Little People Rule The World!
I discovered the Sickboys a few months ago and was hooked from the first podcast I listened to. I love their approach to education, awareness and the frank conversations their show generates. I am also a big fan of looking at life with raw and edgy humour, an energy that fuels each Sickboy Podcast. Walking into the recording space and meeting Jeremy, Brian and Taylor for the first time, I was able to immediately get a sense of each. Jeremy had unconfined enthusiasm, Brian was scared of me, and Taylor was curious… A perfect recipe for a cool, frank discussion that hopefully entertains and educates.
I would like to recognize that this type of raw open and uncensored discussion may offend. I apologize if you find any of my comments offensive. This was a fun experience and I hope we get the chance to collaborate again in the future.
Hello, my name is Jim and I am 44 years old, I am a dad, a husband and I stand at 3’-6”, not 6’-3” you didn't read it wrong and that is not a typo.
If that made you take a second look, you should spend a couple of hours with me and go for a coffee or go shopping. You would quickly notice how many heads turn. Add my 11 year old son to the picture and the fact we both use mini segway-like scooters for mobility and the attention we attract is beyond crazy! Most of the time it’s positive but often it’s not. The fact is, we are always on display and the attention we attract is constant. My wife of 18 years is average height at 5’-3” and she can attest to how different it feels when she goes out in public alone when she blends into the crowd. That's something my son and I rarely experience.
I was the first little person born into my family and spent most of my time growing up in small rural towns. I was always the only little person in my community and at my school. We moved around a lot and I went to over 10 different schools before finishing grade 12. Due to many orthopaedic complications I have endured more than 30 surgeries and spent months at BC Children's Hospital missing many months of school. Most were major operations to correct the alignment of my spine, hips or legs. Most operation consisted of doctor’s cutting my legs in 1/2, rotating & straightening them, pinning the bone in place with screws and rods, and then enduring a body cast for months as they healed. With the cast removal would come months of physio and having to learn to walk again. Variations of this scenario happened throughout my childhood, with my first surgery beginning at age 5 and my last through BCCH at age 19.
Two specific procedures that stand out were my spine fusion when I was 15, and my leg surgery when I was 18/19. These were extremely gruelling and tough to endure both physically and mentally. Each were only supposed to take 3 months but ended up taking years. After my bones stopped growing around age 19, the need for corrective surgery stopped. With all the school changes, the moves, and the surgeries, I was still able to finish grade 12 ahead of schedule.
I tell you this bit of background because none of it is obvious if you just meet or chat with me. My short stature is what you see and that is really the least of my daily struggles. Sure I would like counters to be lower, groceries to be more reachable and washrooms to be accessible, but those are the obvious obstacles faced each day. It’s the unseen obstacles that take most of my energy each day, my crushed / fused spine, painful hips, worsening arthritis attacking my joints, my low lung capacity that causes me to be out of breath regularly…these are the biggest challenges and the symptoms you don’t see or think of when you see me.
Despite dealing with all the BS that my disability and sickness forces me to deal with, I enjoy life. I have always been able to use the obstacles & setbacks to fuel my drive for happiness and success. In ’94 I opened my own business that is still going strong. In 1998, I married my high school sweet heart & we purchased our current home together...then in 2004, we welcomed our son Caden.
This was a pivotal point in my life that I had never anticipated. While I am comfortable in my own skin and mentally tough enough that the lack of public awareness and media ignorance rarely affects me…once Caden was born, I found myself constantly thinking and wondering how my son would handle it, what I could do as a parent to provide him the life skills to deal with the physical and mental aspects of growing up little and constantly being on display. In addition to life's regular issues, it added a whole new dimension for Tracey and I both as a couple and as parents.
Because of my condition, we were bombarded with medical probing while Tracey was pregnant. She endured multiple ultrasounds to see if Caden would be average or little like me. All along, we received conflicting medical advice as to whether Caden would be small like me or not. It didn't matter to us. We knew the odds and it didn't matter.
Caden is now 11 and has grown into a strong, funny young man. When we are together, I find it is more like hanging out with a buddy than looking after a child. Currently he is doing fairly well...I hesitate in saying that because it implies Caden is fine. What I mean is, Caden is doing great today considering the mountain of medical issues he deals with daily. You have to realize when any disabled person tells you ‘Oh ya, I am doing well,’ what that really means is...they are doing well, considering.
Caden spent the first three and a half weeks of his life in the hospital, then we brought him home with oxygen. We traveled almost weekly from the Island to Vancouver for checkups and treatments at BCCH. Caden had multiple foot orthotics, he wore a pevlic harness to keep his hips in place, had a hernia operation at 5 months and at 14 months the doctors noticed his very serious cervical neck instability. Cervical neck instability is a common concern for SED, that requires surgery, but in addition, Caden also had delayed ossification (turning into bone) of the actual vertebrae in his c-spine as well.
At age 4, Caden underwent a cervical spine fusion to stabilize and protect his spinal cord. I could write a book on this whole experience as it was the scariest time in my life. I shouldn't complain, Caden was the one who had to endure it. During my childhood I was the one in the bed at children's hospital, but now as dad, I am holding my son's hand while he goes through it.. As a parent, you never forget the moment when the doctor sits you down to tell you the dangers and risks involved with surgery. Along with the regular risks that any child faces, LP’s have a difficult time with anaesthetic, and if anything goes wrong with the spinal cord at that level, you don’t sustain life. We knew the surgery was necessary, but I can tell you, it was all we could do to not grab Caden and run out the door.
That was 7 years ago, since then he’s had major surgeries on his legs and his hips and although Caden's neck will always be vulnerable I am pleased to say he is doing fairly well…. considering.
We are definitely a family that turn heads and has more than our share of BS to deal with, but we have managed to create a great little life. There is so much we could continue chatting about, more obstacles, medical complications, public misconceptions, and media stereotypes, but this is a great start.
The message I would like to leave you with…is that there is always more to a person than what you first see.
And Now For Some Quick Facts:
• My parents were both average height. 80% of little people are born to average height people.
• My children had a 50-50 chance of inheriting my type of dwarfism. I have one child.
• Midget is an offensive term.
• Dwarfism is a correct medical term for people with short stature due to a skeletal disorder.
• Little Person is the most accepted way to describe us.
• Most little people would just prefer you use their name.
• 1 in 25,000 births are affected with dwarfism
• There are more than 200 medically diagnosed dwarfism conditions
• 1 in 100,000 births are SED (my type)
• Each type of dwarfism has different medical complications ranging from simply having short stature, to suffering from extreme complications requiring life long treatments