Glob

Golb – that’s blog spelled backward which is exactly how I feel when dealing with such “modern” ways to communicate. How about rettiwt or koobecaf – those too are backward and are even more accurate about my skills in using them. When Mental Health America of Licking County first got computers – how many years ago? – our staff gave me an etch-a-sketch. Their message was loud and clear “get with it girl!” Even though I ordered the computers and support stuff to use them, they tortured me over being backward about these modern day tools. Of course today we can’t do without them.

I would encourage you to read a wonderful blog. It is on our website and written by Graham Campbell, Associate Director. He is a very talented writer and has so many fabulous things to say. Let me know what you think of our website: www.mhalc.org . We can always make improvements. It is our mission to promote good mental health, wellness and for victory over mental illness. Get on our bandwagon and contribute your time, your money, your talents. I can be reached at 740-788-0302.

Paddy Kutz, Executive Director, Mental Health America of Licking County

To the End of Love

I went to visit my Aunt Marjorie and Uncle Bill and they shared something very profound with me:  in preparation for death they taught me an important lesson about living.

Marjorie is in the last act of a 5-year battle with kidney failure.  Most of her factory equipment is gone and what little is left doesn't work well enough on its own.  She has been on home dialysis and on hospital dialysis and at 86, she is nobody's ideal candidate for a transplant.

For the last few months she and Bill have been making every-other-day trips from Truro down to Halifax where she undergoes a 4-hour session with refrigerator-sized dialysis machine.

I had no understanding of what dialysis was prior to this trip.  I had seen episodes of "House" and "Medical Center" and "Marcus Welby, M.D."  I thought that it was a pretty passive process where they hooked you to a machine and you just sat there until the final spin cycle was over.  It seemed like you could read a book, or watch a movie and when you were done and your blood was all clean, you could go on to your next appointment.  What I didn't understand was that there is a fair amount of suction required in order to get your blood into the machine and the whole experience can literally leave the patient failing drained.  Marjorie described it as feeling like having the life sucked out of her.

Repeated trips to the dialysis unit have taken their toll on Marjorie and her blood vessels.  Earlier this month, her veins collapsed and they were unable to hook her up to the machine.

It was while sharing this news with me that my mother let me know that she thought her sister was ready to stop fighting.

It’s uncomfortable for me to even write that sentence. I don’t come from people who make those kinds of decisions. I have no experience of family members preparing for death. I know only prolonged illness, or sudden death. I know about processions to the bedside and to the hospital and how to be awkward at a reception. And I know about remote death where the relative got sick and died out of site, so all there was to experience was the service and the absence of their presence.

When my dad learned that he had lung cancer, it seems that he decided pretty quickly that it was a death sentence. From diagnosis to memorial service was, for me, a slide show: a series of images and impressions that I continue to try and make sense of.  Marjorie’s illness and some additional health conditions much closer to home have made my mom get her affairs in order and to have “the talk” with me about what she does and doesn’t want when the time comes. But even this seems disconnected from my reality. I’m not certain if it was for my benefit, but when we had the talk, when she showed me where papers were and introduced me to Ed who could help me when the time came, she said she was perfectly comfortable with the whole process. For me, it was like I was a tourist in the conversation: in town for three brief days and then back to my own planet.

In my family, we have a pretty limited vocabulary:  we either don't talk much at all, or we go right to the grand gesture--there is no in-between.  It goes from "Could you pass the salt?" to that scene in "The Godfather" where Michael tells Fredo, "You're not a brother, you're not a friend. I don't want to know you or what you do. I don't want to see you at the hotels, I don't want you near my house. When you see our mother, I want to know a day in advance, so I won't be there. You understand?."  No passing "Go", no collecting $200.  I am largely absent from Marjorie and Bill's life for two decades and suddenly I want to be on their doorstep in forty-eight hours

This would be the part where I try to explain some of why there was such a gap in my relationships with my aunt and uncle and my three cousins. If I had any skill as a writer, I would carefully illustrate my good intentions and the missed opportunities so that I strike a balance between looking bad and being too self-serving. The simple truth is that for too long we did not affiliate with my mom’s family. My maternal grandmother stayed in New Brunswick even when both her children moved to Quebec. And prior to relocating to Nova Scotia, my aunt and her family did not live all that far away, but they might as well have been living on Mars. We would see them a few times during the summer, but not that much. My cousins are all older than me and there was never really much to talk about.

