Dreaded Purple Master

Fixing a Hole

I say again: Hoo-boy, has this been an interesting summer for medical.

When we left me last time, I was freshly released from Crawford W Long Hospital after an emergency cardio-cath procedure to install a stint, in response to a heart attack I had on the way to work.

Tentatively diagnosed as diabetic, I was required to consult with my regular physician to prescribe a glucose meter. (I’m told I must call Blue Cross: Since they are my carrier, I must participate in their free meters program: No human being is reachable at the number they give. I leave a message. Meanwhile, my lovely wife calls my doctor back to ask them to just prescribe one so we can buy it from my pharmacy. Many weeks later, well after the traumatic events described below, the glucose meter my wife ordered arrives on the same day as the one Blue Cross shipped (and never told us they were shipping). Well, I have a spare, I guess.)

My cardiologist instructed me to lose weight: The exact number floated around a bit through the week, but settled on forty pounds (I think). I must also exercise more: A half hour a day walking will do.

Here begins a darker tale. Hide the kids.

Monday, August 5

Three weeks after being released from the hospital, I resumed work. I only worked two days, my regularly scheduled days of Monday and Thursday, before…

Friday, August 9

Hm. A month and a day after my heart attack.

Well, on Friday I’m not entirely sure what happened when. I know I began the day at Dr Lieberman’s office for a PT test to measure the level of coumadin in my blood: It’s a risky therapy and must be closely monitored. It was 3.4, I think, which they pronounced “a little high” and adjusted my dosage downward.

Oreta tells me I’d been complaining of a headache all day: I don’t remember that. It must be true because I called in sick to work because of it. I don’t remember that either.

I remember waking Oreta that night after bedtime and asking her to help me call a doctor, because my headache woke me (!) and it hurt too badly to think straight. I remember that the doctor on call at the office (not my regular doctor) waffled, well, you could go to the hospital if you feel like you should.

The Blue Cross nurse was more definitive: Go. Go directly to the emergency room.

I remember the ride. (Oreta drove.) I remember our arrival at the wrong door. (They moved the emergency room since I was there last!) I remember being processed and admitted.

That is the last thing I remember.

Oreta here.  Daniel has made the mistake of leaving this up on the computer while he is typing it.  :)

The best doctors in the hospital work in ER.  After our arrival at 0300, Dr. Barbarosa listened to our story, read the list of medications Daniel was taking, and insisted that Daniel have a CT scan.  Now.  Immediately.  I followed him there.  CT scans are very science fictional.  It’s a bed with a ring around the top on a vertical axis.  The camera runs around the ring taking x ray pictures.

I’ll probably get some details of the story wrong, but what happened to me is that I had a brain hemorrhage. Doctors’ opinion differed as to exactly what to call it, but Dr Serbanescu, the doctor who eventually took charge of my case, is calling it a stroke, so that’s good enough for me.

The reason the other doctors didn’t wish to call it a stroke (I think) is because it didn’t involve the traditional ingredient of a stroke, a blood clot. In my case, it was a blood leak: blood went where it shouldn’t oughta, putting pressure on certain nerves in the brain, and possibly cutting off normal blood circulation.

The reasons for this are debatable. The official explanation is that I am unusually sensitive to coumadin (aka “rat poison”), the blood thinner prescribed by Dr Lieberman. Coumadin therapy was the reason I’d been to his office earlier that day, to undergo a PT test (procedurally simple, much like a diabetics’ blood glucose test) to see if I had enough or too much of it in my system.

However, Dr Serbanescu was horrified to learn how high my coumadin level was, so there remains a possibility I was overdosed or not closely enough monitored. Since no doctor will ever actually say that he feels another one has made a mistake (tomorrow the situation may be reversed), we may never know for sure.

They say that the worst moments in such a situation, and the greatest risks, occur three days after the initial event. That is when the pressure is greatest, and if neural damage is going to occur, it’ll be then.

