Tuesday, May 29, 2018

Did You Gorilla Tape That?

Every Spring the “Powers That Be”, aka the condo board, has the building power washed. This means we have to haul everything on the balcony inside. Facing the prospect of clearing the balcony, I took a hard look at all my gardening tools, pots, fertilizer and other odds and sods and decided with a sigh that, until (unless) I can get waist-high raised beds my gardening days are over. But the gardening paraphernalia is all in usable condition, so Gail put it in my wagon and took it out to the building’s community garden. 

This left only two things on the balcony; the cat’s little carpet-covered house, which Smokey sits on, and Hobbes sleeps in, and Hobbes’ “hamster” wheel, a metre (48”) wide circle which he runs on like a treadmill. He usually chooses to run about 3:00-4:00 am, and he yodels while he runs. I’m sure the neighbours enjoy this about as much as I do, but thankfully he usually gets going so fast he flies off the wheel, which scares him a bit, and brings the session to an end.

When we bought the wheel we had to assemble it (18 sections) and apply the running surface which was a plastic material which felt a bit like velour. It had a sticky backing. We were hoping fat old Smokey would take to it and run some pounds off but he was terrified by the thing. However Hobbes took an immediate shine to the running surface. The movement of the wheel sent him scurrying under the bed, but the running surface drew him like a bug to a street light. Soon he was busy tearing chunks of the plastic off the wheel, where it stuck like dried paint to the floor! 

When we redecorated in June we moved the wheel to the balcony, which made Hobbes very angry. He carried big slabs of the running surface into the house and dropped them on the floor of the living room. He didn’t get on the wheel and run for a couple of months!  

So fast forward to today. We had to move this enormous wheel inside temporarily. It’s been outside almost a year. There are a few shards of running surface hanging from it. We tore them off before we brought the wheel inside, stuffed them in a small garbage sack and threw them away. 

Now there’s a problem. One the thing is very dusty from sitting outside for a year, and two, he’s liable to tear a claw out running on the wheel, as there’s a join between every section large enough for his claws to fit into as he runs. So we thought we’d put it in the bathtub and scrub it down. It wouldn’t fit. I went through the rolodex in my head. What do we have that’s big enough just to sit this thing in, get enough water to cover the track (4”) and we could just roll it and wash it? A-HA! Underbed box that we store guest linens in. Perfect.

Forty-five minutes later, it was scrubbed, the kitchen was nearly ankle deep in water and Hobbes was on the kitchen counter, leaning over us with an extremely anxious expression on his face. “Meow?” he said, “Meeee-ooow”?  

We dried it as best we could, mopped up the kitchen floor with half a dozen cat-tas-troh-fee towels, and rolled the wheel into the guest room. Now came the “fun” part. We had to “Gorilla” tape over every one of those 18 joins. Gorilla Tape is *sticky*, and it is not programmed to do anything but to stick to whatever surface it comes in contact with. 

We were using our ancient metal tape measure and it didn’t help that the tape measure was too close for me to read without my glasses, and the joins were too far away to see without my glasses. Hobbes kindly volunteered to hold my glasses, and even cleaned them by licking the lenses. 

I determined that each piece of tape needed to be cut 20.95 cm (8.25”) long. Tony held the end of the tape and I pulled. He has a tremor, and I am not very strong, so the Marx Brothers’ movies come to mind. 

I measured up our 1st try. We were 5 cm (2”) short. We pulled some more. He held the measuring tape next to the Gorilla tape. The measuring tape slid over the the top of the Gorilla Tape and they stuck together. 

I saw where the 20.95 cm mark was and made a cut on the opposite side. The Gorilla Tape stuck to the scissors, and when I tried to pull them free the Gorilla Tape stuck to me. When Tony tried to help pull the scissors free, the Gorilla Tape stuck to itself.

 “Oh good,” he says with a thin smile, holding up a folded  length of tape stuck to his thumb, with the scissors dangling from it, “Only 17 to go.”  We did (eventually) get them all done, but we may never be the same.

And how are your projects coming along? 


Sunday, May 27, 2018

Not “Confinement” but Liberation

When someone is diagnosed with a neuromuscular disease one of their first questions is, “Will I end up in a wheelchair?” 

I’ve even heard people say, “I’d rather be dead than be "confined" to a wheelchair!” 

