I had an amazing experience at OHSU. Far more extraordinary than I could have expected. I was given so many opportunities to participate in patient care and I lapped up each one like a camel quenching his thirst. I was thirsty for knowledge and experience which must have been apparent to the clinicians I was there to observe because there was no drought of knowledge to be shared by someone eager to learn.

I spent the week inside the operating room with children undergoing ear procedures, including a cochlear implant being placed. I spent some time in the audiology clinic where I observed hearing tests being administered and a cochlear implant (different patient) being programmed. The remainder of the time was spent in the clinic where patients were preparing for surgery, following up after surgery, having a procedure performed or visiting to diagnose a non-surgical issue using medical therapeutics. That’s one of the great things about otolaryngology and head and neck surgery. Unlike most surgical specialties, an ENT can diagnose and treat non-surgical conditions.

I had many special moments where I was able to interact with patients and their families. My ability to sign ASL even came in handy with one family. If I were to pick the highlight of my entire week long experience, it would be a no brainer. There was one moment that overshadowed every other up to that point. There was a child with a developmental delay of some kind who needed a rather invasive procedure performed, one I’ve had done on myself many times. Well, naturally she wasn’t going to have any of that nonsense. She fought everyone in the room; the attending, the resident, her mother and the visiting student trying to hide in the corner. Her mother held her down as the attending began his medically necessary invasion. She began to sob in defeat as tears rolled down her cheeks. Honestly, I was about ready to join her. It hurts to see a beautiful, innocent, little child like that. It reminded me too much of my own childhood because that was once me. I guess that’s still me, but I’m older now and my mother doesn’t have to hold me down anymore. Anyway, she had surrendered by now, but was still struggling a bit. I don’t know what lead me to do what I did next, but I moved in and took her hand in mine. She fought me at first, of course. It didn’t matter than I was just a college student, I had an ID badge with the OHSU logo on it. I was a member of the enemy’s army. I held on firmly, but gently and ran my thumb over the back of her hand. The struggle ended. She relaxed in my touch. Completely at ease in my hold. I became an ally to her army. I was on her side after all.

I’ll never forget all the feelings that raced through me at that moment. I, the puny college student who knew nothing and could do nothing, knew enough and could do enough to ease a little child’s suffering and assist the attending physician in performing his procedure. I was suddenly more powerful and more able than I had ever been before.

Maybe I could make a difference after all. Maybe.

I recently resigned my volunteer position at the therapy center for developmentally delayed children. I had become unhappy with the expectations of my supervisor who did not seem to feel I was capable to do much of anything. The environment had become depressing, evoking shame, self-loathing and anxiety. So, I sent my supervisor a kind email telling her in no certain terms that I was resigning my position.

I have since been looking for new volunteer opportunities. One of them is at a free clinic. I attended the volunteer info session just hours earlier today. The info session at the free clinic ended in good terms, but the ride wasn’t so smooth. I’m fortunate that I am able to articulate my strengths so well. Had I not been able to do so, I would have been overlooked for my deafness. It is only by the grace of God that I volunteered as I did, impressed the right people as I did, and answered His calling for me as I did up to this point. In the end, she only wanted to speak to two of my references, both of whom are associated with the free clinic and both of whom I feel have only good things to say of my character and my drive.

Still, I’m shaken by the bullet I barely dodged. There will be others.

Memorable Quotes:

Volunteer Coordinator: “I don’t want to mislead you, this will be hard.”
Me: “Good. That’s how I learn. With me, it’s sink or swim.”
VC: “Good answer.”
Me: “Look. I’m young. I don’t have all the answers. All I know are two things: one, this is what God has called me to do; and two, it’s been done before. All I have to do now is figure out how. That’s why I’m here.”

A Soldier Departed

February 20, 2013

As the Creator whispered into the young man’s battleworn heart, “You fought with honor,” the young man closed his eyes. “You served with valor,” the Commander continued. The young man’s breathing slowed to a mere whisper fleeing steadfast into the forthcoming wind, fading into oblivion until it could be felt no more. “Your service is over, soldier.” Slowly, the young man’s heart beat to the sound of a fatigued drummer’s final murmur that chased his breath to a land where the final utterances of the dying go on to live for the rest of eternity. “Go home.” And with that, the young man died. The young soldier parted onward to another world, a better world, from a hospital bed, connected to the many machines that beeped and booped the thematic of his departure. The young man passed through the doorway of eternity surrounded by angels, soaked in the love that poured from their eyes. The curtains fell as the final act of the performance came to a finish; the story, an end.

