ADAPTING TO LIFE WITH ME
“Cut,” screamed David Hogan in his British accent. “Let’s effing do it again.”
The rocking music was cued and the scene began to swell once again, filling the air around me.
“Three, two, one, action,” called Hogan, and I began to dance like I’d never danced before.
It was April 14, 2004. I remember the date clearly, because it was the day before tax day. Through a very odd set of circumstances, I found myself dancing in a music video on a pedestrian footbridge that spanned the Cumberland River in Nashville, Tennessee. David Hogan is a veteran industry director and I was trying extremely hard to give him, and John Rich, a longtime friend and one half of the duo Big & Rich, exactly what they wanted.
At the wrap party that night, I learned that Hogan was skeptical about having me in the video and had worked me that much harder during the day. But he and everyone else ended up being pleased with my performance. I was very excited, as this was my first real experience in the entertainment business. In fact, it was my first encounter with country music beyond being a fan.
The video being shot was for a song called “Save a Horse (Ride a Cowboy),” by Big & Rich. The song and video went on to become their first big hit and established them—and me—firmly in the hearts of millions of fans worldwide. On this day, however, none of us knew we were making history.
The day before, I had driven from my hometown of Seymour, Indiana, in my blue and white 1989 converted van. The conversions were needed because, as a diastrophic dwarf, I stand three feet two inches tall. Before it was converted, my arms and legs would not have been nearly long enough to reach the pedals, steering wheel, or controls, but the conversion allowed me to travel thousands of miles up and down the road to manage my many businesses and my life.
When I arrived in Nashville I got out of the van through automatic doors that opened to allow a hydraulic lift to lower my Rascal electric scooter to the ground. Then I promptly checked into the Renaissance Hotel. I went out to dinner by myself, then set my alarm for three thirty A.M. and went to bed very early.
The next morning I was nervous, anxious, and excited all at the same time. Part of my anxiety came from not knowing what was going to happen. I felt out on a limb, as if I was jumping off a bridge without a safety net. Questions such as “Where will I use the bathroom?” and “Who will help me into my wardrobe?” rushed through my mind. These were questions that followed me every day of my life, questions that most people do not have to deal with.
I drove my scooter several blocks through the deserted early morning streets of Music City and arrived at the pedestrian footbridge a few minutes ahead of my four thirty A.M. call time. I quickly found out what a “call time” was, and about the concept of “hurry up and wait.”
You couldn’t miss the location; tents and floodlights were set up, and the smells of hot coffee and doughnuts were overpowering. At that time of the morning it was extremely cold, so I got a cup of coffee, introduced myself to the crew, and met some of my fellow cast members. The first person I met on set was Sarah Darling, now a rising star, who played the part of the mannequin.
Up to that point, the only person involved with the shoot that I knew was John Rich. John is the former colead singer and bass player for the band Lonestar. He also had a budding solo career. We’d met years earlier at Fan Fair (now called the CMA Music Festival). This event was, and still is, country music’s premier annual fan gathering, and there, John and I had become friends.
When John hooked up with his friend Kenny Alphin, whom people call Big Kenny, they formed the duo Big & Rich. In late winter earlier that year I had gotten an unexpected and thrilling e-mail from John. He asked if I could appear in their first music video. Could I? Let me think . . . I believe my exact reply was, “When and where?”
I had to rearrange my schedule to make the shoot. This was difficult because the date kept changing. The day the shoot was finally set in stone happened to be the same day there was an open call in Alabama with the QVC network. I had intended to pitch my fledgling spice and seasonings product, Phat Freddie’s, there. But I knew in my gut that appearing in this video was the opportunity of a lifetime. I didn’t want to miss it.
Instead of going to Alabama, I endured both freezing-cold and blisteringly hot temperatures, long waits, and a chaotic swarm of people—and I loved every second of it. At the final wrap party, which was held at Fontanel, the former home of the legendary Barbara Mandrell and now one of Nashville’s public landmarks, I had the opportunity to spend more time with John and Big Kenny, and also with their friend the then-up-and-coming country star Gretchen Wilson. I also hung out with Cowboy Troy, James Otto, and the rest of the MuzikMafia, a modern-day group of singers, artists, and musicians who pushed country music’s boundaries to its limits. It was all quite a thrill.
