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| Mark Davis Pickup |
In early March of this year I was invited by the Catholic Organization for Life and Family (a ministry of the Canadian Conference of Catholic Bishops) to speak to a seminar they hosted in Canada's capital city of Ottawa, Ontario. The topic they gave to me was "I am More Than My Handicap". I must acknowledge that some readers may find the use of the word handicap offensive. It was certainly not meant to be: Keep in mind that the organizers of the conference were French and the word has a different context for them. You will notice that I used the word "handicap" and "disability" interchangeably for that reason.
My speaking notes from that presentation are below. The presentation concluded with part of a Leonard Cohen song Anthem. I only quote the Lyrics below. Was the address well received? It must have been. The audience responded with a standing ovation. Continue reading. -- Mark
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"I AM MORE THAN MY DISABILITY"
I am more than my disability. That’s
what I was asked to speak about. Before I begin I would like to clarify that
everyone is more than their circumstances, whether they know it or not. I should tell you something: Music is a huge
part of my life and you will notice that I make a few references to music.
It can be a therapy of its own.
People are more than their physical
state or their professions or vocations. You are somebody’s son or daughter.
You may be somebody’s brother or sister, somebody’s parent or grandparent. You
are a citizen, a neighbor. All of these aspects of your life − combined
together with your life experiences – help define and balance who you are. If
one aspect or role is too dominant the others may suffer. For example, you may
know someone who is workaholic and neglects his spouse and children.
CAT'S IN THE THE CRADLE
I remember a hit song from 1974 Cat’s In The Cradle, by Harry Chapin. It
told the story of a young man who was too busy with work and had no time for
his son. His son grew up to be a young man who did not have time for his old
father. People my age will remember it.
We’ve all known men like that.
If you are a Christian, your
relationship with Christ should be at the center of who you are and should
govern and colour how you behave in every other part of your life, or it
should.
I am more than my disability. My
disability is only one reality of my life but it does not (must not) define me.
I have to be more than my disability or it could overtake and consume me. For nearly half of my life I have lived with
degenerative multiple sclerosis (MS).
When I was diagnosed at the age of thirty, I was healthy, athletic and
active in family life with a wife and two small children. I had a promising government career.
Until the MS came, I lived a privileged
life beginning at birth. As a young adult, accomplishments came easy and I foolishly
believed I was a winner.
Unfortunately I let my life get out of
balance. There was a little too much
pride in what I could accomplish.
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| Dad/daughter moment 1979 |
By the age of 27 I was Director of
Community Services for two Alberta municipalities before moving to the federal
civil service. I expected to be rewarded with an equally rapid advancement
there. In retrospect, I heard Yes too
often and not enough Nos. That was
not good. I developed a sense of entitlement and the expectation of getting
what I wanted in life. At the age of 30 I learned the hard way that winners can
become losers overnight.
In March of 1984 I was diagnosed with
MS. My prospects for upward mobility stopped as my health concerns became
serious. Mobility became an issue very quickly; I was also affected
by a profound fatigue that curtailed my professional and home life. In those early days with my disease, it took a
course that is often referred to as exacerbating-remitting. It was extremely volatile: Violent attacks
would come, taking away function (the use of a leg or both, the use of a hand,
visual or hearing impairments, the loss of speech) then remit and return most
but not all the previous physical function.
The right side of my body was primarily
affected. There was no guarantee I would get lost function back – and I knew
it. This is why I said my disease and
disability could have overtaken and consumed me.
After being as healthy as a horse for 30
years, it was a terrible shock to develop a serious chronic and degenerative
disease. At about the two-three year point with MS I was devastated by the
catastrophe that threatened to engulf me.
My sorrow was so deep, my heartache so sharp, my internal soul-pain so
pervasive that it began to skew my perceptions of my own humanity and
self-identity. And so despair of my circumstances began to set in.
Had I not been surrounded by loved-ones
who held up my value (even when I doubted it) ... I might have considered
suicide (assisted or otherwise).
I was not accustomed to being stared at
in malls or grocery stores. I was not accustomed to having people avoid
me. Like another old song says, it’s not
that old friends were unkind, just hard to find.They stayed away in droves. I suppose seeing me spastic or in a
wheelchair, or using canes made former friends uncomfortable. Perhaps it reminded
them of their mortality or how uncertain life can be. To keep their friendship
with me would highlight their own inner fears and prejudices.
