The book launch is coming
February 2002, Lorie had just a few months to live and the MAID protocol was our last-ditch effort.
As Lorie and I get ready for the launch of our book Fighting Disease not Death: Finding a way through lifelong struggle, a number of elements are coming together that seem appropriate to share in this blog:
1. The book summary:
After twelve years, sixteen cancer occurrences and counting, Lorie L. Vincent and her husband Mark chronicle their approach to living and thriving during lifelong suffering.
In Fighting Disease, Not Death they go beyond the relentless progression of the disease to describe the anchoring faith that sustains them and gives them a reason to remain in service to others. They compare their decision to fight disease but not worry about the moment of death to approaches others take when faced with lifelong suffering. Their critique of these other approaches is gentle but offers each reader a stark reminder that they will collect suffering experiences during their lifetime. Lorie and Mark maintain it is how each of us builds on our crucibles that makes us remarkable and gives us opportunity to offer lasting value for those who come after us.
2. An endorsement from one of Lorie’s physicians:
3. Here are a number of links to related resources:
- The ProHealth Care CyberKnife® Center virtual tour:
http://www.prohealthcare.org/services/videos/CyberKnife®-center-tour.aspx
- Information about the superDimension® bronchoscopy:
http://www.youtube.com/watch?v=XW6piIH_lyk (Just released to the public)
http://www.superdimension.com/view/files/LorieVincentStory.pdf
- The Milwaukee Journal Sentinel article after Lorie’s seventh cancer occurrence:
http://www.redorbit.com/news/health/373416/lorie_vincent_was_told_cancer_would_kill_her_in_months/
- Lorie’s ProHealth Care patient story and radio spot:
- The national advertising campaign ad on CyberKnife®, featuring Lorie’s story:
http://www.creativepd.com/unitedhemispheresinsightoct08.pdf
(the ad is located on p.8)
- More reflections on medical outliers from The Muse, Mark L. Vincent’s blog:
Lorie is now widely considered the longest-lived person with uterine metastatic leiomysosarcoma
Just as soon as we have price information, pre-publication orders will be made available.
-mark l vincent
The thanks I give
I am writing this while Lorie and I wait to hear just how much her cancer has grown and whether it means entering into treatment immediately or a few weeks from now. We are embarking on what will be a thirteenth round in this interminable, yet holy battle. Working is what pays our medical bills, but so often work takes me out of town, making it particularly hard to wait. A scrap of paper in an old file caught my eye today. I don’t know when or where I wrote this prayer, but it was medicine for my spirit . . . .
The thanks I give
This joy I render
Comes from a heart blistered and tender
From the friction of sliding through shadows I could avoid.
Yet, You peer into this darkness
And call my name.
Your voice shines light in my shroud and brings me to life
Life!
How grand it is to breathe in Your presence!
How glorious to possess a beating, blistered heart!
How glorious to know you hold it in Your healing hands!
-mark l vincent
Perception distortion
My wife Lorie and I are often told that we have many things going on. Apparently we are perceived as busy people. That does not match our self perception. Lorie’s long battle with cancer has robbed us of so much of our time and diminished so many plans and forced us into such long waiting periods, that any healthy periods become crammed with buying groceries, catching up on yard work, staying abreast of our professions and paying our bills. We appear busy around others simply because so much time is given to forced stases. It appears everyone is at least partially right!
Perceptions are so easily misconstrued or only partially developed. A virtuous leader must understand this and commit to long and patient communication if she or he wants common and useful perceptions to form. Too many persons in leadership roles decide instead to embrace the ease of manipulating the half-formed reactions of people to their own, selfish ends.
For instance, I could pretend I am as busy as people think I am as a way to try to feel better about managing a long-term disease. Or my wife and I could take a different approach and play to the sympathy of others. But a more virtuous path is to pursue patient endurance, a quality that connects to the power of the human spirit when it makes peace with that which is Sovereign. Not only must we practice it when facing the disease, we must practice it in conversing with others who only see a flurry of activity when we emerge in public.
