Post-ECT (or, “A Post about ECT”)

Among the things I hate to admit is the fact that I truly believe ECT is helping me.  How can something so uncomfortable and dreaded have such a positive result?

I had ECT yesterday.  I make myself physically ill with the anticipation leading up to it, and I know I have to totally clear my calendar for that day because I will be useless when I get home.  For starters, I can’t eat anything for 12 hours prior to the appointment because otherwise I tend to throw up and it’s not pretty.  Upon arriving for my session, I take a cognitive response test to make sure I’m “with it” enough to go through with the therapy.  I take a shot of oral meds to help increase the level of my seizures, and then another to keep my stomach acids from roiling.  Then I take a pill that falls in the same category as Dramamine to keep me from tossing up the rest of the meds.

After I’m plugged into the IV, I’m rolled on a stretcher into the “electricity room” (my name, not theirs…..) and get hooked up to be zapped.  I am put under general anesthesia every time (47 times now, but who’s counting!).  But none of that is the part that I consider uncomfortable.  It’s how I feel when I wake up.

I’ve not seen myself in a mirror following ECT, but I have a fairly good idea of how I look.  Frazzled, drugged, unable to comprehend.  But I know how I feel, and it’s not pretty.  I feel dizzy and nauseous, and I typically have a terrible headache.  The 7-mile ride home in the car is almost too long, because I feel so nauseous and cannot hold up my head.  Yesterday I actually fell out of the car when I opened the door.  I need assistance getting in and out of the vehicle, and the only reason I brave the stairs to get to my bed is because I don’t want my children to see me post-ECT.  It’s scary and ugly and sad.  So I receive help getting up that staircase and collapse in my bed unconscious for at least another 4-5 hours.  If I don’t sleep through the night, I might get up to find something to eat.  But I typically don’t have much of an appetite and it’s tough to move around once I’m up.  I eat simply because I need the nutrition and hydration; otherwise, I’d stay in bed.

Halfway through the night following ECT, I often wake up feeling like I’ve been hit by a truck, because every muscle in my body aches.  I’ve been told that’s because of the seizures.  And when I wake the following morning, sometimes my head feels a little thick.

But surprisingly, that’s it.  Most often, I wake up and feel great.  I feel positive and alert.  And when I consider what I’d gone through the previous day, I’m always surprised at how great I really do feel.  The nausea and extreme fatigue are gone, the anxiety and darkness leading up to knowing I needed to return to ECT is gone.  I feel really good.  It’s amazing how many things in life start off badly, only to be good for you somewhere farther down the line.  I find myself doing this a lot lately:  trying something hard and distasteful, hoping for a good result.  And ECT is a good example of this.  I hate it.  I truly hate the anticipation and anxiety leading up to it, and all of the nasty discomfort and pain that follows for about a day.  And then I’m good for 5-6 weeks before I am the one to decide it’s time to go back.  The good feeling is addicting.  And I’m willing to go through the bad to get to that feeling.  I’m willing to do that in all aspects of my life.

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“Vacation, all I ever wanted…..”

Many women I know have a personal care “to do” list that they check off prior to going away on vacation: manicures and pedicures, perhaps a new bikini and the accompanying wax job, maybe even a haircut and highlights. Everyone wants to look their best before embarking on a sunny beach getaway, am I right?

I used to do all of those things, too. But in the last 18 months, the only “personal care” I cared about was making sure I had ECT as close to my departure date as possible. ECT seemed to calm my nerves and relieve a lot of the pre-vacation jitters many of us experience under the duress of trying to get a large family packed and organized to ensure the perfect, stress-free getaway. Ironic, isn’t it, how much stress a mom can endure just trying to make sure everyone else has vacation without it? Add bipolar disorder to the mix and that stress level is amplified tenfold.

I have traveled quite extensively since starting ECT in 2011, and I have found that making sure I underwent ECT was as essential to my state of mind as making sure I have Dramamine and an early boarding pass. I would have ECT three or four days prior to leaving for my travels and it made those pre-vacation annoyances and stresses seem less annoying and stressful. It had a calming effect, slowing down my thoughts and quieting my brain so I could stay organized and on track.

