I have always insisted that doctors not keep anything from me. Not everyone wants to know everything. I want to make a cautionary note: I received so many cortico-steroids over those years I developed steroid-induced osteoporosis by the age of fifty-five.
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.
Throughout the ages, Christ has opened his sufferings to humanity. I can, through faith, discover that Christ’s redemptive suffering gives me insights and meaning into our own suffering.
I am convinced it is what Saint Paul meant when he wrote, “I have been crucified with Christ; it is no longer I who live, but Christ lives in me; and the life which I now live in the flesh I live by faith in the Son of God, who loved me and gave Himself for me.”
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.”
The truth is Jesus Christ. In Him there is hope. That eternal hope is nowhere else. Christ is the very definition and expression of God’s love. At the foundations of Scripture and Catholic teaching is the foundational truth of God’s immense love for all humanity: The Creator for the created, the Sanctifier for the sanctified. Humanity is called to the fullness of life by sharing in the life of God, which reveals dimensions that transcend our earthly existence. This is an exceedingly marvellous mystery of a spiritual transformation we are all called to.
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, …”
Elsewhere Paul says we are called to a holy purpose for which we were destined before time began and was revealed by Christ’s appearing. We are called to be perfect just as our Father in heaven is perfect. The way of perfection is to do the will of God and to love Him with our whole being (which always works in concert with love for those around us).
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.
I discovered that it is important to be outward looking, not solely inward looking. It was important in helping to discover where the new Mark fit in and who he was. My true identity is not developed in isolation but in solitude, not in a crowd but rather in a community. I realized that a new Mark could emerge from the fire of disease – no less vibrant and vital – just different. But I had to choose not to wallow in the past but look to the future, whatever that might be.
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.
He waits for His followers—at the end of our last hour—and we step across the threshold from this world to the next. Many of my observations about suffering are rooted and confirmed in the wisdom of Pope John Paul II. The Pope showed me a reflection of the true love of Christ despite dire 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.
The answer to human suffering was given by God on the Cross of Jesus Christ. I can sit at his feet that still bear the scars of his pain. My lesser sufferings have been absorbed. My search for some purpose to my pain encountered divine love in Christ’s pain. My search for the meaning of my suffering has drawn me nearer to Him. The answer has not come in a thunderclap of revelation ... rather a breeze that whispers: “Be not afraid, I am with you.” The love of Jesus Christ transcends every grief and every pain. The answer to my every Why id found in the love of Jesus Christ. I can rest in the knowledge that He is my final reality and that we shall stand face to face. I will finally know just as I am known.