HEART and STROKE

At 11:15 am on June 8^th Ron and I got in our silver Toyota and headed for the Heart and Stroke offices in Calgary. Just to set your minds at ease, let me assure you that I had first consulted Google Maps in the hotel business area and had directions to our destination printed out. In addition, I had charted the route on my 2017 map of the city of Calgary. The distance was comparatively short and my call to Kristine Skogg, CEO Donna Hasting’s assistant, earlier in the morning had ensured that we would be able to unload the books Donna had ordered for each of her managers in the back alley behind the red brick building which houses the Heart and Stroke offices. All went as planned. Ron and I even got an escort to the parking lot where our Handicap Parking Permit was immediately put to good use.

            Ron and I then had the privilege of meeting and talking to Lou and Frank Nieboer. The Nieboers have been married for fifty years, an admirable record made all the more remarkable given that Lou had a serious stroke forty years ago when she was just thirty-four. Today she still bears the effects of her brain attack, but she insists on walking without a cane, although she does lean on Frank’s arm. However, the capacity she misses the most is her biting wit. Somehow her cutting repartee is still missing in action, but, like every other ability she has fought to regain, she is determined to rediscover it as well. Obviously the Nieboers have been a terrific team. Frank is the name-sake and recipient of the first “Heart & Stroke – Heart of Gold Volunteer Award” for exemplary long-time volunteering as Chair of the Alberta Board, member of the Heart and Stroke Foundation of Canada Board, founder of the Alberta Stroke Recovery Association and numerous other contributions. Both Frank and Lou have worked tirelessly to increase awareness and promote stroke recovery in Alberta and across Canada. Their devotion to each other and their work is inspirational.

            After lunch Ron opened his presentation by reading the passage from The Defiant Mind which describes his encounter with a fellow stroke survivor after a therapy session. Although the passage is long I think that it is worth quoting parts of it here, for it (and a couple of other passages which Ron read) generated a lot of insightful questions and discussion about what constitutes effective therapy for stroke survivors. The feedback from Ron’s presentation was very positive with fifteen out of seventeen of the Heart and Stroke Managers rating it the highlight of their Learning and Development Day.

I noticed a woman who had been admitted to the rehab unit around the same time as I was, sitting on one of the blue-matted exercise benches. The gym had emptied and was quiet, the way a museum can get near closing . . . The woman’s head was downcast and her posture was one of total defeat. Before I had my stroke I probably would have turned away, quietly, and left the room.  . . .  She was slumped over as if she wanted to sink through the floor. I sat down beside her and rested my elbows on my knees. This was difficult because my right arm still wouldn’t bend the way it was supposed to and still caused me considerable pain.  . . .

     For over a minute we just sat there staring at our feet, waiting, waiting as you do for the tide to come in or for the sun to set, waiting for the right moment to speak. Everything about the way she held herself worried me.

 . . .  Then I noticed tears running down her cheeks.

     She was pale and her face was carved into the sort of chunks you sometimes see in a Francis Bacon or Picasso portrait. She had a modest beauty, one I suspect she had been unaware of or unconcerned about throughout her life.  . . .  She had two sons and a husband who visited her daily. She was one of the lucky ones. Doted on, from what I could tell.

     . . .

     “You okay?” I asked.

     A foolish question, but I knew I needed to get her to talk.

     “Yes.”

     She gave me a quick glance.

     “No.”

     Now she studied me. Her grey eyes looked hollowed out and seemed to have sunk back into her skull over the past few weeks.   . . .

     “You’re doing so well,” she said. “I’ve been watching you.”

     She tried to smile, but the effort it took was too great, and her lips collapsed back into a grim line.   . . .

     “It’s so difficult,” she said. “I can’t do what you do and we’ve been in here about the same length of time.”   . . .

     “It’s impossible for you to see how you’re doing. You can’t see yourself,” I insisted. “You have to be convinced that you’re making progress. Then you will,” I said.

     I understood this despair. I had gone through this conversation with myself many times. Only other stroke survivors knew what you were going through, but there just wasn’t a vocabulary adequate to describe the ebb and flow of emotions.   . . .

     “I’ve tried so hard. I do everything they ask of me. But I still need the wheelchair.”

     “Every stroke is different,” I said, repeating the one tired answer that remains a constant in stroke dialogues, the one response which she didn’t want to hear from me, not from someone who was actually living inside a stroke.  . . .

     “It takes time,” I said, fumbling over my words,… so much time for all of us. You just can’t give up.”

     “Before the stroke I had two heart attacks,” she said. “Compared to this they were a piece of cake.”

     Then a sad look seeped back into her eyes.

     “I thought it would be the same. After both heart attacks I was back on my feet within a month or two. Not with this, though. I can’t see a way out.”