The Doctors in their infinite wisdom didn’t tell me this.  Early morning Daniel threw up (it’s a side effect of the medicine they gave him) and kept throwing up.  His face turned cherry red and he was obviously under a lot of strain.  I believe this is when the second bleed happened because he went downhill from there.  It was one of the ICU nurses who told me that the maximum swelling usually occurs three days after the bleed and that after six days the swelling starts to go down.

An indeterminate time later – what is time, anyway?

I was… Well, I have no idea what I was. Oreta won’t tell me. She turns as cold and grim as I’ve ever seen her and says, simply, “You were gone.”

This scares the hell out of me. I can only imagine what it did to her.

I have a vague memory of complaining, loudly, that my chest hurt. I mean, really hurt. Unpleasantly-familiar hurt, if I’d been lucid enough to remember that I’d experienced it once before. That would have been the second heart attack.

The second stroke, on the other side of my brain from the first, would probably have been pretty close to that time also, I guess.

Nope.  The second cardiac incident occurred Thursday night.

(Oreta has given her account of some of this time in my blog, at http://dpm.blogspot.com. I’m not going to reprint it here, because, well,  it’s her story to tell. If my description disagrees with hers, hers is correct, and mine is born of delusion.)

At some point, I attempted to get out of bed, pulling an IV loose in the process. The nurse on duty (I gather) rocketed into the room to put me back together, but I don’t know the details. As Oreta said, I wasn’t there: I was gone. All anyone will tell me is “It’s just as well you don’t remember.” God, what did I do, attack her?

When Oreta arrived, the nurse apologized profusely, taking responsibility, saying in honest distress, “We can’t watch him all the time.” And that’s true. Even in intensive care, each nurse has two patients to monitor, and countless other tasks to perform in the course of her shift. (You may take offense at the feminine pronoun if you wish to, but let’s face it, they were all women.)

Actually it happened at 1400 and it was an IV, a c-line, they call it that they put into his chest near the collar bone. This is an unpleasant procedure and runs the risk of collapsing a lung.  Daniel pulled his C-line loose when he got out of bed. The nurse’s horror was for that and what he could have done and that she was just in there five minutes ago.  “You don’t have any children, do you?” I said.  For a while it looked like I was going to have to spend the night. They had to restrain him and it would not have been good for his blood pressure if he fought the restraints.  They really didn’t want him to do this.  Sometime Tuesday he pushed himself up in bed, and his pulse and blood pressure hit the roof and STAYED THERE.  His nurse was not happy.

Into my chest near the collar bone!?! I pulled out sutures!?! I was restrained? I remember none of this.

So Oreta essentially moved into the hospital. She took as much time away from work as she dared (Her boss was very understanding) and left John to get the kids ready for school – the first day of which was the Monday of this horrible weekend. My son is entering fifth grade, his last year in elementary school: My daughter is starting her first year in high school (pause for senior moment: high school): and I am… gone. I don’t know where I am, but wherever it is, I’m not there.

(The kids weren’t allowed to visit me. As hard as this must have been for them, Oreta thought seeing me in this state would have been harder. I agree.)

John picked up the kids at school and brought them in for five minute visits each evening until he began to recover.  Then I let them stay longer.

The next memory I have is of waking up at 2:00, I’ve no idea what day it was. I was ravenously hungry, thinking I’d missed lunch. I had enough memory of the previous days (well, I remembered them then: I don’t remember ‘em now) to know I was in the hospital, with reason, so I wasn’t startled by that. It’s not like I woke up and didn’t know where the hell I was. I remember asking for food, but then I remember a lot of things that didn’t happen, so I can’t be sure. Where’s lunch? Well, I knew when Oreta got there she’d find me something to eat. She should get off work at four. Five o’clock passed. Six. Seven. (What happened to dinner? Something is very wrong.) Eight!

Oreta finally arrived somewhere before nine, and I said “Thank God you’re here! What’s happened? What’s wrong? I’m starving!”

It took her quite some time to convince me that it was, in fact, nine A.M. Nothing was wrong. I’d awakened at 2 a.m. and thought I was on the other side of the clock because I couldn’t see a window.