When I look back, even I have to admit that the circumstances that brought it all together were both amazing and divine.
I WAS BORN July 27, 1974, the first child of Steve and Janet Gill. My dad worked third shift for a company called Cummins, in their plant that made diesel engines. During the day Dad had a dump truck and backhoe that he used in his excavating company. My mom was a first-grade schoolteacher and taught for nine years before I was born. There were no ultrasounds back then so until I was delivered, no one knew that I was a dwarf. As you can imagine, my arrival was surprising and caused quite a bit of confusion. But as you’ll read, my family adapted quite readily to this unexpected transition in their life.
Along with being a dwarf, I had a cleft palate, clubfeet, scoliosis, and, as is common to diastrophic dwarves, shortened fingers and limbs, and cauliflower ears. To top it off, I was the first dwarf that our family doctor, Bill Blaisedell, had ever assisted into the world.
Back then Schneck Memorial Hospital in Seymour, Indiana, did not have the capability to handle a newborn with my medical needs, which were not fully known at the time of my birth. While my mom stayed in Seymour at the hospital, I was rushed to Riley Children’s Hospital in Indianapolis, more than an hour’s ambulance ride north. A caring nurse rode with me, and Riley was where I spent my first several weeks. I know my mom was worried sick about me, and not being able to be at my side during my first few days had to have been terrible for her.
Dr. Blaisedell once said in an interview for a video documentary that I produced that he had a lot of concerns about me from the moment I was born. “From the very get-go, it was obvious there would be very big health problems with Fred,” he said, “but I have to give credit to his parents because they both jumped right in and did whatever they had to do to give Fred everything he needed to have a shot at doing something with his life.” As of this writing, this documentary has yet to be released.
And I do have some amazing parents. In fact, my whole family was, and is, pretty remarkable. After I was born, my mom quit teaching so she could stay home to take care of me and also keep the books for my dad’s businesses. It worked out well, because I had special challenges and it was best for me that she was there.
Now, as an adult, I realize that Mom was quite overprotective of me, but she was also an adaptable person who put others first. She once told me that the one thing she wanted more than anything else in life was to be a mother, so adapting her plans to benefit me was natural for her. Do unto others. It’s one of God’s commandments, but many of us struggle with it. Fortunately for me, although Mom was not perfect, she didn’t have that particular problem.
By all accounts I was a very happy baby, but caring for any young child can be exhausting, much less a dwarf child who has multiple health problems. Giving my mom a break, Dad often took me with him as he worked hauling gravel or sand in his old, loud dump truck. I’d sit on the seat beside him and smile as he moved dirt and rock from one side of town to the other. My dad has said that this is one of his favorite memories of me, and I know the experience helped us bond when I was still very young.
As for my mom, her earliest remembrance of me was my smile. Apparently it was always there. “When Fred went home from Riley one of their resident doctors said he had never seen a baby at that age with such a big smile,” she once said. “And that is Fred. He always had a smile on his face and his eyes wide open as if he were saying, ‘I’m ready to take on the world.’”
But it took more than smiles and dump trucks to get me through my first few years. My cleft palate surgery and a series of surgeries on my feet kept Mom and Dad very busy. Fortunately, my parents had a lot of family and friends who could help. Everyone switched gears and pitched in, and I mean everyone. Both sets of grandparents were frequent visitors in our home, as were my aunts, uncles, and cousins. And that was good because when I was recovering from these surgeries, there was the real possibility of complications setting in quickly.
Diastrophic dwarfism is one of the most complicated types of dwarfism because it alters the body’s cartilage, which in turn alters the bone structure of the body. On top of that, because the body is misshapen, colds can quickly turn into more severe respiratory problems, such as pneumonia and the inability to breathe. Mom made sure there was plenty of help on hand because she knew if she got so worn out that she too got sick, she would not be in a position to help me.
Sometimes it’s hard to ask for help, but the old saying “Many hands make light work” is very true. I’m happy to say that eight of those hands belonged to my grandparents.
My grandpa John Gill worked for Dr Pepper during the time when trucks still carried glass bottles on the side of the vehicle. He later bought a little grocery store on Elm Street right there in Seymour and ran the meat counter. With a family of six, the ends and pieces of meat that he brought home came in very handy. My dad was the oldest of John Gill’s four kids, and I remember his telling me that Grandpa Gill’s store was the first one in Seymour, Indiana, to get approval for carry-out beer. That was a big thing back then, and a little controversial. Grandpa used to put beer that local preachers purchased in empty Wheaties boxes so members of their congregation would not see their spiritual leaders buying beer.
