[NB: I am available to speak about Life issues, disability and a Christian perspective on suffering. For booking send an email to HumanLifeMatters@shaw.ca]
|Delivering my address in Madison|
And I want to explain how my journey toward meaning involved a redefining of self and self-image; a discovering or rediscovering of significance -- not only in myself, but also my family, my community, and most importantly in my relationship with Christ and Him to me. And finally a new ever progressing and evolving understanding of meaning and a clearer sense of purpose in my life.
In March of 1984, I awoke one morning with a thick, clammy blanket of severe numbness from my waist down. I could walk fine, but I couldn’t distinguish hot from cold or sharp from blunt. All sensation was, … well, blunted. My GP thought I had pinched a nerve. Then a few days later the same thing happened to my right arm, except there was pain. I couldn’t hold a pencil or turn the pages of a book. My doctor thought I might actually have a brain tumour and sent me for tests at a cancer clinic. Happy that was a possibility was eliminated but it began a long series of tests for different diseases and conditions.
Back in 1984, coming to a diagnosis of MS was very much a process of eliminating other things. That process ended with a lumbar puncture. My treating neurologist was looking for the presence of certain blood proteins called oligoclonal bands.
After the lumbar puncture, I was laying on a gurney while the neurologist was finishing some paperwork. I asked him what he thought I had. Just as casually as you please, he said he was pretty sure I had multiple sclerosis, closed my file and walked out of the examining room, leaving me alone with my thoughts. He may as well have kicked me in the chest. This was my first exposure to a physician skilled at diagnosing incurable, serious disease but inept at consoling.
If MS numbed my body the shock of what he said numbed my mind. It simply could not take in the reality of those words.
[I should tell you the reason for that mental shock. A number of years earlier I was employed as client services coordinator for the local chapter of the MS Society. I saw the very worst of MS so I saw what it can do.]
Now, it was me who would go into the harrowing fire of multiple sclerosis. It initiated years of terror as MS ravaged my body. It would attack, often without warning taking away certain abilities or functions, then remit and return most, but not all the previous function. I would go to bed at night not knowing what function I would wake up with, or without, and no guarantee I would get lost function back. It was like a wild, terrifying roller-coaster ride.
The only treatment at that time for MS flare-ups was corticosteroids: prednisone orally or solu-medrol. Sometimes symptoms would be subtle and only small tasks became difficult. Sometimes symptoms were severe and many things became impossible. There was a terrifying incident that occurred at my work a few months after being diagnosed with MS. I went for coffee with some colleagues. When we were returning to work we got into an elevator. I tried to press the button for our floor.
My finger would not press the right button. I even missed the panel! Someone else tried to push it but I slapped his hand away. I could not push the right button! It was horrifying and I started to whimper out of frustration. The elevator went silent. I turned to see everyone looking at me with expressions of shock and pity. I was suffering visual and coordination deficits. When I got back to my desk I couldn’t read a page. I would lose my place on the page and it hurt to move my eyes. Diplopia and optic neuritis were emerging.
Over the next few days, a fog descended over my vision and I lost a patch of sight just off-center in my right eye as well as peripheral vision. My doctor referred me to the care of an ophthalmologist. I was terrified; I needed to be able to read to work. I was an artist and a musician. Artists must be able to see.
I took time some time off from my job in hopes things would settle down. More steroids. Eventually, things came back to near-normal with some residual disc pallor. Then a hearing problem called recruitment—which was the beginning of my hearing loss.
Attacks kept coming. I would go from walking normally, then to needing a cane or canes, then back into remission, then another episode would put me in a wheelchair or crutches again.
• I lost my ability to speak on a number of occasions. I looked like an imbecile mumbling incoherently and drooling.
• I have gone incontinent and dirtied myself;
• I have lost the use of my right arm and hand, so I could barely hold a pencil. That was important to me because I was an artist.
• I'd lose sensation;
• I'd go spastic (I still do);
• I'd have crippling fatigue (I still do).