My doctor has argued with me for the last two years, saying it was not yet time for me to begin using a wheelchair. He’s referred me to physiotherapy, to acupuncture, to a rehab specialist, all of whom said they could do nothing but temporarily ease the pain brought on by walking with needles and drugs, but could do nothing about the exhaustion and damage walking is doing to the few viable muscles left in my legs. 

The week-long paralytic episode I had earlier this month, provoked by taking a slow stroll with Ian, was enough to make me come to my senses. My doctor does not live my life, walk in my shoes, nor has he ever really understood the physical challenges I face on a daily basis. So once I was capable of walking again I began shopping for a wheelchair; and today I bought one. 

I knew what I wanted, a chair that fit me like a glove, that feels like an extension of me, that is light and easy to transport. I want my feet tucked back under me, not stuck out like a cow catcher. I’ve been pushed around in a hospital-style-chair in big crowds often enough to know that the person pushing you doesn’t always know how far ahead of you your feet are, and you plow into people about six inches above their ankles - and then they sit in your lap. This is not too bad when it’s a six year old, but when it’s a 136 kg (300 lb) guy with dreadlocks who has about seven beers and a few lines of crack in him, the result can be unpleasant enough to require the RCMP’s intervention. 

So here is my little beauty. It weighs 6.57 kg (14.5 lbs) with the wheels off, 8.2 kg (18 lbs) with them on. The footrest folds up, then the chair folds up to about a foot thick, more or less. I really wanted canary yellow, but dark green was what they had, so following the old adage, "If you can't get what you want, like what you can get." I picked dark green. If I can find a body shop that is able to strip it down and paint it yellow I may get that done. I feel visibility is important in a chair. 

But back to the “better dead than in a chair” business. Over the last five years my leg muscles, and to a great extent the muscles in my hands, arms and shoulders have slowly and steadily disappeared. As a result I am mostly confined to the house. I've had to give up driving because I can't grip the steering wheel tightly enough, or turn to shoulder check traffic. My wonderful sons have hired a driver for me, but what's the point of going somewhere if you can’t walk once you get there? 

This wheelchair is not “confinement” to me, it’s liberation! I can actually go to the mall, to the library, go clothes shopping, go for walks, do things I have steadily lost the ability to do over the last 15 years! I can’t tell you how many friends I’ve lost because they wanted to meet, walk the length of the mall and have lunch. It’s almost impossible for people to understand that while I can walk inside the house, I actually can’t walk any distance. 

Believe me, by the time you need a chair to get out of the house you’ll see it as liberating. It’s like a big part of my life has been put on hold, and now I’m finally going to be able to move forward again. 

Tuesday, May 22, 2018

A Long-Awaited Reunion

Over the years we had 35 foster children, all boys except for one girl, and she was the last. Let’s call her Jane. When we met - and my memory is a little hazy because this was over 40 years ago - she was about to turn 11 and I was 29.  She lived with the family next door and I saw her come and go every day to school and back. 

One afternoon I was sitting on our porch, watching the boys play with our dogs when she approached shyly and asked if she could sit down. I said sure and scooted over. We talked a couple of minutes. She told me she was in grade six. She had flawless brown skin and long straight black hair of the area’s Indigenous children. She was a beautiful child, but she was dressed in shabby, outgrown, threadbare clothing, and there were holes in her cloth shoes. I knew the children of the family next door were well-dressed in the latest fashions, and felt anger rise in me. They were paid to take care of this child, not to take advantage of her. 

“What grade are you in?” she asked, “I’ve seen your brother (referring to Ian, who was nine at the time) but I haven’t seen you at school.”  

I could hardly keep from laughing. “I don’t go to school. Ian - there - and the little one - Zak - are my sons. I’m little, but I’m a grownup.” 

“No WAY!” she said. “I thought you were just a kid!” And we both started laughing. After that we talked almost every day, and I’d help her with her homework, because she was far behind her classmates. 

A few weeks later I was having a cuppa with her foster mother when she remarked she was tired of fostering and was sending Jane back. I asked who the agency was and got the number and worker’s name. The woman discouraged me. “You don’t want her,” she said. “These Native kids are nothing but trouble.” 