We spent more time chasing relationships with my father’s side of the family where there was even less to talk about and even greater differences in ages and, as a result, we let my aunt’s family slip away.

I was also driven to try and close some of this time and space distance because, having turned 50 this year, I have become acutely aware of being disconnected from my own life and history for too long.  I made choices that took me away from my family that were, at the time, intended to give me some perspective, but instead have left me feeling rootless and alien.

These questions of my personal identity and place in the world may be the refuge of the chronically self-involved, but they are nonetheless powerful.  I am very lucky that I have been able to share the last 23 years of my life with the same person.  We have a good life together, but there is still the other 27 years to try and make sense of and for that you need family.

That's where I was when my mother called, so the decision to go was clear.

As I was trying to book my flight, my mother called back and said that end-stage kidney failure might not be something that my aunt and uncle would want to share with a long-distance relative.

A fair point. I know first-hand how painful it can be to pass a kidney stone, I could only imagine how much more painful complete failure might be.

It was at this point that I elected to do something completely out of character: I called my aunt.

I’m not sure where this idea came from, probably from my wife--she is fluent in many strange forms of communication--but it was the right call and also my first indication that I would have no template for my visit, no relevant frame of reference.

I called and offered my services to be a “relief driver” for their next trip down to Halifax. My only condition was that if I was going to make the trip, my aunt had to be there when I arrived: no early departures! She agreed and reservations were made.

My mother had prepared me for the conversation by sharing that she had spoken to Marjorie the previous day and that she was, during that call, at a very low point. She didn’t want to go on and, to my mother’s understanding, was ready to catch the next bus out of town. (Stop me when the metaphors become too much.)

The Marjorie that I spoke to on the phone the following day was apparently a much different person. She was clear and focused, practical and deliberate. She and Bill would be happy to see me, but they had a schedule that was driven by her illness and that would determine what was and was not possible during my visit.

Reservations in hand and the prospect of a series of short-hop flights punctuated by extended waits in Detroit, and New York City ahead of me, I began to worry about how to behave once I got there. 

I went through all the possibilities:  the wailing, the gnashing of teeth and the rending of garments.  I thought about the first scene in "Citizen Kane" complete with the solitary house on the hill and the heavy curtains and the gloom.  (I watch a lot of movies.) It didn't help that I got into Halifax late in the evening and had to drive an hour to get to Truro.  Too much time to think. 

What do you say to someone you haven't seen in almost a generation and then, when you finally do show up it's because they are at the end of their life?

The laughter caught me completely by surprise.

I was there for two days and, aside from the trip to Halifax and the dialysis session, there was a lot of laughter.  Marjorie and Bill and I had a laugh.  There was laughter when my cousin Iris and her husband came by.  More laughter when cousin Audrey and John and their dog Enzo took Bill and me to a classic car cruise-by in Halifax.  And when cousin Karen came on Sunday..., well you get the idea.

Instead of finding Marjorie husbanding her energy in preparation for her trip to Halifax, I found her in her chair, by a bright sun lit window looking at her iPad. She wanted to hear about my trip and about what I was up to and about how I had spent my morning prior to showing up at her door.  She was a sponge:  thirsty for information and for stories and for life.

I had been prepared for a series of brief visits so as not to tire Marjorie.  She had said herself at one point that she was good for about an hour at a time.  But somehow that all changed when I arrived.  They had a  full day planned with lunch, Iris and Greg's visit, a field trip to see the tidal bore and then an evening trip to Halifax for dialysis, cousin Audrey and the car show. 

