For some reason I chose to launch my blog on April 1, 2012: April Fools’ Day (AFD). When my brother and I were small, we would help my mom draw and cut out paper fish and then safety-pin them on the inside of my father’s pajama bottoms! Why? Because we were fascinated with paper fish?!
Even though my father is British and we lived in England at the time, my mother is French-Canadian and I also was born in Canada. In Canada (especially Quebec) and France, April Fool’s Day is identified mainly as Poisson d’Avril (literally: “Fish of April”). Much of AFD jokes in Canada focus on the theme of fish – paper fish stuck on a person’s back, paper fish in lunch boxes, real fish in boots, fish, fish everywhere. And when the person found the fish (on one’s back, in the boots, etc.), the person playing the practical joke would cry, “Poisson d’Avril! Poisson d’Avril!
As a child I looked forward to AFD to participate in this “paper fish in dad’s pajamas” tradition. We played other pranks on each other, but nothing was as memorable as cutting paper fish, putting them in my Dad’s sleeping bottoms, and then hide as he put them on and acted so surprised! Those were harmless and fun Aprils.
Then One Morning…
April 2000 became a memorable month for me, but not because I still celebrated Poisson d’Avril on the 1st. An event occurred, but not on April 1. At the time, I seriously thought that someone was a little late with the jokes. On April 15, 2000, I woke up at around 7am with a speck in the middle of my eye. I rubbed my eyes, thinking it was crusty sleep. I then walked to my bathroom and turned my face so my eye was under the faucet and lightly ran the water so that it could rinse the speck of dust out of my eye. I wiped my face on a towel. But there it was! It was still there. “Well,” I thought to myself, “It will come out during the day. Maybe the wind will blow and remove this speck or spot or whatever it was.”
I got dressed (and again soaked my face under the shower thinking the sink didn’t have enough water pressure to push the speck), and took my dog Akea for a walk in the field. I could tell the day was going to be a beautiful one – no humidity, sunny with those fluffy clouds. The problem was it sure as heck was really bright! When I got back to my apartment, I grabbed my sunglasses and drove to work. When I tried to take off my sunglasses in my office, the lighting was almost blinding. I walked into my boss’ office and he mentioned the sunglasses. As I explained what had happened, my-co-workers started asking me questions. I said that I noticed this speck and it hadn’t gone away…and now bright lights were hurting my eyes. Jack (my boss) confidently suggested I should call the optometry school immediately to get an appointment. I thought he was over-reacting a bit, but I thought it might be a good idea. When I called the school, they happened to have an opening the next day. At this point, I was quite relieved as there was pain developing in my eye.
The Next Day… My appointment lasted THREE HOURS long! I did not wait THREE HOURS. No, it was three hours because they were giving me a comprehensive eye exam plus much more. They intensely examined my right eye, calling in other optometrists, and finally the top honcho – an ophthalmologist – in the office took over my case. “This is ridiculous!” I thought.
My mind started! I had been in the optometry school for three hours. I had work to do. I then needed to go home and walk my dog, Akea. That was it, I thought. I stopped the ophthalmologist and asked him what was the problem – what was wrong with me? What was taking so long? He placed his right hand over his chin and rubbed it for a moment. He looked straight into my eyes and said, “You have optic neuritis, which is an inflammation of the optic nerve. This inflammation can last for a week or so or for several months; and it can affect how much you can see through your right eye. For now, we need to get you immediate treatment, which will consist of 1,000 mg of intravenous solumedrol (which is a type of steroid like prednisone) for three days in a row. I have to get on the phone with a neurologist and then we will send you over to the hospital.” I stood up quickly before he left the room and half-squealed: “What is the optic nerve? Where is it? How did any of this happen?” He took several seconds and briefly told me it was the nerve that led from the brain to the eye. I asked, “Can optic – what’s it called again?” “Optic neuritis, ” he said plainly. “Can it be fixed by using glasses?” The ophthalmologist replied that it couldn’t because the nerve was coming from inside the head and brain. It had nothing to do with the lens of the eye – which can be corrected. Great – just great!
The Optic Nerve
The ophthalmologist left the room. There I was sitting in those black chairs that move up and down and forward in front of the big eye-examining machines, and I thought to myself, “He must be joking. It’s April 15th – not April 1st. I am in great shape. My eyesight is better than 20/20. I don’t have EYE problems!” Then, it hit me. WHAT ON EARTH DOES THIS MEAN!!!! Do I have a tumor? Am I going to die? What? The next hour moved so quickly. Someone (I don’t even really remember who) drove me down the street to the ER. A nurse got me ready for an IV. Then the neurologist opened the curtains. He was an elderly, kind-faced man with a smile on his face. He said, “My name is Dr. W. What have they told you?” I said the same thing (sort of) that the ophthalmologist told me and ended with, “What does this all mean and why am I seeing you – a neurologist – for an eye problem?” Meanwhile, as we were talking a nurse came in and hooked up a bag to my IV. Dr. W replied that right now they were doing day one of the treatments typical for optic neuritis. Then, I would return to the hospital for the next 2 days. As he was putting my file under his arm, he handed me a card and said, “We will meet on Tuesday afternoon to discuss how you did over the weekend.”
Due to optic neuritis (ON), I could not read out of my right eye for 10 years and, for the first 4 months, I had stabbing pain in my eye when I moved it. Even now (12 years later), some words in the center of my vision are still missing when I try to read with just my right eye. For about a week after I was diagnosed with ON, I struggled with depth perception as well. You should have seen me on campus carefully walking to the edge of the curb and slowly placing my foot on the street! Stairs were even worse. It took almost 3 weeks for my eyes to adjust so that I could see and read using both eyes. I was still struggling from my loss of vision in my right eye, when another problem occurred that same year: trigeminal neuralgia (TN) – A.K.A. “freakin’ extreme neurological pain in my pace!” TN ripped into my life and turned everything around. It interrupted my studies, my time with friends, plans I made and much more. Both ON and TN were related to my diagnosis of multiple sclerosis (which occurred in September 2011). ON was my first symptom of multiple sclerosis (MS). With ON and TN, my life changed drastically. I was an active, outdoorsy person who became very limited in my activities due to extreme pain in my face and then my right leg. But we can talk about that in another blog post.
In my About page, I mention that this blog is about my journey: journey from a healthy and active person to someone struggling with various diseases including depression and then to my present life of learning to manage my ailments. And, in addition, not being defined by them. I don’t simply want to cope with life and pass the time. I honestly want to live a life that is mine in which the choices I can make are deliberate and not reactive. I no longer want to take from family and friends; I want to give back to life. This understanding of me as more than my body and being a sick person was a major turning point. My change in perspective moved my life journey to a different direction even though my life had turned another way due to external circumstances (like optic neuritis and multiple sclerosis) that were beyond my control.
What has happened in your life that changed your path from one direction to another – a change that was beyond your control? Did it change you as a person? How?
I would love to hear your stories – bends in your life-road – or any comments you have. They don’t have to be related to ON, MS, or TN. And if you have any questions – please don’t hesitate to contact me via the Contact page, Facebook, Twitter, or by email at email@example.com
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