There were long periods of time when attacks left me without function and no guarantee I would get the function back. Weeks or months would pass, convalescing either wide-eyed terror-struck or despairing. I noticed that old friends started avoiding my wife and me. This made me feel isolated. My wife felt it too. There were many occasions when we were so terrified the only comfort we found was in holding each other and praying. The first time I lost the ability to speak was a Sunday in 1985. When my family entered the church I could speak normally; I came out with garbled speech. We went home and I retreated to the family room horrified. That evening a man from down the street came to the house and asked for me. My wife sent him to the dim family room where I was sitting. He simply sat with me. He didn’t have any great skills in counselling or communication. He was a carpenter but he wanted to be with me during my crisis. He knew the art of presence and was not afraid of silence. That humble, unassuming man helped me more than any psychologist. I related this to you to illustrate the importance of presence. When my speech returned I make a point of telling him how important to me his simple gift of being present was to me.
Music played a huge part in my grief journey. Anyone who reads my blog will know that. One thing I lost early on was my sense of musical timing and coordination in my right hand. This was a big shock! I played guitar, and at the risk of sounding boastful, I was very skilled. I grew up in a musical family. My mother taught music for over sixty years. At the risk of sounding boastful, I was a good guitarist. At any rate, about two years after losing my ability to play the guitar, I realized it was probably not going to return. In frustration and sorrow, I took my beautiful, top-of-the-line instrument and sawed it in half.
LaRee was horrified! She yelled at me, ‟What are you doing! You`ve lost your mind!” I put the two pieces of my guitar back in the case and LaRee and I spent the rest of the evening in stunned silence, but I wasn`t sorry. That night after the family was asleep, I got up and wrote a note and put it in the case with the destroyed Fender guitar. May I read you what that note said?:
I sawed my guitar in half today. It was the healthiest thing I have done in a long time. It gave me a release and a feeble way to express my grief. My love was music. As a youth, I lived for my guitar and my music. I remember when I would rather play than eat. Now, my timing is gone, so too is the strength in my hands.
On September 27th 1986, my new reality came into clear focus. Life will not be normal again. I realized I must pick up the pieces remaining in life and forget what I`ve lost. Grief that would not focus for 2 years finally came to a head. I couldn`t cry so I sawed my guitar in half.
I couldn`t just give it away; that would only be more things slipping out of reach. There`s been too much of that already. I needed to sever the past with no tiny remnants to haunt me and taunt me.
I sawed to say goodbye to artistic expression. I sawed to say goodbye to a carefree youth. I sawed to say goodbye to life without a cane or other contraptions of the disabled. I sawed to release grief and say Ì hurt! But mostly, I sawed to say goodbye to an old and trusted friend – my guitar – a finely crafted instrument I can no longer play.
It didn`t seem right to just leave it in its case. I sawed my guitar in half today.
It was like a dam burst to let my grief move on. A letting go that started a first step ― the first of many ― that continues to this day in a long journey toward a redefining of self.
By 1991, MS degeneration forced me to retire from the Canadian public service. Being put to pasture at 38 years of age was a horrible thing and I sank into a clinical depression. Over the next 15 years, my physical deterioration became so serious that at one point I was threatened with quadriplegia. My neurologist became so concerned that he put me on the chemotherapy drug mitoxantrone combined with copaxone. When he presented this therapy to me, my wife was in the room.
He told us that mitox, in the doses I would receive could, among other things, be toxic to the heart. My wife asked the doctor what were the risks? He said, “death”. My wife started crying and the buffoon sarcastically said, “Are you going to cry?” One may ask why I stayed with that neurologist? He may have had the bedside manner of a warthog but he was the best in the area for treating MS. After about three or four treatments it became apparent that I could not tolerate the mitox. It was discontinued.
Successive CT scans and MRIs showed that the disease was active and new lesions forming. Some symptoms or incidents were atypical of MS. For example, I developed a cold where I had coughing spasms. The only problem was the spasms would close my windpipe and wouldn’t open! I would panic and struggle and eventually, the spasm gave way. My wife packed me into the car and we headed to the emergency at the closest hospital.
I knew the treating physician could not treat the MS but hope he might have a trick or medication to suppress the throat spasm. He told me not to worry. The spasm would probably release once I lost consciousness. He then turned to my wife and started to show her how to do an emergency tracheotomy. Maybe it was just me, but I wasn’t reassured by that course of treatment. Granted, the examples I have given are extreme.