I have hazy, disjointed memories, events happening in no particular order, and little to no sense of the days passing.

I remember the arrival of the foley catheter (which must have happened very early on). If you don’t know what that is, it’s what they use to allow you to pee when they can’t let you get up or sit up for days at a time. It involves sticking a tube the size of a Buick muffler in an aperture not meant for incoming traffic, a procedure for which they do not anaesthetize, and that’s all I want to say about it. That is… an extremely vivid memory.

Sarah is astounded that I don’t remember the C-line, but I do remember the foley catheter. I can only say that I wish I didn’t remember it.

(Its later removal, on the other hand, was so painless as to be almost without sensation at all – but I never felt such joy as to see it go. The simple pleasures are the best.)

Back to the Real World, I think

The date Oreta gives me for my return to my senses is Wednesday, August 14. I’m in no position to debate it.

Between 0700 when the ICU nurses kicked me out and 0930 when they let me back in.

I’m noticeably thinner, since I haven’t been eating (and will lose more weight before I leave), I’m as weak as a kitten… and we owe the Red Cross for ten pints of plasma?

Ten pints of “fresh frozen plasma” and it was to bring his coagulant levels back to normal. 

My blood pressure is being kept down around my ankles, because it is the only alternative to the rat poison, so I get dizzy whenever I move.

Nothing looks right. It’s not a distortion I can easily identify: My vision is neither blurry nor doubled, effects strokes often have. It reminded me of the kind of wrongness you see during a solar eclipse. The sun is out, but everything is still dim. Dr Serbanescu must suspect brain damage, and it’s some time before I can see anyone who can diagnose differently.

I can’t read. It looks like a foreign language on the page. Dr Serbanescu tells me he expects I’ll recover. I hope so. This is the worst thing that can happen to an inveterate reader like me.

Well, no, it isn’t. I’ve been experiencing something worse, even though I don’t remember it clearly now.

I could probably watch television, but I don’t want to. It’s too discouraging. I can’t even recognize the “bugs” on the corner of the screen that tell me what channel I’m watching. There’s an awful lot of text on television, and you really notice it when you can’t read it.

Nothing tastes right, either, but Dr S chuckles and says it isn’t just me. The food here really does suck. (He didn’t phrase it that way.) We found out why: All food for the various Emory-affiliated hospitals is prepared at Emory University and transported to other locations by truck. When it’s fresh, at its source, it’s, well, adequate: By the time it gets to Crawford Long, it’s either too hot, too cold, or both – and stale. One day we couldn’t even get into the lunch: The hard plastic cafeteria plate, with the cooling of hot food in transport, had formed a vacuum seal with the covering plate. Even the nurses couldn’t get it open. We had to send for another lunch.

The hospital cafeteria gets its food the same way: Nothing is cooked in-house. The staff doesn’t eat it. They send out to the Peasant or Mick’s take-out next door. I believe I saw a Pizza Hut delivery man once.

Oreta began bringing me contraband food, mostly cold vegetables (bell peppers, cucumbers, cantaloupe, and such). The nurses understood, and while they couldn’t do much about the hospital food, they could bring me milk, juices, and the occasional power-meal (or whatever it’s called) chocolate-flavored meal-substitute nutritional drink. It tasted like watery Yahoo, but it was better than anything the Emory kitchens sent me.

I’m having trouble speaking as well. I think my speech is only slightly slurred, but then I’ve always been prone to mumble. A bigger problem is aphasia, the tendency to lose words. I begin a sentence, then stop cold because the word has fled. I sit there for long, frustrating minutes trying to remember a simple word. It’s right there, I know it’s right there, but it’s out of reach. Oreta has a good suggestion, “Go for the concept”, but I find myself unable to even describe the thing I’m trying to talk about. For days I simply couldn’t say the words “cucumber” or “cantaloupe” unless someone else said them first. Oreta had stashed some vegetables in the patient refrigerator for me to snack on, and I couldn’t ask the nurse to bring them to me because I couldn’t tell her what I wanted. Aargh.