This was not denial or misdirection; there was no anger or bargaining:  this was acceptance.

One of the first things that Bill did was show me the boxes of sterile fluid that they had stacked in their breakfast area and the machine that they had relied on when home dialysis was still feasible.  His life's work as an educator was on display as he explained each step in the process needed to connect her to the machine.  His background as a Maritimer was on display as he expressed regret at having to discard all of the unused and unusable inventory.

No, there was no ignoring the fact that Marjorie was sick and that she was wrestling with deciding how much longer she would continue to fight.  She and Bill had been dealt a crappy hand and, instead of turning away, they were determined to face it and make the best of it that they could.

I should have expected nothing less.

I recognize in myself a painful habit of living in tenses other than the present.  I dwell on the past and wait for the future and am generally ignorant of the present.  Marjorie and Bill, and from what I can tell about Karen, Audrey and Iris, live in the present.  To a certain extent, kidney disease has dictated that response.  There are good days and bad days, bad hours and worse hours, but I think they are able to cope as well as they have because they are very familiar with the present tense.

After lunch. after bearing witness to the tidal bore and after a brief conducted tour of Truro, it was time to go to Halifax.

Watching Bill get Marjorie ready and get her into the car was like watching a precision military exercise.  It seemed to happen purely on muscle memory.  I wanted to be helpful, but I quickly recognized that I was in the way.  It was not that I was impeding the process, so much as they knew what to do and how to do it and having an extra hand would be like having an extra hand--they couldn't quite figure out how to work it in.

He helped her from her chair into her walker, from the walker to the lift that helps her down the handful of steps to the carport and then there is the wall and the car itself to support Marjorie as she takes the painful steps to the passenger seat. 

Once she is in and secured, Bill seems to spring into his spot behind the wheel and, suddenly it seems, we are on the road down to Halifax.

It's a pretty quiet trip.  Not too much talking.

Occasionally, Marjorie will tell Bill where to turn or whether there is traffic coming from the right, but on the highway, it's pretty quiet.  It's as if Marjorie is preparing for the ordeal ahead of her.  Every so often, Bill reaches over and pats her hand, but he doesn't interrupt.  Again, it seems that repetition has taught them the best way to manage this aspect of their lives.

Marjorie has a counter she keeps with her in the car.  It's one of those hand-held mechanical counters that used to be a popular way for counting the number of people in a line at tourist attractions and movie theatres.  They use it to count recreational vehicles--campers and travel trailers.  When I catch a glimpse of the reels, I see that she is closing in on 400.  It's a distraction and also an indication of how unpleasant the ordeal of dialysis is.

We pass a water tower and Marjorie quickly calculates their anticipated arrival time in Halifax from this, their half-way marker.  Turns out she is within a minute of her projected ETA.

Once we get off the highway, Marjorie is like an on-board navigation system as she directs Bill to the hospital.  Right turns, left turns, alternate routes, anticipated obstacles, special events:  she seems to account for them all.

Marjorie's dialysis clinic is in a part of Halifax that seems mostly closed down for the weekend.  We are able to park less than 50 feet from the front door and are the only car in the lot. 

After we check in, there is a bit of a wait while they prepare the machine.  Marjorie and Bill sit quietly in the waiting room with other patients and family members waiting for their name to be called.  Surprisingly, the television is set to CNN and they are currently obsessed with some very domestic American news story.  Everyone and everything, including the TV, seem to be occupied with their on proprietary thoughts.

Occasionally, Marjorie and Bill will recognize a familiar face and greetings are exchanged.  There are "regulars," even here.

Finally, her name is called and we wheel Marjorie into the clinic and to the hospital bed that will be her home for the next few hours. 

Once she has been safely maneuvered into bed and her wheelchair parked, Bill and I are dismissed.

We go to dinner, we go and meet Audrey and John and Enzo, we go so that Marjorie can concentrate on what is ahead of her.

