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Friday, December 30, 2011

The Bed

Christmas Eve saw the arrival of the last returning child, my daughter from Thunder Bay. She and I were waiting for luggage at the turnstile, chatting happily, when I felt two hands on my shoulders. There stood Anna's fiance whom I immediately wrapped in a warm hug. A wonderful surprise but not entirely unexpected.  I have learned to listen to what is not said by my children over the years and have thus solved and predicted all kinds of things about their lives.  Something about being a mother, I suppose.

With the house and three beds already full with the other three adult children who had drifted in the night before, leaving only the smallest bed in the smallest room for the fourth, I quickly had to rethink the sleeping arrangements.  My bed is queen-sized compared to the slightly-larger-than-a-twin bed in the room next door.  I would vacate my bed for them and move into the small guest room.

This bed is a little gem and has been with us all our married lives. It dates back, in fact, long before Michael even met me.  He shared a life with a woman for six years before that relationship disintegrated a year or so before meeting me. Their first bed had been a slab of foam on the floor. In an effort to improve their lot, Michael built a frame for this irregularly sized slab which happened to be smaller than a double but bigger than a twin, what I call a three-quarter-sized bed.

This frame is cleverly constructed and can be completely dismantled for easy moving.  It consists of four two-inch thick planks of darkly stained pine, shaped and dovetailed to fit snugly together to form the outer frame. To form the infrastructure, Michael used three much thinner planks of pine, one going the length of the bed down the centre and two shorter ones spanning the width, all three dovetailing together to form the interior framework of six compartments that provide useful storage space. Then over top of these compartments there are three sheets of plywood, with finger holes bored into each for easy removal, providing the support for the mattress. Not a single piece of metal was used; it is all wooden dowel and dovetail construction.

When I first met Michael he was living as a bachelor in a cute little one-bedroom apartment, almost all the furniture therein he had constructed himself.  The living room was furnished with simple but effective  deep chairs, two of which were lashed together to form a couch, simple, attractive furniture that we kept for many years. In his very tiny kitchen he had built a tall table out of a butcher block to increase his counter space. It still graces our kitchen to this day.  Then, of course, in the bedroom was this bed, but by then Michael had replaced the old slab of foam with a new, custom-made mattress when he resumed his bachelor life. His style was decidedly masculine but warm and I remember being so impressed with the calm, clean order of his home. It was a powerful aphrodisiac added to all his other charms, of course.

This bed became our bed. For two thin people who slept wrapped around each other, it was plenty large enough. Two children were conceived in that bed. But as the babies came and were tucked in between us to be nursed through infancy, our needs changed and we replaced the bed with a full double futon that, for the first few months until my dad could construct us a frame, lay on the floor. The Bed was moved down the hall for the now three-year-old first born who had made room for her newborn sister by vacating the nursery and moving into the other bedroom with this, in her eyes, huge bed.

Over the years that bed was inhabited by every one of our four children. It had a life in every single bedroom of this house and of our previous home. It was used by guests and even my mother who, deeply affected by dementia, needed to spend a few weeks with us when my dad was so ill in hospital just months before he died. It was the moveable bed, easily dismantled and reassembled by one person. When our third child Laura left for university in Montreal, it was the bed that got easily packed into the van with her meagre possessions and moved down the highway to another city.

When Laura graduated and was moving her things back home before setting off overseas, the bed returned with her but by now the over thirty-year-old foam mattress had to be abandoned. It did not make the trip, just the frame which got moved into our basement to collect dust, patiently awaiting its next call to duty.

Finally, as Laura prepared to leave home again, this time permanently for Montreal, she had a choice of beds to take with her.  The Bed was rejected for a newer, characterless double, but it was happy to find its way up the stairs from the basement into the guest bedroom vacated by the favoured one.

And there it remained, now with a brand new custom-made mattress, retired to guest duty. So on Saturday afternoon with the arrival of not one but two more visitors, I decided I would offer them my big bed and I would move into the guest room.

