roller coaster of grief and fear

Below is an adaptation of an address I delivered to a 2004 Life Issues Conference sponsored by the Diocese of Metuchen, New Jersey.

Part 2.

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Century 21 offers to devour unwanted embryonic life --consuming them for our own benefit. What do I mean by consuming the bodies of our unwanted children? Fetal stem cell research and therapies derived from embryonic life is being touted as a possible deliverance from Parkinson’s disease, rheumatoid arthritis, mending spinal cord injuries, alleviating the effects of osteoporosis and even multiple sclerosis. To date more than 50 MS sufferers worldwide have received experimental fetal stem cell therapy. None were successful.

Really? What if fetal stem cell research develops a cure for progressive multiple sclerosis? My MS is slowing destroying me. Should I look the other way in order to be delivered or helped, knowing my deliverance is on the back of another? For more than twenty years, I have publicly supported human rights and protections beginning at conception to natural death. What an interesting quandary! What a diabolical temptation.

No! Sadly I would have to turn from a hideous therapy that capitalizes on unwanted life. I must not accept that another must die so that I may live. It is better to remain in my half-lead body than to resurrect lost function and lose my humanity. I don't want deliverance from degenerative multiple sclerosis at that price. It is too high!

Church teaching

Catholic teaching is unequivocal about the value of human life beginning at conception:

“Human life must be respected and protected absolutely from the moment of conception. From the first moment of his existence, a human being must be recognized as having the rights of a person—among which are the inviolable right of every innocent being to life.” (Catechism of the Catholic Church (CCC), 2270)

Then,

“The inalienable right to life of every innocent human individual is a constitutive element of a civil society and its legislation.” (CCC, 2273.)

My Christianity and Catholic faith expect more from me than compromising fundamental moral principles for the sake of self-interest.

Roller-coaster of MS!

I remember what being able-bodied and healthy was like, when people were not uneasy when I entered a room. I remember when I was included and welcomed into the inner ring of winners. There was a time when the world was my oyster, so to speak. There was a time when walking across the room was as easy as pie and I had energy to burn. But that is all yesteryear.

In 1984, I was diagnosed with multiple sclerosis. I had the relapsing-remitting kind. Like was like a wild, savage roller-coaster. I would go to bed at night not knowing what function I would wake up with, or without.

I remember thinking my life had become like Chopin's "Revolution" Etude. Violent! Turbulent! Raucous! I have had a myriad of symptoms:

- My vision was affected and threatened;
- I have lost my ability to speak on a number of occasions. I looked like an imbecile, mumbling incoherently. (Some of you probably think that is happening right now.)
- 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.[1]
- I'd lose sensation;
- I'd go spastic;
- I'd have crippling fatigue (I still do).

Happily many of those symptoms abated. With the passage of time, however, I have become progressively less mobile; so much so that osteoporosis has set into my spine and I have lost nearly half the bone mass in my left hip. I have gone from walking normally, to needing canes then crutches and now my days are spent in an electric wheelchair. I know there is a chance I will eventually be bed-ridden.

Need to Grieve

After living 30 years as a normal, healthy man, the sudden onset of disability was a terrible shock. At about the 2-3 year point with MS my grief was so profound and unimaginable, my sorrow so deep, my heartache so sharp, that my judgment was clouded. I say to you today that I am glad there was nobody in the business of granting death wishes back in the mid-1980s. In 1991, I was forced into retirement from the Canadian civil service at the age of 38 years and sank into a clinical depression. My perspective became so skewed: I had to be able to safely grieve. Let me say that again ― people need to grieve a loss. They must be able to safely cry out and say the most outrageous things. It’s unfair to hold them to a death wish sought when they are at their lowest point. Civilized societies do not do that. Now, apparently, places like Holland, Belgium and Oregon offer euthanasia and assisted suicide to people like me.

Reason to fear

The severely disabled of North America have reason for fear. In 1998, the State of New York's department of Health drafted a report titled Recommendations on the Oversight of Human Subjects Report. It endorsed risky experiments on disabled adults and the mentally ill -- regardless of whether they were capable of giving consent. In December of that year, researchers at Harvard University and the University of Massachusetts proposed to Federal Drug Administration (FDA) the prospect of live HIV testing on terminally ill cancer patients, like lab rats.

In 2005, brain-injured Terri Schiavo was killed at the request of her estranged husband, under a Florida court order. If Terri Schiavo did not have the Right to Life, who is next? What is the level of disability to fall below some arbitrary level of acceptability to be protected?

The common thread is that those most at risk of being mercy killed or being victimized as research subjects are the poor, the mentally and physically disabled, the elderly. In other words — the politically powerless.

Mark Pickup


[1] By 2006, use of my right arm was seriously compromised.