Adventure in the Waiting Game

I saw my new doctor two weeks ago. It was devastating. She hardly said words to me, and when I asked for more information about my MRI results, she led me to check out. Never to be seen again. There is some, it’s not good news, I guess. There’s some news.

I received a call from the neurologist’s office. I was scheduled to see a general neurologist, but he looked at my MRI results and symptoms and recommended me to the Multiple Sclerosis specialist. I know that doesn’t mean that’s what it is, but it definitely means I’m heading toward some answers. Which is pretty encouraging. I feel good that I’m getting a real answer, or that I’m on my way to one. I’m scared that this is what the answer is going to be. But I’m hopeful to finally be in the direction of help. Unfortunately, I have to wait now until December 8, instead of November 18.

It’s a terrible feeling when your mind is betraying you. A mind I had, mostly, come to trust. I have, usually, an impeccable memory. But now I feel like I’m floundering to remember the simplest tasks and words. Last night, and this I guess is big news too, I sucked it up, put my fear aside, and went to a worship service at the Salvation Army. It had its set back, but I’m glad I went. Standing by a dear friend, with a dear friend behind me. It’s true about being protected on all sides. Because there was someone there that makes me feel unsafe, and I didn’t give it a second thought. I mean, I bolted out of there when it was over, but still. It’s a step. But my hands were shaking the entire service. My hands clutched the seat back in front of me. For balance and to steady my hands. But ultimately something deeper was revived.

What really scares me about all of this is the being alone. I know that I am surrounded by people who love and support me. The collection of cereal I’m still wading through is proof of that. The encouragement. The prayers. I know I’m not alone. But I am physically on my own most days. I like living alone. I prefer it, but some days I get scared. And not just because choking to death is an actual fear of mine. Long before I’d started watching 30 Rock.¬†

But now there are new factors. Like trying to get out of bed and having a migraine so crushing I collapse to the floor, where I stayed for a couple of hours. Like when I forget how to get somewhere, but know I have to get there in my car, which I may or may not remember that I’m driving. When I’m scared to death of how the future looks and don’t have any of my dearest friends right next to me or down the hall anymore.

I find myself trying to stay too busy. Because I don’t want to be alone to think about things. I’m scared to. But then I find myself playing a part. I feel so far from myself. No. That’s not true. I feel dishonest. I feel like part of me is hidden away. I assume a lot about what people are looking for or expecting of me. That I think I’m supposed to appear fine all of the time. That I think I’m supposed to have it all together. That I’m supposed to be bubbly and excited about every person I see. **Spoiler alert** I’m not. Sure, that’s part of me. But if I could be sincere about how I feel all of the time it would be simultaneous and constant screaming paired with sobbing, which I’ve found, people don’t love for you to do. Life feels tense everywhere. I have to be upbeat or super approachable or helpful or friendly, and I’m not saying I can’t be those things. I can. I have been. Part of me is. But I’m just so damn scared of fading away. Of being rendered useless. Of spending the rest of my life on my own, because if I feel like a burden now, it’s only going to get worse. And that truly terrifies me.

I didn’t realize just how proud I am of my mind until I started to watch it fade away. I don’t know how people survived this way without things to remind them. The notes I carry around in my person or pockets. The list of reminders set in my phone. The things I just keep repeating to myself. I’m still not doing great with locking my door. I can’t seem to get that one to click. (you’re welcome).

Adventure in Best Practices 

  A thing I have to do every night now is this. I have to take a picture of my door, so that I can remember that it’s locked. I have dozens of pictures of this locked door on my phone in my deleted folder. I delete it every morning, so I don’t trick myself. I could easily trick myself. I’m sure there’s a simple compulsive behavior tied to the night I know I locked it, and still woke to find it unlocked the next day. But mostly I do it because I simply can’t remember anymore. I was checking 5-10 times a night before bed, which I’m sure annoyed my downstairs neighbors every time I walked up and down the creaky stairs. And still I’d get up, restless at 2 in the morning completely unsure if I remembered to lock it. I simply can’t remember. And that terrifies me. 

My MRI is Monday the 12th. I found a new doctor, and I meet her the 15th. I couldn’t get in to see a neuropsychologist until November 18, but steps are being made. 

In the meantime, I photograph my door. I chant to myself where my keys are. And lately I’ve been using a tens unit and icing my back and shoulders just to be able to stand each day. Nearly every day at lunch and right before bed I cry for a solid half hour. 

Today I cried when I called Lutheran medical group to find a new doctor and the lady yelled at me when her phone made me sound muffled. It was fine when I heard the hold message. It was a mess by the time I got transferred to her rude ass. So I hung up and sobbed. I called back immediately and sat in my hallway holding and crying for 20 minutes before I gave up. My new doctor is associated with neither hospital network in town. This is good news to me. 

I’m starting to feel like Guy Pearce in Memento. “I guess I’ve already told you about my condition.”