back to "normal…"

This week, it was Beatrix’ turn to be under the weather. Surgery Monday to begin the reconstruction process for her breast went off without a hitch. Well, there were hitches: she had to deal with the pain and stiffness. No hitches for me.

But suddenly, I became the driver and caregiver, and Beatrix became the patient! The ole reversal was weird. She required very little real “care,” just comfort and tenderness. She was sore and a bit groggy. Over the next few days, she came quickly to a near-normal state. The body-binder came off Thursday, and with great relief, she was able to have her first shower since the previous Monday morning.

What has been interesting for me is the transition from the one state (recovering stroke victim) to another (caregiver and driver) and then reaching some kind of balance between the two states. For a day or two I forgot to monitor my blood pressure. I found myself rushing, or getting annoyed with some aspect of my computer, and then remembering that I mustn’t shoot my blood pressure up.

I have slowly recovered the healthy practices of the past months, and am settling into monitoring and behaving, even as Beatrix slowly moves back into some kind of normal life. We’ve been for a couple of short walks together, as she monitors her pain level without pain medication. And I wait for the time when I can take a longer walk, to stretch my legs and test my heart rate.

All quite boring, really, but the life of recovery often is, I suppose. Unless you ignore the limitations. Mistake!

An adventure!

A friend of ours is in a dancing group in Edmonton…a burlesque dancing group! I’d never been to a burlesque show before, so we decided to spend the night in Edmonton and take in this unique form of entertainment.

For those of you who think burlesque is synonymous with “stripping,” let me set you straight. The Merriam-Webster dictionary describes burlesque as a “dramatic work that seeks to ridicule by means of grotesque exaggeration or comic imitation…theatrical entertainment of a broadly humorous often earthy character consisting of short turns, comic skits, and sometimes striptease acts.”

The acts are usually quite funny, involve fantastic costumes, and, at the end, bared breasts with spinning tassels. All in all, a great hoot. There are four such groups in Edmonton, and each is a kind of feminist collective. They work for free, and any money they take in goes to the group for costumes, which they make themselves. The members range in age from 20 to 60; there are psychologists, mechanics, and bank clerks who are members.

What does any of this have to do with recovering from a stroke? Let me tell you… it was an adventure. After a morning of whipping Beatrix from home to Dr’s office, to Devon for an ultrasound, (a whole ‘nother story, some other time) to home again for a funeral, and then to Edmonton, it was a reach. We stayed at a lovely B&B, ate on an outdoor patio between rainstorms, and got to the event early enough to have a long conversation with the bar owner – “Brittany” – about the perils of business life in Edmonton.  It was way outside my comfort zone, and a chance to see another side of life for people who seek self-expression and joy! The show finally got underway at about 10:30 PM – already past my bedtime! – and ended around 1 AM. The dances were funny, beautiful, sexy and, above all, joyous. These women were proud of their bodies, even though none of them were perfect 10’s; they enjoyed ‘displaying’ themselves to an appreciative audience. They sat among us, and we were able to visit with them along the way. For each of them, there was a sense of purpose in their dancing, a sense of doing something valuable to themselves and their audience. Above all else, it was fun! One dance was unbelievably beautiful, complete with glittery golden wings!

For me, the ‘recovery’ part related to the sense of joy I saw in each woman’s performance, and the sense that this was, in a way, part of what they were called to do, a moment in their lives to which they had to respond. There was vocation there; I saw the self-expression as a revelation by each of the women of what they had been given in life, and they shared it. I would go again in a heartbeat.

In bed by 1:15 AM, exhausted and happy, we slept well, ate a wonderful breakfast, and then returned to our real world. We have talked together a lot about the experience, and what it meant to us, and to the performers. Each of them was a lovely young…or not so young…woman, who was saying “this is me; I am beautiful; I want to share this beauty with you. Enjoy!” What could be healthier or richer than that?

Teaching the brain old/new tasks

Recovery…I’m reading a book recommended by eldest daughter, one of my wonderful ‘recovery coaches.’ It is Left Neglected by Lisa Genova. The story is of a high-powered Boston Human Resources executive, living a fast and full life with a family of three children, a great husband, and a cottage in the Vermont hills where they ski all winter.

