I was the one who has always waited until I was alone to break down, being constantly afraid of appearing weak.
I was the one that comforted my wife and aunt when we learned that my grandfather had passed away while we were on vacation, even though my heart felt like it had been ripped out of my chest.
I was the one that held my family together when my younger sister was admitted into the psych ward for attempted suicide, even though I was reeling from the knowledge that she didn't follow through with killing herself because she wanted to tell me she loved me one last time.
But yesterday, as my wife held me in her arms, I cried like a fucking baby.
I approached my wife yesterday, as she was getting ready for work, and asked for a hug. She wrapped her arms around me and pressed her head against my chest, and I could feel the cool moisture from her still-wet hair soaking into my shirt.
"Are you okay?" she asked quietly.
And with that, I broke down.
I could feel every piece of the facade I've built around my emotions crumbling, and for once I didn't struggle to rebuild. I didn't bother to wipe away the tears streaming down my cheeks.
I just cried.
After more than a year, I have finally come to terms with my medical problems. Seeing my MRI and EEG results in person made it sink in: This is real. I have proof that there is something wrong with me that is causing these problems. And it was like a weight being dropped heavily on my shoulders.
I'm scared. I feel vulnerable. I feel like everything is spinning out of control, and that there is nothing I can do to stop or change any of it. I'm scared because this condition is slowly and irreversibly changing my life. I've seen how it has changed my mother's life (she has the exact same thing), and I'm scared for whats going to happen to me. I feel vulnerable because there was never anything I could have done to avoid any of this, and there is nothing that I can ever do that will stop the progression.
Ultimately, I didn't learn too much at my appointments last week. My doctors pretty much reviewed what I had already been told, and we discussed what the next plan of action was going to be. Even though I've only seen my doctor's twice in 10 months, they've apparently spent large amounts of time poring over my test results trying to find something, anything, that they could link to as a cause.
When reviewing my MRI, I learned where in my brain the GMH is. It is a 5mm-wide piece of extra gray matter located on a portion of the basal ganglia. There are two halves of the basal ganglia, one on each side of the brain. The GMH that I have is on the left side of the brain, which controls the right side of the body. The theory at this point, is that the extra gray matter on the part of the brain that controls motor function is causing "bursts" or "episodes", that translate into the movements that I have.
The EEG that I had showed abnormally high "bursts" of electrical activity in certain portions of my brain, but that there was no clinical (ie. visual) proof of anything.
One thing I'm trying not to focus on is one sentence that my doctor said very quickly: "At this point, we do not believe it is a tumor." That statement went against what they had told me earlier, and that is quite a statement to grasp. Only because I have direct family history, in two different relatives, of brain tumors.
The next plan of action is going to be a sleep study. There is suspicion that I might have sleep apnea, so they are going to try to diagnose that, in addition to getting visual proof of my movements and another EEG scan of my brain while sleeping. I'll be going down in September for that.
Both my neurologist and epileptologist want me to start medication for treatment. They don't feel that there is any danger if I didn't start medication, but they said since its been going on for a year with no treatment that I would probably benefit from it, at least a little. They gave me two choices of medications:
- Keppra, which is an anti-convulsant, reduces the activity in the brain that causes the movements.
- Benzodiazopene/Clonazepem, also an anti-convulsant, works also as a mental sedative.
While each might help control the symptoms I'm having, there are downsides to each drug. Due to its potency, Keppra can damage the brain if you take it when you don't really need to. Clonazepem is habit-forming, so as your body builds tolerance to it, it demands a higher dose to make the medication effective.
My mother has taken both of these drugs through the course of her treatment. She has been trying to come off Clonazepem for about 8 years. Keppra is the only drug that she has tried that has lessened the symptoms, but there is the danger of brain damage from it.
What a choice to make, eh? Become a vegetable or a drug addict... Not exactly like trying to figure out what t-shirt to wear in the morning. I'm going to talk things over with The Boss and my parents, and give a response to my neurologist by Wednesday. At this point, I'm not sure which way I am going to lean towards.
I'm still struggling to remain strong about this. As I've typed this, I've had to stop a few times to wipe the tears away. I'm not used to feeling this way, and I don't like it much. I know I need to be strong about it, because it is not just scary for me. The Boss is scared and worried, too. This is uncharted territory, both for me and my doctors.
In the end, I know I'll be okay. I have an amazing circle of people around me that provide support and empathy, and that is the best form of treatment for me right now.
P.S. There has been a drought of funny around these parts lately. I'll make you laugh with tomorrow's post, I promise. It'll include my thoughts and opinions of "The Dark Night".