This was the first time I had slept in that bed for a very long time, not including the many times I had nursed a sick kid through sleepless nights in it. And I had a revelation. Since Michael had come home from the hospital two years ago and could no longer sleep in the big queen-sized bed upstairs, he has been sleeping in the specially-made room on the ground floor in a hospital bed. Having had to sleep separately from him for a few years before this event (sleeping next to Michael at that time of severe and unmedicated sleep problems was like being next to a restless, troubled dragon who would lash out at me violently in his sleep), I decided to reclaim the master bedroom as my own. My son repainted it for me and I created an uncluttered sanctuary for myself. I was delighted to take over the large memory foam bed, believing it would solve my sleeping problems. And it did, somewhat, but lately, whether it's because the aging memory foam is losing its integrity or that my arthritis and menopausal symptoms are acting up, I have been less than comfortable in this bed. But when I climbed into The Bed for that first night on Christmas Eve, I slept better than I have in months.

Except for a sleepless night of worry over my son on an overnight drive back to Toronto - a night of anxious phone calls from him as he dealt with a minor accident, a troubled night that saw Anna and me huddled together in The Comforting Bed (almost everyone else slept through it) - the trend of good sleep continued and has improved significantly. I had also recently started a herbal supplement for the hot-flash invasion, which could also be credited with the sleep improvement, but The Bed seemed to allow me to lie on my side comfortably for the first time in many months.

When the house started to empty out, I didn't want to give up The Bed so I had the remaining visitors help me with a move yesterday and now The Bed is in my room. My sleep has been transformed.

It occurred to me as I lay awake this morning, feeling more refreshed than I have in months, that The Bed is Michael's history and our shared history. It was his bed with his first partner, it was our bed, it was our children's bed, it even left home and returned with a child, a well-travelled bed.  It was our marriage bed, the bed that comforted my mother through an anguished time, the bed in which each child was nursed and nurtured, a bed for many well-loved guests. It is now my bed.

I feel as though I have come full circle back to The Bed, that something new has begun. Other beds have come and gone through our life together but none so full of rich, happy memories. Perhaps it is those memories of the shared history that are responsible for the improved sleep. I don't know. It could just be a well-constructed new mattress that has nothing to do with The Bed at all. But a dear old friend said to me the other day, his last words to me as we came to the end of our visit, that I would soon be facing transformation in my life.  I think the transformation is beginning, at least in my soul, but it is deeply rooted in the history of The Bed. Wherever life and Parkinson's Disease take us now, I will have The Bed as my anchor and my eternal attachment to the memory of Michael, his gift to me.

Thursday, December 22, 2011

The Anarchist

Keeping order in a life dictated by an anarchist is challenging. The anarchist does not respect that quiet order I have tried to maintain. The anarchist removes appetite and interferes with meals. The anarchist flaunts wakefulness through sleepless nights. It lies hidden, stealthily awaiting a moment to attack. Lately the anarchist has been getting the upper hand.

Mealtime has been sacrosanct through my life as a mother and now as a caregiver.  It was all through my childhood too, a time to connect with family after a busy day, to discuss, or more often argue, about life. I have carefully provided three sit-down meals a day for Michael who until this past year has been a keen food enthusiast even if meals are silent except for the strange noises he now makes while he eats. The routine seemed important if only to suggest I might have some control over this anarchistic disease.

But lately that routine has disintegrated, breakfast being the only meal I can count on him eating fully. I am losing interest too, often grabbing leftovers for myself when I'm hungry, tired and frustrated over the the years of silent meals. Most days I'd rather eat and read or do puzzles alone while Michael languishes in front of the television.  He is losing interest in food so I break my rule and ply him with tempting foods while he gazes fixedly at the screen.  Sometimes it works though I have to leave the room because the inevitable mess makes me crazy.

