It’s hard to admit some things, and this is one of them. Sometimes, it feels like I’m not really going through this stuff. It’s like I’m watching a movie about someone else. It feels wrong, sometimes. Like I’m an actor who portrayed a great man, and begins to receive the attention of a great man. I feel uncomfortable with the attention. It feels undeserved. I feel guilty receiving it. I’m fine with receiving attention for achievements I’ve accomplished. Hell, I used to thrive on it when I was still playing music on a regular basis. But this is different. At the same time, I appreciate the fact that they understand my situation isn’t what it was before diagnosis.
I’m not sure if I’m actually explaining this very well. In my defense, I never said I would be good at getting my experience down well in writing. I simply said I was going to try to be as honest as I could. So, here’s the honesty.
On good days, I begin to get the mindset of ‘I’m fine. All this has simply been a mistake.’ It’s like I’m watching a movie that really sucks me in. I’m speaking of going out to the theater, of course. You just don’t get the same experience at home. The theater is dark. I’m removed from the outside world. The movie sucks me in, and I’m living in that world. Whatever world to which the story has transported me. A foreign land. An alien planet. Someone’s living room. When it really sucks me in, I’m all in. And then……….the credits roll, and I walk out of the theater, back into my normal life.
I keep wondering when I get to walk out of the theater and return to my old norm. A year and a half into it, and I still feel like it’s not really happening to me. At the same time, I feel guilty for putting the people who care about me, through the fear and……..well……….all of it.
I don’t want them to worry. Still, it makes me feel good knowing that these people do care. It’s a truly fucked up dichotomy. And the feeling is actually worse when I am having a good day, or a few in concession. When I feel good, it makes me feel more guilty about worrying them. I had dragged them all out to the movies to see ‘League of Extraordinary Gentleman’, and now, the horror I had exposed them to is over. We can get back to regular life. Yes, I feel the need to apologize for putting them through it, but it would probably just be best if I don’t mention it. We are out of the horrible mess that I put them through, and it’s just the old gang together. (And yes, I did just compare making someone watch that movie to someone dealing with finding out a friend has some damn disease. I think that travesty of a film deserves it. It actually might be an insult to diseases. Sorry for that.)
I guess what I’m simply trying to get across is how mentally messed up it can make a person. Everyone is so worried about us, it can be easily forgotten that we are worrying about them as well. The concern goes both ways. Those of us as the eye of the storm understand this more than anyone. The reality that it is a massive change in the life of the person with the disease doesn’t always show how much of a life change it is for those closest to them. The supporting cast in this disturbing movie, doesn’t get the interviews, attention, or awards that the starring actor gets. But if you try to imagine the movie without them, well, it wouldn’t be much of a movie. The main character wouldn’t have any reason or motivation to further the plot. Plus, in this movie, no one involved chose to appear in the story. They got the part by association, yet they are still a integral part of the story as a whole. I imagine, for some of them, it’s hard to accept that it’s happening in their lives as well. It’s simply something no one ever expects to have to deal with. Yet, suddenly, we are.
Luckily, thanks to the good days, we get an intermission. We get to go out to the lobby, taking a break from the drama, and grab ourselves some snacks.
This past weekend was one of those intermissions. It couldn’t have come at a better time, either.
As some of you already know, due to being Facebook friends with me, I had a ‘not so great’ visit with my neurologist last week. Due to the shaking that has become a more frequent situation, (I was shaking pretty well the day of my appointment, which is kind of a good thing. Like when you take your car into the shop, and it actually does what you could never explain to the mechanic.) added to the numbness and balance issues that didn’t seem to be heading in the ‘getting better’ direction, I’m heading back in for some more MRIs this week. If the MRIs show the lesions have been progressing, (For those of you who didn’t take notes, one is on my spinal cord near the base of my neck, one is on my brain.) I may have to move up to a more aggressive medication, and possibly start a steroid treatment for a good chunk of weeks.
Now, I sort of expected some bad news. I mean, I knew I was shaking more. I new my balance had been a little iffy now and then. So, yeah. I expected a possible medication/treatment change. That is not what really put me off, though. To help explain what did, I’ll back track a little, since I don’t know how much I mentioned something that is pertinent to the reasoning behind my emotional reaction.