The world turned as it always had up to that moment, impervious to the death of a single human being. It seemed the world would continue to turn as it always had and always would, all but in the hearts of the lives a young soldier had wandered into and wandered out of with only footprints in the sand to remind them that he had once stood there. He had once loved there. With his footprints compressed into the sand, it was almost as if the tides of time had never washed him away. Where the young man’s footprints lay engraved in the sand, his love would stand against all tides forever and for always.

I met a girl with a familiar face. I knew I had seen her somewhere else before, but where, I just could not place my finger on it. Then it hit me! This girl, she was the girl from a dream I had some nights ago. A dream I could barely remember, but her face, I could not forget.

The dream, it was one of those dreams so beautiful and so otherworldly that waking up and realizing it was just that, a dream, was sobering and cruel. Why couldn’t such a dream be reality?

How could I have dreamed of a girl I had never known until now?

Street Missionary

February 10, 2013

I took a visit to the ER last night. I was hit by a car the night before and wanted to make sure I’m alright. I’m a little sore, but okay.

I saw a pregnant woman crying in the waiting room. Not one to mind my own business, I approached her with my pen and pad. “What’s wrong, hun?” I scribed.

In that small piece of time, I single handedly broke down the wall between silence and sound; deaf and hearing. I did what I couldn’t and by the time I had left, her tears had become smiles.

I had won over deafness and reached over the borders of ability to touch another life.

I won. . .

Fatherhood

January 23, 2013

Most of my friends are pregnant or have had children. I really want to start a family, but no chance of that happening soon. I’ve only just recently discovered the fun of casual dating. At least I get to live with one.

My two roommates, a young married couple, and their beautiful children–the boy is twenty two months and the girl is just over a month–have been such a blessing to my life. That little boy is getting so big. I love how he can’t go to bed until he gives his roommate a kiss goodnight. Sometimed I think he thinks I’m his live in “manny” or something, other times maybe his adopted older brother.

Sometimes he’ll crawl into my lap while we’re watching a movie or after he’s grown bored of making a mess in the living room and just cuddle up against me.

When I’m holding him against my chest in moments such as that, my heart beats with more love than I knew possible and I am reminded of my yearning to one day have a child of my own.

I Choose to Live

January 23, 2013

I was given another opportunity to speak up for the disability community today.

We were discussing the ethics of abortion and genetic screening of the unborn fetus in philosophy class today. We ended up debating the ethics of aborting a fetus with a known disability or genetic disorder.

I could not keep my mouth shut. Not one to sit quietly while discussion treads upon the fine line, I spoke up. I looked at my classmates as I explained the nature of my disease and the effects it had on myself, my parents, my siblings and my friends.

I continued elaborately explaining how the people I’ve worked with and met as a volunteer at a therapy center for children with developmental disabilities, a tutor at my state’s school for the deaf and an advocate with my state’s coalition of self-advocates has shaped my views. From the woman with no hands who paints better than I ever could to the man who could not hear the beautiful music he created. From my deaf mentor whose own disability inspires his scientific curiosity as a professor of medicine to the wheelchair bound law student I recently had the privilege of getting to know over coffee.

These amazing people did not get to choose the hand they were dealt, yet they play one hell of a game anyway. To even think that they could be denied the chance to shine because society has not yet come to terms with reality brings tears to my eye and my heart. The reality is that disability does not play favorites. Everyone will experience disability in one way or another in their lifetime.

When asked by one of my classmates what I would have chose knowing I’d be born with this horrible disease, I responded simply,

“I Choose to Live.”

Not So Special Ed

January 13, 2013

I was a “special Eddy” right from the very beginning of my primary education. Having both visual and hearing impairments, I was given an early intervention specialist who specialized in students with visual impairment. So began my journey learning Braille and some basic sign language. By second grade it had become apparent that my hearing was dropping rapidly while my vision was stable (and, to this day, still is.) I was referred to a specialist that focused on students with hearing impairment while still learning Braille with the other specialist. The hearing specialist taught me both manual (sign language) and oral (speaking verbally and lipreading) methods of communication. This is called the “comprehensive deaf education” module. I was giving adaptive listening equipment for classes until I could no longer hear well enough to make use of it. By then I was introduced to a woman who would type out the lectures for each class.

Looking back, she, my original typist, was a wonderful woman, though, her skills as a typist were not of professional grade (professional live captioners have made a world of difference for me in college.) I often missed many things in class, such as a teacher cracking a joke. This had the effect of isolating me further from my peers. Though her efforts tore down some of the communication barriers I faced in class, I was deeply ashamed of her. Her presence was an embarrassment to me and served as further proof to my peers that I was “different,” isolating me further and further into a cold, dark and lonely cavern of depression and self-hate.