Communication has disintegrated even more over the past few days.  On Monday night right after his evening medication, I was suddenly aware as I leaned against him watching television that there was something wrong. He was rigid and anxious. Thinking it was simply the anxiety that often accompanies the "off" time of his medication, that usually passes within an hour, I dismissed it, calmly assuring him he was okay.  But he tried to articulate something to me and couldn't. I, in turn, painfully and unsuccessfully attempted to elicit a simple yes or no response to specific questions: Is there pain? Is there numbness? Do you need to go to the bathroom? Can you walk? Do you have a headache? Can you see clearly?

I took his blood pressure and it was very high. He was flushed and a bit sweaty. Thinking he might be having a small stroke (he's had one before),  I focused on whether he could move both sides of his body. Apart from the normal Parkinson's rigidity he seemed balanced in the little movement he could manage at that moment. I continued to ask questions which he either could not answer or the responses were vague and inarticulate. He started uttering seemingly random single words, then touching each knee, counting "one, two". He touched his nose, then reached out to me. He knew my name but had difficulty naming his children. He was most certainly troubled. At one point he touched and identified his leg. I wondered if there was undue weakness or numbness or pain in the limb, but he couldn't tell me.

Early in the episode, my friend called for a chat. I told her I'd call her back and when I did, she offered to come over.  Such a comfort. Michael was now lying down on the couch, very weak and looking more anxious.  I had already given him a dose of anti-anxiety medication. At one point he started to shake.

What could it be? A urinary tract infection? Probably not - nothing like the last time which was marked by hyperactivity and deep psychosis, and there didn't seem to be any pain or fever. Was this just a stranger than usual low medication response? Or could it be a reaction to the rather stubborn constipation or mild cold symptoms that manifested this week? Maybe I rattled him by unwisely confessing earlier in the day that I might be reaching the end of my rope (I do that about once every six months and always regret it).

Then all of a sudden, two hours after the Parkinson's meds had been administered and this alarming spell had commenced, he started walking around, apparently okay. My friend went home and the evening continued as it usually does.

I had had a strong sense of dread that this was it, Michael was dying, even though the symptoms were so vague. I knew that a trip to the hospital would be not only useless but also dangerous with all the attendant panic-inducing procedures and general emergency room mayhem. It would have been a futile exercise causing more harm than good, as has been the case in the past. Better that he remain calm and comfortable at home. While my friend was here, I started to cry so I left Michael's side to distract myself in the kitchen cleaning up, my usual technique to keep panic at bay. My friend sat at Michael's side chanting a calming prayer with him.

I spent a fairly vigilant though oddly calm night listening for what I had convinced myself were Michael's last breaths. In fact, on waking in the early hours after a very tender dream about him, and not hearing his heavy breathing, I knew he was gone. I calmly got dressed and ready for the day, putting off the inevitable. Then I heard him clear his throat through the monitor. Awake and normal.

Well, not quite normal. His blood pressure was still dangerously high. All that day his communication was worse, muddled, and has since continued to be so at times. Tonight I offered him a breakfast supper, since he has been even more disorganized about his eating. Or maybe I have been.

"What would you like to eat?"


"What kind?"

"Corn Flakes."

"We don't have Corn Flakes. We only have the usual stuff, Cheerios and Raisin Bran. Which do you want?"

"Frosted Flakes."

The conversation went on like this for longer than I could stand and we finally agreed upon Raisin Bran after much coaxing in that direction on my part.

I am on high alert because the anarchist has gained ascendancy, even though Michael's blood pressure has stabilized and everything is seemingly normal, normal at least for a war zone expecting sniper attack at any moment. With Christmas approaching and an anticipated houseful of family, I work to ready the house. In reality I need the order this activity provides to banish the anarchist to the far reaches of the house, to still its insidious undermining of my frantic efforts to maintain calm and normalcy.