Grandpa sold the store in 1965. It was in the nick of time because just after that supermarkets became popular in our area. He spent his retirement years driving a school bus, and working for my dad and my uncle Ted in their various businesses. Grandpa wouldn’t accept any payment, so my dad and uncle finally pitched in together and bought Grandma and him a trip to Hawaii that they enjoyed immensely.
Grandma Gill, Doris Fox Gill, worked at the store quite a bit and was a homemaker who took care of Grandpa for seven years after he had a stroke. As of the writing of this book, she is my only grandparent still alive. She remains very sharp well into her nineties, and I hope someday that I have a marriage that is as strong as Grandma and Grandpa Gill’s was.
On my mom’s side, my grandpa Wilson, Earl Wilson, was the first in his family to go to college. He had to leave college early, though, because his dad passed away and he had to go back home to take care of the farm. Back then, that’s what you did. He later opened Earl Wilson’s Garage, a service station that also wholesaled and retailed Goodyear tires, as well as Lawn-Boy mowers and related equipment.
When he retired, he and my grandma Dorothy Rueff Wilson turned the acre his warehouse was on into a woodshop and a garden. Grandma Wilson canned about a million things. I can still taste her corn, pickled okra, cucumbers, tomatoes, and my favorite, pickled Brussels sprouts. Grandma and Grandpa gave all the produce and canned goods away. That’s just the kind of people they were. They were married for sixty-seven years. Another great marriage.
Grandma Wilson had a great sense of humor but was also an incessant worrier, so I know where my mom got that. She loved what I call “old lady” jewelry and amazingly ugly sweaters, and was the original great American housewife.
I mention all of this because I really do come from people who were, and are, the salt of the earth. They were always ready to help a friend, neighbor, or family member. Their values and integrity are very much a part of me, and while I have often strayed from this path, the rock-solid foundation they provided has allowed me to come full circle.
WHEN I WAS about a year old, my dad began building the house that I grew up in and where he still lives. The lot in the rural subdivision was on a low piece of ground, but Dad took his dump truck and filled in the property. He said he had drainage in mind when he dumped load after load of dirt on the land. As I grew older, I had a lot of fun sliding down that hill in the winter.
The neighborhood Mom and Dad chose was ideal for raising a family. The streets were laid out like the letter P with a horizontal line through the middle of the upper part of the letter. There was only one road that led in and out of the subdivision. Our brick ranch-style house was located on one of the outer edges of the then-growing area. The neighborhood was filling with young families and it was as safe as a place could be; it still is. If you can imagine a Leave It to Beaver
–type neighborhood where everyone knew everyone else and kids were running in and out of neighbors’ homes, that’s where I grew up. I so appreciate that small-town upbringing. Plus it taught me that saying a simple please and thank-you can go a long way.
There were nineteen thousand people living in Seymour in 2010. I imagine the population was half that in the seventies, so even outside of our rural neighborhood the town was small enough that no one was a stranger. So when I was born, word spread quickly that Steve and Janet Gill’s new baby was a dwarf.
There was one other dwarf child in Seymour when I was born, Jana Emkes, who was the youngest of eight children. Jana’s type of dwarfism was achondroplasia, which in addition to short stature usually means the person has a curvature of the spine, bowed legs, and decreased muscle tone—as well as other symptoms.
As soon as the Emkeses heard about me, they immediately reached out to my parents. The Emkeses introduced my family to the Little People of America (LPA) organization, a nonprofit that provides support and information to people of short stature and to their families. LPA was a lifesaver for Mom and Dad. We were members of the Little Hoosiers chapter and attended monthly meetings at the homes of various members. I attended my first meeting when I was still a baby and have gone to many more meetings and conferences since then. Being able to see and interact with other child and adult dwarves let me know early on that little people were just the same as average-sized people, except their bodies were smaller. Knowing that I was not the only person in the world in a little body was awesome.
When I was born, because of my cleft palate they sewed my tongue to my bottom lip to keep me from swallowing it. My mom later jokingly said she wished they’d kept it that way because then maybe I wouldn’t have talked so much.
