now that you are an adult and mother, I can only imagine how difficult your suffering has been on so many levels.
I saw one comment recommend that you should "jazzy up" your blog. If I can humbly make a recommendation it would be, please don't "jazzy up" the suffering that you have experiences. Don't "jazzy up" the mistreatment you have experiences from doctors. Don't "jazzy up" the continuing struggles you and other sufferers of CVS face. I would ask only that you continue to be true to yourself; share with other CVS sufferers the treatments that have helped to ease your challenges with this disease so that they might learn and find relief. Continue to identify by name and hospital the insensitive and distructive doctors who continue to harm their patients with CVS. Finally know that your family and friends love you dearly for your courage and good spirit. I hope to meet you in person soon. Please send my best to Shana, Dena and your Mom. Take care, Teveia
I know, I saw that comment too, jazzy it up and you'll be in business. How do you jazzy up an illness? Dana and Dena both have always been excellent writers and I think her message is quite clear and touching on its own. Dana's illness and what she has gone through needs no jazzing up. Her message is empowering and courageous. <3
DeleteDana,
ReplyDeleteI remember this time. I was in 6th grade, and didn't know Dena without Dana. It was always Dena and Dana. Although it was clearly difficult for you, it was such a proud moment for the whole school to watch you graduate at the top of your class despite the challenges that made you miss so much school. From that moment on, I knew I could do anything, ANYTHING I wanted. You inspire me. You are here for a reason. I am rooting for you, and I pray for you and your whole family often. I still have the ice cream cones that you and Dena each drew for me in my little kid sketch pad, and looking at those make me smile. Especially when I heart that you are sick again. I hope that you stay encouraged that one day you'll be free of this, or at least its negative effects. I always pray for your complete and total healing of this, and I picture Archangel Rafael, the healer, by your side, sending green healing light through you, even now as I write this, in hopes of a full recovery for you. Thank you for being so strong, carrying on, and sharing your story with us. I believe in you, and have hope for you. I know your pain is not in vain. I love you girl. God bless. <3
Dearest Lorisse,
ReplyDeleteThank you so much for your kind words, your support, and your warmth. Dana appreciates it so much. I am so glad that facebook brought us back into each other's lives. You are definitely a kindred spirit and I need to see more of you. Much love ALWAYS.
Love,
Dena
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