It has been almost seven months since I retired from my job.
Most people thought that by now I would be asking for my old job back. The decision for me to stop working and take care of my body was NOT a decision I took likely. It took me about two years of back and forth in my mind, asking myself “What should I do?”
The thing is I am thirty-one years old and I have lived my entire life overcoming surgeries and dealing with a body that ages faster than I do. It would be great if I was the average thirty-one year old, but I am not.
I’ve had both shoulders replaced, a right hip replacement and several other surgeries. But when doctors told me that they wouldn’t be able to fix my left shoulder after the replacement failed, that was the beginning of a wake up call to me. A wake up call that happened two years ago, but I was too stubborn to face it at that time.
Now I have people asking me “What are you doing with your life?” and when people ask me that it gets to me every time because for me that just lets me know that they don’t truly understand my decision.
“What am I doing with my life?” I am living it. For the first time in my life I am out of school and I am not facing yet another surgery. For the first time in my life I am not working my life away. For the first time in my life I can spend time with family and not worry about being too drained of energy to take my nieces and nephews out somewhere. I can read more books. I can stay home and play with my youngest niece and watch her grow and not worry about how exhausted I will be later.
But also, right now I can focus on my writing. It has been years since I have been able to feel the creativity of writing and slowly I have been able to get back to that. I was so clouded by pain and exhaustion that the one thing I knew I was great at- writing- I was no longer doing.
So for now I am living so that I can have more stories to tell. The stories that I have written in the past carry a lot of pain and sadness. It has taken me my whole life to get to the point of letting go of those stories. Now it’s time for me to write my happy ending.
This is a post that will be hard for me to write but I’m suppose to share my story right? Well if I ever have hopes of publishing my book then I’m going to have to get use to admitting to some hard truths. So I guess I’ll start now.
For a long time I felt as though I was faking happiness. I was at a point where I was as happy as I was going to get but knew I wasn’t fulfilled in life.
I have dealt with depression many times over the course of my life. When I was younger and facing it I didn’t know that is what it was but now that I am older and have learned about it, I know I did in fact suffer from it. And yes I use the word suffer because looking back now I truly was suffering. The depression stemmed from all the things I dealt with growing up, but I thought “hey this must be normal because who else wouldn’t feel this much sadness after dealing with what I’ve been through.” For me the sadness was PERFECTLY NORMAL, which is ironic for me since NOTHING in my life seems to be normal.
I still have times in my life when I face the sad times but I try really hard to not get as low as I have been in the past.
The lowest point I have ever been was when I was in eighth grade. At that time I was preparing for a major surgery- my spine fusion. I was eleven years old and facing a life or death surgery. That year I hit my rock bottom, which how many eleven year old knows about a rock bottom? Well I did. I was at such a low point and I couldn’t tell anyone. I was scared, but felt like I had to hide my worries. I remember thinking “if I make it through this, I will never let myself get this low again” and I didn’t get that low again for many years. Yes I would face depression, but nothing like that year.
Sometimes life calls for a big change and this year was that change for me. I had to break the cycle because I was afraid if I didn’t, who knows where I might have ended up.
So I may not know what to expect in the future, but I am happy and that is all I need right now. The best medicine I’ve found is being surrounded by family and friends and by learning new things. By going on adventures and stepping outside of your comfort zone- something I am definitely not use to but I am learning.
This year feels as though everything has changed. It is such a weird feeling when you start off the year just knowing that things would be different when you ended the year. But I didn’t know just how much would change.
So like anyone who is scared of change…I started off with something small. I bought a new car! Okay so that’s not really a small change, for me that was a big change. I went from a 2000 Ford Focus to a 2019 Toyota Corolla. Nineteen years of advanced car technology and 11 months later, I’m still learning how to use some of the features in my car.
For me this car represented change and a new chapter in life.
This year has represented a closing of one chapter and on to opening up the next one. I don’t exactly know what the next chapters of life hold- which is why I call it “Blank Chapter.”
I started off this year with a quote “New Year, New Beginnings, New Chapters.” As every year has passed before I got to a point where I felt as though I was living the same days over and over. Life felt like it was on repeat and I felt as though I was missing out on a lot of life.
For years, work was my life and there was a time when I truly enjoyed working my life away. But this year began and I had a “what the heck am I doing?” moment where I realized I was missing out on being with family and friends. I was missing a really big part of my life.
I realized that when I was younger and thought about my future, the very few times I did dream about my future, I didn’t want to be the person who worked their life away. I remember when I was younger and when I would write, I would think “as long as I’m happy, then that’s all that matters.”
It is writing that truly makes me happy. However I am still working on opening up more as that is something I am not use to. I am not use to sharing how I feel and opening up about my life.
So ideally writing a blog and “sharing my story” is extremely hard to do when I’m use to keeping everything inside.