I noticed early on an awkwardness that physicians had with an incurable, degenerative disease for which they could only treat symptoms but never cure. In earlier years of this disease, I made a point of letting them know I was aware they had very few tricks or treatments to offer. It seemed to lift a weight off their shoulders.
There were a few health-related things not associated with MS I will mention in passing. In 2007 I had and Transient Ischemic Attack (TIA) for which I don’t remember if or what the treatment was, other than 81 mg of ASA daily and high blood pressure medication. In 2012, I was diagnosed with prostate cancer. My oncologist and urologist thought I could not tolerate the usual course of radiation. The surgery was done by cryo-surgery.
Medical science is very good at palliating pain or at least you should be. Dr. John Scott, a palliative care specialist with the Ottawa Hospital in Canada wrote these words:
“The World Health Organization has demonstrated that access to pain-relieving drugs, along with a simple education program, can achieve relief in the vast majority of patients. Specialists in various parts of the world estimate these basic approaches can control 85 to 98 percent of cases. The remaining cases require more careful attention and the use of multiple drugs and therapies to achieve complete relief.”
Those words were written in 1995. How much more advanced has pain control become in these intervening 22 years? Well, in preparing for this presentation, I contacted Canadian palliative care physician Dr. Margaret Cottle to ask her about the veracity of that statement. Dr. Cottle is a member of the American Academy of Palliative Medicine and the Canadian Society of Palliative Care Physicians.
She confirmed the truth of that statement and then went on to wax eloquent about new advances in pain control since those words were written. Dr. Cottle told me about the phenomenal success she has with a new drug for rousable sedation called Presedex.
I have experienced physical, emotional and spiritual pain. It is my experience that emotional and spiritual suffering are much worse than physical pain. Physical pain can be treated but spiritual pain is most difficult to reach and treat. It is often intertwined with emotional suffering. Protracted human suffering of any kind creates its own world for the individual. Incurable illness evoked in me a sensation of internal exile in which I felt cut off from my community, my friends and those who love I love most. This suffering was highly personal, my deepest agony was inexpressible and this intensified my agony.
My suffering took on new emotional dimensions as I questioned my identity and my sense of self-worth. So much of that was tied to work and contribution.
In the midst of this internal and physical crisis, I had to find a point of reference for my mounting and inexpressible grief: It was the Cross of Christ.
Not only did Christ suffer excruciating physical pain, He suffered the pain of being misunderstood, isolation, and the agony of abandonment culminating in his cry from the cross: “My God, My God, why have you forsaken me!”
I don’t think there is a lonelier moment than being at the climax of suffering and crying out into a universe that seems deaf and indifferent to our pain, and any evidence of God seems to have vanished.
People need to grieve a loss. They need to know there are people around them who will uncompromisingly hold up the value of their lives – even if they cease to believe in their own value. A person grieving catastrophic disability or incurable illness(es) needs help to rediscover their natural human dignity when they have lost sight of it … a natural dignity that was endowed to them with that spark of life we call conception.
An individual with a severe disability or incurable illness must ultimately turn to the spiritual aspect of life (in as much as cognitively possible) – if they are to discover the meaning of their anguish.
Dr. Viktor Frankl (1905-1997) was an Austrian Neurologist and psychiatrist. He was also a holocaust survivor. In his book “Man’s Search for Meaning”, he wrote:
“Those who have a ‘why’ to live, can bear with almost any ‘how’.”
In another place he wrote:
“Life is never made unbearable by circumstances, but only by lack of meaning and purpose.”
Humanity is not defined by knowledge or power. We do not get our worth by what we can do, our abilities or sentience; it comes from merely being. Our worth is innate, whether we know it or not. 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 vehicles 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 the source of our natural human dignity.
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. As I plunged into the essence of my suffering, I searched for its meaning and purpose.
