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From grief and disability emerge hope and meaning Print E-mail
Around the Diocese
Written by John Bohn, MD, For the Catholic Herald   
Thursday, Mar. 30, 2017 -- 12:00 AM

Second  in a series on the recent conference on "Dignity at the End of Life, from Suffering to Hope," held in Fitchburg.

Did God vanish?

Imagine this: You are a healthy, 30-year-old husband, father, and accomplished musician — active, repeatedly successful, and comfortably employed.

Suddenly, you wake up one day to find you are numb to all sensation below your waist. More symptoms follow, resulting in weeks of tests and still more tests.

Then, as you lay on a gurney following a spinal tap, a doctor displaying "the bedside manner of a warthog" casually struts in and curtly states that you have multiple sclerosis. He then closes your chart, and walks off.

This imaginary tale became reality for Mark Davis Pickup in March, 1984, when he was thrust into the role of patient with this degenerative neurological disease. As a former client services coordinator for the local chapter of the Multiple Sclerosis (MS) Society, he vividly recalled seeing "the very worst that MS can do," heightening his overwhelming grief and terror over what was to come.

Mark related, "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 God seems to have vanished."

But God had not vanished -- not by a long shot. In fact, God had other plans for Mark.

Today -- now wheelchair-dependent with advanced multiple sclerosis -- Mark is an inspiring pro-life speaker, effectively imparting that unique instructive insight that only comes from first-hand experience.

At a recent Madison area conference, he shared this insight in a presentation titled, "Journey through Grief of Disease toward Meaning: A Case Study," to attendees representing a wide range of backgrounds, including doctors and others in the health care fields.

The journey: a wild roller coaster ride

Like a pesky, relentless roller coaster, Mark's MS repeatedly fluctuated between flare-ups and remissions. Without warning, new symptoms or loss of function would emerge. Convalescing periods preceding remissions often required months, but never with a guarantee that full or even partial function would ever return.

Over the last 33 years, Mark experienced symptoms and indignities that most of us don’t even like to think about. In addition to sensation problems and loss of muscle strength and coordination, Mark had episodes of recurring pain, partial blindness, hearing distortion, speech distortion, choking spells, crippling fatigue, clinical depression, and more.

Days came when he unexpectedly lost continence and soiled himself, and others when he suddenly discovered that he couldn't dress himself, hold a pencil, cut his food, or even push an elevator button.

But losses were not limited to the medical realm. Mark lost his ability to play the guitar he loved since his youth. Eventually he lost his job and was forced into an early retirement at age 38 -- triggering his deep fears of being unable to provide for his family.

His wife shared a parallel grief as he steadily deteriorated. Both felt more and more isolated as old friends increasingly avoided contact. Mark recalls, "On occasions we felt so terrified that the only comfort we found was in holding each other and praying."

How low can you go . . .  assisted suicide?

"I have experienced physical, emotional, and spiritual pain . . . the emotional and spiritual suffering are much worse that physical pain."

Mark states frankly how deeply this emotional and spiritual burden once distorted his thoughts: "My grief was so profound and unimaginable, my sorrow was so sharp, my heartache was so deep -- that my judgment became clouded. If assisted suicide had been available in the mid-1980s, I might have opted for it . . ."

Fortunately, Mark was surrounded by the love of God and his family, so once judgment cleared, he became an avid opponent of assisted suicide, which he notes "helps to entrench the notion that there is a life that is unworthy to be lived."

He emphasizes that persons considering this need our help, not our misguided facilitation. "People need the freedom to grieve, to cry out, to say the most outrageous things, and not be held to a death wish that they may have sought when at their lowest point."

Path to hope and meaning

Today, Mark has found hope and profound meaning in his suffering and limitation crediting this primarily to his closer relationship with Jesus Christ, strengthened by prayer, Scripture, and his Catholic faith. He reminds us that Christ’s command to take up our crosses daily is not easy, but it is necessary.

But Mark assigns strong secondary credit to the support of those around him throughout his journey, reminding us that "everyone suffering needs the support of a significant community to overcome their fears of pain and powerlessness. They need someone who will hold up their natural human dignity even when they have lost sight of it."

As Christians, such words beckon to us all.

Next time: What does someone in such a supportive community look like? The next topic in this series will discuss the field of patient advocacy and support for those facing illness, disability, of end of life issues.

References: For more information relating to Mark Davis Pickup and topics in this series, visit humanlifematters.org or prolifehealthcare.org or search for the Human Life Alliance video "Facing the Disability Challenge" on YouTube.

 
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