INCLUSION/EXCLUSION
Perhaps they were afraid that my new
uncomfortable reality might challenge their established and comfortable reality
─ a reality to which I was previously a part of and then found myself outside
their reality and so I was shut out of their world. I discovered that I was unwelcome by their
avoidance of me; previous warm friendships turned cool and politely aloof. Groups where I had previously been welcome
quietly closed their doors, leaving me on the outside. I was no longer one of
the boys. In his brilliant and penetrating essay entitled The Inner Ring, C.S. Lewis wrote about the human desire to “belong”
to certain social groups and the terror of being excluded from them. He
described the rings of groups in society like skins of an onion. We may at any
point be included in or excluded from a social ring, or about to pierce through
to a desired ring or in the process of being thrown out of one. Lewis said:
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| C.S. Lewis |
“I believe that in all men’s lives at
certain periods, and in many men’s lives at all periods between infancy and
extreme old age, one of the most dominant elements is the desire to be inside
the local Ring and the terror of being left outside.”
The desire to be part of a society of
people may not necessarily be for the snobbery of high life. A man may desire to be part of a particular
grungy artistic côterie or some intellectual clique. It’s
one of those parts of life people rarely speak about – particularly when
they are trying to get into a new group − when they are still one of “them”
rather than one of “us”.
Do you know what I am talking about?
It’s a social system that is not written down but drives human motivations. I
would think that in this very room some of you are trying to get into a
professional or social circle of friends or you are a power broker within a
group of people or, too your horror, are being
pushed out of a group. As Lewis
said, there can be a terror of being left outside of a desired ring. To be
excluded from all social Rings of acceptance can be unthinkable.
But that is the reality for many people
with severe physical or mental disabilities.
The more severe the disability the more severe the social isolation. It
is my opinion that the most isolating of disabilities is schizophrenia: People with schizophrenia are at the bottom of the heap in
society.
Gaining acceptance into social groups
was a skill I acquired early and put to good use in early adult work
life, as I said previously. I could gain the trust and ears of those who
wielded the real power and was able to ingratiate myself and make myself
indispensable. This was an important tool to my career and the raw ambition
that propelled my early advancement. Of course this wasn’t something one openly
talked about, it just was.
DOORS THAT QUIETLY CLOSED
After my diagnosis with a degenerative
and incurable disease
dramatic episodes with disability shocked my social and
professional rings of people; doors quietly closed and did not reopen. Intimate
discussions huddled with like-minded people ceased. The warm reassuring winks, nods and subtle
smiles of acknowledgement about some esoteric point of understanding, agreement
and approval disappeared and were replaced by blank stares or worse: expressions of pity! And as I just alluded
to, intimate human relationships of friends grew cool and eventually went
cold. It all happened with the greatest
of politeness and aplomb but there was no mistaking it: I went from warmth of
“us” to cold shock and dismay of being with “them”.
I cannot express in words the horrible
shock of becoming an outsider of personal and professional relationships. What I can tell you that of all the friends
my wife LaRee and I had prior to the MS not one remained after.
I wondered what God what
trying to tell me? My prayers for deliverance from the MS were not met with
assurances ― certainly not what I thought would come my way or hoped for: God’s responses to my
bewildered prayers were met with answers like this:
- If sickness and disability can be
used to make me more like Christ, is that okay?
- If I am more useful in a wheelchair
as a witness for God, can I live with that?
- If God can use my disability to
reach people who might not otherwise be reached, is that okay?
Well, to be honest with
you, it was not okay but very soon God began to show me how I could serve him
even sick. Let me give you an example: Prior to developing MS, I was involved
in a prison ministry. I remember going to a provincial jail every month to
speak to the prisoners about Christ. They sat resentful and surly, arms crossed, eyes rolling. Many came simply to get away from their cells. The
expressions on their face told me what they were probably thinking.
It’s easy for you to praise God with your life. You’re going to
leave this prison and go home to ticky-tacky middle class house and a pretty
wife. You’re probably going to sit in front of a warm fireplace tonight and
read stories to your cute little kids. It’s easy to praise God when you’ve got
all that. I get to go back to a jail cell.
They were right. It was
easy to praise Christ when I had everything 
going my way. After the MS came I
kept going back to the jail ministry. The prisoners would see me stumbling or
barely able to walk or in a wheelchair, I could and did say to the prisoners: I
have a sentence that’s longer than your sentence (being a provincial prison the
maximum sentence would not exceed 2 years). My sentence is the rest of my life
and my prison is my own body. Let me tell now that God is still worth praising!
They sat up and listened.
My disease became so
violent and unpredictable that I had to eventually stop that ministry.
A HEART THAT NEEDED TO BREAK
In 1991, I was forced into
medical retirement from the Public Service and slipped into a clinical
depression. (It’s not easy to be put out to pasture at the age of 38 years.) I
would sit at my kitchen table and watch the Monday to Friday commuters on the
road behind my yard driving to and from work (I live in a bedroom community
outside Edmonton, Alberta). It was the same routine of which I was previous a part. Happily for me, my depression was treated
with some effective medications. But
more than medicine, I knew God was leading me through an internal desert. He
was leading me into a time of solitude and quietude. He wanted to talk to me, to lead and teach
and correct me.