But this time I forgot. I simply forgot to make the appointment and have that essential ECT. And by the time I remembered, I had already left. Remembering that I forgot did cause some initial stress. I was traveling alone with my children for the first time since my separation from my husband, and the first day or two I think I let my loneliness for him be confused with anxiety and annoyance. I didn’t know how I’d get through the week. I was worried about how I would keep them happy and occupied for seven days without their dad; I was worried I would let my emotions get the best of me; I was worried I might move toward a manic state and ruin the trip for my kids. But surprisingly, I got over it pretty quickly. I tried to use some of the tools I’ve been learning with DBT, and found that I could calm my nerves in a timely manner.

So, I’m kind of proud of myself. Now that’s an emotion I don’t have very often. Between getting through an ECT-free vacation, and my kids not getting kicked out of the “all-you-can-eat” complimentary breakfast at our hotel for gorging themselves on a pound of bacon and a dozen pastries each morning, I’m doing pretty well. Back to my “real” world tomorrow night, but pleased I got through this week without ruining it for my kids. Yay me!

Nothing “purty” about it

My paternal grandmother, apparently, was bipolar. I didn’t learn this until just a few years ago. You see, I always thought she was just plain old mean.

There had been plenty of minor incidents when I was growing up during which I experienced my grandmother’s curious behavior. Oddly, she was always either high or she was very low. But there was no in-between that i can recall. We always thought she was just bitchy. And when she wasn’t being incredibly unpleasant, she was in her bed, seemingly feeling sorry for herself. She lived 1000 miles from our home so we didn’t see her often, but when we were together it was always the same routine. She was a miserable witch.

It had always been clear that I was no favorite of my grandmother’s. She had told me on many occasions that I was too much like my mother, who she referred to as a “Goddamned heathen immigrant”. My grandmother was a Methodist with a thick Southern accent (not the charming kind of drawl, either, but the hick dialect of an uneducated farm girl from the South). My mom was an obedient woman, a Russian Orthodox who was not the first choice of a wife for her perfect and only son. And my grandmother hated her; by relation, she also despised me.

I remember a couple of incidents quite clearly, which I now recognize to have been manic episodes. The first was at my high school graduation party. My friends and guests were milling about, congratulating me and paying me attention. But my grandmother was being largely ignored, and her narcissism and her disorder couldn’t handle the slight. So she worked her way into the center of the small crowd with whom I was conversing, and I was starting to introduce her when she announced quite loudly, “Ya know, if you were half as nice as you are purty, you mighta turned out okay….”. The crowd was still and silent, and I did my best to choke back my tears and hide my shame. My father quickly escorted his mother from the patio and brought her inside. She spent the next day in bed, never once rising until the following afternoon. I was devastated that she had embarrassed me in front of my friends, and I received no apology. It was as if, in her mind, the incident had never occurred.

The second episode was at the dinner table on Christmas night when both my grandmothers were present: my father’s mother, and my little Russian babushka who everyone adored. They had both traveled to join us for the holiday to celebrate my older brother’s engagement that day to his longtime girlfriend. Looking back on that night, I remember my grandmother’s agitation and restlessness. She had been sarcastic and antsy all day. By the time we sat for dinner, she could no longer hold in her angst. She began by telling me I shouldn’t eat so much or I’d end up “fat like your mother”. She pretended she couldn’t understand my Babushka, asking if she was ever going to learn to speak “real English”. She then asked my brother’s stunned fiancée if she was sure she wanted to be part of this family. My father asked her several times to apologize, to quiet down, but when my grandmother told my mom that her beautiful Christmas meal “tastes like shit”, my father threw his chair back from the table and lifted his 75-year old mother from her seat and carried her, kicking and screaming, from the table and into her room. My mother cried, my brother apologized on his grandmothers behalf, and my father returned to the table and pretended nothing had happened. The next morning when I woke, my father and grandmother were gone. He had taken her to the airport to return home. She never again was invited to visit, although she did attend my brother’s funeral four years later, at which time she spent the night in a hotel and was not allowed to stay in our home.

