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Marlborough native discusses memoir on dwarfism and surgery

Posted by John Swinconeck  May 14, 2013 02:05 PM

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Courtesy Tiffanie DiDonato
Tiffanie DiDonato will appear at Marlborough Public Library to discuss her book, "Dwarf: A Memoir."

Marlborough native Tiffanie DiDonato has spent a lot of time in the operating room. Born with a form of dwarfism that DiDonato said would rob her of her independence, she undertook a series of painful, bone-lengthening procedures over several years.

DiDonato will appear Wednesday at 7 p.m. at Marlborough Public Library to discuss her book, "Dwarf: A Memoir," and her personal story.

DiDonato said she lost count of the number of surgeries she's undergone for dwarfism — the first of which occurred when she was 10-months old — and many of which were performed to correct bone deformities and abnormalities.

When she was 8, DiDonato's mother, Robin, decided that, the best way to ensure a good quality of life for her daughter would be a painful and risky surgical procedure to lengthen Tiffanie's limbs and increase her height.

"My mom had me go through it when I was eight and I didn't have a choice," Tiffanie DiDonato said. "A lot of people said 'that's so cruel,' but truth is, it was just another surgery. It was like a walk."

Robin DiDonato, who still lives in Marlborough, explained why she made that decision. "My main goal was for self-care and independence – for a life of her own. That was my focus, that she would have the best life she could have without being dependent on others. … Growing up, she was a very happy kid, but I was worried for her future."

DiDonato said her mother wanted her to have the surgery so that her body would function better, especially her arms. "I couldn't reach the top of my head. I couldn't reach my earlobes. I couldn't reach doorknobs," she said.

DiDonato recalled how she would get locked in the bathroom at school, because she was unable to reach the latch on the door. "There was no independence."

The procedure and recovery for bone-lengthening are "excruciating," she said, and there are risks. The bone can fail to grow into the gap, and there's also a possibility of nerve damage. DiDonato said that it was worth it.

"I feel like risk comes with everything," DiDonato said. "Even when I was 8, I noticed a difference. Can you imagine never reaching a doorknob in your life? All of the sudden, I can go outside the door. It's a whole new world. That's hard for a lot of people to grasp. I can reach light switches–that's huge!"

After her first surgery, DiDonato said she gained 2 inches in length in her shins, 2 inches in her thighs, and 2 inches in her arms. Robin DiDonato said she let her daughter decide whether or not to undergo additional surgeries.

She had her second surgery at age 13. However, when she was 15, she and her orthopedic surgeon at Boston Children's Hospital came to an impasse. DiDonato said she wanted her limbs lengthened further. Her doctor said it was too risky. "I said goodbye, and went to UMass in Worcester," she said adding that she and her former doctor parted on good terms.

Her father also opposed the surgery. "At the time, he hated it," DiDonato said. "He was against it. He struggled to be around it. He never talked about it. My mom was my advocate. She had to be hardcore, or I would break."

DiDonato said she was 17 or 18 when she had her final lengthening surgery. All told, she gained more than a foot in height.

Today, DiDonato stands at 4 feet 10 inches. "However, I just bought a monster pair of sneakers with platforms, so I'm pretty sure I'm five-two," she added, tongue-in-cheek.

DiDonato said her writing started as a journal that hadn't been intended to be public.

"My mom's a nurse and my dad works at Home Depot," she said. "I was going to be home alone. You have to have a function. I hated the pain pills — the uppers, downers made you tired. I swear, I could taste it. I started to write everything I was feeling. I couldn't sleep at night. I literally laid in bed. One night my dad came home and gave me this old computer. I had been writing a journal, and so I put it on my dad's computer, printed it out, and then started another journal. It was an escape. Before I knew it, it was seven in the morning, and I had found a way to deal with the pain."

DiDonato's family has a strong connection to the military – her mother was a lieutenant in the Air Force, her father served in the National Guard, and her grandfather was in the Navy, and DiDonato said she would have joined had she been qualified. While attending UMass Dartmouth, DiDonato joined a penpal program for those serving, and that's how she connected with Gabrielse, a 6-foot tall marine.

"I laid everything out" in her messages, she said. "I told him about my story, about dwarfism. I told him how I wasn't a tall, voluptuous blonde. But, if you need a friend, I'm here."

The two continued to write, and eventually, DiDonato sent Gabrielse a rough draft of her memoir. After his tour in Iraq, they met at Gabrielse's base at Camp Lejeune near Jacksonville, North Carolina, where, DiDonato said, it was "love at first sight." The two compared life stories and even scars – hers from bone-lengthening, his from war, including a roadside bomb attack.

Today, the two are married and live in North Carolina. They have a year-old son, whom they've named Titan. DiDonato said she's working on another book, one that would focus on independent living, with being a mother, and having dwarfism.

"I never thought this would be my life i just wanted to drive a car, and do my own laundry. Now I'm happy to share my journey, my struggle, with everybody," she said.

Since her memoir was published by Penguin, DiDonato and her family have appeared on national television, including "Nightline," "Good Morning America," and Anderson Cooper's "Anderson Live."

In an email, DiDonato stated, "My memoir is not just about dwarfism. No. It's so much more. It's about overcoming anything you struggle with and ignoring the phrase, 'you can't.'"

Reading "Dwarf," Robin DiDonato said, brought back memories and "tears to my eyes."

"She never verbalized the significance of the pain or the challenges, but she sure was able to write about it," she said. "She was not a complainer. She never was."

Not everyone would agree with the choices she and her mother have made. The lengthening surgery has been opposed by some in the little people community. The group Little People of America (LPA) opposes limb-lengthening surgery because it addresses height, but no other medical conditions.

LPA states, in part on its website, http://www.lpaonline.org/faq-#Surgery "As a general statement of philosophy, most members of the dwarf community believe that no child should undergo surgery unless it is for a treatable medical condition that will improve her or his health."

"There's this culture, this ideology, that I should have accepted myself the way I was. That I should have embraced having dwarfism, that you can be independent by asking for assistance, which seems like an oxymoron. The notion that i can't accept myself couldn't be further from the truth."

"I don't associate myself with dwarfism," DiDonato said. "I don't like asking for help. That's where we clash. I don't like having to use utensils to reach for things. It was risky, and a lot of bad things could happen. But you only have one shot at life."

"It's your child," Robin DiDonato said. "Don't let someone stop you from doing what you think is right."

DiDonato said she still has bad days and challenges related to dwarfism, but the surgeries has helped make little things – such as reaching a doorknob or turning on a light switch – possible, and that makes life easier. "I still have a lot of living to do," DiDonato said.

John Swinconeck can be reached at johnswinc@gmail.com.

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