[Citizen, October 2001]
Here’s the problem. The audience, a couple of hundred doctors and nurses, are clustered along conference tables and in rows of chairs all around the room, waiting for the next speaker. But he’s still a good twenty feet from the podium. Between him and that microphone, up on a raised dais, there’s a short flight of stairs. And that’s the problem.
Folks from the college are setting up a sheet of embossed steel designed to be laid over the stairs. But it’s angled too steeply for someone in a motorized wheelchair to ride up, and when the top rests on the platform the bottom doesn’t reach all the way to the floor. In the end, Mark Pickup manages to climb the stairs with the help of a cane, while others pull his wheelchair up the incline.
As he settles back into the chair and begins his speech, Mark doesn’t refer directly to this obstacle. Instead, he starts with the topic of euthanasia. The stretch isn’t as broad as it seems. Pushing the eject button on disabled and elderly humans is the natural ending to a sentence that can begin with something as unintentional and apparently benign as a dais barricaded with stairs.
“Assisted suicide means excluding people. And I don’t want to be excluded. I want to be included,” Mark says in a firm, clear voice. As with actor Christopher Reeve, the use of a wheelchair does nothing to diminish Mark’s noble bearing or contradict his rugged profile. “I want life with dignity, not death with dignity. After almost 18 years with this disease I have come to the conclusion that we do not bestow dignity on a person by injecting them with poison when they’re at their lowest point.
“Generally speaking, people don’t die with any more dignity than they have lived with. Dignity is not an event. It is a process.”
Over the last eighteen years Mark, now 48, has had opportunity to see first-hand the many subtle ways that the disabled can treated with less than full human dignity. It was a more radical shift for him than it would be for many of us, because a couple of decades ago Mark was not just a member of the able-bodied in-crowd, he was out in front: skiing, swimming, running, playing guitar, “a very active dad” to his two young kids.
Then one day “I went dead from the waist down,” Mark told Citizen. There followed two years of tests and treatments, ups and downs. Finally, in 1984, there was a diagnosis: Multiple Sclerosis.
The disease is “raucous,” Mark says, unpredictable in its effects, tantalizing its victim with glowing remissions and then smashing them with unimagined loss. Mark and LaRee had to give up their split-level home; the stairs were unmanageable. Mark lost his job with the Canadian Civil Service. More physical degeneration was yet to come. LaRee, soft-spoken with warm brown eyes, says, “If someone had told us then that we would be at this point today, I would have been scared to death.”
Mark agrees. “If someone had said to me that I would go on this roller-coaster of health, that the legs would be weak, I would lose use of my arm, that I would go incontinent, that I would have visual problems, I would have said that there is no quality of life.
“And if they had said, ‘There’s a wheelchair in your future’”— Mark pauses and gestures firmly– “I would have said ‘No. No. No.’”
However, as Mark likes to say, “Quality of life is a moving target.” When disease does damage that seems unbearable, when it strips away abilities that seem essential, it’s revealed that they weren’t essential after all. The unbearable is met with strength equal to the burden. Standards of what constitutes “the good life” continually readjust. “What gives my life quality today is not being able to run or swim or ski,” Mark says. “It’s being able to love and to be loved. To think that I am still making a contribution to the world, whether I am or not.”
Too often, a person entering disability feels shattered and suicide, assisted or not, looks like a release. Mark cites a study by a rehabilitation specialist, Walter Lawrence, of British Columbia: among people with high-lesion spinal cord injuries, 90% want to commit suicide. Five years later, only 5% contemplate suicide. Quality of life is a moving target.
Though a twenty-year veteran of the pro-life movement, Mark’s situation has led him to concentrate increasingly on disability and euthanasia issues. It’s a work that others toiling in the vineyard particularly admire. “Mark Pickup is one of the most eloquent voices in North America arguing on behalf of the inherent equality of all human life,” says Wesley J. Smith, a prominent commentator on bioethical issues and author of *Culture of Death*. “His nobility, his passion, his vision, are a badly needed antidote to those voices who, oh, so smoothly, argue that some lives are expendable. We ignore Mark Pickup at our own peril.”
John Kilner, the president of the Center for Bioethics and Human Dignity, agrees. “Mark Pickup brings a rare blend of experience, heart, and mind to today’s pressing issues of life and health in a God‑honoring way. There is real passion and integrity in what he says. I thank God for his courage and wisdom.”
These days another facet of the life issues is drawing Mark’s attention: stem cell research. In an essay in Canada’s “National Post,” Mark described how German researchers had experimented with the use of embryonic stem cells in animals and achieved what they termed a “critical breakthrough” for the treatment of debilitating diseases like Parkinson’s and MS. Other scientists had announced similar results, and stem cell transplants had been performed on about fifty people with MS.
“For years, I have lived with the fear that my next address may be a nursing home,” Mark wrote. “I have been haunted and taunted by the thought that I may become one of those sad lumps of humanity propped up in wheelchairs, passing monotonous days, staring out nursing home windows hoping for a visitor.”
The hope that a medical treatment could reverse that, could enable Mark to dance with his wife, ski with his son, or walk his daughter down the aisle, is nearly irresistible. After all, embryonic raw material is plentiful: embryos wait in fertility clinic freezers for parents who don’t intend to implant them, and they will just be thrown away. A research lab can even mix sperm and eggs in a petri dish and create their own handy embryos. Or, by destroying the nucleus from an egg and inserting material containing the patient’s own DNA, a lab can create an embryo clone–all the better to harvest stem cells that perfectly match its donor’s.
However, Mark concludes, the cost is too high. “I’d have to…look the other way from the reality that my deliverance was gained at the expense of *another* life.” A cure gained by destroying embryonic life would destroy Mark’s integrity, and in a sense his very humanity. “To gain my freedom from disease, I would become more wretched by accepting the fruits of robbing another of life, existence and a place in the world. No! The cure would only increase the torment.” As Mark notes, “It’s like a Stephen King novel.”
