Dealing With Loss: One of the Many Lessons I Learned From CVS

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.

         

CVS Is Not Just A Pharmacy

When people hear C-V-S, they first thing they think of is the pharmacy and convenience store with the same namesake.  They certainly don't think of the illness that robbed me of my good health, thus, changing the course of my life forever.  The acronym, CVS, stands for the functional disorder called Cyclic Vomiting Syndrome (CVS), which is characterized by recurring attacks of uncontrollable vomiting, relentless nausea, and excruciating abdominal pain.  Some other symptoms include: sensitivity to light, noise, and sound, lethargy, profuse sweating, and hyper salivation.

There are a number of things that can trigger an episode.  Some triggers include both positive and negative stress.  In fact, I can’t tell you how many times I became ill and ruined celebrations because I got excited or elated over an upcoming vacation or birthday.  Another trigger is hormonal changes, which is one trigger I can’t escape from because it is beyond my control.  With that said, I get sick ever month around the time I ovulate and when I am menstruating.  Other triggers include: food allergies, colds, infections, anxiety and panic attacks, motion sickness, sinus problems, physical exhaustion, eating too much or too little, and a drastic change in barometric pressure.   

Vomiting during a CVS episode can be so severe that I can vomit uncontrollably up to five times an hour for a period of minutes, hours, days, or even months. When I have nothing else left to vomit, I will start dry heaving and chucking up clots of blood from the forceful vomiting.  If you ask CVS sufferers about their vomiting, they will always tell you that the dry heaving is much worse than the vomiting. To avoid that, most CVS sufferers will drink fluids so that they can vomit the fluids instead of dry heaving.  I do this as well because I can’t manage the pain of dry heaving on top of the stomach pain I have already.  It is less taxing on my body if I vomited the juice I just drank instead of dry heaving.  Furthermore, CVS sufferers will also tell you that they sometimes make themselves vomit so that it wouldn’t be so forceful and painful.  This behavior though should not be confused with the eating disorder, bulimia.  It is just a means for us to lessen the intensity of vomiting.  

In addition, the pain involved during an episode can be so excruciating that even the strongest painkiller won’t adequately treat the pain and normal activities, such as talking and walking, become difficult to manage. The pain is so agonizing that some people with CVS have no other choice but to be sedated throughout the episode so that they can escape the intense misery that CVS brings.  For me, the pain from CVS is more excruciating than the pain I experienced when I was in labor.  It’s the type of pain that no one should have to experience.

Even though Samuel Gee discovered this disorder back in 1882, it is still unknown to most of the medical world.  In fact, every time I go to see a new doctor and tell them my diagnosis of CVS, they almost always tell me that they never heard of it. For the past fifteen years, I can honestly say that it is rare to meet a doctor who is knowledgeable about CVS.  With that said, most of my doctor visits seem meaningless, because I usually spend my visit educating the doctor about my illness while I get nothing in return. 

However, there are some overzealous doctors that are fascinated by this obscure disorder that they take me on as a patient just to treat me like a lab rat. They end up trying all types of pharmaceutical therapies to see if it may help manage my CVS.  The sad thing is that when they have exhausted all their options and I show no improvements, they end up losing interest in me and become inaccessible. Consequently, they end up discharging me as their patient, and pass me along to another doctor who will most likely do the same thing, and this hopping around from doctor to doctor becomes a vicious cycle.

While I have episodes every two and a half weeks, I still can’t get used to the intense misery.  One of the worse things about this illness is that it can rear its ugly head at anytime.  Actually, one time when I was returning home from work with my colleague, I started to feel the pain creeping, and the more we drove, the more my nausea worsened.  Then, the symptoms progressed so fast that I had to stop on the highway and ask my colleague to call the ambulance to take me to the hospital.  My episodes get so bad that sometimes I think it would be better if I died because at least I won’t have to suffer. Unfortunately, almost all of my episodes land me in the ER, where I am often met with disbelief and abuse. 

Some doctors in the ER never heard of CVS so they don’t know what to do, so they test me for all sorts of unnecessary things which delays treatment, and there is another set of doctors that don’t even believe in CVS.  These doctors are famous for putting sufferers through hell because they believe that it is all in our heads and would rather not treat us for our symptoms.  They get annoyed with seeing us over and over again with the same complaint.  Also, there are doctors that are abusive because they assume that you are a drug seeker looking for a way to get high.  These are the worse type of doctors to encounter because their actions and language can be extremely traumatizing. They refuse to test you for anything because they only think you are looking for a fix and refuse to treat your symptoms with narcotics.  Lastly, there are doctors that know about the illness and do their best at treating you promptly so that your symptoms don’t worsened.  Finding doctors that know about this disorder, though, is like finding a needle in a haystack. 

Because I am so used to going to the hospital, everything now is second nature to me. I know exactly what to expect.  I would wait for hours in misery in the waiting room of the ER, and at some point, they would call me in to the back where the rooms were located.  There, I had to wait again for the doctor to come. The doctor would come and assess the situation and order the medications that will make me better.  Then, the nurse would come and access my port-a-cath, pump me up with IV fluids, and give me medication for the nausea and pain.  They would continue to give me extra doses if I didn’t respond to the medications.  Once I started feeling better, they would give me something to eat and drink to make sure that I truly aborted the episode.  After that, they would discharge me.  If it were a severe episode, they would admit me and observe me for a few days where I was treated around the clock with medication until I recovered. 

I would go to the hospital so frequently that I joke around with family and friends and tell them that the hospital is my home away from home. Everyone in the ER knows who I am although I wish that were not the case.  I didn’t want to be in the hospital that much, but I have no choice.  It is as if I am a prisoner in my own body because now CVS controls my life.  

In conclusion, CVS is something I would never wish on anyone, not even my worse enemy.  It takes over your life, thus, robbing you of all your dreams and aspirations.  When I got diagnosed, I was so happy that they finally found what was making me so sick, but that elation was only short lived because the doctor continued to tell me that this is a chronic illness that I might have for the rest of my life.  I couldn’t imagine continue going through periods of intense misery over and over again, but CVS was here to stay and I had to accept that. Therefore, I had to learn how to cope with my new life.  So the next time you hear CVS, just know that it is not only the name of a pharmacy, but also a devastating disorder that changed my life forever.