Wednesday, December 14, 2011

Sleepless in Chelsea

Insomnia. The bane of my existence. I am not a chronic sufferer but have had serious long-term bouts of it throughout my life. Of course, four infants contributed to the problem. I used to find it odd that a baby, or sometimes more than one child at a time, would waken me many times through the night, leaving me wide-eyed and sleepless rather than comatose. But then during the day, my battle would be to stay awake.

Lately the problem, I believe, is hormonal. My sleep cycle is interrupted several times through the night so my body can turn on its sprinkler system. The hot flash. I wish it were as sexy as it sounds. I wake up, check the clock and think,"This must be the 1 a.m. (or 3 a.m. or 5 a.m.) flash,", then wait for it.  Moments later it's like the tap has been turned on and every pore in my body springs a leak. Wild kicking of duvet ensues and the body is instantly soaked. I have to be careful not to fall back to sleep (even if I could) because our house is very cold at night and as soon as the waterworks are over, evaporative cooling kicks in and I freeze. Very efficient cooling system if that's what you are looking for.

I know all the explanations for this phenomenon but I don't see the purpose in it.  I have great faith that the body knows what it's doing most of the time, and since most menopausal women suffer with this problem - many seek hormone replacement therapy - there must be a grand scheme at play here other than just a big fat cosmic joke at our expense. You can always tell the menopausal women in a crowd. They're the ones repeatedly flinging off clothes only to bundle back up moments later. The desire to leap naked into a snow bank can be overwhelming. I have to say that in our fairly cool house, it is a welcome problem at times.  I'll be sitting knitting in front of the television feeling a bit chilled, then remember that I'm due for a heat wave which takes care of the problem for a while. But then the chill usually returns.

Back to sleeplessness. I'm awake sometimes for long periods of time now because by the third or fourth wake-up my body wants to get up for the day. And I've tried that too but it means I'm a wreck by about ten a.m. I have podcasts and audiobooks to listen to that sometimes lull me back to sleep. If it were true that one can learn things through sleeping osmosis, I'd be one of the most informed people on the planet, but alas, I am not. With that system not working these days, I bought a herbal sleep remedy last week and gave it a try, valerian being the main ingredient and recommended by my menopause bible (yes, such a thing exists).  It didn't work except to leave me feeling foggy and groggy by the second day. I am reluctant to take anything heavier because I need to be able to wake up in case Michael is in trouble.

Which happened last night. All night I was aware that he wasn't sleeping with the usual depth, if at all.  I lay awake at times thinking I should get up and check on him but couldn't quite drag myself out of bed. At 4:31 (I am acutely aware of time through the night) the clanging began.  I have devised a system for Michael. He is unable call out in the night so I have tied a metal whistle to the railing of his hospital bed. My intention was that he would blow it if he needed help but he is not capable of that either.  Instead he bashes is against the metal bed frame. If I'm not already awake I am sure to be instantly with that noise blasting through the baby monitor.  I dread the sound of it but it is extremely effective. Unfortunately last night I had finally dropped off to sleep myself so my reaction time was a bit slow.

When I arrived at his bedside, his eyes were like saucers and ringed with panic. "I haven't slept all night," he was able to whisper, more lucidly than usual. I sat with him for a moment stroking his face then offered him a dose of clonazepam, an anti-anxiety medication that he takes every night before bed and otherwise when needed.  He nodded. When I went into the kitchen to get a pill, then over to the dining room table to retrieve his cup with the straw I noticed his bedtime medication sitting there untouched. DRAT (or unprintable words to that effect). In my exhausted state last night and my haste to shuffle him off to bed, I had completely forgotten to give him his medication which contains two heavy sedatives. That explains everything, the poor guy. So at 4:39 a.m. Michael took his bedtime medication and was asleep within ten minutes.

I, on the other hand, pretty much gave up for the night. It is nearly 9:00 a.m. as I write this and he is still happily and heavily sawing logs. I am on my second large mug of a heavily caffeinated beverage.