Then one day Sarah is involved in a serious car accident. She is quite mangled, and most importantly, her brain is injured. “Left” ceases to exist for her brain. Her hand, arm, that side of the body, and of her visual world – gone, neglected by the brain, which no longer includes those things in its banks. Thus “Left Neglected.”

The story is of Sarah’s coping, first by denial and rage, then slowly by effort, with support she doesn’t want or appreciate, with many harrowing setbacks. She sometimes drools from the left side of her mouth. Can’t feel it, it isn’t there. Drags her left leg. If she lifts it, she has no idea where it is and therefore where it will come down, She paints a picture; the left side of the scene trails off into no colour. It isn’t seen. Get the picture? Brain damaged is being faced with the monumental task of re-training this brain to know “left,” to recognize and account for “left.”

My situation bears only a slight resemblance to this woman’s plight. I have been  so lucky! I have had only to retrain my brain to read text and learn to relax. She has to teach it the whole left world!

BU I find myself identifying with her so strongly! The book isn’t “pleasant’ to read for me. It’s hard work with terror around every corner as well as tears of joy when she is taught to snowboard. I pick up a book and drop one letter from a word, and the whole page falls apart. I have a simple job: teach my brain to read again. Teach my heart to slow down, my blood pressure to slowly drop. My job, like Sarah’s, is to recover. She struggles to recognize realistic goals…me, too, on a much smaller scale.

And I walk with her, agonize when she gets stuck in the fridge, or can’t close the public washroom cubicle door. And she is a perfectionist, who had succeeded in being just about perfect in her job, though not in her ‘life.’

Enough about Sarah, You want to read it? Look in the Library or Amazon. Voila, there it is, on your left, not neglected, waiting for you to share this remarkable journey.

Now I am not saying that my recovery journey is like Sarah’s. Her’s is colossally difficult over many months, in the midst of raising three kinds, dealing a with a mother who is not close to her, and a husband who hard in IT, but may lose his job.

Me? I have had to learn to read, deal with some sleeplessness, like tonight, some anxiety that comes in various ways, discover and interiorize “pace.” I could never do this, when running. I always started too fast, and wore out before the end. This time, if I ‘run out of gas too soon, I will die before I’m ready. And I’m not ready now.

So yes, I am lucky, but teachable, and trainable, with a compliant and committed spirit. I measure my BP, I breathe deeply, I walk whenever I can, even though I can now take the car, and I notice people in pain more like I did twenty years ago. My attention span remains woefully short, but I keep starting up the book again.

No more marathons for me, but perhaps enough re-connected brain tissue that I can focus on an hour at my desk in preparation for a Sunday assignment. I managed to come up with a crazy idea for my son’s birthday, and carry it out alone! Something… not snowboarding like Sarah, but something! He won’t be disappointed this year!

The problem with quiet days.

Today was a very quiet day…just what the Doctor ordered.

A few days after I was discharged from hospital after a week in bed, and ten days after the stroke, we visited Dr. Bakshee, who looked after me during the hospitalization. Among the other things he said to me was, “Take it easy…don’t get excited about anything…spend at least half the day in bed. That’s the best thing you can do for yourself.” It sounded so simple, and so wonderful, to have no pressure, just relax and heal.

However, it has been difficult to manage that. A day with nothing in it to “do,” stretches out ahead of me like a looooong ribbon. Virtually every day since I got home, I have walked. Sometime a kilometer, sometimes three, sometimes five or more. At first, I just strolled, as the Doctor suggested – so that my blood pressure did not rise. As I got more clearance from the Doctor, I picked up the pace, until now I am walking at mu normal clip. Not exactly fast, but a pace that feels good to me.

Walking is important to me. Initially, it took the place of the running I used to do, when my knees and my back were whole. I used that to burn off emotional energy. I probably still do that to some degree with the walking.  It feels like this is something I can do for myself. It helps to control my weight, it gives me the sense of actually contributing to my healing, my recovery.