I found a wonderful surprise: Through my Redeemer’s outstretched arms on the cross. He was inviting me (and invites me still). to unite my suffering with his suffering. Imagine that! Being invited into Christ’s redemptive suffering. Christ did not come to free us from our pain, but to transform our pain into His. He suffered in my place and here I was invited into His redemptive act. In this way, my pain began to take on meaning. Christ called (and still calls) me to relinquish ownership of my pain to Him, and understand that I was truly poor in spirit.
Jesus said, “Blessed are the poor in spirit, for theirs is the kingdom of God.” Understanding I was poor in spirit was (and remains) the key. It marked a critical transition point in my acceptance of suffering and to stop resisting what I could not control. I began to learn that if I could not change my circumstances then let my circumstances change me. It required that a shift take place in my spiritual mindset in order to realize that in this earthly life, it is more important to understand than to be understood. I was being called to set aside self-interest, and ego, and follow Christ with complete abandon. This is the absolute antithesis of my egotistical and self-absorbed nature!
Our response to the suffering of Christ at Calvary removes the ultimate suffering which is the loss of eternal life. He asks you and me to take up our cross and follow Him. It is not easy to be willing to take up my cross, but it is necessary, if truth means anything. Perhaps that is why our Lord said we must take up our cross daily. It requires a daily recommitment to bear up the weight of my cross and follow Him. But follow Him where? In my weakness, I have been so irrationally afraid to take up my cross and follow Christ because I feared it might lead me to a Golgotha! Yet the logic of divine love assures me I can rest in His tender embrace as a child of God.
But I am unable to become a child of God without divine intervention; Saint John said this at the beginning of his Gospel:
“But as many as received Him, to them He gave the right to become children of God, to those who believe in His name: who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God.” (John 1.12)
If I carry my cross of suffering in union with Christ’s redemptive suffering, it does not lead to a Golgotha: It leads to a realization that Christ can use my human suffering to bring me closer to Him.
Paul wrote in his letter to the Romans, “For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” (Roman 8.18.)
Paul’s comment about the “glory that will be revealed in us” is a reference to the future resurrection of the body (v. 23) and the subsequent complete Christ-likeness which is every believer’s eternal glory.
It is a mystery to me because I cannot yet see the full picture in my present state. But I am assured that it is Jesus Christ who will transform my lowly body to be conformed to His glorious body. He is able to subdue all things to Himself.
According to what St. Paul said, I have been saved for the certain hope of Resurrection of the body which I do not yet see but wait for with perseverance (8.23-25). Perhaps someone may think, “It’s too hard”. I know that fearful doubt of weakness – but Paul assured me that the Holy Spirit helps us in our weakness and even intercedes for me. (verse 26). Christ’s redemptive suffering at the Cross and death are completed by the cosmic eloquence and beauty of the Resurrection. You and I are invited into that redemptive act for we will be like Christ.
Suffering in unison with Christ let me see Resurrection in a new light. My hope in (and anticipation of) the Resurrection has helped me go through my darkest days of humiliations, my agonies, my doubts, my fears. I had to trust there must be purpose and meaning to the fire of my suffering and anguish. Fire gives light.
A flood of hope, rooted in divine love, produces the marvellous realization that my anguish is mysteriously transforming me for heaven. If I am open in my suffering to Christ’s love it will inevitably begin a spiritual transformation. I have discovered that Christ grants a special grace that transcends my suffering. Suffering carries the capacity to strip away all things unnecessary in life, leaving only that which is essential. Suffering taught me that at the center of existence rests a heartrending and beautiful mystery.
C.S. Lewis said that Christ doesn’t solve the problem of pain, He changes it into a mystery. Once I glimpsed that mystery, everything else became an irrelevance, a diversion. That mystery is the light of Christ – and in His light is divine love. Many people throughout history have discovered this truth, including Saint Francis of Assisi, John Milton, John Donne, Alexander Solzhenitsyn and millions of ordinary people. It is possible to experience an illumination that enables the sufferer to begin to comprehend the glorious, transforming liberty of the children of God, even though we are being physically destroyed. I think this is the liberty Saint Paul referred to in his second letter to the Corinthians:
“Nevertheless when one turns to the Lord, the veil is taken away. Now the Lord is the Spirit; and where the Spirit of the Lord is, there is liberty. But we all, with unveiled face, beholding as in a mirror the glory of the Lord, are being transformed into the same image from glory to glory, just as by the Spirit of the Lord.”