Oddly enough, if I held up the bags of vegetables and asked him which ones were cucumbers he could point to them correctly.

(I don’t even remember you trying this.)

Later on, when I’m more myself, during the second week, Oreta arranges for Nancy to sit with me and keep me company, to give herself a little relief. Thank you so much, Nancy, for myself and for Oreta’s sake.

Therapy

As my condition improved, I began to meet an assortment of therapists, to evaluate me and help me prepare for the Outside World. All of them were very good. All of them, like the nurses, were women. Oreta tells me some of them were cute. Oreta claims not to believe me when I tell her I didn’t notice. Honestly. I mean, I love to look at cute girls, and I’m kind of sorry I “missed” it. It just never occurred to me. Boy, I must really be sick.

They put me through various kinds of paces, physical and mental exercises to identify problem areas, strengthen weakened muscles, stretch my mind. I was already mobile, if shaky, but I’d only gone as far as my own bathroom: They took me to unexplored alien lands (the corridor outside my room) and walked me to the corner and back. It was my first look at “my” nurses’ station. They smiled, happy to see me on my feet and in good spirits. (I didn’t understand the warmth of their reaction, because I didn’t know half of what you know now.)

Another conducted cognition and memory tests: She read me a paragraph (normally I would have been expected to read it myself, but with my vision as it was…) (short at first, then longer), then asked me questions about its content. She told me a word to remember, then asked a series of unrelated questions, then asked me what the word was.

Or she would hold up common objects to see if I could identify them. On one occasion, I couldn’t recognize Oreta’s keys. Neither as Oreta’s, nor even as keys. I was completely baffled. Little pieces of metal on a ring. I know these have some purpose. The little guy in my brain had some more knitting to do: There were still too many loose cables and memory chips lying around.

Everyone – doctors, nurses, therapists – asked the same questions. Do you know your name? Do you know where you are? Do you know what today is? (Thank God none of them asked, “Do you know who I am?” I never could keep ‘em all straight.) It would have been annoying, except that I knew (I didn’t remember it, but I knew) that a very short time ago, I didn’t know the answers to any of these questions.

The Descent Into Hell

Approaching the end of two weeks, I had improved sufficiently that they began to make noises about throwing me out – I mean, discharging me. At about that time, we were approached by a representative from the a rehab clinic (I probably shouldn't name it), which apparently specialized in stroke victims like me, providing additional therapy on an in-patient and out-patient basis until we are fully prepared to resume our lives. It’s common for some patients to transfer there when insurance begins to balk at the cost of a full-service hospital.

It was Oreta’s thought that it was a way for me to remain under some medical supervision, should I suffer another stroke, attack or seizure.

At least, that was the theory. It sounded good, and Dr S didn’t know any better when he recommended it. Blue Cross approved, so with blinding speed (unaccustomed in medical facilities), plans were made to shuttle me over there on Friday afternoon.

I suspected something was wrong when they couldn’t locate a driver to get me there.

I was certain when the driver they found got lost on the way there. Is this a Three Stooges movie?

But nothing prepared me for sheer hell. Nurse Ratchet would have been right at home here, except that her clone was already here, in the person of a gay male night duty nurse with whom Oreta had to argue in order to be allowed to leave my underwear with me.

Apparently, they are accustomed to dealing with stroke victims who are incontinent, bedridden, and unable to easily comprehend or long remember what is said to them, or the tone in which it is said. None of these conditions applied to me.

But the night nurse’s threatening tone as he laid down the law of the land was so brutal that, in my physically and emotionally weakened state, I was terrified of the man. And furious at myself for being so. And furious at the facility for allowing that kind of behavior in their nurses. What the hell kind of place is this?

I quickly learned that it wasn’t, much, a place of healing. It wasn’t a hospital, or rather, it wasn’t what a hospital is now. It was what hospitals used to be forty years ago, before they got better. It was a warehouse for people who can’t afford the real hospital and can’t be sent home, while someone decides what’s to be done about them.