     As if sensing danger, she visibly recoiled. Like a snail, withdrawing into its shell. She gave me her hand which was cold and bony. Then I felt her body shiver and stiffen, her lungs fill, her eyes stare resolutely into mine, and it was then that I knew that, despite her apparent despair, she would never give up. She was one of those people who in the face of terror find the strength to be brave.                                

     “I just have to accept the fact that I’ll never be the same. I’ll never be the same person I was,” she said. “Part of me has died.”

     She paused to try to take in fully what it was she had just admitted to herself.

     “And I must remind myself that I can’t do what you do,” she added. “As you say, we’re all different. Our brains are different.”(pp. 44 – 47)                           

                                                                                                                                                    

After a short break Kate Chidester made a presentation on “Fueling the Brightest Research” and Dr. Hank Duff spoke about “Why Heart and Stroke Research is So Important.” He talked about the seminal effect the research grants he and some of his colleagues had received from the Heart and Stroke Foundation early in their careers. This funding had encouraged the establishment of a gifted team of heart researchers and specialists in Calgary. The freedom that these scientists were given in their research allowed for the development of a meritocracy, which, through self-selection made significant and serendipitous discoveries.

            Calgary, it seems, is doubly blessed with world class people in BOTH heart and stroke.

              In answer to a question about whether or not specific areas for research funding should be identified Dr. Duff paused to consider his answer.

“No,” he finally replied. “As in all areas of human endeavour, people learn and progress by making mistakes and we must always allow researchers the freedom to fail and thereby to learn.”

            Dr. Duff’s invitation to speak at the meeting had also been part of a ruse to get him to attend. Unbeknownst to him, he was going to be presented with the “Frank Nieboer – Heart & Stroke Heart of Gold Award” by Frank himself. Dr. Duff is the third recipient of this esteemed award since its inception in 2007.

Ron also got a tribute of his own after we got home from our Stroke Month Saga on June 24^th . He received a thank you card inscribed with the following quote:

           

“Ron is insightful about stroke and inspirational to stroke survivors, care givers, volunteers & all those who work in this space.”

           

                                                                                    Donna Hastings

Stroke Month Saga, con’t: CALGARY, Alberta

On Monday, June 5^th Ron and I proceeded east on #3, the Crowsnest Highway. The highway takes its name from the Crowsnest Pass in the Rockies where the road crosses the Continental Divide between BC and Alberta. After Ron’s talk at the East Kootenay Regional Hospital we spent the night in Cranbrook before proceeding to Fernie where we had complimentary accommodation thanks to the hospital staff in Cranbrook. In Fernie we visited with Randal Macnair and Carolyn Nikodym of Oolichan Books, which Ron had founded in 1974. In 2010 Randal bought the press and moved it to Fernie but Ron remains involved as an editor. Both visits, to Cranbrook and to Fernie, were special. The people and the scenery were splendid and between the venues we were often treated to the sight of large deer with very big, brown ears. Logically enough, this species of four-legged forager is called the mule deer.

However, it is not my intention here to dwell on descriptions of the flora and fauna or geological phenomena such as the Frank Slide. Nor will I comment on my faux pas in consulting a map of BC and Alberta published in 1998 when planning our route from Fernie to Calgary along Highway #22. Nor will I describe the fits of frustrated frenzy the author of The Defiant Mind threw when he realized that he was headed back to the Rocky Mountains and not to Calgary. Also, I will omit any mention of the difficulties one is likely to encounter when asking for directions at gas stations in Calgary. Suffice it to say that I did not encounter a local, at least not a local whose first language was English and who knew the city like a chuck wagon driver at the Calgary Stampede. I shall also refrain from describing the logistics involved in arriving at 1804 Crowchild Trail, the address of the Best Western Plus Village Park Inn, where we had reservations in hand, my cousin Cheryl being away on a hiking tour in the bucolic Tyrolean Alps. I shall merely note that when the weary traveller arrives at the above address, he or she will whiz by the aforementioned hotel, which can only be accessed by a service road known only to locals in the know. Instead, I shall simply remain grateful that somehow we found our way to the hotel, marriage in tatters but luggage intact, and happy in the knowledge that it was only 4pm; that Ron did not have to be at the reading at Shelf Life Books until 7pm; that Noreen Kamal and her husband were picking us up at the hotel at 6:30pm; and that I would not have to drive.