My mom told me only recently that my grandmother was bipolar, and that when I was a toddler my grandfather had her “institutionalized”. During her 6-week stay at a mental hospital, she underwent ECT. This was the early 1970’s and my grandfather believed it was her only chance. Sadly, ECT was not an effective treatment for her and she took lithium for the rest of her life, another 25 years. During that time, my mother tells me, my grandmother was unfaithful to my grandfather as a means of punishing him for “forcing” her to do ECT, for shaming and humiliating her. So, she shamed and humiliated him back by publicly carrying on a two-year affair with another man. Her indiscretion was, in her mind, payback for the terrible way he had treated her, forcing her to receive treatment for a disease that in her mind didn’t exist. And my poor grandpa was well aware of her behavior, of her cheating. He was a man who missed his wife and the woman she used to be, and was willing to do anything to make her well because he believed somewhere behind her illness was that woman he still loved. He forgave her the affair because he loved her, and instead blamed her illness for it.

He died before she could truly be well. So did she.

My grandmother’s life was anything but “purty”. She refused to acknowledge her illness, and it consumed most of her years. It stole from her relationships with her son and grandchildren. It left the people in her life with nothing but ugly memories of her. She missed out on blue skies and friendships and the warm embraces of children because she was sick and refused to ask for help. She denied the disease existed, and as a result she denied herself the possibility of a happy life.

Bipolar disorder may run in the family, but the way it’s handled doesn’t. I refuse to turn out like her.

I absolutely refuse.

Curse or convenience?

I think I’ve mentioned that I undergo ECT to battle my bipolar disease.  I may have also mentioned that it has been utterly devastating to my memory.  The year 2011 is, for the most part, lost to me completely, and much of 2012 is a blur.  I keep hearing from Dr. Ted Danson (see my other ECT posts…..) that I will likely eventually regain a good portion of what has been “temporarily” lost, but I still have my doubts.

I’ve come to realize that my short-term memory loss can be a real curse.  I often look at photos on my computer in the hope of “refreshing” my memories, but it only makes me feel like another person took those pictures because there are so many faces and places and events that seem like they must have happened to someone else.  I often find myself repeating certain things to my family, and my kids are always quick to point out, “Mooooommmmm, you already TOLD US THAT!  53 times!!!!”  It’s annoying to them, and aggravating to me, because I honestly don’t remember telling them even once.

Memory loss is incredibly embarrassing, as well.  “Hey, do you remember when our families went canoeing on the river?”  (Nope)    “Hi, nice to see you again.  We met last summer”.  (No, sorry, I’ve never seen you before)    “Do you remember how to get to that street faire we went to a couple of months ago?”  (Absolutely no clue)    “How can you not remember that we share a birthday?  We celebrated two years in a row together!”  (oops?)  “What’s the name of that family that moved in down the street last summer?”  (a new family moved in?).    “Where did you get that dress you wore to your cousin’s wedding?”  (my cousin got married?)

Of course, there is the “up” side to memory loss.  It can be convenient.  If I’m really lucky, I forget things like how sick I was following my last ECT session.  Or when my teenage daughter told me I promised to take her to a particular R-rated movie, I can cite my poor memory and tell her, “There is no way I would ever have agreed to that”.  If I forget to show up to an appointment or forget to sign the permission slip for my child to go to the field trip or forget that there is a field trip, most people are pretty forgiving because severe memory loss has been such a huge part of my life for nearly two years.  Sadly, people are getting used to it as being part of who I am.  Sadly, I am getting used to it as being part of who I am.

Unfortunately, I can’t seem to forget the things that bring me the most emotional pain.  I’d love to forget that my dad died while I watched.  I wish I could forget that my husband has left me, and why.  I would like to not remember all of the terrible behavior I exhibited when I was at my sickest.  I would love to forget some of the horrible things I’ve witnessed.  I pray to forget much of my recent past.  If I’m going to be cursed with memory loss, why can’t I at least get to decide what I remember and what I don’t?

And I could easily make memory loss more of a convenience than it occasionally is.  I could lie about having forgotten this or that.  I could use it as an excuse.  But truthfully, I’m afraid that if I take advantage of my faulty memory, it will come back to bite me in the ass.  Kind of like when my mom would say, “Don’t make that face; it might stick like that”.  I could so easily lie my way out of many situations and blame it on my ECT-induced memory loss.  But with my luck, it would then become the truth.  And I can’t bear losing any more memories, even the bad ones.