When we return three hours later, after dinner, after a cruise-by car show, after spending a couple of hours with Audrey and John and Enzo, there is still about an hour to go before Marjorie will be ready, so we sit in the waiting room.  Bill starts to read the paper, but quickly falls asleep. 

While we were gone, someone has changed the channel on the television and, instead of CNN, there is an episode of Survivorman.  This is the show where they leave a survival "expert" in an extreme environment and then we watch as he adapts and survives and finds his way back to civilization.  So as not to be confused with the multiple variations on this theme, this one is produced without benefit of a production crew.  The survivor is his own camera crew. 

In this particular episode, he was in an arctic environment.  He has to search for food and make his own shelter and find drinking water.  In addition, he has to set up cameras, change tapes and make sure he gets the shot.  There are several instances where he shoots himself climbing a hill to get his bearings, or pulling a sled across a frozen body of water and when he is done with these activities, he has to go back and get the camera.  So, in effect, he has to "survive" everything multiple times. 

The longer I watched the show, the more it made sense to me as a way to understand what was happening around me.  The TV host, Marjorie and Bill were all engaged in trying to adapt to their environments, make sense of their surroundings and make it through the day. 

I don't think this was how Bill imagined spending his Saturday nights, but to look at him is to understand that he would much rather be sitting in this green and yellow waiting room than be anywhere else if it meant that he would be without Marjorie.  The whole time I am with them, he is unfailing bright and cheerful and positive.  It would be ridiculous to infer that there are no bad days, but he seems determined to make the best of whatever happens and that is a more powerful survival technique than anything happening on the television.

Before the show was over, before the Survivorman made it back to civilization, Marjorie was done.  As she said later, she couldn't take it anymore.

The nurse wheeled Marjorie over to where Bill was still sleeping and she prodded him awake.  Intermission was over and it was time for the second half of tonight's play:  the return trip to Truro.

This is what they do:  drive to Halifax, drive home, spend a day recovering and then repeat.  It used to be worth it because it gave Marjorie a good day, some respite from the pain and discomfort, but now the recovery is no longer complete and the good days are harder to come by.

I am overwhelmed by their perseverance and their commitment to one another.  As Marjorie decides what she wants to do, or stop doing, it is a personal choice, but it is not a selfish one.  She doesn't want to keep putting herself through this process and she does not want to do it to Bill.  As for what Bill wants:  he just wants Marjorie.

My mom told me that, if I got a chance, I should go downstairs and see Bill's desk.  Bill took me down and showed me the wall of photos over his computer.  There were photos of my grandfather and of my grandmother's family, but the photos to see were the ones on the table to the right of the desk.  These were pictures of Marjorie, of how he saw her when they were at the beginning of their love.

And now, having ticked off all of the options covered by the wedding vows, richer and poorer, health and sickness, through three kids, grand and great-grandchildren, they are coming to the end with heads up and eyes wide open.

I am so grateful for the opportunity to visit with and learn from Marjorie and Bill.  They are an example and an inspiration.

There is no neat ending to this story, no tidy resolution.  It will just stop and it will be up to all the parties concerned, as it is to the reader, to make their own sense of it.  I will, instead, leave you with the words of a far better writer, Leonard Cohen. Like most other things in my life, I discovered him too late. His 1984 song,  "Dance Me to the End of Love" seems to capture best what I am trying to say.  Cohen's rich, world-weary voice is a perfect match for the lyric that reads in part:

Dance me to the wedding now, dance me on and on
Dance me very tenderly and dance me very long
We're both of us beneath our love, we're both of us above
Dance me to the end of love
Dance me to the end of love

Dance me to the children who are asking to be born
Dance me through the curtains that our kisses have outworn
Raise a tent of shelter now, though every thread is torn
Dance me to the end of love

Dance Me to the End of Love - Amazing videos are here

--Graham Campbell
Associate Director