A poem

I am a gelatinous mass

Roughly the shape and size of a

Bean bag chair- a big, soft, pink one.

 

I had a drop attack yesterday morning.  That’s about three months and a week since the last one.  It was a weird one; my knees sort of buckled, then I tripped.  Usually I just crumple.

My memory is a bit spotty about it.  Trouper was, of course, immediately by my side looking out for me.  That’s what stands out most.  I don’t remember getting up.

I’m pretty disappointed.  I was supposed to go with my father to Brew at the Zoo. I’ve wanted to go to one of those for a while and I hate breaking plans.  I ended up going back to bed and staying there longer than I should’ve.

 

I saw my psychiatrist on Friday.  The last time I saw him he said that I if I got to a stable point (where technically I was when I saw him) he would consider moving me to a different medication.  The medication in question is generally known to cause weight loss, which I desperately need.

He says that he doesn’t recall saying that and that he would prefer I talk to my neurologist before he changes my medication.  I don’t see my neurologist until the beginning of July.

So, more disappointment.

 

According to all the scales I’ve weighed myself on, I’ve gained 5 – 15 lbs since I’ve been put on the Depakote.  It’s the heaviest I’ve ever been and it is the worst thing in the history of anything ever.

Not because of aesthetics.  I can’t imagine anyone could even tell at this point.

No, I just feel like shit all the time.  Just sluggish and lightheaded.  Put that on top of the back pain and I can’t get anything done.

It’s possible the lightheadedness is caused by the Depakote, mind.  Another reason I want to drop it.

I’m trying my best to push through.  My dad and I just got back from a trip to Rehoboth beach where it rained for four days straight.  In a majestic swarm of counter-productivity we ended up going out to eat every night.  I got home and decided to immediately jump into a new diet/exercise regimen.  Namely calorie counting and swimming.

I don’t ever want to feel the way I felt at the end of that trip again.  It’s a pretty effective motivator.  Let’s see how long it lasts…

 

I’ve left good news for the end!  The Johns Hopkins bariatric center finally called me back: they approved me for a consultation!  I see them in less than three weeks.

I’ll fill you in more about that later.

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The right write

It’s been three months to the day that I’ve had my last drop attack. (And there was much rejoicing.) As I mentioned before, I had been having them roughly every month.  So the Depakote could very well be working.  It hasn’t done anything for the myoclonic jerks but I can address that later; it’s more frustrating than alarming.

Also, I can legally drive again.  Not that I’m going to drive anyway (that’s in OCD’s court) but it feels good that I could, for some reason.

 

In more exciting news, I’ve had a second correspondence with Señor Lin-Manuel Miranda!  I decided that I would like to frame the first letter he responded with, then had the inspired idea that it would be nice to have the letter and the picture on the front of the post card by side in the frame.  So, I wrote him back giving him puppy-dog eyes (literally- I sent him a picture of my dog) and asked him if he could send me another… which he did!  Crazy, right?

It was, as the one before, short and sweet.  There’s a slight problem with this one, however.

It’s the first of three sentences:

“It’s always a treat to hear from you.”

Good goddamn.  Is that an invitation to keep writing to him??

 

I don’t want to get ahead of myself.  It would be pretty sweet to be pen pals with Lin-Manuel Miranda, but I do understand how he has people that want something from him coming at him from all sides and I don’t want to be among the worst of them.

I don’t want to infer that he has been anything but formal in his letters, by the way.  It’s “your support means so much” kind of stuff.

I’m conflicted.  I think I may write him again, but I’ll try to reserve writing for the right moments.

I’ll be waiting for you

I have a few recurring dreams.  Most of them take place at my alma mater.  I’m taking classes again.  I’m in a play, it’s opening night and I don’t know my lines or my blocking.  It’s concert night for my acapella group and I don’t the lyrics, the choreography, or what to wear.  Some of them just take place on campus but don’t have anything to do with school.  I’m reunited with my childhood best friend and get to meet her two little girls.

I’m not surprised by any of these dreams.  Especially the performance ones; they are common for former theater kids, according to my mom.  And they all have to do with regret in some way.