Monday, December 12, 2011

The Persistence of Memory

My mother spoke often of disturbing dreams. Over many decades she was plagued with a recurring one involving a house, never the same house but always without doors.  In each house, my mother was toiling away at her usual domestic chores, and each one had a different, often confusing layout. She would awaken troubled and anxious but never did she try to interpret these dreams, nor did she see them as significant, though over the years she spoke frequently of them to me.

Mom was a very bright woman who had dreamed of higher education and a profession. But she lived in prewar England that was still deeply mired in sexism; women did not flock to university. We now know that the war changed that somewhat for women as it did for my mother. Though she was unable to pursue a university education, she did secure a significant job in the civil service where she worked throughout the war. Women ably stepped into the jobs vacated by the absent men.

After the war, Mom and Dad married immediately and Mom, as a married woman, was forced to vacate her job presumably for a returned soldier. Besides, the thinking went, women must be happy to return to house and home.

Unfortunately, postwar housekeeping was one of drugdery. Added to that were the privations of rationing, making feeding one's family an enormous challenge. It was partly because of these difficulties and the fact that Dad could not see himself advancing as a teacher in a system that tended to favour who you knew over what you knew, that they left Britain for prosperity in Canada, or so they thought. What ensued were years of struggling in small, backwoods Canadian towns; they were always wondering if they would ever get ahead. They moved many times for many reasons throughout my childhood, settling in one small town after another, some of them extremely deprived. A string of small, cramped, poorly heated homes became my mother's reality. Yet never did I hear her complain about these circumstances. To me it seems obvious, though, that she tried to work out these frustrations and her sense of imprisonment in her graphic house dreams. As much as she tried to ignore these memories and emotions, they insistently reared up in her subconscious.

I have some understanding of my mother's desperate isolation. Yet throughout Michael's escalating symptoms and increased disability, I have strangely felt very much in control over my health, my home and my environment, if not his disease.  I have been lucky not to have to worry in the same way Mom and Dad must have over financial security.  I'm sure Dad felt equally trapped in what amounted to near-poverty as a school principal, so poorly paid was he for our first nine years in this country.  Relative affluence did visit them finally when they moved to coastal British Columbia, and yet the irony is that this small mountain village was the most isolated of any they had lived in before. Boat, seaplane or helicopter were the only ways in and out. Then in winter many, many feet of heavy snow would fall, effectively burying houses and cars.  I remember an eight foot wall of snow that faced us as we left our front door.  So, though my parents had escaped the trap of near-poverty, my mother's sense of physical vulnerability and isolation must have been supreme in this coastal town. Having entered middle age with accompanying health problems, she knew that facing a medical emergency in this small town was a serious problem. With no hospital or doctor in the village to treat serious illness, an anxious, sometimes fatal journey was required by helicopter over the mountains, into the next town.

A few nights ago I had my own house dream.  It was this house, my castle, my sanctuary. I was upstairs on the landing, just outside my bedroom when suddenly the interior walls began to melt.  No Salvador Dali clocks, just liquefying walls. It was a very brief dream. I awoke extremely anxious and in a cold sweat.

I pondered my subconscious murmurings and was somewhat puzzled at first.  Then something happened a few days later that seemed to clarify the dream's meaning to me, revealing my own buried fears.

I have enjoyed very good health which I attribute to good genes, good luck and healthy living. I don't smoke or drink. I exercise a lot, in fact haven't been more fit in my life; I am probably more under- than overweight.  I eat well and usually have lots of energy, despite the brain-numbing boredom of my job. I am generally a positive and happy person with lots of good friends.  I feel that I handle stress fairly well.

