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Posts Tagged ‘coma’

Yesterday was my second birthday! As in, July 23rd is my first birthday, upon which my mother gave birth to me and February 29th (or March 1st the other 3 years) is my second birthday, the one upon which I woke up from the Big Nap. Yay me!

A year ago today, I was coming to terms with the fact that I’d been gone for 18 days, shit in a bag taped to my belly, had a tube draining yuck from my abdomen and another draing more yuck from my left lung, couldn’t take a deep breath, couldn’t eat, couldn’t move, felt like I was suffocating without a fan blowing in my face all the time, and was in the room reserved for the sickest person in the hospital.

Today, I am embroiled in my school’s decision to require uniforms next year, am really, really sick of the snow, and have just finalized plans to go to Israel in June. That’s a heck of a lot better, isn’t it? Really puts thing in perspective.

This trip I’m going on is just me. Well, me and a bunch of other women. No J. The other two times I’ve gone, it has been with J and he’s been in charge of the whole trip, which made for a pretty big safety net. This time, it is a trip for just women and run by an organization not run by the hubby. But it was a great price and it sounds like we’ll do some really cool stuff and did I mention it’s in Israel? I love Israel. It goes beyond the Jew thing, which is a pretty big thing. It’s the history. You are surrounded by living, breathing history every minute.

Here’s a photo from our last trip. This boy is hanging out on a beach in Tiberius. I know, boy on beach: big deal. But this beach is on Lake Kinneret, otherwise known as the Sea of Galilee (it’s very Middle East of them, to name this small (by Canadian standards) body of water a “sea.” Half the rocks on this beach are bits of pottery, thousands of years old, washed down from the ruins across the road. See, everything is history.

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Memory

I’m in the hospital. The air is dry and I’m thirsty. On the small, rolling table beside my bed is a plastic cup filled with ice water. The table is within arm’s reach, but I cannot reach it. My arms are not strong enough to lift that far up and out. I cannot pull the table closer. I cannot lift a cup of water. It might as well be a mile away.

I tell myself that the ICU nurses have better things to do than give me water, and close my eyes and try to sleep. It doesn’t work. My throat is so dry it hurts to swallow. I decide to buzz the nurse. I have a call button clipped to the bed.

But when I look for it, I see that it has slid down beside me, and is now resting at my right bicep. When I bend my right arm at the elbow, the clip is too low and too close, right up against my arm. I try to reach across my body with my left arm, but I am too weak to stretch it far enough. My left hand lies on my right arm, too heavy to go further, the bell tantalizing inches away. Right up against me, it might as well be a mile away with the water.

Okay, no nurse. I turn my attention back to the water. I can press the buttons on the side of the bed to raise myself up more. I do so, and it brings me closer to the table. I lift my left arm at the elbow and hook my hand onto the underside of the table, bringing it close enough for me to actually reach the cup.

That’s when I realize it doesn’t matter how close the cup is. It is full of ice water, far too heavy for me to pick up myself. I contemplate trying it anyway, but visions of a lap full of ice water and no way to get a nurse stop me from making the attempt.

I still cannot get a drink. Frustrated beyond measure, I try to call out to a nurse. I hear voices outside my room. Can I make them hear me? My voice is weak from weeks of intubation, pneumonia and a collapsed lung. I call out, “Hello? Is anyone there?” They don’t hear. The voices recede.

I look at the clock. There is at least an hour before J is supposed to visit. I love his visits not only for the familiar company, but because I have a dedicated pair of functioning hands. He has nothing else to do when he is with me, and has endless patience with feeding me, giving me water, fixing my pillow.

I can lift my head, but can’t lift my hands up high enough to adjust a pillow. I can’t hold a book or magazine. I can’t scratch my own nose. I can’t feed myself. I can’t sit up on my own or roll over. I can’t get my own drink.

A machine behind my head starts to beep. I have two central lines – IVs going into large veins in my chest – and several bags of medications dripping through them. If a bag empties or something goes wrong, such as an air bubble in the line, the machine beeps. The frequency is normally annoying, but this time I am delighted. This means a nurse has to come to see what is wrong.

A few minutes pass, but finally a nurse bustles in to check on the alarm. She greets me and announces that she needs to change an IV bag. I ask if she can give me a drink and fix my call button, and she says she will after she finishes with the IV. I’m almost there.

She finishes with the bag and casually moves the table aside, picking up the cup and holding it so I can drink from the straw. In my eagerness, I suck up water too fast, and start to choke. As I splutter, she moves to the other side of the bed and easily unclips and re-clips the call button, asking me to check if it is now in reach. It is. My lifeline to the rest of the world is back.