Then there’s this one dream that makes me curious.  It’s not a situation or a place though- it’s a person, someone I don’t think I’ve ever actually met, and he comes to me wherever I am.

 

I’ve come to know him as Ben, although I don’t know that he ever introduced himself as such.  I can think of several reasons he is tentatively “Ben”, but we’ll cut through a lengthy backstory and I’ll just say that I’m a fan of the name.  (I like the name Benji more, so I don’t know completely what that’s about.)

Ben tends to enter a dream in progress.  There’s a carousel on the senior quad and his nutria pulls up to my oversized sardine (it’s a dream so the animals we’re riding are delightfully absurd).  He asks me a couple questions, we do some chit-chat.  Then he asks me if I’m ready for him.  And I tell him,  “no.”

Then he leaves me with these words, more or less, “I’ll be waiting for you.”

 

Now, I know it’s a dream, therefore a product of my mind.  Yet, I have a hard time being black or white on this one, playing either the realist or the romantic.

Should I let myself believe that Ben is indicative of a real person waiting out there for me in waking life?  Should I let myself believe in true love and serendipity and magic and romance?

Or is this all brain chemicals and loneliness and desperation?

 

In my customary noncommittal way, I think it’s somewhere in between.  I’m going to meet someone at some point and in its way, I could say that they are Ben without saying they were prophesized by a dream, a “dream come true” if you will.

But, no, no one is going to approach me at any point and say “Hi, I’m Ben. You know me from your dreams that I have been visiting like some defunct, eunuch incubus and I’ve been waiting for you, like a big ol’ creep.”

Basically I’m a work in progress and at some point am going to cross paths with a person that is self-same ready for me and, in a way, my Ben.

I think my mom reads my blog.

Today we were sitting my living room and my mom said, “Did you know that Harriet Tubman suffered from seizures as well?”

“No, I didn’t!” I replied.

“Yeah, apparently she got hit in the head with a brick or something… Can you imagine?  And the way we get worry about getting you around and your steps, her out there trekking up and down America, sneaking people to freedom.”

I doubt she actually does (my mom read my blog, that is- Harriet Tubman totally freed people) but the guilt bee buzzing around my head was whispering tales of my belly-aching in my ear.

 

In my defense, Harriet Tubman was one of the most kickass women to ever exist.  So, comparing me to her is a bit unfair.  On the other hand, I have been a bit of a bitch to my fear.

I also have way too many excuses.

And an undue amount of guilt.

I have a lot of work to do, don’t I?

Fall-down Up-date

I saw my neurologist Thursday.  I’m not sure why, but when he initially gave me the diagnosis of JME last time we met I didn’t exactly register the “E” part of the acronym, which is to say “epilepsy”.  I thought he was just solely describing the myoclonic jerks.  In my case, that’s kind of true.  Additionally, for most people with JME, tonic-clonic seizures are common, atonic rare.  I’m just a rare case altogether.  Most people have JME onset in youth, as well.  Technically my diagnosis is late-onset juvenile myoclonic epilepsy.

It’s sunk in now, I think, maybe not completely.  I think for to have sunk in completely, I wouldn’t be afraid all the time.  I can’t imagine people who’ve dealt with epilepsy most of their lives walk about with the constant fear of falling as I do right now.

The other day I went to the mall to get some new bras, entered on the wrong level and had to take the stairs down.  That was the intention, anyway.  I am honestly not sure if it was on any level warranted, but I was terrified of that damned staircase.  I clung to the railing, kept my center of gravity low and reached out with my foot.  I looked like a freaking crazy person (always a possibility) but I just couldn’t make myself take a single step.  I walked around to the escalator, which was better but not by much. I held on to both railings and shook visibly, but I got to my destination and that’s what important I guess.

Hopefully it will improve with the Depakote.  I took a blood test and it revealed that my level is around 30, whereas the therapeutic dose is between 50 and 100.  So, Dr. B doubled my dose.

We’ll see what happens.  We might not know for a while but we’ll definitely need to give it at least a month.

Meanwhile Dr. S wants me to practice going down stairs.

I’m special.