Since I got my “wheels” back, I have not walked a single day. I feel disoriented, like I have to re-integrate that activity into a new life. It’s weird. Even though I’m back in the pool, at least sometimes, I seem to need the activity of pacing to make an impact on my own internal process.

A lot of thinking gets done when I walk. I process all kinds of things – ideas, memories, emotions…it’s a busy time for me. I observe all kinds of thing. Looking is part of the internal process, somehow. A day like today, with virtually nothing to do, feels awful. It threatened rain all day, and I was waiting for a technician to come by when he could, so I was stuck. Earlier in the day, a friend asked me to go with him to Red Deer to size up a paint contract. That was a nice outing, and I enjoyed it. But I missed the walk.

Tomorrow, at least I have the pool to look forward to in the morning, and then a visit to Tim’s. After that, the whole day is open to me. I hope it isn’t rainy, so I can walk comfortably. If it rains, I may walk anyway, and get wet, just because I need to.

Who knew that there was this kind of stress for me in the quiet recovery process of doing nothing for a day? I try, now and then, to stay in bed until ten AM. I never make it past eight, even if I have nothing specific to do.

The whole thing is a strange process, and it makes me feel strange. Well, but not healed. Study, but somehow fragile. Sane…but a little crazy. My attention span is down to nothing. I can’t read for more than a few minutes, and I am restless. What would it take for me to simply relax into the process of healing, without being anxious and unsettled about it? Is this just another way for the old anxiety attacks to manifest themselves? Sigh…more another day.

Wheels…and more.

The Doctor cleared me for driving on Monday afternoon, and after forty-five minutes with the Motor Vehicles people at a Registry office in Wetaskiwin; I had a temporary license, and a new picture for my new license in which I do not look like a convicted felon! So I’m driving again. And I had a massage with no serious elevation of blood pressure. Things are looking up.

Now I have to figure out how to get in some decent walking time each day, since I don’t have to walk absolutely everywhere to get places. Failed today: big time rain, and I decided I didn’t want to get wet. The upside of this is that I get to go back to deep-water exercise in the local pool tonight. That should do me in! Looking forward to a good sleep.

While I was hospitalized a week or two ago (I can’t remember which week it was), a nurse heard me snoring from the station, and suggested in the morning that I might want to check out the sleep clinic in Wetaskiwin. I was surprised at this, since I went through a sleep clinic in Calgary twenty years ago, and had minor surgery that was supposed to correct the problem. Since I lost 60 pounds, I thought the apnea problem was behind me. Apparently not. Beatrix never complains about my snoring, but then she sleeps like a log. An apnea problem might explain why I wake up virtually every night sometime after three, wide awake, and sleep only fitfully after that. So I await a referral to Dr. York, the local sleep specialist.

I’m feeling like the recovery process is in a tricky stage at the moment. Without vigilance, I could begin to feel as though I’m totally “cured,” and could simply forget about it. Then I experience the impact of an incredibly blank short-term memory, and I remember that I’m not there yet. This morning, I took my BP cuff to the massage therapist, and used it after a relatively deep tissue massage to see if my BP was much elevated. Thankfully, it was not, so that’s small hurdle cleared. I plan to continue the massages, as my back has become really sore due to not being in shape for walking, etc. I will feel much better as my muscles tone up with exercise.

I still am careful about sudden heavy exertion. I have tentatively arranged with two strong neighbourhood girls to help me clear the garage when I clean it. I know I’m not safely up to lifting all the junk outside and then in again. I’m bribing them with milk chocolate! And gratitude. They are lovely kids, and I need to think of some way of rewarding them for their help.

I’m enjoying the fact that I lost six pounds during the five-day liquid diet, so I’m back down to my regular 160. I want to stay there if I can. I feel much better when a bit less plump.