She gives me one more drink before she leaves, and I envy her ability to pick up a cup full of water with such ease. I watch her walk out of the room and wonder if she is aware of how lucky she is, to be able to just walk where she wants. I swear that if I regain that ability I will never, ever, take it for granted.

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One Year

Yesterday, I was doing some work from home and  at one point called and my boss (the principal of the school). I asked her a question she couldn’t answer and told me she’d get the right person and have them call me right back. What’s your home phone number? she asked me. Here’s what I said, “Two, two, six …. um …. two, two, six …. I don’t remember my phone number.”

Six and a half years I’ve lived in this house – oh wait! We kept the number from the last place, so make that 7.5 years with the same number and I was lost. I kept wanting to use the last 4 digits from the number at the cottage and could not come up with any others. Fortunately, the person we needed wandered into the office and saved me further humiliation in front of my boss, who I do try to convince I am intelligent and with it.

I do forget a lot of stupid things – couldn’t remember whether I was 42 or 43 years old a couple of months ago, to my kids’ wild amusement. (It’s 42.) Words get lost more frequently than I remember happening before The Big Nap. And I’m running out of time on using my favourite excuse – ‘coma brain.’ People laugh when I say it, but I’m not totally kidding. I spent weeks stewing in some pretty wicked drugs and was warned that the effects could take some time to wear off. Someone, I don’t remember who, said a year. So that’s how long I decided to give it. One year, and that’s it with the coma brain.

That year is almost over. One year ago tonight was a Sunday night. My stomach was hurting and I was pretty sure I was in for a bad night. I have irritable bowel syndrome that results in random nights of cramps and pain, ending in raging diarrhea. It had been happening more frequently. Still, I had a ‘Girl’s Night Out’ scheduled with friends, and I was determined to have a good time. We do pot luck and the food was great, thankfully, as it was to be the last food to pass through my lips for 19 days.

After I got home, the pain hit with the suddenness of a shot, a stab in the belly that dropped me to the floor. My standard method of dealing with belly pain is a hot bath, and so I dragged myself up and into the tub, into water as hot as possible. It didn’t help. For the first time ever, I could not get on top of the pain. I’ve had two children without any pain meds at all (and one where they only half worked) and I can clearly remember that pain. I have a physical memory of where and how it hurt. This pain, however, except that I remember thinking that it was the most severe I’d ever experienced, I can remember nothing else about.

Some time in the middle of the night, still in the tub, I asked J to call 911. He called a friend to come look after the kids and did just that. The ambulance attendants were horrible, cruel, heartless human beings, but I don’t feel like going into more detail than that because it still upsets me, one year later. At least they took me to the hospital, where I begged the nurse in triage to knock me out. I don’t remember this, but it is on my chart, “Patient making inappropriate comments. (“Knock me out.”) Of course, in retrospect, that comment was really the only reasonable response to the pain of one’s colon tearing open.

They told me I was constipated and forced me to try enemas, which were utterly ineffective except, one imagines, at squirting soapy water and fecal matter though the growing hole and into my abdominal cavity. Fainting after a couple tries put an end to that and sometime in the wee hours of the morning, a CT scan revealed the true problem. My memories of these hours are fuzzy. At one point, J left to get our kids ready for school and my mother took over. I remember moaning repeatedly, slowly and rhythmically, “It hurts, it hurts, it hurts” and being aware that what I was doing must be hard on my mother, because I know that as a mother, watching your child in pain is just the worst thing, but still being unable to stop.

It was all pain, just pain. The surgeon showed up and told us I had a rupture and he would have to operate, and that there was the possibility of death but he had no choice. I didn’t care. All I cared about was that I would soon be unconscious. There was no fear at all.

I listened to a radio program recently about last words, famous and otherwise. If I hadn’t survived that surgery, my last words would have been, “It’s not working! I’m still awake.” The mask delivering the drugs couldn’t fit properly around the tube up my nose and it took longer to sedate me than normal, although it must have only been a moment or two. And then I was gone, for 18 days.

Tomorrow morning, I am going to wake up, run some errands, go into work, try and find a gift for Asher’s birthday on Saturday. The laundry is piling up. I have no idea what to feed everyone for dinner. We are in the depths of planning Maya’s bat mitzvah. I am scarred, deconditioned and forget things like my own phone number. But I am alive.

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Six Months

I just realized that today marks six months since I woke up from the coma. Huh.