There is a quote that says “Life is 10% what happens to you and 90% how you react to it.”
I love this quote because it makes me think about how people say I have such a positive attitude and how I’m always laughing.
For me if I let everything that I’ve been through get to me then I would probably be a very negative person. My parents instilled in me the “it is what it is attitude” meaning that growing up I knew that facing surgeries and the unknown was my normal. I knew that I had to face things in life that no other child my age would face. I knew I would go to school and the kids wouldn’t understand about all my challenges and some wouldn’t know how to talk with me about them and I learned to be ok with that. As an adult that has been something I’ve struggled with to overcome. Letting people know the real me.
Life is definitely a journey and none of us know what will become of each day. I learned to live for the now because the later wasn’t guaranteed and I learned that at a very young age. I always felt as though I grew up at a lot younger age than most people because I was facing so many grown up decisions at a very young age.
So enjoy the 10 percent of what happens to you and don’t let that 90% tear you down. I did a few times and I’ve learned so much from it.
Most little people face surgeries during their lifetime. For me I have had 18 surgeries. I was born with clubbed feet (meaning my feet were upside down and backwards when I was born) and I had many surgeries during my childhood to correct them. I’ve had cataract surgeries with both eyes, lens implant surgeries, several sets of tubes put in my ears, a tethered chord released, a spine fusion, gum grafting surgeries, both shoulders replaced and a right hip replacement.
For anyone surgeries can be complicated but for little people, because of our size, there can be even more complications. Anesthesia can be very complicated for little people because we have a smaller airwave to work with. I have been lucky to have only one surgery where they couldn’t intubate me, my right hip replacement (the first attempt). I woke up from that attempt and knew I had not had the surgery yet. It was such a weird feeling waking up and just knowing something had gone wrong.
Little people hold many different professions. We are lawyers, doctors, teachers, managers, actors, and so many other professions.
We may have to do the job a little bit differently but we can do the job.
Shopping for clothes isn’t always an easy task. The clothes that fit me are made for a young child and aren’t always age appropriate. Pretty much every pair of pants that I have had to be hemmed because while they fit in the waist the length is way too long. Shirts are sometimes hard to find too because I want something that is going to make me look older and not like a child. Plus I have the bonus fact that I have to find shirts that will work with my shoulder replacements. Since my left shoulder started to fail, now I have to get the size bigger so that I can comfortably put it on but then I also have to find shirts that aren’t going too look too big also.
Shopping for shoes…you can forget it! The only shoes I can wear are New Balance tennis shoes because they make them in extra wide and because I was born with clubbed feet, and have had numerous surgeries to correct them, extra wide shoes are all I can wear. Dress shoes, sandals or any kind of nicer shoes is out of the question for me. Plus the shoes I do have the left one has to be lifted since I’ve had a right hip replacement, which made the right leg a little longer than the left.
So clothes shopping isn’t always as exciting to me as for some of my friends.
I’ve had people ask me if I have ever wished I wasn’t a little person and the truth is I’m proud of who I am. Has my life been full of challenges? Yes. Was it difficult growing up facing so many surgeries? Yes. I faced a lot growing up and faced so many unknowns. But that didn’t stop me from going to school, from making friends, from getting a job, from learning to drive a car, from becoming the person that I am proud to be. When the world looks at me they see a little person, but my story is so much more than my height. My story is unique and my story is mine!
When it comes to traveling as a little person it can be difficult for me to travel alone. In fact I prefer having someone to travel with because I never know what obstacles I may face. The suitcase that I usually use is over half my height and can be very difficult for me to navigate. (Recently I invested in a suitcase with the wheels that turn every which way because due to my shoulder I couldn’t even push or pull any other kind). When traveling on a plane it’s usually not that bad for me. My feet don’t touch the floor so if I’m traveling long distances sometimes my feet fall asleep.
Also sometimes people don’t realize that I am standing behind them or in front of them and so I am always cautious of other people not seeing me.
There have been a few times when I have traveled and stayed at hotels and the doors to the room have been so heavy I couldn’t even open them. And of course any time I travel I have to remember a stool (I have one that folds up and fits in my suitcase). Remembering a stool is something that I am not always good at remembering though because I am so use to adjusting to whatever that I sometimes forget that I need it. Luckily I’ve got friends and family that try and remind me.
Many individuals with dwarfism have identifying traits found in the features of their hands. Some forms of dwarfism have different features that can help doctors identify that specific form of dwarfism. Over years, at the different Little People conventions that I attended, many doctors were fascinated by my hands and feet. In fact Dr. Andrew Jackson from Scotland, who was the doctor who first took my DNA to start finding the gene, he took one look at my hands and said “you have Saul Wilson Syndrome.”
(Pictures is my left hand)