Beatrix’ surgery is coming up this next Monday, and I am relieved that I can drive her in. I’ve located a place where we can stay if we have to go in the night before, thanks to Helen Chan, a hospital chaplain colleague in Edmonton. We also have a date Friday night to see a Burlesque show in which an old work colleague of mine is involved. Well, our relationship is “old” – she is not. It fascinates me that these relatively traditional sounding women all express their exhibitionist side through burlesque! Many of them are professional women, and this group is a kind of club, very feminist in nature, where groups band together to do classic burlesque! It’s not stripping, as the tacky clubs have it, but undressing tastefully, and sometime completely, to music. It sounds fascinating…and hot as well. I can hardly wait. As my old professor Davey Owens said about reading Lady Chatterley’s Lover way back in the 50’s – “It gave me one or two reassuring experiences…!” I’ll keep you posted on the impact on…my blood pressure at least!

Consequences

MRI finished and I am back home. The racket it made was different than I remembered it. There were different tones to the banging, and they came in batches, like the musical notes on a huge pipe organ. Indeed, that’s how I felt lying in that tube, with my ears and eyes covered: like I was living in an apartment among giant organ pipes, and someone was playing the instrument while I tried to rest! This fantasy took a lot of the unpleasantness out of the experience.

During the drive to Edmonton in the afternoon yesterday, my mind alternating between calculating whether or not we would miss the big storm, or be right in it, and reflecting on my place in my world post-stroke.

We did miss the storm, by the way. No tornado, but a huge thunderstorm from which the city was still dripping as we rolled into the parking lot of our residence.

What do I mean by “my place in my post-stroke world?” Prior to this event, say, last autumn, I was seen in my Presbytery as a go-to guy if you needed Sunday supply, or a short-term appointment in a congregation. I was fully able, and fully competent. Today, it’s different. I feel as though having had a brain injury changes ones status among peers. I am 78, therefore old. Today, my fantasy is that this becomes OLD, or OLD! And I have sustained a brain injury, which may, in the eyes of many, make me fragile.  I have to be careful not to overdo it. Others have to be careful as well, because I may be fragile.

If I should make a mistake, or forget someone’s name, or stumble on a step, others become agile. Perhaps I am not just fragile, but now…frail! Frailty confers a special status on one. Don’t push, or help, or expect too much, because he’s…frail. The label of ”frailty” tends to downgrade a person’s status, to remove him or her from the “go-to” position. Now, we have to be taken care, even coddled.

There is one more step down this dolorous ladder. Br frail, and forget a person, or sound a little weaker than before, or find your hips and your memory being ‘stiff’, and soon you’ll be seen as incompetent. This is a state truly that makes one a madman inside. There have been rants about it, poems about it, but little changes it in the eyes of others. Tragically, in time, your own brain accepts this and believes it. I am incompetent. I can’t do it, or think it, and I don’t have to try any more.

I don’t feel that I am very far down this ladder, but it looms before me, a kind of negative challenge. One I refuse to take at this point. Is that courage…or denial?

Back to the process…

With the “bowel blockage” scare behind me, I feel like I’m returning to some kind of normal…normal for me that is. This means that the need for further recovery from the stroke has re-entered my present consciousness. I’m doing the BP monitoring, being surprised that this continues to be low much of the time. I’ve attempted to establish routine in my daily life. I walk, get to bed at a reasonable hour, and carefully attend to bodily feelings as I go about my day.

It’s fascinating to observe how events and occurrences slide from the ‘back row’ of one’s consciousness to the front when a crisis is past. I spent some time today “freeing” the bicycles from their winter covers. I plan to ride the big ‘freighter’ bike downtown next week, to buy groceries. I took a test spin down the lane this afternoon. I can tool along nicely without getting winded or raising my BP unduly. That will give me a greater sense of freedom and accomplishment. I looked longingly at my racer, but I know that I will have to put that temptation on hold for a short while. There is no way to ride that machine without trying to go faster and faster. Perhaps later in the summer?

This evening we travel to Edmonton to be near the Grey Nuns Hospital. I’m up for an MRI (Magnetic Resonance Imaging) test early tomorrow morning. This appears to be the final test in the process of deciding if the stroke is truly resolved. I dislike this particular test, because it is so filled with unpleasant noise. As you lie in a long tube – a bit claustrophobic if you keep your eyes open – and the lens rotates around you. The machine’s noise sound exactly like a group of men hammering on the outside of the tube with sledge hammers! The first time experienced it, I was sure something was wrong, and that the machine was about to self-destruct. The whole process takes about a quarter hour, but that time is really unpleasant for me.