I still get to the top of a flight of stairs and am impressed with myself. I wonder when that will get old?

I’ve been finding lately that I’ve been getting these sudden flashbacks (for lack of a better word) to when I was in the hospital, in the ICU particularly. I wake up and remember waking up in the hospital at night and being unable to reach the bell for the nurse, then lying there helpless and desperately thirsty, with a cup of water right there, only I haven’t the strength to pick it up. And waiting and waiting for a nurse to come in. Or I’ll get in the shower and remember the first time I showered in the ICU, how I was unable to reach my own head to shampoo, and how exhausted I was afterward. Or I’ll be cutting my toenails and get this memory of how I would snag the bottom of my pyjama pants with a hand while I sat up in bed, and pull my leg up towards my body to stretch my muscles, determined to have enough flexibility to cut my own toenails by the time they needed cutting (I succeeded  – thank goodness toenails grow slowly).

It’s like I can’t shake the memories of my own helplessness. It’s the control freak’s worst nightmare, really.

Lately, I’ve been having lots of people tell me how good I look, how healthy.  “So, you’re all better now, right?” they ask. Nope, I tell them, but I’m getting there. There are a surprising number of people who seem oddly vested in me being ‘all better,’ and respond to this by saying, “But you’re pretty much all better, right?” 

Truth is, I still wear out easily, although I am not resting as much as I was. I can now open jar tops that the children can not. I have a hernia and my colostomy is acting up, and even if I cannot have the colostomy reversed, I’ll need surgery to fix it and the hernia. All is not well and I have many ups and downs. I wonder why so many people keep saying so forcefully, “But you’re fine now, right?” Maybe that’s how a happy ending is supposed to go. Girl wakes up from coma and then her health problems kinda drag on isn’t nearly as inspiring as Girl wakes up from coma and 6 months later is back to her old self (which, frankly, wasn’t that great either, but we won’t go there now).  

The worst thing what we have taken to calling “coma brain.” I have forgotten stuff and continue to forget stuff. The kids will say, “Remember when we went to S’s house for dinner and Boo didn’t want to eat, etc..” and I’ll have no memory of it. I’ve taken to telling Boo, “I don’t remember that, although I’m sure it happened,” because she sometimes takes my forgetting as a denial that it happened.

I had trouble adding 2.5 + 2 + 1.5 this morning. Lots of trouble. It took me three tries. Mostly I have the sense of humour to blow something like this off, although obviously it can be very frustrating. I’m assuming it’ll improve with time, that it is the lingering effects of all the sedatives they poured into my body and it will fade. I try not to think of the brain cells that may have permanently gotten fried.

Mostly, I’m grateful that it’s only things like 2.5 + 2 + 1.5 that I have trouble with, and that I seem to still remember all the important stuff. And that I can still walk the dog and take the kids to get school supplies. I’m tremendously grateful that my children don’t seem any worse for wear from their ordeal. Boo will still cheerfully tell me about things that happened while I was in the coma. Asher still claims that his last birthday was his best one, “You know, except for the part where you were in the coma, Mom. Because even my teacher gave me a cool present and she never gives anyone presents.” (I said to him, “Wow, imagine what sort of cool gifts you could have gotten if I’d died!” He said, “Yeah! Oh wait, it probably wouldn’t have been worth it.”) Maya has matured tremendously and her anxiety has leveled off somewhat, which I suspect has something to do with facing one of her worst fears and getting through it.

And those stairs. I still can’t get over those stairs.

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Wrote this yesterday, didn’t get around to posting it until today. What can you do …

You know what I just realized? Today is my 2-month anniversary of waking up from the coma. That’s it – just two short months. I woke up on February 29th, which is kind of cool. Also, I woke up on day 18 of my coma. Eighteen is a very significant number in Judaism. The letters all have number values, and the word ‘chai,’ which means ‘life,’ has the number value of 18. So coming to life again on the 18th day is also pretty cool.

It is very, very hard to imagine that it has only been two months.

I remember how helpless I felt. The rehab nurses would come in every day to work on my muscles and would try to get me to move my legs – just lift the knee, lift the ankle – and my traitorous legs refused to move.

My hands were in claws, curled up. The times I was awake and no one was in fussing with something medical, I would go over the physio exercises I had been given for my hands and arms, over and over again. I wanted to be able to write again, to feed myself.