Recognizing that June was Stroke Awareness Month, the event at the bookstore had a unique format. Ron’s reading was complemented by Dr. Noreen Kamal, a Researcher and Adjunct Assistant Professor at the University of Calgary, the engineer who is responsible for implementing the world-leading stroke treatment now available throughout Alberta; and by neurologist, Dr. Amy Yu, who graciously stepped in on short notice for Dr. Michael Hill who had been called away to Hamilton and Toronto. The women were there to comment on stroke and to answer questions from the audience. The answers they gave were extremely enlightening, all the more so because their Department of Clinical Neurosciences at the University of Calgary is world renowned. Dr. Hill and his team led the international research and randomised trials for endovascular thrombectomy for large vessel blockages in ischemic strokes. Using this procedure a person suffering from a clot in the brain has a tube inserted into a blood vessel in their groin which can then be sent all the way up into the brain where a stent is released into the blood clot. Then the stent and the clot can be pulled back down the tube and out the blood vessel in the groin. Doctors Kamal and Yu are intimately familiar with all aspects of stroke treatment and understand how and when endovascular thrombectomy may be applicable and how effective the treatment can be in substantially reducing the disabilities which typically result from strokes. Given the diversity of people in the audience–poets, writers, caregivers, stroke survivors and readers–the event was exceptionally informative and enjoyable. A big thank you to poet Tyler Perry, author Betty Jean Hegerat and Shelf Life Books for arranging this evening and to Bob Stallworthy for reading some of his powerful poems written from the point of view of a caregiver.

IPPY UPDATES

The July 2017 Newsletter of the Independent Publisher has just featured a review of The Defiant Mind. To read “Once Upon a Time an Author Had a Stroke” click on the link below:

http://www.independentpublisher.com/article.php?page=2209

And, if you are interested, the review is also mentioned in Jim Barnes Editorial:

http://jenkins.dmplocal.com/main/index.php?action=viewsenthtml&id=10319&ids=715c4a9ea498b62bcc9a3a5db7b5666d0a0dd3a2

LOCAL and LOCO

On Friday, June 2 Ron and I left Nelson rather earlier than we had planned to. Word of Ron’s tour had spread and, as a consequence, he had received an invitation to talk at the Kootenay Boundary Regional Hospital in Trail. En route we passed BC’s largest lead-zinc smelter. It would have been impossible to miss the giant, silver, tubular structure which dwarfs the buildings in the town. By following the green H hospital signs, we found our way to our destination without any problems, and, at 1pm, Ron spoke to a gathering of about 20 hospital staff in the comfortable setting of the Board Room. As usual his audience was attentive and inquisitive and by 2:30 Ron and I were ready for a chocolate dipped soft ice cream cone from the Dairy Queen we had spotted in the centre of town.

            After cooling off with our treats, we needed directions to Highway 3 and the road to Creston. At one of the therapist’s suggestions, we had decided to head for the new Ramada Inn there. Drawing on my recent experiences in Nelson, I approached a silver-haired lady in the Dairy Queen parking lot who was heading for her truck.

“Excuse me,” I said. “Are you local?”

“Local AND loco,” she replied.

“Excellent. Is this the road to Creston?” I asked pointing to the road heading east.

“The very one,” she said. “Just follow it up the hill and keep on going.”

We did and, at the Kootenay Pass Summit, we were treated to the sight of a family of Bighorn Mountain Sheep who were grazing by the side of the highway. After a short but steep descent we entered the valley in which the town of Creston is sited. In my opinion, this is one of the most beautiful places in British Columbia and during our three day stay in Creston we seriously considered what it would be like to live there.

Features to recommend Creston:

1. An intact, original, living town centre with free parking, lots of parking spots for the disabled, lots of benches and well-kept flower plantings.

2. No big box stores.

3. Two picturesque grain elevators.

4. An abundance of orchards and farms.

5. A few kilometres drive away from the southern tip of Kootenay Lake.

6. A Wildlife Interpretive Centre near a wetland on the edge of town.

7. Tim’s Fish and Chips where the staff wear T-shirts sporting “Oh my Cod!” and “Just for the Halibut,” and the portions are double what you expect.

8. A wonderful, refurbished recreation complex, with a new swimming pool which has wheelchair access for the disabled.

And, most importantly for Ron and me, we got lots of REST in C-rest-on.

            

THE KOOTENAYS

Ron and I were late leaving Osoyoos. For some reason I was unable to repack the trunk of the Toyota in a timely fashion even though we were two cartons of books roomier. (Did I mention that I got 40% in mechanical aptitude in high school?) Also, I had not properly registered the fact that we were due in Nelson at noon, and I had been taking my time with our departure. Nonetheless, after tossing the bed bar in the back seat, I finally got the trunk lid shut and Ron survived the knuckle-biting ascent out of Osoyoos. (Did I mention that he is not fond of heights?) Unfortunately we encountered two construction delays and one torrential downpour. Consequently it was almost 1:30 pm when I parked the Toyota on one of Nelson’s main streets and got out to ask for directions to the Nelson Public Library. (Did I mention that we do not have a Smart Phone or SatNav?)