People in dire and miserable physical circumstances can and have experienced shades of this liberty. In any human context, they may not appear to experience liberty whatsoever! Yet out of their wretched surroundings can come salvation and Joy. It sounds fantastic, I know— but there it is. History attests to this truth.
It was in my sick room that I began to discover union with Christ’s Crucifixion and Resurrection. A great light began to push back the inky darkness of my defeat to reveal to me a renewed hope in Christ. Isn’t this the essence of what Paul said:
“Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen." (2Corinthians 4:16-18)
Christ’s truth can (and does) set people free, even today. He said, “If you abide in My word, you are My disciples indeed. And you shall know the truth, and the truth shall make you free.”
But transformed to what? The Apostle Paul told us, “And we know that all things work together for good to those who love God, to those who are called according to His purpose. For whom He foreknew, He also predestined to be conformed to the image of His Son, …”
I am referring to the Greatest commandment which Jesus identified as this: “You shall love the Lord your God with all your heart, and all your soul, and with all your mind. This is the greatest and first commandment. And the second is like it: You shall love your neighbour as yourself. On these two commandments hang the law and the prophets.”
The Catholic Church teaches that all Christians are called to the fullness of Christian life and to the perfection of love and holiness. There is an underlying theme of salvation that invokes love and the natural dignity of human life.
The inward expression of love toward God is to sharpen my focus on the image of God within me, and with Christ’s leading, refine my understanding of that sacred endowment.
My outward expression of God’s love toward other people can encourage the natural human dignity that is theirs. This helped me to redefine myself with a greater community and validate my own humanity. It explained how and where the new me fit into the world. These two expressions of interior and exterior love gave me purpose.
My new self required a contribution to the common good and a commitment to the interdependence of community—not the independence of myself. I have learnt to trust that Jesus Christ will make sense of my anguish, but I must remain surrendered to His leading and sensitive to His voice and love.
Accepting the fullness of Christ’s perfect light and divine love scares me because I am a sinful man. I must trust that as my pilgrimage toward the Celestial City progresses, so will my spiritual maturity. Christ’s love will transform me to be more like Him. In Him, there is life, not death. He offers hope to humanity, not despair. My pain, sorrow and grief have been vehicles for spiritual maturity, not only in me but also in those who love me. I have been touched by love (both human and divine). I detect the light of Christ’s love has pushed, and is pushing, back my inky internal darkness of fear and unbelief.
I keep on my dresser a photograph of Saint Pope John Paul II in his advanced state of Parkinson’s disease. In the spring of 2005, he made his last public appearance on the balcony of the papal apartment above Saint Peter’s Square; He tried but could not speak. For a few agonizing moments (which seemed like an eternity) he struggled to say something to the expectant and adoring crowd – but he could not. The Pontiff was wheeled back into his apartment. It was clear that he was near death. To me, it was his most eloquent moment, yet he didn’t say a word I could understand. To the end he showed, by his example, that Christ is always near, especially in what may seem like hopeless circumstances. The chronically ill and disabled people of the world took notice. I know I sure did.
The Pontiff proclaimed through his faithful witness, Christ’s solidarity with the world’s disabled. His final witness was for a culture of life and inclusion – and that blessed witness continued to the last hours of his life. His unstated message that Christ stands in union with the world’s disabled, the chronically and terminally ill was (and is) of profound importance. In his last journey, Pope John Paul illustrated with poignant clarity that no matter how desperate life’s circumstances may become, no matter how close we may be to death’s door, Christ is there. Jesus Christ is the path to authentic personal freedom, the source of love and joy despite my physical circumstances.
The true love of Christ: Is there anything so sweet to the human soul? His love has existed beside a crimson thread of suffering that can be traced in the course of human history throughout the last 2,000 years. Suffering seems to be inextricably linked with the essence of the nature of humanity.
It has been in my suffering that I have received a glimpse of the Truth and it is setting me free. Not even this wheelchair can take that freedom from me. Christ’s light is driving back my darkness. I live in His light and liberty.