My journal: Charcle Fordham Charcle Fordham is from New Jersey, US. As a teenager, she was diagnosed with juvenile myoclonic epilepsy and struggled to stay upbeat – until she took a job that changed her life
At the age of 14 years old, I was diagnosed with juvenile myoclonic epilepsy (JME, also known as Janz syndrome). That diagnosis changed my life. However, back then, I did not know how much it would change my life.
At the tender age of 12 years old, I started experiencing some strange symptoms. While sitting in the school cafeteria with friends, my face would start twitching. It was really strange. I didn't know what was going on with me. I can remember thinking to myself, ‘Boy, I hope none of my friends have seen my face.’
Happy, I don’t think that they did, because they just kept talking. So, since they were acting as if everything was normal, so was I. So we just kept talking and laughing enjoying our free time before going back to class. A few days later, it happened again. This time, the twitch happened while I was talking. Luckily, I was making a joke, so everyone thought that my twitch was just part of me acting a clown. I knew the truth, but I didn’t want to tell my friends. That would mean admitting I was a freak.
All of a sudden, our conversations became serious and – here we go again – I felt another twitch in my face. All of a sudden, my friends started asking me why I keep making those faces. I was shocked because I didn’t think they had seen the twitches until just now. I just kept quiet and kept hoping they would drop it.
They didn’t. As time went on, my friends would sometimes look at me strangely and ask, ‘What's going on?’ Of course, my response was always, ‘I don't know.’ This was something so new to me and I was so scared. I kept it secret for a year. I never wanted to worry my parents, so I would just hope and pray that it would go away. At times, I found myself treating it like it was just a bad cold and eventually it would go away.
Unfortunately, at the age of 13, my symptoms became worse. The twitching went from my face to jerking in my arms and legs. Not only was I jerking and dropping anything I held in my hands, but my legs would jerk and I’d fall down. It was very rough. I didn't know what was going on with me but at this point I knew I could no longer keep it a secret. I knew I had to tell my parents. When I did, I immediately got the help that I needed.
After getting an EEG and an MRI, my doctor was able to make a final diagnosis of JME. I was relieved to know that I could finally put a name to what was wrong with me. The relief was short-lived. The next words out of her mouth were frightening. The neurologist – in my eyes an expert in this field – told my parents to put me on disability.
The doctor told my parents that the stress of everyday life would be too much for me. Having a career and having a family all together would cause me to constantly have seizures. She went on to say that my twitches and jerks were going to lead to full blown tonic-clonic seizures.
According to my doctor at that time, this was the reason that a normal life just wasn’t possible for me. She stated that in order to have some type of normalcy and quality of life, I had to choose one path for my life. I can’t have it all, like most people. I must choose between a family and a career.
Needless to say, that was my last time seeing this particular doctor. My parents turned simply told me to ignore everything that was just said to me. My parents also told me that I am not disabled and never to look at myself in that way. Then, my parents went on to tell me that no matter how tough life gets, I can have anything I want. I choose my own path in life and should never allow anyone to tell me differently.
I couldn’t understand why this doctor would say these things to me. I didn’t feel as if I was disabled. I didn’t feel any different to my friends. Okay I twitch and jerk, but so what? I am still normal.
Unfortunately, when I turned 16 years old, I had my very first tonic-clonic seizure. It was the scariest thing I had ever been through in my life. All I could think was, ‘Is this really happening?’
I realised that the doctor was telling the truth. I am different. I am disabled.
A difficult truth
My mind started to change and depression set in very quickly. I didn’t want to get my driving licence, like all of my friends around me. When everyone asked me why didn’t I want to drive, all I could say was, ‘Are you kidding? Do you really want me to have a seizure behind the wheel and die?’
That seemed to be my answer for anything of any importance in a young teen’s life. It was awful, I felt as if I had no control over my life. I was scared to make a move, scared to speak, read or hang out with my friends. If I could just be quiet and not move around too much, I wouldn’t have a seizure.
