“You will have to make up for the smallness of your size by your courage and selfless devotion to duty, for it is not life that matters but the courage, fortitude and determination you bring to it.”
In the fifth grade I was made to memorize, verbatim, these words by the founder of Pakistan, Muhammad Ali Jinnah. The student council at my elementary school in Karachi was made of fifth and fourth graders, with the Head Boy and Head Girl selected from the former through an election (perhaps to give Pakistani children a taste of the democracy which, up until that point in their country’s short history, had mostly eluded it). I was nominated as one of three candidates for Head Boy and was expected to give a speech touting my accomplishments and suitability for the task. My homeroom teacher dictated the entire speech to me on the phone, including the above quote by the Father of the Nation. My own father frowned disapprovingly as I repeated aloud the words coming in from the earpiece and wrote them down. After the phone call ended, he looked at the written speech and said, sounding supremely offended, “why is she making you say these things about your height?” It seemed as if the implicit comment on my then short stature was a critique of his own genetic caliber. I told him why not? I am short.
I thought that the teacher had chosen an apt quotation for my situation – through Jinnah’s eloquence, she had turned my ostensible weakness into a strength. It was not the size of my body that mattered in my duties as Head Boy, it was the size of my, well, Head. But until today I, like many others who routinely cite Jinnah’s words, did not know the context in which they had been spoken. On January 23rd, 1948, a little less than a year after Pakistan was created through the independence and partition of British India, Jinnah addressed the fledgling country’s Navy, which at the time was admittedly small. He encouraged his listeners: “Pakistan is still in its infancy and so is its Navy and other branches of the Armed forces. But this infant means to grow up and God willing will grow up much sooner than many people think.” And grow it did, becoming an important component of the sixth largest armed forces in the world by active military personnel. But what if there had been a barrier to this growth? Some kind of inherited affliction? Though the Pakistani Navy didn’t have any such disability, I was soon to discover that I did.
My fifth-grade homeroom teacher might have been aware of how much I was teased for my shortness of stature. And although my father took issue with her capitalizing on my perceived disability in order to get her own student elected Head Boy (which I didn’t ─ I became Deputy Head Boy), he, my mother, and I soon came to worry about the prospects for my growth. Would I remain my current size for the rest of my life? Thereafter began an aggressive campaign to prove wrong that frightening conjecture.
The first of the many interventions involved installing a jungle gym in our sehen, a backyard-like area paved with concrete common to South Asian houses. It was erected right in front of my brown and green treehouse, which once upon a time I used as a pretend secret laboratory after Dexter (do you see to what extent I had absorbed cultural tropes such as the “short genius”?). The monkey bar was also painted green and brown to match the treehouse, and we placed a spare mattress beneath it for added safety. I was expected to spend some time hanging from the bar every day after I came home from school, which I did in addition to performing other gymnastical shenanigans. Suffice it to say that they didn’t work. I remained vertically challenged.
My parents took me to our pediatrician, a kind but no-nonsense doctor with a wiry beard, a thin frame and similarly thin wire-framed spectacles. He informed us of the terrifying possibility that I may have a deficiency of growth hormone (GH). I don’t remember if he drew up a referral to a pediatric endocrinologist (I don’t even think referrals were a part of the Pakistani healthcare system at the time), but in any event, my father, because he worked for a telecommunication company under the auspices of the government, was able to get us seen by a specialist a few days after, who then signed me up for the herculean Growth Hormone Stimulation Test.
I was forbidden to eat anything for up to 12 hours before the test. A first sample of blood was taken right when I got there early in the morning, after which I was injected with the amino acid arginine in order to gauge how much GH was being produced by my pituitary gland, the pea-sized “master gland” in the brain. I believe the test lasted about four hours, with the nurses poking me in the elbow every half hour to collect blood samples. These days, a child is hooked up to an IV in order to minimize needle pokes and thereby make the process less painful, but at that time and place, in the early 2000s in Pakistan, that wasn’t an amenity we were offered. I distinctly remember the sharp pangs of hunger during the test and how I drifted into and out of sleep, with my father sometimes giving me an encouraging pat on the back. I also remember fondly my mother’s spicy chicken karahi which I devoured as soon as I made it back home.
The results were not promising: I was GH-deficient. We went back to our pediatrician for his opinion on treatment and he, like the endocrinologist, suggested the highly expensive growth hormone replacement therapy. I remember my parents eyeing each other furtively and how my heart sank and my eyes welled, ready to accept my arrested development as destiny. At the time of my diagnosis, synthetic GH could cost as much as 25,000 Pakistani rupees per month, making the 2-year treatment a staggering sum. But my father relented.