On Friday night I suffered an attack. I immediately knew it was an extreme gastric event, something I haven't experienced in many years, really since an ulcer I suffered as a young woman.  But I pride myself on my cast iron stomach now - I rarely have digestive difficulties - so when this violent and painful attack hit, I was concerned.  At 55, I am entering that age when women become more susceptible to heart attacks, and though I knew this was not one, I still felt I should pay attention. Women's heart attacks manifest differently, often more vaguely from men's which tend to display the classic signs of crushing chest pain. This was upper abdomen, extending up my chest, into my shoulders and down both arms.  I was in agony for about half an hour. I swallowed a glass of water with baking soda dissolved in it, a remembered remedy of my mother.  I took my blood pressure and pulse - no significant elevation. I knew what this was.  But suddenly I was aware that my complacence might be dangerous given my enormous responsibility to my husband. If something terrible should happen to me, he would be helpless, trapped inside this house. In fact I even asked him halfway through this attack if he knew what to do if I needed help.  He stared back at me blankly, picking up the television remote control.  It was then that I picked up the phone and called a friend, not yet to get help but just to warn somebody that I might need it soon. As her calming voice came over the phone line, my pain subsided and the now-mounting anxiety lifted; perhaps too the baking soda had taken effect. She offered to call back in half an hour, just to check in. She did and by then I was fine.

Though I was outwardly calm and fairly unconcerned throughout the attack, it was afterwards that I understood how vulnerable Michael is, so completely dependent on me.  Visions of a nighttime heart attack or stroke that might kill or seriously disable me haunted me for a couple of days, not for myself but for a husband who in the morning is nearly paralyzed until medication can give him some relief and mobility. Using a telephone is out of the question for him. I am not sure if there is anything more we can or need to do to protect ourselves; I have many who check in routinely and I will continue to be vigilant about my own health.

But I think my dream signalled that my own interior landscape is changing and I may not be able to take my good health for granted. Our bodies usually have a memory and a knowledge that the conscious mind does not; it gives us signals if only we listen carefully.

Tuesday, December 6, 2011

Proud Daddy

Michael has always had a chest-swelling pride for his children though he was quiet about it, never boastful. There at the birth of each, tightly gripping my hand and shedding tears, he has been a committed and deeply involved father, a comfortable dad. We met when Michael was 31 and I was 23, had a short courtship before marriage, then launched into producing a family immediately, not able to take the time for the travel we'd both agreed upon. Apparently we were destined for another kind of adventure together.

Michael stepped easily into his role of father, surprising his doubtful mother who had predicted otherwise. Over the years Michael has paced the floor with cranky babies while Mom had much needed naps. He has played games, watched movies and sung lullabies, albeit questionable ones involving pirates and other illegal activities. He has stood by me with a houseful of sick kids and stroked feverish foreheads at four in the morning, even on a work night, sometimes cleaning up copious amounts of vomit. One night, with a three-year-old croupy child and an unusually panicked mother, it was he who calmly whisked this child off to the hospital while I stayed behind with the others.

He has lovingly painted and restored second-hand two-wheelers then run miles behind a wobbly learner, scooping them up and dusting them off when they crashed to the ground. He has built skating rinks, assembled backyard play structures, and chased escaping toddlers. He coached soccer both officially on the field and casually in the backyard. All our kids learned to throw a mean football and slug a bat. Never one to sit still, on trips to visit now grown-up offspring in the big city, he'd be the first out the door to find a playground or any patch of green to kick a soccer ball, throw a frisbee, a football or a baseball to calm the restless young ones.

On visits with other families to our home, he and the other dad would play a demented form of hide and seek in the dark outside. The squealing children had to hide while Milan and Dad would seek them out, scaring them into a screaming frenzy. More fun was when the kids didn't know where on our acre property the stealthy dads had hidden, only to jump out at them unexpectedly. Sheer terrifying joy.

The kids always loved it if I went away for the day or a weekend, a rare occurrence unfortunately for them. Dad could always be relied upon to supply them with all the junk food I usually denied them. He too was starved for fat, salt and sugar apparently. When he wasn't traveling for work, he was always home for our rowdy family dinners, providing the intelligent discourse I craved. But we were outnumbered by our garrulous children and conversation often disintegrated.