As soon as I got to Riley, it was determined that I would have to be fed with a feeding tube for the first year of my life to allow me to develop enough to withstand the cleft palate surgery. The residents there taught Mom how to do this, but friends and family tell me now that they were afraid to feed me, so during that first year, I never left Mom’s side. When I was about a year old, I had surgery to reconstruct the roof of my mouth.
Unbeknownst to me, the surgeon, Dr. Ponser, did beyond a fabulous job. When I got into the entertainment business I had my vocal cords scoped at Vanderbilt, which is a teaching hospital in Nashville. Looking inside my mouth, Vanderbilt doctors and residents could not believe I had ever had a cleft palate. The only residual effect of the cleft palate was that I had to take speech classes from kindergarten through sixth grade with Miss Dominick, a very patient and qualified pediatric speech therapist.
As I became older I hit many “normal” milestones such as rolling over and talking, but because I had clubfeet, which is a condition that causes the foot to rotate sideways, I couldn’t walk until much later. It’s probably a good thing, because if I had walked on schedule I would have been walking on the outsides of my ankles.
From my first year until my eighteenth, I had yearly visits with doctors at Riley. When I was three it was determined that it was time for me to have surgery to correct my clubfeet. Up to this time I had been sleeping in corrective shoes and was unable to walk. My parents were scared to death at the thought of the operation. Many dwarves have breathing problems and my parents were concerned that the anesthesia combined with the trauma of the surgery would cause respiratory failure. Over the years, Dr. Blaisedell had become a friend of the family, as he did with most of his patients. He assured my parents that I would be well taken care of.
I may have been well taken care of, but even though I was only three, memories of the ordeal remain with me today. Nowadays, children’s hospitals are light, cheerful places with carpeting, toys, and televisions. Not so in the seventies. Back then, Riley Children’s Hospital was a dark, institutional place with metal doors, bars on the windows, and walls painted puke green. And the sounds. The shrieking and moaning and groaning made it sound like an insane asylum. From what I can remember, it wasn’t the least bit kid-friendly.
While I had been to Riley annually for checkups, this was the first time I was old enough to remember the place and the feelings it created. I recall that my room, which I shared with another patient, was sterile and smelled of medicine and disinfectant. Just before my surgery, I was situated in the pre-op room with my parents. A huge male orderly who happened to be black came to take me to the operating room. I am the least prejudiced person on the planet but I had not been around a lot of black men of his tall stature in my three short years. In fact, the number was zero. I can’t tell you how terrified I was by his color, immense size, and deep voice. But, looking back, he was kind and gentle.
To make matters worse, instead of putting me on a cart and wheeling me into the operating room, the orderly took me from my parents and carried me away in his arms. I am sure he did that as a comforting gesture, but at the time it only made the situation more frightening. I frantically looked to my parents for help, but their worried faces did nothing to relieve my growing fears. Because I was in this strange, noisy, smelly, dark place and in the arms of a total stranger, I looked to my warm and loving parents to help. I was too young to understand that through the surgery they were giving me exactly what I needed—a chance at the most “normal” life I could have.
All children look to their parents for guidance, care, and support. This is especially true for children with unique challenges. There are so many things you cannot do for yourself at that age that your bond with your caregivers—your parents—becomes that much stronger. All I knew was that I was in a very scary place, and a man who completely frightened me was taking me away from all that I knew and loved. I was about as anxiety-ridden as a child could possibly be before undergoing a major operation.
Fortunately, the surgery was successful and much of my recovery is a blur. What I do remember are the reassuring faces of my parents and grandparents, who stood around my strange-smelling metal hospital bed. My mom liked to tell the story that when I woke up, the first thing I asked for was a Coke. Later, I remember wearing heavy plaster casts and how much they hurt. When the casts were removed we found that the intern who put them on had done one of them wrong and the skin on my left foot had rubbed down to the bone. I still have that scar today.
I also distinctly remember the sound and smell of the saw when the casts were cut off. They used a buzz saw, and again, I was beyond frightened. My heart was thumping and I was shaking, even though I knew I had to remain still. One tiny move and my feet would be history. My young mind really hoped this guy knew what he was doing. He did.
Throughout the surgery and recovery, even though I was not feeling well and was often in pain, I felt warm and comforted because I knew without a doubt that I was safe.