April 15-18: Step by Step

So here we are, mere weeks from the one year mark.  I’m feeling kind of anxious about the whole thing – an odd, uneasy feeling as April 7 gets closer, as the mere mention of Good Friday conjures up a memory of not knowing what the next day was going to bring and being blind-sided.

I just started singing again.  They needed me to sing backing vocals at the church I play for, and once that was over with I offered to do more backing vocals in this new band I’m in.  Yes, that’s right…I’m playing again, too.  It’s probably the most relaxed I’ve ever been, as the lead singer is a famous local poet and professor of English.  And I happen to know he also teaches a class in the performing arts, so of course it’s an encouraging environment.  The songs are easy arrangement-wise, but the challenge is making them sound interesting and focusing on the lyrics, which is are edgy, beatnik beautiful.  Was it destiny that lead me to this point?  Possibly.  But anyway, my voice seems to be back and I’m damn happy about it!

One of the teaching pastors asked me how I was doing with everything, and complimented me on my singing.  I told him I hadn’t sung in a year and a half, and feared that my voice wouldn’t last through the four hour rehearsal and four services.  I didn’t tell him this, but there’s a small lingering thing I’m going through, and I was afraid it would happen at random moments during the songs and draw attention to me.  It happens very briefly – sometimes when I talk, certain vowels trigger a tickle inside my left ear, a shiver that goes deep into my head make me shudder and look like a dog that’s heard something unpleasant. It makes me shudder uncontrollably for a few seconds during which I hope no one notices.  It only happens when I’m in a conversation, so I’ve been keeping my conversation limited with people other than my husband.  I will keep observing this – I suspect it’s some nerves finally waking up after months of inactivity, and nothing more.  

I am hesitant to say anything about my deficits, but during my conversation with the pastor I mentioned I had had trouble with the moving lights when I first returned to playing.  He asked me if there was anything they could do to reduce any future anxiety when I’m scheduled to play, so  I told him  strobe lights might be a problem (yes, they have strobes occasionally there) and he immediately texted one of the stage techs about it.  I told them I hadn’t said anything because I didn’t want to be a bother, but he said please tell them about anything as they wanted to make my experience there as comfortable as possible.  I was glad I said something – better to do that than quietly stress and hope no one notices my occasional inward struggle.  I left there feeling special and appreciated, and not pitied at all.  

I’m at the last few pages of my journal, and I’m discovering that the last few entries were just brief recollections of the day.  So after this one I think I’ll keep things in the present. Maybe I’ll finish by April 7, but no worries if I don’t.  It’s been very busy the last few months and I did just recently get out of a dark hole.  I thought I was going crazy again, having wild mood swings that I endured silently.  I almost went back to my social worker, needing assurance that it was a typical recovery symptom like the internet said and it would pass.  But, I didn’t.  No time, too busy, and I wanted to wait it out.  There are definite changes in my personality, though, I can sense them.  And I accept them.  I’ll never be exactly the person I was before but that doesn’t mean I can’t be better in other ways.

Recently, my sentences in lengthy emails don’t appear to make sense, at least to me.  I will usually end up simplifying the message, or bullet point the ideas so they are clear and lineal.  Not the most interesting way of expressing myself, but no need to get over complicated or clever.  Sometimes I have something witty to say but lack the mental speed to zing it back out there to the hive mind.  Too much effort, I think – don’t I have to get a coffee order in before the end of the day?

And sometimes I look at my name, and there’s still no sense of recognition or connection no matter how long I stare at it.  My doctor told me this happens to everyone. But it scares me, just a little, all the same.

I decided to watch real TV again, or as close as I could get within the strict instructions my doctor had given me.  I thought Bewitched wouldn’t be challenging, what with the fairly predictable plots (usually involving a spell gone horribly awry and trying to hide it from Darin’s boss or the nosy busy-body neighbor lady) so that kept me occupied for a half hour, then decided the Cartoon Network might be more my speed.  I caught Scooby Doo on Zombie Island on another channel and found myself analyzing the huge differences from the choppy animated version I grew up with, where everyone had no distinct relationship and seemed to just be traveling in a colorful van for no reason.  When did Daphne have a career as a news reporter?  And when did she start having a thing for Fred?  This was clearly no longer the innocent depiction of teenagers off on supernatural adventures – this was in the real world of violence and tragic endings.  I quickly went searching for lighter fare, and ended up watching an episode of Doc McStuffins, and learned that Florence Nightingale was a real person who had first started a school for nursing.  Delightful!

Adventure Time had been recommended to me by people who thought I’d really enjoy it, which I did, but there was a LOT going on that I wasn’t prepared for.   The saturated psychadelic colors, the absurd story lines and random unsettling images were a little too much, but I did like the whole stream of consciousness way it was presented.  I found it gorgeously crazy and decided to watch it again in a month when my head was a little more ready for such things.

I had two visitors this week.  The first one was a girlfriend that I’d met at work, and she brought me orange pekoe tea and a bouquet of flowers.  We had just made dinner when she arrived, and I invited her to stay and eat.  During our meal, I attempted to fill her in on what had happened but in the middle of it I became confused as to when certain things took place and became frustrated and had to start over again.  My husband discussed this with me after she left, suggesting that I leave out some details and just get to the action (“I had headaches and hallucinations, I went to emergency, they found a mass on my left frontal lobe, etc.”) .  I followed his advice and was able to more succinctly explain the events to a co-worker who visited that Saturday, one who actually surprised me by asking to see my scar.  Like everyone else who had seen it (which I could count on one hand, and I could barely look at it myself), he said it didn’t look bad at all and marveled at how medicine had become so advanced that I was functioning as well as I was after such an ordeal.  He admitted that he had always been fascinated by psychology and the brain in general, which made me suspicious that he was just visiting me to satisfy his scientific curiosity.  He laughed and said no, he was truly concerned and wanted to see for himself that I was alright.  “Tell people I’m not a drooling vegetable,” I said, and told him to encourage people to come and see me as I was eager to improve my communication skills.  At least at a time – it was still difficult for me to have more than one visitor in the room.

Before he left, I gave him three thank you notes I had written for the founders.  I  thanked the two of them for visiting me before my surgery, and as for the one that couldn’t be there due to business travel I thanked him for his words of encouragement via text that night in emergency.  I had found that while writing these thank you cards (on Snoopy stationery, which I hoped would lighten the mood) my script was very neat and in capital letters, and when I started writing I just kept going on and on and ran out of room eventually, having no idea when or where my thoughts would finally end up.  I’m sure I said some crazy things, but I meant well!

Also had my follow up appointment with the oncologist this week.  I admit it was very unsettling being in the cancer building.  I didn’t belong there and I didn’t want to be a visitor.  Well, who does for that matter – but my tumor had been benign and I was kind of in disbelief that I was actually in this building at all.  But it turned out well.  Not only did they have the best magazine selection of any waiting room I’ve ever been in (Vogue and Harper’s Bizarre!), but my oncologist said the tumor committee had decided I didn’t need any radiation treatment and a six month MRI was the recommended course of action.  He said it with what my husband and I registered as almost disbelief – apparently they had assumed it would be cancerous, despite my neurosurgeon’s firm belief that it wasn’t.  I decided I’d take the better news between the two of them, and besides, the tumor council had spoken.  MRI in six months it was.

When we got home, I dictated an update to my husband who posted it on my Facebook page.  I received about 60 likes in the first half hour it was up.  One cannot deny the power of social media – I was amazed at how many people cared about me, even if I’d never met them or seen them in years.  I also noticed who I expected to express concern, but didn’t at this time.  



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