He spent hours sitting through gymnastic lessons, driving to hockey games through nasty snowstorms, and in the summer, soccer games near and far with a carload of boisterous girls. He loved to watch sports of any kind but especially children's games. He read stories and sang songs in a deep sonorous voice that has long since disappeared. He attended concerts and plays, both professional (our singer moved beyond back-seat-of-the-car concerts) and amateur, equally nervous and thrilled for the performing child. He glowed with pride over the one child who more fully than the others attended school and achieved so highly, grabbing all the awards.

Though a gentle and loving father, he had his slightly menacing side. All four knew that if Dad peered at them silently over the top of his glasses, trouble was brewing.  If their bad behaviour persisted, he would kick off his Birkenstock sandals to more easily chase a naughty child up the stairs; they knew then it was time to run - fast - and slam the bedroom door or be subjected to Dad's withering admonishment, though I think I was the only one who dished out the occasional corporal punishment.  When bedroom doors got slammed too loudly or too often, he never hesitated to remove the offending door, effectively silencing the noisy problem.  It was he who had the brilliant suggestion one day to disallow any conversation between two squabbling siblings after a nasty argument. Within hours they were begging to be allowed to talk to each other again.

Lately, with a nearly total shutdown of emotional expression, it is difficult to know how much he takes in about our adult children's busy lives. I tell him everything, of course, but he receives it all mutely and blankly. I have to remind myself to share the news with him since the response is usually minimal or completely absent.

But there was one episode recently that elicited a slight glimmer of emotion. Emily, a fine athlete and keen competitor, arguably the most like him in that department, called one morning weeks ago to report on a tournament she had played in the day before. It was very early and Michael was still in bed. She and I arranged a skype visit so I hoisted him up in the hospital bed and propped the computer on his lap, his medication not yet up to full speed to allow anything more. We were told by this excited young woman that her nearly all-female dodgeball team had wiped the floor with most of the other predominantly male teams, men who had, according to her, arrogantly paraded around the gym in their matching track suits, then angrily stormed out as this team of "girls" in hand-decorated T-shirts knocked them out. I must add that Emily is built the way her father was as a young man; she is thin, wiry and quick, and loves to win, even crows about it loudly, especially when the win is such a sweet one. They had nearly won the entire tournament, coming in second by a close margin, and she was ecstatic. The odds of any kind of victory had been heavily stacked against them. Her joy jumped infectiously off the screen. I was happy for her but Michael barely responded as usual. It was only after I had said goodbye and turned off the computer that I noticed the smallest hint of a smile on my husband's face. He was loving it.

He cannot tell his children he loves them in the same ways he used to with frequent verbalizations and affectionate hugs, but that parental joy is still there, deeply hidden.

The old Michael would have made one heck of a grandad. The new Michael will no doubt silently adore his grandchildren, whenever we are graced with them. Alas, with our vast store of memories of Daddy, we will simply have to imagine what the expression of that love might have been.

Friday, December 2, 2011


Like many teenage girls, our oldest daughter - all our daughters - earned money through childcare, or babysitting as it was known then. Anna was particularly popular with kids and parents alike because she brought her artistic flair to the job. She has sung like an angel as long as she has spoken and cannot even carry on a conversation without at least humming the punctuation. Those of us less musical in the family had to learn that this girl could engage in coherent conversation AND pay attention to our words while singing. We might have been the only family that had a rule of NO SINGING AT THE TABLE. Anna also had a love for drama, starting, in early adolescence, a small theatre group for local children. These kids met in our basement on Saturday mornings and rehearsed plays they had "written" themselves to be performed as fundraisers later in the season. All was directed by Anna who cleverly managed to bring out the latent talents in these kids. The shows were comedic, sometimes farcical, with a splash of music.  Even very young siblings, whose only talent might be an ability to burp on command, were put to work in a comedy sketch. Adults had no involvement in this project, the kids taking care of every single aspect of the production even down to booking a venue and choosing the charity they wanted to support.  The oldest in the group was always Director Anna who retired from this project at the ripe old age of 13 or 14.