I should have been provided with a professional captioner, one who proved qualified through professional certification. Instead I was given a random woman pulled off the streets who followed me to each class. The price paid to save a few bucks on an accommodation I was legally entitled to under the Americans with Disabilities Act was my self-esteem. I felt like one of my mentally handicapped peers that required an adult to sit with them through class to prevent them from acting out. By God, if they were going to treat me like a retard (and I apologize for using that term) then I would act like one. And act out I did. I put on a show so marvelous and believable that I earned an all expense paid trip to the American Nutcase Awards where I was nominated for every psychological condition in the book, winning only one. First prize for my performance as Best Wild Child was another all expense paid trip, this one to meet the famed Therapist and have my hand print paved into the Traumatized Child Walk of Fame.

I would end up going through several typists after my return from, some better than others, as well as several deaf education specialists before my two years at Oregon School for the Deaf and after my return to public school. My blind education specialist was the same from kindergarten to my senior year of high school, though, I didn’t see much of her after returning from OSD.

Special education classes added even more fuel to the fire of my disdain for the system. It saddens me to admit that what the special education system is often made out to be and what it actually is are worlds apart. Whether or not it was ever intended to give students with handicaps an equal opportunity in education by accommodating weaknesses and encouraging growth in areas where the student shows strength, that is not the reality of it. Special education is a warehouse where dreams come to be broken and smashed into oblivion. In special education, students are not challenged intellectually, rather they are given subpar educational opportunities, allowing them to pass with the bare minimum in remedial classes. Early on, students are taught through the actions of their teachers to settle. Mediocre is perfectly acceptable in this environment. Just getting through is the goal of each individual education plan. The concept of higher education is rarely spoken of beyond trade school or apprenticeships. And where do you think budget cuts are made first? You guessed it, special education programs and schools for the deaf and the blind. That is essentially the government saying, and please pardon my language, “Fuck you!” Through their actions and government spending they are telling children and adolescents with handicaps that our education is not a priority to them. They are saying that we should be seen and not heard. A man without an education is a slave to his government and society’s expectations for him.

And when one’s own government doesn’t believe in you enough to invest in your education; when one’s own school board of directors do not believe in you enough to provide and pay for adequate accommodations as the law requires them to; when one’s own teachers do not believe in you enough to challenge you and push you to be all that you can be, then tell me, dear readers, why should you believe in yourself?

I was grossly under prepared to take on college. I failed the same basic math course more times than I care to admit. For the last three years, I’ve wandered in an out of classes feeling inadequate, less than human even, because I was not given an equal opportunity to succeed. Because I was given less than my peers in terms of a proper primary education, I viewed myself as less than my peers in terms of a human being. The idea that I might actually be an intelligent and capable human being was foreign to me until very recently. My last term was a turning point in which I aced every last one of my courses. And this term? Thirteen credit hours–four courses, including an introductory ballroom dance class where I am once again defying expectations–and three separate volunteer jobs; supervising activities at a center for children with developmental delays who remind me of my own childhood, tutoring at the very school for the deaf where I was once a student, and advocating for equal opportunities for people with handicaps in public forums, conferences and meetings with other like minded individuals with handicaps. Once I do transfer to a four year college, I’ll be declaring a philosophy major and a biology minor as a pre-medical student.

The little boy who was all set up to fail would go on to become not only a physician, but a mentor and a role model for which other students with handicaps could aspire to be like.

Wouldn’t that make for a better ending to this story?

Victor Chukwueke, a Nigerian immigrant, arrived in America at the age of fifteen in 2001 when doctors in his home country were unable to treat his disfiguring facial tumors. Victor, diagnosed with Neurofibromatosis, was determined to make the most of the new opportunities America granted him.

Victor completed his GED, enrolled in a community college and eventually graduated from Wayne State University with a GPA of 3.82 in his studies in biochemistry and chemical biology while simultaneously undergoing medical and surgical treatment for his tumors.

It’s fair to say that, just this blog’s author, Victor’s experiences as a patient changed his life and he vowed to become a physician so that he could one day have the same influence in the lives of patients that his doctors had in his. Only one thing stood between Victor Chukwueke and his dream of attending medical school: citizenship.

In a miraculous turn of events, a Michigan congressman, Sen. Carl Levin, took interest in Victor’s inspiring story and introduced a private bill into congress to grant Victor American citizenship. Represented pro bono by attorney Thomas K. Ragland, the bill passed congress and was eventually signed into effect by President Obama, making future MD, Victor Chukwueke, eligible to attend an Ohio medical school.

For further reading:
Obama Signs Into Effect Bill Granting Victor Chukwueke Citizenship

Lung Biopsy

September 9, 2012

Four days after my biopsy. My soreness is all gone, but I’m coughing up a little blood. My airway feels much more “open” and breathing is easier than I remember it being before. Earlier this week I was choking on the surplus of air I was able to get into my lungs. Yes, “lungs.” Two of them working together.

That’s a victory to me.

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