Read an Excerpt from Patti M. Hall's Touching Memoir 'Loving Large'

When her son was diagnosed with gigantism after the discovery of a tumour, author Patti M. Hall's life flipped upside down. Career and relationship goals were pushed to the sidelines, with every ounce of attention and strength going towards his care and treatment.

This harrowing chapter of her life was the basis for the new memoir Loving Large (Dundurn Press), a heartfelt story of a mother and son's struggle and resilience in the face of unbelievable odds.

A rare medical condition, gigantism causes rapid and excessive growth in children, dramatically cutting short life expectancy without quick and effective treatment. Hall takes us through appointments with medical experts, past hospital hallways and elevators full of whisperers and gawkers, and into the life of a family blindsided by an unexpected and severe diagnosis. Punctuated by plenty of lighthearted, colourful moments, Loving Large renders a dynamic portrait of love, hope, and new beginnings.

We're thrilled to share an excerpt from Loving Large on Open Book today.

Excerpt from 'Loving Large: A Mother's Rare Disease Memoir' by Patti M. Hall:

VIGILANTE

              By April, our lives consisted of hospital days and non-hospital days. On hospital days Aaron plodded along at his own long-strided pace, staying just a foot or two in front of me, close enough that I almost tripped on his heels when our feet got out of sync. He navigated obstacles at ceiling height that the rest of us didn’t notice, like the lit-up EXIT sign and those pointing to washrooms, elevators, and clinics. The ones fixed in place and not swinging from eyelets were particularly dangerous for Aaron. He’d push a door open by spreading his fingertips out and pressing at its very top corner, while his thigh hit the push bar that was at my waistline. The long bent arm of the hydraulic box might have taken out his eye if he wasn’t paying attention. His hat could be knocked off by it, but he had this — his world — all figured out.

              In the early hospital days he walked behind me through the innumerable institutional hallways, but once he knew the way, he liked to go ahead so that he could yank open the doors, push all the buttons, and grasp all handles for me. It was something he’d done as a little boy too. Some proof that our lessons in manners had paid off, maybe. Or he was just the kid who has to be in charge. More likely that. When I walked in front I could see where we were going; otherwise my only view was the big red wall of Aaron’s back. Even at five foot six inches, I was easily shrouded behind my giant son. But back there, as he careened through crowds, I didn’t have to see people stare at him. And they did stare. They didn’t just glance up and then retrain their eyes on the floor. They looked at the baby-faced, nearly seven-foot-tall guy and ran their eyes up and down him, maybe to confirm they weren’t imagining or that he wasn’t in costume, on stilts, or being carried on someone’s back. Maybe they thought some circus entertainers had come to cheer up the residents. Up and down again, back to me where I had come into view, up at him, repeat. I guess when someone’s head is only a couple of inches from the ceiling, it draws attention. Everyone’s attention. They couldn’t help but look. But it hurt me. I didn’t know what it was doing to him.

               I had always been terrified of conflict, but now I was provoked into making eye contact with the staring people. I hoped my glare would draw their ogling back to me. Away from Aaron. In enclosed spaces like elevators and waiting rooms, folks softened a little. They stared but tried smiling in our direction, as if cognizant of their rudeness and preparing to meet Aaron’s gaze if he looked up from his phone, computer, or book. Sometimes if I judged their intentions to be genuinely kind, I’d quell the tension by blurting out something friendly. But they weren’t always kind. There were the whisperers and — these were the worst — gawkers who elbowed the person beside them and nodded toward Aaron so their friend wouldn’t miss the show. There were also the pointers and the people who tried to take a selfie, sidling up near Aaron, aiming their phones up to their own face and then tipping them just enough to capture him in the frame. In elevators, the food court, and on the subway they were the worst of all. People weren’t cruel 99 percent of the time, but they offered a horrifying study in human behaviour, and regular, blatant reminders of our societal obsession with difference.

              I added a one-inch turquoise binder with a magnetic clasp to the stack of notebooks that I took with me everywhere. It held essential test results, referral letters, and a cheat sheet of locations and phone numbers of doctor’s offices and labs. I really could have used a smartphone back then. I started keeping a Word document with dates, measurements, weights, and hormone levels, not only because I couldn’t remember — my brain was rapidly turning to mush — but because I’d already learned that passing it to the person creating a new chart or doing a pre-consult for the next specialist could achieve Priority One: minimizing Aaron’s frustration. I didn’t want us bickering about accuracy in front of someone. I didn’t want us to be that pain-in-the-ass family that grouses in the office while the doctor is trying to get to the important facts. I knew that my diligence on this front worked because the follow-up letters sent from one specialist to another described Aaron as a “polite young man” and a “well-mannered teenager.” They were more likely to make recommendations quickly and go out of their way for that kind of child (and his congenial, well-informed mother) and I needed that tactical edge.

              And we were becoming good entertainment too. We were developing a bit of a schtick, with the comedic timing of a pair who’d done stand up together for a long time.

              “How tall is he?” a stranger or new doctor, nurse, or lab technician would ask me (almost never addressing him).

