How I Learned To Accept My Devastating Chronic Illness
I was diagnosed with Wilson's disease 14 years ago, when I was just 19 years old. Wilson's disease is a hereditary disease in which a mutated gene prevents the body from excreting copper. Copper is found in everything we eat and drink, and is a vital mineral that performs various functions in the body, but our bodies only require a certain amount and the liver discards the rest.
In my case, the excess copper was stored in my body until the copper became toxic and attacked my central nervous system. The scary part is that there were no telltale signs that I had Wilson's when I was younger, until I was diagnosed, and by that time it was too late.
It all happened so quickly that when I think about it today, it seems like a blur. Within a period of a few months I had stopped walking, talking, and had lost my independence. I suffered from so many symptoms that sometimes I wonder if I wasn’t suffering from more than one disease. Tremors, drooling, bradykinesia (extreme slowness of movement), micrographia (tiny handwriting), dysautonomia (the inability to stand upright), insomnia and much much more. Not to mention the brain fog and mood swings.
Added to the symptoms was the frustration and anger. Anger at feeling like my brain had detached from my body. No matter how much my brain screamed orders, my body just wouldn’t listen. Frustration at not having a voice to talk and communicate with family and friends; I went from being a talkative and happy girl to a sad and withdrawn girl. Although I didn't suffer from depression, I went through a period of self-pity for a few years.
Why me? What had I done to deserve this? People would tell me that I was special but I just didn't see it ... in my mind I was cursed forever.
The worst thing was that the doctors told me that my symptoms were permanent and irreversible. In other words — there was no hope for me. I believed them.
By the age of 25 I had used every single disability aid there was. Wheelchairs (electric and manual), commodes, shower stools, toilet aids, and even a stick to help me get out of bed. Equipment that one would ordinarily use much later in life.
My turning point came in 2005, when I decided to join a gym. I can't say what possessed me; it was a feeling from within that urged me to go. I started with the easy stuff, lifting light dumbbells and doing 10 minutes on the manual stepper.
It wasn't easy, and I fell many times at the gym, especially when the connection between my brain and body would drop out. I often felt like my body had a mind of its own. There was also a lot of negativity and self-doubt, but I didn't give up.
Then, in 2009, I began to walk with a four-wheeled walker. It came about while I was in hospital receiving painful intramuscular needles that were supposed to reduce my elevated copper levels from around my brain. On the third day, the same feeling that had pushed me to go to the gym returned, and I asked if I could use the walker of the old lady who was sleeping next to me.
It was a miracle! The doctors and nurses couldn't believe it. I couldn't stop smiling as I walked up and down the hospital ward. My mother began to cry. I will never forget that day.
People sometimes ask me what made me walk. Was it the exercise, the needles, or was it me? I like to think that it was a combination of all three. Without the needles the copper may have caused more damage to my brain, without exercise the messages from my brain might not have reached my body. And without self-belief and determination I would have ignored my inner voice and given up.
I have since learned the importance of self-belief and determination in overcoming obstacles in life. The entire world may believe in you, but ultimately it's your own self-belief that truly counts.
Even though I'm still unable to talk, and even though I still fall at the gym sometimes, it hasn’t stopped me from pushing forward and remaining positive.