They didn’t ask what my condition was. They didn’t check Crawford Long’s charts (which they could get electronically, being linked through the network). I wasn’t examined until Monday morning. They assumed the defaults (stroke victim: not mobile, probably incontinent, mentally dim), and medicated me accordingly – including more blood thinners, which I’d just spent two expensive weeks being purged of!

What’s that I hear in the audience? Deny the treatment? Refuse the medication? Medical personnel of this type do not allow mere patients to decide how they will be medicated. It’s the extreme case of “The mechanic doesn’t talk to the car.” I’m not a person, I’m a thing to be warehoused and, if I’m lucky, dusted. Oreta had left, there was no one to stop them giving me whatever the hell they wanted, and if I fought it they’d sedate me (or restrain me) and give it to me anyway. (I know: They did exactly that to the next guy they brought into my ward.) (Yes, ward. I shared my area with two other patients. A fourth bed in the far corner was unoccupied, at the moment.)

Holy shit. Remember, I was already horrified. How much trouble was I in?

I uneasily decided that since it took over two weeks for blood thinners to build up to a dangerous level last time, one day wasn’t going to do me any significant harm. And Oreta would be back the next day. If they won’t listen to me, they will by God listen to her.

When Oreta returned, I told her what they’d dosed me with (as best I could, given that they didn’t tell me the name of the medication, beep beep). She read them the riot act and scorched a layer of paint off the wall, and the medications changed. Their attitudes did not. They never apologized: “We give that to all our bedridden patients.” He’s not bedridden! Blood thinners are what caused his stroke in the first place! It’s in the charts! “We don’t read hospital charts. We make our own diagnostic decisions here.” But you haven’t examined him! What do you do, roll dice? Throw darts? Read tea leaves?

It seemed to me, since Oreta couldn’t stand over me 24/7, that my only hope was to be as respectful and cooperative as I could possibly be, try to remember everything questionable they did, and trust Oreta – burden her, sorry, darling – to be the “bad cop” and protect me from any further abuse (not too strong a word) until she could get me OUT!. (I couldn’t be released until my doctor signed me off, and she wouldn’t be in the office until Monday.) I resolved to be quiet and non-demanding, to impress the nurses with my intelligence and positive attitude (however long I can keep it under these conditions), so that they would appreciate the relative ease of dealing with me – as opposed to the other patients, many of whom fit those unpleasant defaults exactly.  I wonder how many were that way when they came here, and how many became so as a result of their treatment here?

Is this a hospital or a prison? You decide: I already have.

Purgatory

They had their own battery of therapists. That’s all that happened all weekend. Nobody really examined me, everybody “evaluated” me – and they don’t talk to each other, so everyone asked the same questions. ("You can brush your teeth, isn't that wonderful!" "You can dress yourself? My, you're coming along well!") Since they were all second-tier weekend therapists, none of them had any say-so about my status or treatment. To be fair, most of them were good and decent people, honestly trying to help – although some of them were unprepared for a patient who needed as little help as I did.

One or two of them even commented that it was a pleasure to work with such a “high-level” patient (meaning one who can use the bathroom by himself and doesn’t fight with the therapist). It was meant as a compliment. However, I resented that my role at the rehab center was to be a vacation for the therapists between really hard cases.

The “recreational therapist”, in particular, was a waste of time. I concede that some stroke patients really do need someone to advise them on alternate ways to indulge in the hobbies their new limitations no longer allow them to do – or alternate hobbies to replace the activities they can no longer do at all. This is necessary. But not for me! I had no limitations that dramatic, except for vision – and none of the therapists understood the real nature of that problem. And, in all seriousness, the recreational therapist spends most of her time teaching… clay sculpture and finger painting. (What, no basket weaving? Perhaps that’s the advanced class.) If she’d tried that on me, I would have laughed in her face.

Which, for all I know, would have gotten me sedated.

That said, one therapist actually stumbled, backwards, onto the key to what kind of help I actually did need.