Unfortunately, I have no profound thoughts in me today. The trip tonight is on my mind, as well as the MD visit Monday, which will hopefully let me get on with removing the medical mandate from my driver’s license. After seeing the doctor, we have to rush to the Registry office, and fin out if the license can be renewed then, or if we have to go to Edmonton, or if I can get a temporary license. This is the kind of stuff that is most likely t cause my BP to rise. I get excited about these things, as in, worried. It’s pointless, I know, and I work against it. I can here Dr. Bakshee’s voice; “Don’t get excited about things…”

So I remind myself to take one step at a time. Recovery is a process, not a race. These little steps pave the way for the next advance. They keep me from going too fast. (See why I won’t get on the racer?) Anyway, shortly off to Edmonton, which was under a Tornado Watch the last time I listened to the radio!

Another "twist…"

Another hiatus…medical, once again. Fir the third time in 2013, I was in ER and then admitted to hospital for four days. This time, it was a suspected bowel blockage. It began with lots of heavy pain, and continued with a liquid diet, which unkinked the bowel, to make the story short and sweet,

You may wonder what this has to do with recovery from a stroke. There may be no connection, except that, for me, the ominous raising of yet anther system problem reminds me that my body appears to be collapsing one system at a time. Collapsing is likely too dramatic. Failing, faltering, may be more accurate. In any case, it is a timely reminder of mortality and fragility.

As the early stages of the hospital stay went on, and I was in the chaotic world of ER holding beds, I kept checking out my BP every time they took it, to see if it was rising dangerously. It wasn’t, which surprised me. The holding beds in ER are a godsend to people who require hospitalization, but who have to wait a few hours for a bed to come free. However, given the state of our health care system, the wait turned out to be over 24 hours.

This much time in holding beds is too long. There are five beds in a small space. The situation is much more cramped than an old fashioned ward with 10 beds laid out side by side. Apart a curtain between beds, there is scarcely room to get out of bed, virtually no auditory privacy. The place is frantically busy, as all the patients are in semi-emergent situations. The one nurse is constantly on the move, and has no time to talk to anyone, or listen to him or her. Valiant souls they are, doing 12 hour shifts. It takes a special kind of person to do that sort of nursing. They need to be technically very sharp, energetic and patient. The night nurse was lacking in the latter. She was prone to of the cuff rants about patients, the system, etc. that did little to induce a sense of care and peace in me. I was relieved to leave her behind.

I was transferred upstairs at 1 AM, wakened out of a sound sleep by the above mentioned nurse who packed me off non-to graciously to bed in…wait for it…Obstetrics! They were dead empty, and took the risk of taking an ER patient in the middle of the night. The transition could not have been more shocking. From the pit of hell to the gates of heaven! Obstetrics was peaceful, quiet; the ambiance was lovely, and the nursing warm and caring. When I arrived, they swaddled me in warmed blankets and literally tucked me in for the remainder of the night!

At this point, reflecting on stroke recovery becomes relevant. Before I drifted off to sleep, I reflected on the impact of the ER beds versus the Obs. Beds. In a holding bed, the chaos of a busy ER is just outside the open door, 15 feet away. Shouts, laughter, screaming children, and no let-up. Arriving in Obstetrics allowed me to feel like my BP dropped a few points. I rested there, had lovely conversations with nurses in the middle of the night when I couldn’t sleep. Granted, they were being under-utilized at the time, but I learned that the pattern there could go from no patients to six or even ten women in labour in just over an hour! I was grateful for change, and I came home tonight in much better shape that I would have had I remained in ER for much longer.

Let me be clear: the ER I attended is terrific. Competent, quick, friendly and helpful in the healing process. I would go back there in a crisis at the drop of a hat. But the use of holding beds is skewed by the way the way the system is managed. Not the fault of the ER staff, but with a huge impact on patients.

My BP tonight was higher than usual at the end of the day. I’m sure it will have settled down by morning. I will think fondly of the overwork folks in ER, and the angels upstairs, as they wait for their moms and babies to arrive.