Fulton Sheen said:
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| Fulton Sheen |
“... the human heart is
isolated and in agony: it has more love to give than any earth-bound object can
receive – it clamours to be loved more lastingly and comprehendingly than by
any human lover. But both longings – to love perfectly, and be loved perfectly
– are mere vacuums in man.”
Ego is a supreme
contradiction of love. My ego was so
large that God needed to subdue it if I was be able to clearly sense His Being
and be sensitive to His leading and discover the purpose and meaning of my
life. My illusions of self-sufficiency needed to be shattered because it kept
me from divine intimacy that was dependent upon God’s sufficiency and grace.
My heart needed to break
in order for me to understand why I could not love perfectly or accept God’s
perfect love. I needed to be stirred and
shaken to the foundations of my soul with nothing left but a broken heart. For so much of humanity it is in brokenness
that we can begin to seek wholeness.
Have you ever noticed that many of God’s truths seem to be wrapped in
apparent contradictions or paradox?
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In life we find life and in death we find life.
·
In weakness we find strength. In our strength we find weakness.
·
Many who are first here will be last in the kingdom of God;
those who are last here will be first there.
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In self-sufficiency we find defeat, but only in defeat can we
begin to truly understand the depths of God’s sufficiency.
In silence we can hear God. I needed to be reduced to
physical, emotional and spiritual collapse for only in that state did I
sincerely and finally ask “Why was I born? What is the purpose of my life? What
is the meaning of my existence?”
LOVE COMES LIKE A REFUGEE
I am reminded of the words
of a song by Leonard Cohen:
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| Leonard Cohen |
"... every heart to love will come, but like a
refugee. Ring the bells still can ring. Forget your perfect offering. There is
a crack in everything, that’s how the light gets in.” (Anthem)
We can use our pain to
encourage others who suffer.
One day I got a call
asking me if I would visit another young man named Derek who had just been
diagnosed with multiple sclerosis. Let me give you a bit of background about
Derek. This guy was a winner. He had nicely finished a degree in engineering
and his career was beginning to take off with a large Calgary oil corporation.
Derek and his wife were
jet-setter professionals. They drove a flashy BMW, skied Lake Louise on winter
weekends and vacationed in Maui. His MS
was catastrophic from the onset. His vision became severely impaired and he
landed up in a wheelchair very early after onset. I met him about ten months
later. He was living alone in a darken apartment. His wife had left him, and
his career was gone. I sat with him and listened to his grief. He allowed me
special entrance into his sorrow. I was able to say to Derek, “God is with us
at this moment. You may not believe that but I tell you I can feel His presence.
Let the Holy Spirit comfort you as I have experienced His comfort.” Derek was
too angry to accept my witness but as the old saying goes: “You may not be the
last link in the chain toward a person’s conversion ─ just don’t be the missing
link.
“Every heart to love will
come, but like a refugee.” We must open our love to divine love.
I have discovered that I
have been more use to God disabled than it was when I was able-bodied. Before I
was hurt my heart was closed to all but the most basic spiritual principles.
It was only when sorrow cracked and broke my heart that Christ’s light came in.
NATURAL HUMAN DIGNITY
My journey through chronic
illness and disability involved a re-discovery of the natural human dignity
that is the possession of every human life beginning at the spark of life we
call conception. It has nothing to do with our circumstances.
An individual with a
severe disability or incurable illness must ultimately turn to the spiritual
aspect of life (in as much is cognitively possible) – if they are to discovery
meaning of their anguish. It involves seriously internalizing the source of
human dignity – that which sets humans apart from the rest of creation. It begs
the question: If there is a creation, then there must be a Creator. And there
is.
The Bible begins with the
creation account. In the very first Chapter of Genesis we read:
“Then God said, “Let Us make man in Our image, according to Our likeness; … So God created man in His own image; in the image of God He created him; male and
female He created them.” (Genesis 1.26a & 27)
It sounds like creation
was not a solitary act. God speaks in plural, leaving for later revelation of
the trinity (cf. Genesis 11.7 &
Matthew 28.19). God in His majesty said “Let us make man in Our
image.” Who is us”?: The pre-incarnate Christ. We are told in
first Chapter of the book of John:
“In the beginning was the Word, and the Word was with God, and the Word was God. He was in
the beginning with God. All things were
made through Him, and without Him nothing was made that was made. In
Him was life, and the life was the light of men. And the light shines in
the darkness, and the darkness did not comprehend it.” (John
1.1-5.)
Humanity is not defined by
knowledge or power. We do not get our worth and value by what we can do, our
abilities or sentience; it comes from merely being.