               “Six six or so,” I’d say. (Audible gasp.) That was his height in the early medical days but the second digit changed to seven, eight, nine, ten, and finally eleven in time.

              “Will he get any bigger?”

              “Yup, he’s still growing.” Then to Aaron, they might say, “Do ya play basketball?”

               “Only if you’re a Raptors recruiter.” He had a vast repertoire of responses. My personal favourite was “No, I’m a jockey.” That always left them with their mouths hanging open, and the delay while they figured out the size humour gave us time to make our escape.

              We knew how to tailor our material to the audience — whether they were little kids, groups of teens, kindly older people, or name-tagged hospital personnel — and to the particular look on the face of the gawking person. We could meet the rude, demeaning ones right where they stood. These ones would often look at Aaron and then more than a foot down at me and ask, “How’d he get so tall?”

              I’d be the straight man. “He’s a giant. Like, André the Giant.”

              “How’d that happen?” the person might then ask, as if inspired by some movie plot about alien babies or gigantic man-eating plant pods.

              “I was breastfed,” Aaron would lob in. Poker-faced, we’d both step off the elevator, then giggle our heads off as we sauntered down another hospital corridor.

               Keeping us fun together was easy. It always had been. And so little was left unchanged that we clung to the goofiness and humour that was the bedrock of our connection, me and my boys.

              Meanwhile, I ran battlefield-scale manoeuvres in my mind while I went about my daily life. I had to be doing something related to Aaron’s medical situation all the time. A backward glance now shows me that my intentional exertions weren’t always what moved things along; sometimes it was chance. I would research random medical references I saw dropped in online stories, and then the universe (another comedienne) would plop the solution in my lap. I was too deeply imbedded to recognize that coincidences were opening up treatment options more quickly than anything else. Meanwhile, these evidences of providence confirmed the six-degrees-of-separation rule. You know the theory, that if you could map out your network, you’d find you were a handful of steps removed from knowing someone like Queen Elizabeth. Actually, it has a more logarithmic basis, and it’s about how humans are all connected by our social relationships. It wasn’t a theory to me anymore.

               One of the first twists of fate showed itself back at Sick Kids, after Dr. Lindgren admitted that his team didn’t have a surgeon who had performed a transsphenoidal procedure — the removal of tumour fragments using instruments and a camera inserted through the nostrils. So I asked if there was even a surgeon in the entire city that had seen one of these.

              “Yes, there is, at St. Michael’s Hospital. Cusimano does these.”

              I gasped. “Cusimano.” It couldn’t be the same one. “Michael Cusimano?”

              “You know of him?” Dr. Lindgren asked, surprised I presume, that I was tapped into brain surgeon 4-1-1.

              “I actually do.” Feeling the amazement at the same time I was saying it. “He’s my father’s doctor,” I said. “Or he was. He cared for my father through a head injury years ago.”

              Michael Cusimano had been the on-call neurosurgeon after Dad was T-boned in a car accident years before and barely survived injuries to his head and one leg. I’d never researched Cusimano’s credentials or specialty, and it seemed like a far-fetched fortuity, but if being my father’s doctor once was something that could help my child get closer to a clinic consult with an experienced brain surgeon, I’d use it. Of the few dozen neurosurgeons in the region (they all know each other), what was the chance the one I had a connection to was the one who had experience with this type of tumour?

              Dr. Lindgren left me a cellphone message to say he’d faxed a letter to Dr. Cusimano. Hesitating a little just before he signed off, he added, “And … please call back if you don’t get the outcome you want.” I didn’t know what he meant and couldn’t ask a recorded voice. Call him if we don’t go with the other surgeon? Call him if we want to take his team up on their offer to “give it a go” with some scalpels and suction in my son’s head? Call him if Cusimano screws up? Call him if our kid doesn’t make it? Gets sicker? If we get worse news? Was medicine a competitive business too? If one salesperson sells you a lemon (even if that lemon is your darling child’s future quality of life and the sales dude is a surgeon), then will the next one play the have-I-got-a-deal-for-you game?

              It wasn’t like I was planning a family vacation and trying to choose between one hotel or another. I didn’t want either. I didn’t want my son to need a brain surgeon at all. I wanted brain surgeons to go back to being something I joked about not being when I lost my car keys. There was no chance in hell I was going to get the result I wanted, because what I wanted was for it to all disappear. Evaporate. Poof! Like it never happened. I wanted to sweep the reports, test results, and especially diagnostic images under the thickest, heaviest rug I could find. More than anything, I wanted Aaron to go back to being normal in every way. I wanted him to forget about the dozen doctors and half as many hospitals. About missing school only to tolerate often rude white-coated strangers standing around him and talking about the size of his hands (Oh my God!), thickness of his tongue (I’ve never seen anything like it!), or unusual hormonal levels (Did you see the growth hormone this kid has?). I wanted him to knee-jerk respond with his sauciness again when people asked him overly personal questions.

And even though the universe seemed to be intervening, I left nothing to chance. Not anymore. I didn’t even wait for the official referral.

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Patti M. Hall is a non-fiction writer and writing coach. Patti lives with her two sons in Bradford, Ontario.