So, chaos or curse?  I’m leaning heavily toward curse.  But I have my sights set on the day when I wake up to find an old memory has returned to my scrambled brain.  I look forward to regaining my happy memories, one by one, regardless of how much time it takes.

In the meantime, I’m going to remain optimistic.  For as long as I can remember what “optimistic” means.

 

Comic-al

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I handed a copy of this comic to Ted Danson and George Burns and the GCC as I was on my back being wheeled into a session of ECT. Drs. Danson and Burns cracked up. Maybe they were just being polite? I still giggle when I see it – a testament to my thwarted sense of humor. Is it wrong that I find this hysterical? I especially love the car battery…..

Remember this?

I think I’ve mentioned that ECT screws with my memory. In fact, in my case it has totally destroyed it. Of course, I strongly believe that the benefits far outweigh the inconvenience associated with loss of short-term memory, but that doesn’t make it any less annoying.

Last year, during a visit to my General Practitioner, I had to provide an update of all medications I was currently taking, as the list had changed drastically since starting ECT and seeing her last. She was entering my changes into her laptop and asked,

“Are you still taking Aricept”?

I replied that I had no idea what Aricept was, but I knew for certain I wasn’t taking it. I didn’t remember ever having taken it.

She was nearly hysterical with laughter, and because I automatically assumed she was laughing at me, I was immediately offended. “What the hell?”, I asked her.

“You can’t remember that you were taking Aricept”.

“So what? I don’t remember a lot these days…..”, I snarled.

“Your ECT doctor gave you Aricept to help with your memory. It’s commonly prescribed for Alzheimer’s patients”.

Oh. OK. That’s pretty funny.

The Goddesses of Comfort and Care

When I go to the hospital for ECT, there is the most amazing staff of nurses. The salary and benefits must be excellent, because there appears to be no turnover rate amongst them. Of course, there is the possibility they simply love what they do and stay for that reason alone. I’ve had the same nurses the entire 18 months I’ve been doing ECT. They are the Goddesses of Comfort and Care (GCC).

The GCC look like they should be dressed in floor-length gowns, all aglint with sequins and gemstones. A kind of glow follows them around the recovery room. a halo? Im not eliminating that possibility. They remind me of a smarter version of the game show host’s ever-smiling, ever-lovely assistant. They move seemingly without taking a step; instead, they appear to glide across the cold tile floor of the ECT department without making a noise. They are, every one of them, extremely attractive. Perhaps it’s because they’re always smiling, an attribute I personally find very appealing. But I secretly think its because George Burns and Ted Danson (see my previous post, “Shocking……”) prefer to be in the company of attractive women. (And one attractive boy intern, Opie – see previous post “What NOT to say….”). The GCC can guide an IV needle into a vein seemingly without looking, they always remember that I like two warm blankets, and they make sure my Johnny gown is tied all the way up the back to discreetly hide my floral undies from the other patients’ lines of sight. They speak softly, and they look me in the eye. I never realized the importance of being looked directly in the eye by someone with whom I’m having a conversation until the topic became about my disease. Trust me: you’re no more likely to “catch” my disorder by looking at my cowgirl boots than you are by looking in my eyes when we speak. So extend the courtesy, will you?

Anyway, back to my girls. I have much more interaction with them than I do with George or Ted. They are the ones who give me my memory tests and administer the “depression index” quiz for my “Beck score”, they medicate me and insert the IV needle. They take my blood pressure and help to calm my anxiety. They always remember the names of my kids (a quick route to my heart), and my drug allergies. They hold my hand and wipe my tears on the days I feel particularly scared. On occasion, they even have to clean emesis basin. They protect my modesty and my ego. They re-dress me into my street clothes following the procedure, and hug me when I leave.

They care. They care a lot.

And the entire time, they are smiling.

But sometimes I have to wonder if the reason the GCC are constantly smiling is because the whole time they are secretly thanking God that they are not bipolar.