            Unfortunately the first three people I encountered on the busy sidewalk were tourists. I changed tactics. “Are you local?” I began to ask. Eventually locating a local, I discovered that we were only a couple of blocks away from our destination. Fortunately our host and stroke recovery facilitator, Marg Dietrich, was on duty at the library till 2 and she had been confident that we would turn up soon or later. After meeting librarian and author, Anne DeGrace, and unloading some books for the evening reading, Marg, Ron and I left to spend some down time at Marg’s house where Ron and I had been invited to spend the night.

Marg drove. Like most of the streets in Nelson which boast a steep slope, her driveway is very steep, has a sharp U-turn at the bottom and the top, and is difficult to find if you are not a local. The entrance to her driveway is also right next to the self-same steps that Steve Martin skipped down in the opening scene of Roxanne. I was thrilled to see them. After enjoying a cup of tea and some of Marg’s home-made rhubarb coffee cake, Ron lay down on the living room couch to rest. Marg and I made a brave attempt to sit out on her deck but the storm that Ron and I had battled earlier blew in and she and I retreated to the TV room and shared a wonderful bottle of local dark ale. (Did I mention that Marg and her husband had started the all organic Nelson Brewing Company?)

There were six of us for dinner at Max & Irma’s Kitchen. Writer Tom Wayman and author Barb Curry Mulcahy had driven in from the Slocan Valley to visit with Ron before the reading and Deborah Rusch had come to support Marg and provide informational materials about the Living with Stroke program after the reading. Meanwhile, I happily concentrated on the delicious pizza.

 Attendance at the library was excellent. There were over thirty people present despite the fact that another local author, whose mystery novel had just won a prize in Europe, was also appearing at a nearby venue. Ron’s reading was excellent. The audience asked lots of questions. Book sales were good and my long time friend, Suzanne, and I even had a chance to visit. 

LAKE COUNTRY

 After the Live and Learn session at the hospital on Monday, May 28^th, Ron had a book signing scheduled at Bookland in downtown Vernon at 3 pm. Deb and John, the volunteer stroke survivor who leads the Living with Stroke sessions in Vernon, also set up a table near Ron to give out information about their program. By 3:30 pm it was obvious to all of us that our presence was not going to draw a crowd. No doubt this was due to the intense heat. The outside temperature registered on our Toyota’s dashboard had flirted with 40 degrees Celsius. Consequently I was prompted to quote from Stephen Leacock’s piece “We Have With Us Tonight” from My Discovery of England in which Leacock notes that it had been his experience that audiences are very fickle creatures. They will not turn out if it is too hot, too rainy, or too cold, or even if the event is free. And, if there is a hockey game on, you might as well forget the whole event all together.

            At the mention of Stephen Leacock’s name, John perked up. John had had his stroke seventeen years ago and today appears to have made a full recovery (although he does confess he still has trouble reading.) However, long before his stroke, he had run a newspaper in the community of Enderby and Stephen Leacock had, for a few years, owned a cabin on a nearby lake. John had often met Leacock in the town, and, as John was able to take Leacock’s disparaging quips about his paper in good humour, the two became friends. I was thrilled to learn this and to be able to claim to have met someone who had actually known Canada’s great humourist. Ron, however, was downcast. By 4pm he confessed that this was the first time he had ever been skunked. Not even one book sold! (Bookland, however, did take five.)

            Fortunately the next day the Lunch and Learn session in the Murray Ramsden Boardroom at the Kelowna Regional Hospital was packed and the book signing at Chapters in the Orchard Park Shopping Centre later in the afternoon was a success. Local Living with Stroke facilitator and stroke survivor, Jennifer Monaghan, and many members from her groups came to keep Ron busy meeting people, swapping stroke stories and signing books.

            On Wednesday Lunch and Learn was scheduled for noon in the Penticton Regional Hospital. Again, there was a good turn out of hospital staff, and Deb’s and Ron’s talks were well received. Then, we had to dash to Osoyoos where Ron was scheduled to read at the Bits and Bites Café in the Chase Valley Business Centre on Main Street. And here, (omitting a description of the last two of the many unnecessary detours I had taken us on throughout the day) Ron actually arrived only five minutes late. Again Deb had provided provisions–coffee, tea, juice and delicious cookies from the Café–and the local stroke facilitator, Barb Roth, and many people from her group were waiting. Following Ron’s talk and reading the discussion was brisk, as it usually is with stroke survivors and their caregivers. One man in particular was upset with the local policy which requires everyone to report to the closest hospital in Oliver to be seen by a doctor who then decides whether or not a referral to the Penticton Hospital is necessary. This caregiver felt that this delay had definitely worsened the effects of his wife’s stroke. He was angry for, as many of us now know, TIME IS BRAIN, and prompt treatment essential.

            Later that evening Ron and I relaxed over a superb meal at the Campo Marina Italian Restaurant in Osoyoos. However, realizing that we were due in Nelson the next day, I began to wonder if we hadn’t bitten off a little more than we could chew.

(to be con’t.)