For those of us who are
severely disabled ― and are able to seek the revelation of God’s divine love ―
we must be open to letting God use our pain, anguish and trials as a vehicle to
spiritually mature us and transform us to be more like Christ.
This is important because,
as this transformation begins to change us, we will discover our natural human
dignity if we remain open to Christ’s leading.
It was important for me to resist the
temptation to become bitter, not focus on my predicament, and simply surrender
again to that divine love of Christ.
Grief is like a river that can block the
sufferer from continuing his individual life journey. It is imperative to cross
the river of grieve and discover what is on the other shore. After the initial
shock passes it becomes critically important to actively and intentionally
rebuild one’s life and incorporate the new reality into the future.
The individual must develop a new
self-identity that includes his disability or condition ─ and his loved-ones must encourage this
process and accept the new person and how he perceives himself. But the individual’s new reality should not
be focused on his disability. This
transition phase is uncertain and even dangerous.
UNRESOLVED GRIEF
Some people refuse to rise above their
circumstances and cross their river of grief to face a new reality. They want their old life back or they want no
life. They are unwilling to cross their river of grief and they can become
suicidal. Unresolved grief in people with disabilities (and their loved-ones)
can fuel calls for euthanasia and assisted suicide.
This is an important fact for everyone
concerned to understand ─ particularly in the current climate where euthanasia
and assisted suicide acceptance is creeping into North America’s mindset.
Understand that unresolved grief must be proactively addressed. It must be addressed as an issue that extends
well beyond people with disabilities and their families: Their communities must
acknowledge that settling unresolved grief is critically important for the sake
of the community’s greater good.
Playing a supportive role at local
parish levels to those overwhelmed by persistent grief is a necessary
ingredient to help hurting people eventually return to active parish and
community life.
NEW DIMENSIONS
For me, the bridge across my river of
grief was the Cross. Christ was not merely waiting on the other side of my
river of grief: He’s been with me throughout every leg of my disability
journey. He continues to help me re-define and re-develop my life; Christ is
helping me understand where, how and why I fit into the world with my new and
evolving realities.
Disability journeys often involve
developing new dimensions of self-identity that are different from a previous
self-identity but no less vital ─ and perhaps even more vital as each
individual discovers new aspects of their living experiences. Granted these new dimensions of life can
involve pain but pain may be necessary for our spiritual development.
The Catholic Church
teaches this:
“The human body shares in the dignity of
“the image of God”: it is a human body precisely because it is animated by a
spiritual soul, and it is the whole human person that is intended to become, in
the body of Christ, a temple of the Spirit.” (CATECHISM OF THE CATHOLIC CHURCH, No. 364.)
This is a reality that does not change
with disability or sickness. The human body will always share in the sacred
dignity of bearing God’s image, regardless of its brokenness or state. The
human soul always remains intact and waits for new dimensions of the living
experience to be revealed that were previously unknown and unexplored by us or
those who love us. An atrophied and unresponsive body is still a temple of the
Spirit.
All I have is cracked and broken. I have no perfect offering to give
God. Strangely yet wonderfully that was when His love became most evident.
There is a crack in everything; that’s how the light gets in.
Yes, I am more than my handicap. We are
all so much more than whatever handicap hampers us from reaching the potential
God intends for us. It is only when we surrender our broken bodies, hearts and
lives to the living Christ that we will begin to see new spiritual dimensions
blossom within us and the body of Christ.
Thank you and God bless.
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." (Matthew 19.14) Small children have taught me some of my greatest spiritual lessons -- particularly in areas of trust, accepting God at His Word. C.S. Lewis once commented that small children have pure and momentous spiritual experiences as any undergone later in life. He was right. From our own childhoods we know this to be true.
When he was eight years old, the second deadliest tornado in Canadian history churned past us in a destructive path that claimed 29 lives near Edmonton on July 31st 1987. As we watched the vortex coming in its unpredictable zig-zag course, my son looked up at me and asked, "Are we going to die, dad?" I always kept a policy of being honest with my children (that's what I expected from them). I responded by saying "I don't know." My little boy said the most profound thing: "If we're going to die, can we die in God's house?" We looked at each other in a moment that stood still: I said, "That is a great place to die."
My wife's mother (Grandma Dorothy) was visiting a teenage mother and her new baby at a trailer park when the tornado struck; it sent the trailer end over end -- killing the teen mother. Dorothy briefly lost consciousness. When she awoke under a mountain of debris -- that had a mobile home and few seconds earlier -- she was miraculously holding the crying but unharmed infant. The trailer park looked like a war zone. 
Dorothy lives in a nursing home now, the young woman probably has her own children. My son is married and has a family. Life goes on.