I went home and called the agency. It took about 48 hours for our application to be approved, and Jane made the short journey to our home. She brought her clothes in a brown grocery bag. Every garment she owned was too small, she was tying her panties on by poking holes along the top and threading string through the holes. Her socks were too small and full of holes. I was furious that no one from the agency had been paying enough attention to see that she was being neglected. 

I called the agency and told them I was taking her clothes shopping and I would send them the bill. And then we went shopping. For the 1st time since she’d been in care she got an entirely new wardrobe, from underwear to school and play clothes and several pretty dresses to wear to church, and shoes for each occasion. We had a ball. 

As Christmas approached we learned that the families that she’d been with had never included her in the celebrations. She never had a Christmas gift, or a birthday gift. Tony’s Mom and brother came for Christmas loaded with gifts for all three kids, and we made sure she got as many gifts as our boys did. She was *ours* and we loved her, and treated her as we loved and treated them. 

The years passed, we moved 1,200 miles from where she was born. She grew into a lovely young girl on the edge of womanhood, and in the US my mother became terminally ill. We wanted to go spend her last months with her, because she’d spent practically no time at all with our children. 

We arranged to formally adopt Jane, who was now 16, but the Province had never secured formal guardianship of her, and her biological mother refused to allow the adoption. What’s more she demanded Jane be taken from our home and placed in a culturally appropriate home. It was a blow to our hearts. Zak was only two when she came to us. He didn’t remember a time when she wasn’t part of our family, nor did her understand that she was not his biological sister. Her departure was like a death to him. 

We kept in touch for a couple of years but one day a letter came back, “Moved, No forwarding address”. We tried everything. We wrote everyone who knew her, the agency, went to the tribal office, all to no avail. Once we got the Internet I started looking, still no luck. 

Then, I thought, the last letter we had from her she’s given birth to a baby boy. I started looking for him, and I found him. He told me where to find her. The result was, after a year of correspondence, a very sweet reunion and many happy tears. She, her daughter, and her little grandson came to see us over the weekend and I’m so proud of her. She's gone to college, she has her own business, she’s a strong independent woman in a long-term stable relationship, and I feel so blessed to have been part of her life. I love her so much.  

Friday, May 18, 2018

The Security Geese and the Line in the Water

Winter flipped the coin into “Sprunger” last week, that is to say our daytime temperatures went from 5-7 degrees C (41-45 F) to 25-28 C (77-82 F), the barren and dead-looking trees in the courtyard burst into clouds of pink and white blossoms and the flower beds thrust bright spikes of narcissus, daffodils, hyacinths, and tulips from the brown earth into the sunshine. Hostas unrolled their leaves and fanned them out like green umbrellas. 

Calgary doesn’t have “Spring”. We go from Winter to Summer in a single bound, then, like those times you leave home with the nagging feeling that you’ve forgotten something, and it turns out to be the baby, dressed in his snowsuit, and cinched in his carseat, Calgary goes back and gives us three days of 5 degrees C (41 F), and a cold drizzle, or it snows 53 cm (21 inches) on the 21st of May. Just because we didn’t get a “proper” Spring, or because the weather gods here are sadistic. I’ve lived here 45 years. Nothing surprises me any more. But back to the lovely weather last week.  

While all this magic was happening in the garden, we were doing our own thing. After a week-long paralytic episode, during which I should have gone to the ER, and didn’t, I developed phlebitis in my left leg. This was a sharp and painful lesson that despite my aversion to Emergency Rooms, I do still need to go and suffer the never-ending questions, the blood-gas draws (which are very painful), the potassium IVs, the beeping monitors and being treated as if I was intellectually challenged and know absolutely nothing about my own disease while some Intern, who has never heard of it, goes to look up a single article, probably one riddled with errors, and comes back “knowing everything”.  

But having put all that behind me, on Mother’s Day Ian and I went out for lunch and then, with me in Tony’s wheelchair, we went to the Inglewood Bird Sanctuary. I got to see far more than I’ve seen in ages because I’ve not been able to walk farther than the 1st bench for a long time. We went down river and watched the Canada geese squabble over “their” staked-out stretches of the river. These territorial boundaries, though invisible to us, are obviously very clear to them. 