Some celebrities, like Michael J. Fox and Christopher Reeve, have been lobbying in favor of embryonic stem cell research, but others are asking the same questions Mark does. File it under “strange bedfellows”: while Nancy Reagan presents her husband Ronnie as one who could benefit from such research, gay-rights activist Andrew Sullivan says he would refuse the cells as treatment for his own HIV. After identifying the embryo at this early stage by its technical name, “blastocyst,” Sullivan goes on:
“One might conceivably justify allowing extra blastocysts to be created and lost as collateral damage in an artificial insemination (although, the more I think about this, the less defensible it seems). But to turn around and use those extra blastocysts for experimentation is a completely separate step. It is to treat human life instrumentally. I know of no better description of evil.”
As Sullivan notes, Federal law forbids the killing of a bald eagle; it also forbids the destruction of an eagle’s egg. “And once a blastocyst is killed, the human being coiled inexorably inside it is no more. If that isn’t killing, what is? And why are we more coherent when it comes to eagles than when it comes to humans?…If my life were extended one day at the expense of one other human’s life itself, it would be an evil beyond measure.”
Sullivan notes another avenue of hope: “it’s possible to cultivate stem cells from other sources.” And therein lies hope. Evidence is gathering that stem cells from adults, or from newborns’ umbilical cords, may be just as effective as stem cells from embryos. The argument in favor of the latter is that embryonic cells are more vigorous and active, growing faster than adult cells. But that ebullience may, in fact, be a drawback.
In an experiment reported in the New England Journal of Medicine, the brains of Parkinson’s patients were injected directly with fetal brain cells. Some fifteen percent of them began to produce too much of the brain chemical that controls movement, with resulting flailing and writhing and uncontrollable chewing, symptoms that are not reversible. A cell whose primary selling point is reckless growth may not be the best thing after all. In fact, another outcome of uncontrolled cell growth is called a tumor. Perhaps a slower pace, both in cell development and in research itself, is warranted. As Andrew Sullivan says, “Are we currently beset by the problem of scientific breakthroughs that aren’t fast enough? Surely the opposite is true (or at least also true): We are beset by scientific breakthroughs that are occurring far faster than we have the moral language or the experience to deal with.”
Mark began to gain the moral language to deal with suffering a few years before he became ill. “I converted in 1980,” Mark says. “I had a problem with alcohol. No, I was an alcoholic.”
Though Mark had not been practicing his faith seriously, he could not shake the convictions instilled by devout and honorable parents throughout his childhood. “I had been given so much as a child, and was I going to bestow an alcoholic’s life to my children? Tell me how that fit,” Mark says. “I had been given so much that I of all people should give my children a good upbringing. When I realized ‘you don’t have control of this at all,’ the Lord led me out of alcoholism.”
LaRee was not a believer and wasn’t sure how much she liked this change. She laughs as she describes asking herself, “Which is worse, having the pastor over for dinner, or having Mark booze out?” Mark would call her over when he was reading the bible “and I’d go ‘O brother’” she says, rolling her eyes. Eventually she started sneaking looks at the Scriptures when Mark wasn’t around. “I didn’t want him to know he was having an influence on me.”
When the diagnosis of Multiple Sclerosis was delivered, LaRee was a new Christian with a still-wobbly faith. She considered divorce: “Do I want this? Should I run now?” In fact, Mark says, 80% of MS patients see their marriages fall apart. But LaRee had already seen the effects of divorce in the lives of each of her four siblings and her parents. “I saw the damage divorce could do. Do you know anybody who went through a divorce and it actually made things better? Very few. Besides, do people think they can run away and never have a health problem? It’s going to come one way or another.”
Mark takes seriously the idea of a “watershed moment,” those points in life when a decision changes everything. Deciding against divorce was a watershed for LaRee, he says. If she had gone that direction “it would have changed who she is. And if I accepted fetal stem cell therapy, it would change who I am. Is it tempting? Sure it is. But it would compromise not just my Christianity, but my very humanity.”
While serious injury may require a difficult adjustment, usually it’s stable; a disease like MS means that the picture is always changing. “Although LaRee and I don’t overtly acknowledge it, it seems we’re in a new phase now, where the canes will be left behind and I will use a walker. So there will be a new phase of grieving. We accepted the way it was, but the deterioration continues.”
LaRee adds, “Now he has to take two naps, not just one. His day is getting shorter and shorter. Medical supplies are filling up our home, diapers, walkers and scooters. The illness is becoming more obvious.”
“When I stand before the Lord and he explains why this was allowed…” Mark hesitates, then starts again. “Some men are guilty of sins of the flesh, and I’m guilty of the sin of pride. If MS is what it takes to root that sin out, so be it. If there’s a blessing in suffering, perhaps that’s it. A prerequisite for Christian conversion is brokenheartedness.
“Too many Christians have bought into the idea that God is a Sugar Daddy. But the fact is that we are to fit into God’s will, not him into ours. If this is what it takes to burn the pride out of me, to make me more like him and less like me, then let it be. Or else I didn’t really mean what I said when I converted. Talk is cheap.
“What about divine healing? I have been healed. I have been forgiven. Before I was disabled I was able-bodied on the outside but I was crippled inside. Now I’m crippled on the outside but Christ abides with me on the inside.
“Today my life is richer, not in spite of the MS, but because of it.”
As Mark concludes his speech applause starts to spread across the room. Then, instead of fading, it builds, as one person after another pushes back his chair and rises. Soon the room is washed with applause, and every single person in the place is on his feet. Everybody except one.