Others in the community got wind of this talent and occasionally Anna would get a request for something a little different. One such job was to appear at a twelve-year-old girl's birthday party as a fortune-teller and read the palms of a gaggle of girls. Knowing nothing about palmistry, Anna visited the library and immersed herself in the subject, using the rest of us as her guinea pigs. The day of the party she donned a flowing skirt, gypsy scarf and hoop earrings to round out the role.  She was so convincing that what was to be only a small aspect of the birthday party became the main event, with girls clamouring to have their fortunes told. Anna was careful to keep her prophesies positive and general.

As her test subjects, we were compliant, though perhaps not her little brother who couldn't sit still for anything at the time. I have no memory of my own fortune, but one person's stood out. This was not long after Michael had been diagnosed in 1994 with Parkinson's disease, and of all the children, Anna, as a young teenager, was old enough to understand something of the challenges ahead with this disease and was terribly afraid for her daddy. Michael's palm was subjected to her scrutiny along with the rest of us. I remember her showing me Daddy's lifeline and telling us, grasping at anything to reassure herself, that his was a particularly long and strong one, that he would enjoy longevity and a vibrant and productive life.

These memories all came flooding back yesterday after returning home from a meeting at the bank. I had arranged the visit because, though I have managed the family's finances for years now, I realized I had never sat down with anyone to look at the global picture, to make sure there will be no nasty surprises if Michael leaves me suddenly in the near future. I came away reassured and confident that our financial lifeline is at least strong and unfrayed. At the meeting, the consultant asked if I had any idea what Michael's life expectancy is, how long his lifeline might be.  I admitted that, to the best of my knowledge, he could live a day or a decade; I need to be prepared for both.  It was when I relayed this conversation to our caregiver, she reminded me that his lifeline is long and strong; we might be talking years if there's any truth to this practice.

I don't put any stock in palmistry myself.  I do believe our hands, indeed our bodies, have much to tell us about our state of being and who we are, but I think if palmistry had any real relevance we'd have solved a lot of life's mysteries by now.  I like to look at the lifeline as something more symbolic, perhaps a metaphor for the strength of one's life force, how one faces the challenges in one's life. No one can argue that Michael's own force hasn't been strong and resilient, no matter how long he might live with this devastating disease.

It got me thinking about other lifelines. My mother-in-law uses a service actually called Lifeline. She wears a gadget around her neck that she simply presses if she finds herself in distress in her own home.  She is immediately linked to an operator who assesses her situation and sends out the appropriate emergency teams, if necessary.  Now that she is back in her own home, it is a critical link for her and allows her, and her anxious family, to have a modicum of confidence and security.

This lifeline of hers uses the technology at hand to keep her connected.  I too rely on the wonders of the modern world to lessen my sense of isolation. The computer, the telephone and my cellphone are my only lifelines to the outside world some days, and to some degree the radio and the television, though they lack the interaction I often crave. A very satisfying day is one where some or all of my children have checked in and many friends too. I am blessed to have such strong lifelines of communication with so many.

I believe Michael's link to this world is strengthened by his recent embracing of a spiritual life. Nightly prayers give him solace and, most nights now, allow him a smooth transition into the dream world. When in a state of extreme anxiety, the chanting of a certain prayer is like a life preserver for him. Many a night after I have left him I can hear him muttering the chant through the monitor until I hear the steady breathing indicating sleep. His lifeline to the spiritual world is intact, strengthening day by day.

I peered at my own palm this morning. I know nothing of palmistry but was musing about what mine might tell me. My lifeline is strong and long but there is another line that merges with it and becomes one with my own. I like to think of it as Michael's blending with mine, our journey in this world inextricably linked.