I remember the first time I fed myself all alone. The nurse poured my box of cereal into a bowl and put a cloth on my chest to serve as a bib. I dragged the bowl onto my chest and, ham-fisted, spooned the cereal in. A fair amount only made it onto the bib. I still got tired of eating it before it was finished. I hadn’t the energy or strength to put the bowl back on the table, though, and had to wait for the nurse, bowl on my chest.

When I got a little stronger, I would insist on eating dinner myself, slowly cutting off a small peice of meat and manovering it to my mouth. J and my SIL admitted later that it drove them both crazy to watch how slow and awkward I was, that they wanted to just grab the cutlery and feed me.

I remember that I always felt as thought I could not breathe properly, and that was partly because I couldn’t. For at least the first week, they’d put me back on oxygen for nights, and randomly throughout the day when my oxygen fell low. They tested me constantly, checking my oxygen level, blood sugar level, blood pressure. Four times a day, they stuck a needle in my fingers for the blood sugar. Three times a day, they stuck a needle in my belly to give me heprin ( blood thinner to prevent clots). Those burned like a match being held to my skin and the bruising lasted so long the last of them has only just faded.

I insisted on having a fan blowing at me all the time, because then I felt like I could breathe. My family quickly learned to stay out of its path. After a while, it didn’t have to blow directly at me, and then I graduated to not needing it at all. I still can’t breathe properly, though. I still have pleurisy, which means the lining of my lungs is inflamed. I cannot take a deep breath, but I can take a deeper one than I could a week ago. Hiccups feel exactly like a hard punch in the chest, so when I have the misfortune to get them, I sound like this: “Hic! OW! Hic! OW!”

The first time the nurses tried to get me to sit, they pulled me up into sitting position on the side of my bed, three of them surrounding me. I put my fists on the bed to steady myself and they let go. And, just like a small baby, I began to topple over even as I tried to hold myself up.

So they sat me in a chair instead. They took a harness, the kind one would use on a small whale and, rolling me to one side, they put in on the bed. Rolling me to the other side, they had it completely under me. The hooked the loops on each corner up to a machine hanging from the ceiling and lifted me off the bed, swung me over to the chair and lowered me. The first time I sat in the chair I stayed half an hour before I was exhausted, and was lifted back.

As soon as I got comfortable in the chair, the nurses insisted I get there myself. They were always upping the ante. They placed a walker in front of me and hauled me to my feet. As I stood, feeling excruciating pain in my calves and feet, I looked down. My feet were slightly curled under and looked exactly like my grandmother’s feet had and in that moment, I believed I would never again walk normally.

Once I got used to the two-step shuffle it took to get from bed to chair, the nurses handed me the walker, pointed to the hall and said, “Go.” I made it 25 steps the first time. They counted. I was as delighted as a small child and celebrated by buzzing around the ICU in my wheelchair, with the nurses cheering.

I made it 50 steps the next day.

Today, I walked the regular loop with Jasper at the dog park. I walked for half an hour, which means that loop took me about twice as long as it used to, but still, I made it through the whole loop. And that was after getting a few groceries and before picking up the kids and taking Asher to get a new fiddle.

Look at me – you’ll see no hint of what I’ve gone through. It’s all written on my body underneath my clothes, the deep red scars on my belly, my torso, under my left arm. They are my constant reminder of much I’ve gone through to get back here. That, and the looks I sometimes see on the faces of my parents and J. Two months clearly is not as long for them as it is for me.

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Miracle

Miracle: an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause; such an effect or event manifesting or considered as a work of God.

That is so not me.

I’m starting to get out and about more. The first day I went to pick up the kids from school Maya, who was home ‘sick’ was mortified. “But, everyone will want to talk to you!” This is her idea of hell – being the center of attention. When I was first sick, basically no one bothered to take the kids to school for the first week, and when it was time to return, Maya got two good friends to form what they called the ‘hug patrol.’ The friends’ job was to watch for approaching teachers who may want to show her some sympathy and distract them at all costs.

The truth is, I don’t love being the center of attention either, but I was looking forward to seeing all the people I hadn’t seen in a while and I accepted that people would be pleased to see me up and about. I got enough of that reaction from hospital visitors to understand that.

Yesterday, I went a step further and went into the Jewish community center where J works. I couldn’t go two steps without someone new coming up to marvel at my continued existance. I understand that this is going to keep happening for a while and even appreciate it. We live in a fairly small and, we found out, incredibly supportive community and that means lots and lots of people who worried about me and are delighted to see me back in my old routine.