One pair was grazing on the bank of the river above us. Down in the river another pair was leisurely paddling around, apparently minding their own business. Suddenly the female of the grazing pair stood up, gave an eardrum-rending screech and assuming a threatening posture, began running down the bank towards the water, presumably squawking, “Your goose is cooked!”. The male reluctantly followed. The two of them chased down, beat and pecked the “intruders” until they had retreated well upriver, and across the invisible border.   

We moved upriver to another bench, where we sat and enjoyed the sun and watched the merganser ducks, chickadees and other birds who were coming and going. At one point I looked up and about 30 meters (100 ft) away a couple of very plump coyotes in beautiful condition were trotting past. They were in such good condition they looked as if they’d just come from the dog groomers. But then Calgary is overrun by rabbits. A woman farther down the path, much closer to them, simply stopped and waited for them to pass. As she walked by she said, “I thought they were dogs at first, they were in such good condition!” 

As we turned to go a garter snake, about .76 meter (30 inches) long slid from the grass onto the path in front of us. It was in fine condition, plumb and sleek. It crossed the path at a leisurely pace to begin with, but when Ian started getting close to try and get a photo it put on some speed. In contrast to the garter snakes in the den on our property in BC this one was not dark green and yellow but two tones of brown. It was a lovely snake and seeing it capped off a beautiful walk on a lovely afternoon.  

Wednesday, May 16, 2018

Goodbye Dr. Frank

Last week I lost a dearly loved friend and mentor, Dr. Professor Frank Lehmann-Horn of Ulm University, Ulm Germany. Frank was that rare species of physician, for whom every patient became a friend, but as head of the non-profit organization Periodic Paralysis International I worked with him more closely than most patients, including collaborating on a paper published in a neurological journal, a 10 month-long process start-to-finish. 

Frank was everything most neurologists aren’t, kind, gentle, a patient teacher and listener, and for that Linda Feld and Misty Smith of the Periodic Paralysis Association, and I nominated him for “The Art of Listening Award” from the Genetic Alliance. He flew from Germany to Washington, DC to accept it and said of all the awards he won, and there were many, it was the one he treasured most, because it was from the patients he loved. You can see him accepting the award here. 

His research, both in the complex structure of the muscle and in the genetics of neuromuscular disease were seminal. He offered genetic testing for patients, identifying the genetic mutation in many families. He was the author or co-author of 73 papers in neurology journals, developed new techniques for MRI testing and introduced the use of new treatments for periodic paralysis. 

There is really no way to describe how much he will be missed by each of us who has some form of periodic paralysis.

May his family be comforted by the knowledge of how deeply Dr. Frank Lehmann-Horn is loved and appreciated by all whose lives were touched by his.

To his wife, children and grandchildren we extend our deepest sympathies and heartfelt condolences. I hope knowing how many patients truly loved Frank is of some comfort. His memory will outlive us, as generations not yet born are told how their family’s mutation was identified, and by whom. 

And to that I add this lovely poem by Mary Oliver, because Frank didn’t just “visit” this world. He made an impact on thousands of lives.  

When death comes
like the hungry bear in autumn
when death comes and takes all the bright coins from his purse
to buy me, and snaps his purse shut;
when death comes
like the measle-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say: all my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.
When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened
or full of argument.
I don’t want to end up simply having visited this world.

Friday, May 11, 2018

What Now?

One of the reasons I haven’t posted much recently is that I’ve had little to post about. I can go on about my cats for just so long before everyone begins to brush cat hair off their monitors and yells, “Enough already with the cats!” My “outings” are more likely to be doctor’s appointments than anything else, and do not make riveting reading. 

But I’ve collected quote for years, and I wonder what my two or three readers would make of them.  So I’m going to begin posting some of my favourites
and hopefully others will comment, and we can discuss them, politely of course, because some of them are “challenging” - which is why I saved them when I ran across them. (grin)

Today's quote, from Jean Vanier, who will doubtless be nominated for sainthood when he leaves this earth, is not challenging, but keeping it in mind at all times, and with all people, certainly can be.

What do you think? When someone pushes your buttons are you likely to remember the principle embodied by this quote? I'm not, though I really try - when I remember. 

“We human beings are all fundamentally the same. We all belong to a common broken humanity. We all have human wounded, broken hearts. Each one of us needs to feel appreciated and understood. We all need help.” ~ Jean Vanier