I keep trying to be a normal human...at least one day a week. Understandably, that is limited when I must be wearing the darkest sunglasses I own if there is a speck of daylight or I am around florescent lighting. Saturdays have been the days that I try to venture out. As it is the holiday season, my six year old daughter had 6 year old activities that I wanted to attend today.
We started the day by going out to breakfast at a sit down restaurant. The food was great, as was the service, but the lighting was intense for a 100+ day headache sufferer with non-stop photo-sensitivity. The restaurant has many windows, they have a hanging light over each booth, but also had every can light burning on the ceiling. Not only did it bother my internal eco-warrior, it incensed my headache. It was a lovely breakfast though,and my six year old will not remember the intense lighting when she remembers the day.
Next, we went to the local VA hospital nursing home, where my daughter's dance troop performed a couple of shows for the veterans that were patients there. They really enjoyed having the kids perform for them. There was a lot of laughter, clapping, and smiles. The facility was also flooded with florescent lighting and I was unapologetic for being the only person with the group that kept their sunglasses on the entire time. There were a variety of florescent lighting sources, and the longer I was there I could literally feel a pressure pushing on the right side of my head that was more intense than the headache that has been with me 24 hours a day for the past 100+ days. There were moments of intense dizziness, lightheadedness, mild nausea, but I tried to not let on. I did not want to ruin my daughter's morning. This was her day. When we finally left the facility and entered the exterior lobby, I could tell two things. First of all, I was no longer in the presence of florescent lighting. Additionally, much like a day earlier in the week where I had experienced blinding pain, a weather system had moved through while we were in the nursing home and it had begun to snow.
I am not sure if it was the riddance of the intense lighting or the change in the weather, but I felt a great relief after leaving the place where my daughter and her friends had spent their morning performing. With a renewed sense of feeling more normal again, and the knowledge that a movie we had been wanting to see with our daughter and a friend would soon be ending, my wife issued the text and our friend met us for a matinee showing of the new Muppets movie at a local theatre. The sound in the theatre was deafening and painful during the previews, but I had come prepared. I'd purchased ear plugs that were designed to protect ones ears whilst shooting a firearm or operating large equipment. They were rated to 33 decibels. After getting them properly installed I could still hear the movie fine, but the entire theatre was otherwise silent. I knew they were working as I could see the audience laughing, but could not hear them. I could not even hear my wife speaking a time or two when she commentated on the film to me from the next seat over. Yet, I could still hear the film. Makes me wonder if it was loud due to my sensitivity to sound with this headache or if we constantly submit to damaging levels of volume when we take our families to the cinema?
It was a great film. Classic Muppet hilarity. First theatre film I had been to since this whole thing began last September, but I was glad it and our day out was over. As we drove home I could feel the headache intensifying above the 6 or 7 where it had fallen to when we left the nursing home earlier in the day. I knew it was just a matter of time until I could not keep up my game face to my daughter anymore and I would no longer be able to wear my "Super Awesome not in too much pain Dad" facade that I had been trying to keep up for most of the morning and afternoon. It hit me nearly as soon as we pulled into the garage. That was indeed the culminating event of my awesomeness...parking the car. I went inside, got out of my street clothes and into shorts and a tee, ate a snack, took my medicine, and headed for my sanctuary.
I do not remember much about the hours of approximately 4PM to 10PM in the evening. I know I was in my office, on my leather sofa, in the dark, and wrapped in a blanket. I have brief memories of the clothes dryer buzzing at some point, hearing my wife's fingers tapping away on her keyboard at her desk in her effort to earn a living, the pattering feet of my darling six-year-old on my wood floors as she opened my office door to give me a goodnight kiss on the cheek, but all else is a blur. I am not sure if I was asleep, as is my natural reaction to headache pain, or if I had passed out from the intense pain that I was experiencing which the Indocin and Topamax that are supposed to control my Hemicrania Continua-esque headache seem to be failing to do.
If you have read this, welcome to another glimpse of my life. It is not without joy, it is not without happiness. I have a wonderful wife and daughter, good friends, and can occasionally do normal things like going out to breakfast, proudly watch my talented daughter perform, and go to a film with friends and family. That stated, it is never just me that is attending these things. With me, always, is this infernal drumbeat, the headache that will not give me leave. With me in all my pride, fun, and joy...is pain. It gets harder to seem normal when I have to wear ultra-dark sunglasses at 10 o'clock at night in a restaurant, or in a building with few natural sources of light on an otherwise completely cloudy day. When I have to take leave from my classroom because the sound of 25 teens engaging in collaborative learning is so normal, yet builds to such intensity that is makes me lightheaded, or when a car backfiring somewhere in the neighborhood causes my ears to ring as if I had been standing beside a percussion grenade. It never seems to get easier. The longer this goes on it just seems to spiral downward. Rest and relaxation have done little if anything to help. Though I have made an appointment with a headache specialist at a nearby University hospital, I have to wait another month to see him unless I can catch an opportunity to get seen on a day that someone else cancels. Throughout all of this one thought keeps pulsing through my mind, "I am a really decent person, try my best to do everything right, made all the responsible choices, when am I going to catch a break with this?"