Ultimately, this had to stop. I could no longer allow this condition to take over my life. My family was my support team. At times I felt like my parents expected more from me than they did from my siblings. I always felt as if I had to do everything.
As an adult, I now understand that I have it tougher than my siblings. I now know that my parents were just trying to prepare me for the tough road ahead. They did an amazing job of helping me accept this condition, while still making sure that I remained on the path I was on before my diagnosis. My parents have set such a high standard for their kids and didn’t care about some medical diagnosis. As far as they were concerned, if I had to work harder than my siblings to reach my goal than that’s what I had to do.
My siblings would pick on me every chance they got. They didn’t care that I have epilepsy, they were going to be the same as they were before my diagnosis: mean siblings. I never told them but I loved it when they picked on me. Those were the times I felt normal and as if nothing was wrong with me. They weren’t afraid to be around me. They weren’t afraid of me having a seizure. They were my siblings; they loved and accepted me without boundaries.
I went on to graduate high school and was able to control my seizures. This was an amazing accomplishment. I never thought that I would come that far since being diagnosed. After working for a few years and being a college student, I was genuinely starting to think, ‘Wow that doctor was wrong. I am going to school and I have a job and still no seizures.’ I can’t say that I was fully out of my depression, but I was feeling really good about my accomplishments.
A turning point
A new chapter of my life began and it was definitely going to make me very strong. My family moved from Connecticut to Florida and that was a great change. I only had a few years left before completing my Bachelor’s degree. This was an amazing feeling.
I started working at the Florida Department of Health, an organization where we serviced low income families by providing health care for individuals such as OBGYN services, HIV/AIDS care/prevention, Tuberculosis testing and treatment and Vaccination services. I was very excited to start my career. I didn’t realise at the time that this job was going to change my whole life. I became very fond of my boss who was fighting a no-win battle with cancer. I couldn’t understand how someone so sweet had to endure so much pain. I could see the pain in her face, caused by her cancer.
Despite her fight, she worried about everyone in her life and would always try to reassure her friends and family that she was okay. Her main goal always seemed to be making sure that everyone around her was okay. That was something that I admired most about her. I came to feel that I could be strong like her and fight my way out of this depression. If she could do it, then so could I.
One day, she could no longer fake it and I knew that I had to make sure she was okay. I called her son to come and pick her up and take her home. The crazy thing is, I always had the biggest crush on her son but was too afraid to talk to him. Every time he came around I would just walk the other way. I was that little shy girl with a crush. This time I couldn’t run away – I had to talk to him.
My boss’s son is called Andre’
Does Andre’s name have an apostrophe after it, or is that a typo?. Yes, Andre’s name has an apostrophe after it. He is now my husband. After that phone call to him we started talking, which led to dating. Quickly I fell in love with him. Before we knew it, our son was on the way. It was a little scary and sometimes I worried I’d taken on more than I could handle. I was dating a man who was taking care of his mother and his beautiful six-year-old daughter. I had the job and was about to have a child. The words of my doctor continued to haunt me because I was about to face the reality that I was told I couldn’t have.
Needless to say, the path my doctor set out for me was not the path that God set out for me. I am very proud to say that, as of right now, I am married with three children. One of my children – my son – was just diagnosed with type 1 diabetes in March 2014. I have my Master’s degree and a wonderful career. This article is just a small piece of my life. I have written a book entitled Growing up with a disability BUT I’m not disabled. In it, I talk much further about my life with epilepsy and the support my family have given me.
Everything is great in my life. There have been barriers I have broken down to achieve my success. I am extremely excited to say that the best part of my life is that I have been seizure-free for four years.
Do you have a publisher for your book yet? Is there a website or anything people could visit?
Below is the information for my book. It was published via createspace.com My book is available for purchase on Amazon.com US, Amazon.com Europe*. You can also purchase my book here.
FYI - The other distribution channels Bookstores and Online Retailers, Libraries & Academic Institutions will be available in 6 - 8 weeks.