The hormone came in hypodermic needles in large Styrofoam packages which were to be stored in the refrigerator. My father administered it on alternate days and in alternating locations, sometimes the shoulder and at other times the thigh. He soon became an expert in subcutaneous (under the skin) injection. He first rubbed the alcohol swab on the designated spot, icy to the touch from being in the refrigerator with the syringe. He inserted the needle into the tiny vial of hormone, inverted the two, and gingerly pulled the piston until the syringe was full of colorless liquid. He then pushed the piston until a few drops emerged from the needle like morning dew, while also gently flicking the syringe to make sure there were no air bubbles. Then, finally, the poke, after which there would appear a red and itchy bump on the site of injection like a mosquito bite. I would wait until the bleeding stopped and the bump dissipated. We followed this ritual, without much conversation, for 3-4 days per week over 2 years, punctuated by monthly checks of my height to make sure the treatment was working, which to my and my parents’ relief, it was. The wall across from my bed became a canvas for pencil markings made right above my head. The distance between each mark grew exponentially, following the requirements of the serpentine development graph the pediatrician had given us to log my progress. It was a marvel of modern medicine.
The history of “proportionate dwarfism” – what would have been my disability if I had not been “treated” – and the history of the synthetic hormone prescribed for it are both notable. The most famous of proportionate dwarves is Charles Sherwood Stratton, better known as General Tom Thumb of P. T. Barnum’s circus, most recently fictionalized in Hugh Jackman’s 2017 film The Greatest Showman. Of course, my shortness was nowhere near that of Thumb, who stopped growing normally at six months and by the time of his death in 1883 he only came up to about three and a half feet. Otherwise, he was completely healthy. In 1863 he married another proportionate dwarf, Lavinia Warren, and the “Fairy Wedding” was covered extensively in the media, with the couple even appearing on the cover of Variety Weekly. Scientific American covered it as “The Lilliputian Wedding.” The pair were immensely popular; they traveled the world with Barnum’s circus and performed all over the world, even for the likes of Queen Victoria and Abraham Lincoln
It was just as well, then, that when he was a child, Thumb’s parents had taken him to a doctor, but the latter had dashed any hopes of his growth. But we don’t know what Thumb himself would have done if he were in my shoes, given the option of “treatment.” I have no doubt that he would have taken it: height, masculinity, and success are linked to a pathological degree in both our times and cultural milieus. As journalist Stephen S. Hall notes in his book Size Matters (2006), “Indeed, tall stature has become so synonymous with success, wealth, leadership, and sexual desirability that a kind of ‘altocracy’—if I can coin a word—has emerged. Countless social science surveys have shown that the public uncritically ascribes positive traits to tall people—more intelligent, more likable, more dependable, and better leaders.” I often wonder to what extent healthy shortness, my mostly benign affliction (not counting the bullying which it inevitably attracted), was a disability. One of the first things you learn in a disability studies class in college is the distinction between the medical and social models of disability: the first individualizes and pathologizes alternative, non-normative modes of embodiment, seeking to “cure” them. The second considers disability as socially produced through barriers in the environment: buildings without ramps for wheelchair users, the absence of braille or alt-text for blind people… prejudice against and hazing of “little people.” There was no way for me, as an 11 year old boy, to know that there really wasn’t anything wrong with me per se, but I lived in a world where if I did not grow taller I, despite being an excellent student and the first in my class every year, would not reach the proverbial heights I aspired to.
The “cure,” synthetic GH, did not come out of nowhere. Before physicians and medical researchers could even conceive of a synthetic hormone, they sought to use a form directly extracted from human and animal brains. The man who first discovered the animal form of GH in 1924, Herbert McLean Evans of UC Berkeley, was born in California in 1882, a year before the death of General Tom Thumb. He, along with his Chinese colleague Choh Hao Li, went on to extract a minute amount of pure bovine GH in the mid-40s, to widespread media coverage. A headline in a 1944 New York Times article announced with somewhat tempered excitement: “Hormone to Aid Growth Isolated, But it is Too Costly For Wide Use; Scientists at University of California Say It Offers Hope Only for a Few Dwarfs – Proved in Animal Tests.” In 1956, Li, the Chinese scientist from Evans’s lab, sent some of the bovine GH to a physician named Robert Blizzard of the University of Virginia. Blizzard, who died only recently in 2018, claimed that he was the first to test the bovine GH on a human subject, a three-and-a-half-year-old girl suspected to have growth hormone deficiency. However, the bovine GH did not work on her, proving that the hormone was species-specific. Within a couple of years, Li and two other scientists from other institutions were able to isolate the human form of GH, hGH, from human pituitary glands. Almost a decade later, Li elucidated the structure of the protein: a stringy, convoluted assemblage of 256 amino acids.
