Carrying my cross of memory loss

Harry McAvoy is the former Manager, Major Gifts and Corporate Campaigns for ShareLife in the Archdiocese of Toronto. He shares his story of dealing with memory loss.

It is interesting where your mind goes in your darkest hours. I remembered a phrase attributed to my Uncle Basil O’Rourke: “Carry your cross, don’t drag it.” Now, as I carry the cross of memory loss, Uncle Basil is whispering in my ear.

According to my notes, on March 9, 2017 I was working in my downtown office late in the afternoon. I don’t recall the details, but apparently I felt a pop in my head and immediately recognized something was very wrong. My notes give no indication that I even remotely considered the possibility of Alzheimer’s.

Over a few minutes I realized I was having difficulty remembering. I didn’t know what day it was, and I felt numbness in the right side of my head. I am told I asked a co-worker the same question four times. I then said goodnight to my boss and left the office without indicating that there was a problem. I took the subway to a downtown hospital.

The emergency room doctor ordered a CAT scan and quickly ruled out a stroke. He did some cognitive testing and said everything appeared normal. His initial assessment was that I had Transient Global Amnesia. He said go home, take a few days off, get some rest, it will probably pass. A follow-up appointment would be scheduled with a specialist.

The early days were especially frightening. My notes say I was anxious, feeling nauseated and worried about how I would return to my busy life. These thoughts preoccupied me. The more I ruminated, the more my fear and increased anxiety increased.

The specialist agreed with the amnesia theory, although he was surprised it still continued. He said get on with your life and get back to work. There was nothing I could do to help or hinder the healing. Additional tests would be needed.

Unfortunately, the memory loss wasn’t transient. Over several months I visited many doctors and counsellors. Those were scary months because of the uncertainty. I recall someone saying, “No diagnosis means no prognosis.” A doctor added, “Forty per cent of the time we can’t figure out what happened. Try to get back into your routine.”

I was 58 at the time, and richly blessed by God. I was happily married to Jennifer, whom I have lovingly called the Bride, for 33 years. We have five adult children and a teen, and we had just become grandparents, plus we have many good friends and I had a job I enjoyed and found meaningful. My life was full, but possibly too busy and stressful.

Sometime after the March occurrence, as I tried to make sense of what had happened, I came across a note I had written to myself in February 2017. In it I spoke of the stress I had been feeling, a combination of personal and workplace stress. It should be explained, I would often write to remind myself of events or information I considered relevant or important.

I suppose an interesting aside is that I have always complained of not having the best memory. In my school days I was amazed at what others could recall, and I couldn’t. Fortunately, with the aid of strategies, I learned to function well in the workplace and hold senior jobs. When one doctor wondered about my past weak memory, I reminded him I could never have held the positions I did, over many years, if my memory had been that bad.

Living and working with memory loss is like trying to function without all the pieces of the puzzle. Often you recognize a memory slip based on another person’s reaction. There is a look of concern and an expression of disappointment, as if to say, “you don’t remember, do you?”

After my many months of struggling, a memory specialist suggested I might be dealing with a stress reaction or possibly Alzheimer’s. And there it was — the scariest of scary. Alzheimer’s. He said time would tell. My next appointment would be several months away.

My reaction was probably a very ordinary one. I thought this can’t be happening, I have too much to live for, I still have so much to do, and what about my family? In prayer I pleaded with God. I asked, why? Why me and why now?

I have seen Alzheimer’s up close. It was the thief who stole my father’s memory. Anyone who has endured the slow fading of a loved one’s memory knows the associated heartbreak. I have heard Alzheimer’s described as the long goodbye, and this is brutally true. According to the Alzheimer Society of Canada’s website, more than 500,000 Canadians are living with dementia today, and 25,000 new cases are diagnosed each year.

Eventually my job ended, and I was moved to long-term disability. This painful outcome compounded my sadness. What would I do? How could I provide? There were so many questions, and too few answers.

I spent time in prayer in front of the Blessed Sacrament. While I sat quietly with Jesus, worries and what-ifs wrought havoc on my thoughts. Anger was also a regular visitor. It felt as if there was so much to be angry about. Although my kids were older, I was still a husband and father, a provider, and often the go-to person. Not so much anymore. When I was alone with Jesus, I would talk out loud of the pain and lost dreams. Other times I would kneel staring at the tabernacle with tears in my eyes.

Romans 8:28 appeared often in my prayers. “All things work for the good of those who love God.” Still I wondered, could “all things” possibly include memory loss, even Alzheimer’s?

One day it occurred to me, I could use this experience to witness to God’s goodness and love. I could write and speak of how faith has helped me carry this burden. Writing and speaking would not be such a leap, as both have been part of my work and volunteer life over many years. These activities would help me to remember, for my own sake, and please God, encourage other “grey hairs” frightened at the reality, or even the prospect, of any type of dementia. Hopefully, these efforts would even bring comfort to family members who suffer terribly when memory loss steals their loved ones away.

I carry a pretty big cross as I wait, perhaps for several months, for a final diagnosis. I am grateful that so many have come to my assistance. While I remember Uncle Basil’s good advice, I have those days when dragging my cross is the best I can do. On other days, when I stumble and fall, I think of Jesus and I know He understands.