Quoting from my blog:

The therapists at the rehab clinic were having me read large-print children’s books, and I was struggling through them painfully. I sounded, well, brain-damaged, and I felt hopeless. Reading is my favorite hobby, and if I can’t do it anymore… I was beginning to think maybe I belonged in the basket-weaving classes after all.

And the first clue came from dumb luck. In a desperate attempt to find some age-appropriate reading material (the rehab clinic has a lot of facilities, but no library: that says something about what they think of the intellectual level of their patients), the therapist bought me a newspaper. (It also says something that she had to scrounge for the fifty cents, because the center doesn’t subscribe to one.)

So here I am, with the Atlanta Journal-Constitution, staring blankly at the front page. God help me if I am intellectually stymied by the AJC.

The headlines I could stagger through with difficulty, if at all. I noticed, though, that the text of the stories was easier to manage. Only proper names, especially unfamiliar ones, stumped me completely.

The therapist, bless her, realized we were onto something, and had me turn to an interior page – as it happened, an op-ed page featuring an analysis of the recent primary election, specifically the defeat of Congressional incumbent Cynthia McKinney at the hands of retired judge Denise Majette. It was relatively small print in a relatively narrow space line.

I rolled right through it.

God, I could have kissed her. (The therapist, not Cynthia McKinney.)

It was the happiest thing I’ve read in months, even if it was a complaint about those evil Republicans stealing the election from poor Cynthia, being punished for speaking the truth… Oh, don’t get me started.

But I could read it!

(And Billy McKinney, Cynthia’s father, lost his runoff too, against a complete unknown! Of course, he’s blaming the Jews. Whoopee!)

As icing on the cake, the therapist shared my opinion of the McKinneys.

Redemption

Monday was otherwise useless. Yes, my doctor was there. Yes, she examined me, finally. (I’m spoiled. I think patient examinations should be done in an examination room. Mine was done in the ward, in front of an open window, behind a mostly-drawn curtain, in full hearing of the other patients and nurses.) But they don’t make decisions to discharge patients until all of the therapists have evaluated them, and the staff has had a chance to confer (the staff meeting happens on Tuesdays).

So I met all the therapists, and heard all the same compliments about how well I was doing for someone who’d been through what I had. I walked up the stairs and balanced on one foot. I cooked some oatmeal. I got into and out of an unrailed bathtub without slipping. I explained to the recreational therapist what I do for a hobby (“Have you ever heard of radio theatre…?”) so she could strain her brain trying to come up with a way to do it within my new limitations, whatever she judged them to be. I made eye contact, used plenty of big words and didn’t pee on myself once.

Finally, on Tuesday, at Oreta’s insistence, they sent me to the neural ophthalmology clinic, across the street. They didn’t tell me they were going to do that; someone just showed up with a wheelchair to take me there. (Nobody talks to the car. Beep beep.) After being ignored for a half hour (during which time Oreta was able to catch up with me), I was subjected to the most intensive eye exam I have ever experienced (and my regular eye doctor is also an ophthalmologist).

Again, quoting from my blog:

Well, my eyes are fine. I know this because I just had the most comprehensive neural/ophthalmological exam I’ve ever had. It’s not my eyes: It’s the blood in my brain pressing against nerves.

Everybody has a blind spot: It’s no big deal, the place where your optic nerve joins your retina, producing a gap that (if you noticed it) would be about the relative size of a penny held at arm’s length. Your brain is very clever, though: It extrapolates around the spot to present you with an unbroken field of vision. You don’t even notice your blind spot unless you perform a specially-designed exercise to draw your attention to it.

At the moment, I have a blind spot that covers one third to one half of my field of vision.

Again, because the brain extrapolates so well, as incredible as it sounds, I don’t usually notice it. The ophthalmologist made me see it by the simple expedient of having me focus on a spot on a piece of graph paper and asking me if there appeared to be any gaps in the grid.

Good God Almighty. Most of the right side of it was gone.

And this was the good news! It’s not that I can’t process written language anymore, I just can’t see it. My usable visual field is so narrow that the whole word won’t fit. It’s like trying to read a billboard from three feet away.

