Bearing Witness While Living with Chronic Illness

Warehouse picture 2016By Oz Cole-Arnal, former professor emeritus at Waterloo Lutheran Seminary

Over a period of roughly forty-five weeks (with an interlude of thirty weeks), I have come to know and deeply respect Tony Bender (photo right). We are both part of a Parkinson’s group to help determine what may help people live with this degenerative physical disease and its challenges. Over time this group and its trainers (university students working on graduate degrees in kinesiology), under the direction of Dr. Quincy Almeida (internationally renowned Parkinson’s expert) have become a team of mutual support and respect. This Friday two days before Palm Sunday, Tony opened his heart in glorious vulnerability with this powerful lament which he read to us all before Kish, Jordan and crowd led us in our “boxing” and related exercises:

I don’t like what Parkinson’s is doing to me

At my worst times, and fortunately I hardly ever have these times, I wonder if it is worth it to keep going. I think it would be easier if I wasn’t here anymore. Like I said I hardly ever think like this. However to say I never have would also not be true.

I am tired:

I am tired of my balance being poor.

I am tired of my feet shuffling.

I am tired of not being able to walk correctly anymore. I think everyone looks at me when I m walking. That is my problem. I sometimes think I’m getting paranoid.

I am tired of telling people I don’t feel well. However, I don’t always want to say I am feeling well if I am not. I am sure this doesn’t make sense but I sometimes feel I have failed.

I feel bad about what it has done to my primary relationship (my dear Connie).

I feel bad that we have both just retired and now we should be able to do all kinds of things but often I don’t have the energy to do them. It would be great to go to movies, go to concerts, walk uptown and explore restaurants and to entertain.

I feel bad about all my losses before I should have to deal with them.

I am angry! I have times when anger dominates my feelings. I just want to spit bullets.

I am afraid for the future. Will I be able to enjoy my retirement or will I just exist? I feel really ripped off.

And yet as I live through the valleys of anger and grief I know God that you are there and you are with me.

I wake up from dreams with the song “When peace like a river—it is well with my soul” singing in my head—where does that come from? Somewhere in the depths of my being there is a faith grounded in something that is much bigger than me.

I am thankful for the gift of each day that God grants to me. I am thankful for each sunrise and sunset.

I am thankful for relatively good health. I am thankful for each day that God [gives] that I can still look after myself.

I am thankful for the ability to still be able to look after myself.

I am thankful for the ability to still be able to do exercises.

I am thankful that I can still play guitar.

I am thankful that I can still drive.

I am thankful that I can still swallow without any difficulty.

I am thankful that I can still read.

I am thankful that I can still volunteer.

I am thankful for all of my friends.

I am thankful for all the medical/health resources I have been able to access. I am thankful for neurologists, neurosurgeons and all the researchers who have developed neuro transmitters.

I m thankful for the resources at the MDRC (Movement Disorders Research and Rehabilitation Centre) at WLU [Wilfrid Laurier University]. I am thankful I can participate in their research programs.

I am thankful for my faith. I am thankful that I can be part of a faith community.

Above all I am thankful for the gift of life with all its joys and challenges.

Through the struggles of living with the reality of a chronic illness I know that Thou art with me—my Sanctuary.

There is so much, both profound and powerful, I could say about my brother in faith and solidarity, but space will not permit it. But I feel compelled to cry out in joy and solidarity, through my tears, that Tony’s vulnerability before us all catapulted our team into a leap of closeness engineered by his vulnerability. In this “Lament” Tony incarnated the true strength of his faith, that true strength cemented in trust and vulnerability. When he was done, some of us hugged or reached out to physically touch each other, others choked out powerful words of solidarity. Our trainers demonstrated their own profound humility by thanking us for being a part of their lives. Yes, we were already a caring and mutually supportive team, but Tony’s “Lament” transported us to a qualitatively deeper solidarity which mixed a sharing of pain and joy, of defeat and resolve. Thank you, dear brother, for transporting us into that “valley of the shadow of death” where “you [God] are with us!”–Oz Cole Arnal

From 1979 to 2018, Tony Bender worked at House of Friendship in Kitchener, Ontario. House of Friendship is a non-profit social service agency. It has significant support from many of the local faith communities. He had many different roles but spent most of time in administration of the food assistance programs, coordinating volunteers and managing Gifts in Kind.

In 2010 he was diagnosed with Parkinson’s.

Tony is now retired and enjoys reading, playing guitar, gardening and working on genealogies.

He is married to Connie (September 23, 1978) and they have 2 adult children (Luke and Adam).

 

One thought on “Bearing Witness While Living with Chronic Illness

  1. Thank you and God bless you for this.
    In the past few months I was diagnosed with Dementia and am learning to live a new way. I feel it’s moving faster than I had expected and my emotions fluctuate between joy and tears, In one day (and sometimes one moment I rejoice about the eternal hope I have in God and then I find myself in tears when I think about my life, as I have known it quickly changing and ultimately coming to an end here.

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