The extraction of hGH from human pituitary glands for research studies was approved, but treatment with hGH lagged because collection and extraction of hormone was extremely difficult: it took at least 35 pituitaries to yield enough hGH for a single treatment. It also led to the establishment of a black market in brain tissue. Blizzard was thus asked by the National Institutes of Health to establish the National Pituitary Agency (NPA) in 1961 to streamline and regulate the process, but the criminal enterprise in brain tissue persisted. Blizzard notes in his historical survey of growth hormone that in 1965, a morgue worker in a major US city’s medical examiner’s office not only collected pituitary glands from the corpses and shipped them to the NPA, but also made a considerable sum by extracting gold from their teeth, using it to build a residential swimming pool which he lovingly called “the pit.”
More controversy was in store for hGH. From 1963 to 1985, the NPA sent hGH to hundreds of doctors across the country, with about 7,700 “hypopituitary dwarf” children enrolled in therapeutic research trials. However, in 1985 it came to light that three people treated with hGH from the NPA in the 60s had died of Creutzfeldt-Jakob Disease (CJD), a neurodegenerative disorder caused by misfolded proteins called prions. Fortunately, by this time synthetic or recombinant hGH (rhGH), made by gene-splicing in bacteria, had been in human trials run by big pharmaceutical companies like Genentech. It was approved by the FDA for treatment of GH deficiency in 1985, the same year of the CJD controversy, and marketed by Genentech as Protropin. While only up to 4000 children a year could be treated in the NPA program, the new rhGH would allow for 10-15,000 kids to receive the hormone annually. However, administration of hGH in the NPA program had been free; the synthetic hormone from a drug company would be cost prohibitive for most American families, let alone those living in the Indian subcontinent.
A 1956 article in the New York Times, covering a meeting of the American Cancer Society, proclaimed: “The most effective method of controlling cancer is the removal of the pituitary, without which growth of any tissue, normal or abnormal, is impossible. The pituitary has been removed from some cancer patients with good results.” It even mentions Dr. Choh Hao Li, who spoke at the conference about how his research into hGH could potentially influence cancer treatment. After all, cancer is abnormal, unmitigated, catastrophic growth. So it was not an entirely ludicrous question to ask, when I was diagnosed with acute lymphoblastic leukemia (ALL) in 2011, six months after our move to the US, if my rhGH therapy may have had a role to play. I believe my father had asked the oncologist, but she said there was no way to know. Scholarship on the issue is unclear: scientists have attempted to answer the question since the mid-1990s up until today, and there is conflicting evidence. One paper from 1995 suggests the possibility that it is not treatment with rhGH but growth hormone deficiency itself which could be a contributing factor. Others indicate that rhGH may increase the risk of other types of malignancy like bone cancer, bladder cancer and Hodgkin’s lymphoma, or increase the likelihood of relapse in patients already treated for cancer. The evidence on ALL is slim to negligible.
But what if it wasn’t? If I knew for sure that it was those nights of rhGH injection which did this to my body, would I have regretted trading one disability for another? Or rather, a social disability for a life-threatening malignancy?
On January 30th, 2019, I leave the oncologist’s office in Ann Arbor with a certificate of graduation. “Cure of Leukemia,” it says in ornate, Gothic font typical of academic diplomas, enclosed by an arabesque border. It is my final follow-up with the oncologist. I had stopped my chemotherapy in 2014 and had been in remission since then, but had to go to the cancer clinic every three months at first, and then every six, to get my blood drawn so that they could watch for signs of relapse. Five years of remission mark the threshold of “cure” for acute leukemia. But unlike my rhGH treatment where growth had been the cure, here cure is the cessation of growth.
One of the seven canonical characteristics of living beings is the ability to grow and develop. For most of us, growth is a matter of course, only becoming an existential threat when we age. But for many like me, it is a philosophical conundrum.
Grow too little, and you’re a social problem. Grow too much, and you’re dead.
This essay received the 2021 Hopwood Graduate Nonfiction Award from the University of Michigan’s Hopwood Program.
About the Author
Bassam Sidiki is the Nonfiction Editor at Asymptote and a Ph.D. Candidate in English at the University of Michigan, where he studies disability studies, postcolonial studies, and the medical humanities. His creative and academic work appears or is forthcoming in such venues as Hyphen, LARB, The Bangalore Review, The Aleph Review, Counterclock, Synapsis, Journal of Medical Humanities, Literature and Medicine, and the Journal of Literary and Cultural Disability Studies. Follow him on Twitter @Bassidiki.