Now that I know, I can work around that! And the more I try to read, the better I’ll get at it. And as time goes by, the blind spot will diminish. There’s every reason to hope it will go away completely. I don’t face the prospect of having to learn to read all over again. I just have to practice and wait for my vision to return, which my neurologist and the neuro-ophthalmologists all agree it will.

Escape

Later that day, my doctor, under Oreta’s stern eyes, finally signed the papers to release me (commanding me to return in two weeks for a checkup, something I had no intention of doing), and we hit the ground running (well, rolling: They insisted on a wheelchair for me).

Frankly, if it hadn’t been for the prescriptions that I knew he would need, I might very well have taken him straight to the car from the neuro-ophthalmologist.  I was strongly considering it when the “transport person” arrived to wheel him back to durance vile.  It says something about this place that it induces such paranoia.

I’ve mentioned the joy of being freed from a foley catheter. It was nothing compared to this. No P.O.W. was ever happier. Home. I get to go home.

They want me back for out-patient therapy. They want to hit me with every flavor of therapy they have, whether I need it or not, the better to pad the bill they send to Blue Cross. I will go back when they send the Dekalb County Sheriff, armed, to drag me back. And even then I might shoot it out with him.

I spent the evening reclining on my bed, with both kids spread out around me doing their homework. Grinning like a fool.

Status Report

My vision is still somewhat impaired, although I can read most things now. I still wouldn’t trust me behind the wheel, but it’s a matter of time.

I’m walking Naaman to school most mornings. It wears me out, but it’s the half-hour’s exercise Dr Lieberman wanted. I even attended the PTA open house at five-story Grady High (sub-basement to 3rd floor), making the same walk Sarah makes every day, to get to her classes and meet her teachers. I still tire easily, but I'm getting stronger every day.

The blood on the right side of my brain – I mean, the blood that shouldn’t be there – is completely gone. The area on the left is much smaller, and will be gone soon. I still have a low-level headache most of the time, but nothing Tylenol won’t handle. There may be some scar tissue on my brain, but I won’t know for another few months what effect it will have, if any.

Dr Serbanescu has judged that I’m ready to hear him say that I might not recover fully, but just mostly. It’s possible reading won’t be as easy for me as it was before. It’s also possible it will. As noted, the brain is occasionally quite clever and resilient.

As of 9/18, I am 25 pounds down from my weight the day I had the stroke, 34 pounds down from my first heart attack in July (at which time my cardiologist told me to lose forty, so I’m six pounds from that target – which was supposed to take a year to reach). And still dropping. This isn’t quite how I would have wanted to do it…

None of my clothes fit. I’m wearing t-shirts I haven’t worn in years. Last week I had to retire a pair of elastic-waist exercise shorts because, as I was working in the kitchen, they fell off. I no longer have enough waist to hold them up.

This is because I now portion out both his and John’s food. 

(I think losing twenty pounds over two weeks in the hospital may have had something to do with it, not that I don’t appreciate everything you do for me.)

Intellectually, I’m pretty much back. I have to focus a little more, concentrate a little harder, to retain really new things, and I’m even more soft-spoken than before (if that’s possible). I can get lost. (That never used to happen to me.) I still have the occasional bout of aphasia – but no more so than anyone else in this house. (When I was explaining aphasia to Sarah, she joked, “Oh that happens to me all the time. You’ll get used to it.”)

Emotionally… Well, back to the blog:

There does seem to be one relatively trivial exception. I’m a bit more emotional than I was.

I should elaborate: When I say I'm "a bit more emotional", I don't mean depression. Overall, in fact, I'm feeling quite "up" and optimistic. The doctors keep congratulating me for my positive outlook. (It doesn't seem that remarkable to me: Of course I am going to recover. I'm getting better every day: I can perceive it myself. I'm a very lucky man. But, really, what are my alternatives? Either I'll get better, or I'll stay where I was at my worst: I won't know who or where I am, and I'll have to have the jokes in "Garfield" explained to me every day. Who wants to live like that? I want my life back. I'm going to have it. … Within a couple of months I'll be able to read effortlessly, and I'll be strong enough to walk around the block, and then I'll be wholly me again.)

