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