Doctor Rhymes With Gong has been clinical, straight forward, and brutally honest, at times, throughout the year and a half that I have been seeing her. She was always pleasant, but never really showed much emotion. I didn’t really mind all that much. I like that kind of honesty. Especially in a medical expert. I turn into Joe Friday, in the sense of a, “Just give us the facts, Ma’am.” sort of way. That’s what I want from someone who is helping me fight off an incurable disease. It makes me feel like they know what they are doing. So it worked. She’d give us the facts. We would take them home with us and fret over them. That’s how it went down.
This time, though, she seemed genuinely concerned. THAT was unnerving. She wasn’t supposed to show emotion. She was supposed to be stoic. Methodical. Dr. “Just the facts.” Now, I hope I don’t come across as dogging her. I’m not. Under most circumstances, it’s nice to know your doctor has your health as a concern. That’s why you’ve gone to them. I just hadn’t SEEN concern on her face until this visit.
Jen tried to remind me that maybe she had already been having a bad day, and her composure might not have had anything to do with my situation. I wasn’t sold. I don’t really recall her demeanor when she entered the examination room, but I don’t recall noticing anything different until she saw the shaking, which she couldn’t help but almost immediately notice. Plus, she had me walk a little so she could observe any (Damn it. Lost the word.) imbalance. Her reaction to my stride told me she didn’t like what she saw. She had me do several other simple movement and sensory tests, most of which I had done before, in the exact same room we were in on this visit. Deja Vu anyone? None of her reactions today seemed to mirror the earlier visit’s solid stoniness. Crap. Not Deja Vu.
Before leaving the office, they drew some blood. It was the first time while having this done, that this disease became a tangible factor in the process. The nurse initially was drawn to my left arm, I was guessing because it was still. No dice. She couldn’t get a vein to show. She turned to my right arm, which was still shaking pretty well. I don’t even know if she heard the sigh of ‘Oh well, here we go.’ that escaped her lips before heading toward my vibrating right arm. I did. I stumbled over some words trying to explain that the shaking wasn’t due to nervousness. She simply said, “It’s alright. I’ve done this often.” I was sure she had. I was sure she already knew why I was shaking. I’m not really sure why I tried to explain anything. This woman had drawn my blood before. Several times, in fact. She knew about my situation. Still, there I was. Assuring her it wasn’t nerves.
She obviously had done this a lot. One try, and the needle was in. My blood filling the two vials she had at the ready. Flawless! I love professionals!
A couple days later, the MRIs are scheduled, and there is nothing left to do but wait and see. So, when the weekend came, the shaking was at a minimum, and I actually had energy, the intermission was able to ensue!
I went out on Saturday night with old friends. (Thanks Scott and Doug.) We stayed out later than we should have. Some of us may have had more to drink than we should have. And we may have been the oldest dudes at the places we hung out, but damn it, it felt good to be out in the lobby enjoying some snacks.
The intermission lasted through the next day as well! Jen and I met a couple of friends for brunch. Well, it was a little bit brunch, and a bit more mimosa. Thanks to Chris and Deb for indulging us. We were making the most of me actually feeling pretty good.
After that, we went to a fundraiser for a friend who had emergency heart surgery several weeks ago. He was back at work bartending at one of our favorite bars, and we were able to show our support and help ease the financial hit he and his wife had taken. It felt great being able to be on the giving side of a situation like this instead of the receiving end.
Of course, I know this intermission will end at some point, and we will have to get back to playing out the surreal story that is now our lives. My MRIs are in a couple days, and they will be a harsh reminder that what used to be normal life is now a spattering of good days here and there. It’s too bad I didn’t appreciate it more when it was the norm. But, who really does?
Until next time, enjoy the here and now. You never know if, or when you are going to suddenly be made a part of some movie with a crazy plot that only grants you brief intermissions. Enjoy the lobby. Get yourself some snacks. Do it now, just in case you soon get the announcement to take your seat. The movie is about to begin.