It's more that whatever I happen to be feeling, I'm feeling closer to the surface than previously. For most of my life I've been a reserved person, and in a lot of ways I still am, but every now and then something will hit me that I just can't conceal. It's not unpleasant, just different. I'm not going berserk; I'm just more easily affected. Does that make sense?

Which is why, although I am not the kind of person who cries, I wept with appreciation for the kindnesses you've shown me over the past few weeks, and for the concern you've expressed for my overworked wife, who's been keeping you informed, whom I've put through so much and for whom there is no adequate thank you. (She'll see this, though: Maybe that's a start.)

And…

I don't know what it's like to sit by and care for a spouse who doesn’t know me: She, I'm sorry to say, does, now. Those of you who complemented her for her strength, yes, you're absolutely right, she's the best advocate I could ever have. And you don't know the half of it. I thought I did, but now I'm in unrestrained awe of her.

I don't think she'll mind if I tell this story on her, she's told it herself. Years ago, she was a retail manager at a bookstore in downtown Atlanta. She was, and is, a demanding boss, a fact that probably doesn't surprise you. Nor would it surprise you that she works herself as hard or harder than her employees.

She is also a small woman, at five-food-four and mumbledy-mumble pounds. [At this time, she was even smaller, at only *ahem* pounds.] One of her employees, feeling overworked by her, described her as "an itty-bitty bulldozer."

It wasn't meant to be a compliment. I don't know if she knew Oreta heard it. But shortly after, Oreta bought a matchbox-sized toy bulldozer and put it on the corner of her own desk.

It's still on her desk today.

Thank God this itty-bitty bulldozer is on my side.

Of course I'm going to recover. I mustn't disappoint her.

Damnit. Now I'm making myself cry.

Nearly the final word

As I said, if you’re looking for a logical chronicle, check Oreta’s comments in my blog. Incomplete it may be, possibly because there were some things Oreta didn’t want to tell a world full of strangers, but it’s far more accurate than anything you’ll get from me.

You know in television shows and movies, when a character experiences a coma or a temporary insanity or something, and they finally wake up, tired but fully themselves again, and they have a tearful reunion with their family at bedside and reassure each other that everything’s all right now?

It don’t happen like that. You don’t come back all at once. Sometimes you don’t come all the way back at all.

I had my tearful “I’m back” moment alone at Crawford Long. I have no idea what day or what time it was. Probably another sleepless 2 a.m. I had plenty of those. I was aware enough to know I’d been away (and not remember any of it), alert enough to think that my personality was essentially intact, but still missing some crucial facilities. Too many holes in my memory, too much aphasia. It was difficult to express a thought. I could have them, I just couldn’t get them out the way I wanted.

(This is hopelessly schmaltzy, the kind of thing that would shatter your suspension of disbelief if you saw it on ER. No writer would have the nerve to try anything this cheaply sentimental – unless he were forced to, because it was true.)

So I thought of a song that had meaning for me, a song that had always moved me and been a part of me from the first time I heard it, and I started singing it very quietly to myself. I don’t think anybody heard: If the nurses did, they kept it to themselves.

The song was “Rainbow Connection.”

(Didn’t I tell you? Didn’t I tell you how broadly manipulative this was going to sound? Damned truth.)

I got all the way through it. I didn’t lose a single word. And then I cried.

At that moment, for the first time, I was sure: I’m me. I’m still me.

 “Life’s like a movie, write your own ending…”

Okay, let’s see.

I’m going to recover fully. The weight I’ve lost is going to stay off. I’m going to be healthier than I’ve ever been.

I’m going to live a long, happy life. I’m going to watch my children grow up and have families of their own. I’m going to let my friends and family know how much I appreciate them.

And, although I owe my wife a debt I can never repay, I’m going to continue to try… and to remind her, as often as she wants to hear it, that I love her more than I can say.

Okay, there’s the script. Places… and… action…


Daniel Taylor: Saturday, September 28, 2002