I am very gracious, I swear, but at times it is difficult to squash down my real self, the cynical and bitingly-sarcastic self who threatens to rise up when people call me a walking miracle. That’s the phrase that keeps popping up: walking miracle. I have a really hard time with this, I have to admit. I didn’t do anything miraculous. If my car had slid off the road into the woods and I’d manage to survive, hanging from my seat belt for two weeks until rescuers found me, that would be a mirace. All I did was not die. I didn’t even have to work at it personally. The doctors just stuck me on every kind of life support imaginable and my body was strong enough to heal rather than succumb. It’s a very good thing, but not a very miraculous thing.

I aso don’t think I am particularly strong or tough. I did work hard at getting better once I was conscious but really, who wouldn’t? And it wasn’t like I had a choice. The fact that I am now walking around when one and half months ago I I woke up without the use of my legs is great. It is amazing even, the way the human body can heal. But it isn’t a miracle. No one ever said I couldn’t or wouldn’t walk. It was always inevitable. The only issue was how long it would take.

I don’t say any of this to the people who come up to me with eyes shining in amazement at seeing me, but it is becoming more of an effort to keep up my gracious and sunny response to all this, more of an act. But keep it up I will, as I have an image to maintain: walking miracle.

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More coma yammering

Now along with the sore throat, I have an achy chest and cough. Blech.

In hospital, I was completely paranoid about getting ill. I didn’t want anything to slow down my escape. If someone emailed and said something like, “I’m pretty much over my cold now and thought I’d pop by for a visit,” I’d bluntly reply that I’d love to see them, once they were completely over that cold. It worked, but now I’m thinking I held off those viruses by sheer force of will and once I got home and let my guard down, they pounced.

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I’ve had a lot of people ask me what it is like to wake up from a coma and if I remember anything from that time. The answer is pretty boring, I’m afraid. I remember nothing. I had a few weird, menacing dreams, which doesn’t much account for 18 days of being out of it. The reason for this is that they gave me some drug that caused me to forget – the same one they give you when they yank a tooth.

A small part of me is a bit irritated by that, since I too am curious about what was going on in my head during that time. Did I hear my friends and family telling me to love me and to hang on? A bigger part is relieved, because there were several times when I did rouse myself and all I did was try to rip the tubes attached to me out, deeply aggitated. They had to sedate me. Near the time I woke up for good, I did have a few smaller wakings and attempted to communicate with J, before giving up in apparent frustration and falling back asleep. So it doesn’t sound as if the whole experience was too pleasant, and I’m happy to be relieved of the burden of any such memories.

Th effects lingered, though, and much of my first couple of days awake is also gone, although I do remember bits and pieces. One thing I don’t really remember but is damn funny is that at one point a nurse came into the room and said something about end my condition. J responded. I then got angry at him and told him not to answer for me and he doesn’t know more about my illness that I do. Of course, he did. At that point he hadn’t even told me I’d been in a coma. He just walked over and pointed to the bank of blinking machines behind me and said, “I just need to press one of these buttons and I’ll send you right back where you came from.”

It is weird that other people know more about me than I do. Nurses were always coming into my room so emotional to see me sitting up and talking and I had no idea who they were. Once, after about two weeks, when I thought I knew all about what had happened to me, a nurse came in and started gushing about how happy she was that my eyelashes hadn’t fallen out, because that was some wicked eye infection I’d had. Huh? It is very disconcerting to hear something like that from a total stranger. J later comfirmed that in the first week my eyes had gotten infected and crusty. He’s never mentioned it because he forgot it, admid all the more significant things that had happened.

And just a couple of days ago, when I was showing J my now healed and no longer bandaged incision scar, I pointed to another scar about the size of a dime, round and deep, about an inch from the incision and said, “I have no idea where this thing came from.” He said, “Oh that. It was from a tube they put in to drain an abcess under your incision. There’s one on the other side too.” So I looked closely and sure enough, lower down between my scar and colostomy, there is another round scar I’d missed before.

So I’d have to say that my experience of being in a coma is one of having my intimate knowledge of my own body taken away from me. It is now a map of trauma – with many other scars from other tubes – that I had to learn about from others.

And since they lived through it and I slept through it, it is really more their experience than mine. In fact, I’d say another experience of being in a coma is waking up to find one’s friends and family all kind of shell-shocked. Visitor after visitor would walk in an just marvel that I was talking to them. I’ve had friends burst into tears just hearing my voice on the phone. That’s all just completely weird to me.

So I’d have to say that while recovering from being in a coma sucks, it’s less traumatic to be the one in the coma than the ones watching a loved one in the coma. And I’d highly recommend avoiding both experiences.

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