When the leader chooses virtue in managing perceptions, then both parties benefit–the leader and those who are watching. All then experience fewer distortion in their perceptions, and common ground becomes the basis from which to do good work.
One might also think about it in an economic sense. I might feel like I am wasting time trying to reach common understanding. But it also wastes time to willfully misunderstand one another and then have to clean up the mess. By taking time to understand and explain, I am keeping my relationships well-oiled. When I refuse to take the time, however, cleaning up relationship messes takes longer and often can never be fully repaired.
-mark l vincent
Celebrating a lady
No-one has had a better and more dedicated wife than I have known. No-one. I am fortunate to be married to her, and to bask in the love of all the women of her family. Count me among all those who know the joy of monogamy and all the freedoms that come from the helpful boundaries it provides.
This year, we celebrate 25 years of marriage. 10 of them have been marred and paradoxically aided by her agonizing bout with cancer. Lorie, I would do it all over again and this blog is my public proclamation of my undying love.
Throughout the years, I’ve written a number of poems for her, including several musical pieces performed at our wedding. Continuing in that tradition and with the hope that the inspiration offered might benefit others, here are two more that celebrate this lovely young woman I’ve known.
Ancient Bones
If sunshine were water,
and wind blew mountains high.
Should mustangs whinny nursery rhymes,
and mother improve on pie.
‘Twould be the start of special somethings,
memories of winsome tones–
Like youthful love,
flowing warm in our ancient bones.
Ode to a Kiss
Let’s do that thing that humans do,
pushing lip against a lip.
Plant those russet reds upon me
and let me take a sip.
How I love that pressure
of your nose pressed into mine!
How I love that sweetened suction!
How I long for that next time!
So come here lover lady.
Kiss me and then repeat.
Let’s find each other at the junction
where our two faces meet.
Vaccinated
Timothy Dwight, president of Yale University from 1896-1898, was no dummy. He had taken academic prizes in Latin and mathematics. He was also part of an extended family that included a Supreme Court Justice and famous preachers. Still, even with all that brilliance, he joined the initial outcry against the development of vaccines—something both Catholics and Protestants initially opposed. He is reported to have said:
“If God had decreed from all eternity that a certain person should die of smallpox, it would be a frightful sin to avoid and annul the decree by the trick of vaccination.”
We Christians have such a reputation for this sort of thing—opposing innovations and our dabblings in science and then later coming round to see the benefit. We move from not opposing the will of God to participating as co-creators with God as each new wave of scientific discovery changes society and eases suffering and the benefits can no longer be denied.
This is not to say that all scientific work is noble and contributes to our well-being. Let’s not forget Nazi attempts to genetically engineer the human race. And let’s not forget some of the clinical trials perpetrated on unsuspecting people in the good ‘ol US of A. Even the initial development of the small pox vaccine by the British Doctor Edward Jenner in 1796 had a few ethical problems with it. As the story goes, he forcibly injected an eight year old boy with both cow pox and then small pox. No medical consent form anywhere in sight.
But how shall we know when a line has been crossed and benefit to society is no longer the end pursued by scientific research, rather knowledge for the mere sake of acquiring knowledge, or worse, just keeping the grants rolling in? I think this question supplies part of the answer–keeping the right end front and center and focused. What we do must attempt to bless generations beyond our own lifetime and not just provide benefit for the moment.
This is what has kept our family going through more than nine years in my wife’s cancer battle–through surgery, endless doctor appointments, experimental protocols and our current six month harsh chemotherapy regimen. We battle this disease, not because God wills it, but because with God we oppose what takes life, cheapens it, shortens it, reduces it or crushes it.
A cancer perspective
I’m writing this a few days before my wife’s next scans. The cancer journey is no harder and no more tragic than anyone else’s. We can even identify ways our journey has been easier than others. What has been unique is the frequency (11x) and duration (9.5 years). The respites between occurences have been mercilessly short and substantially life-altering.
We found peace along the way by navigating between people who tell us to exercise more prayer and faith so that the cancer goes away, and people who are sure we are selfish materialists because we keep pursuing treatment at very great expense, perhaps depriving others of medical justice.
Rightly or wrongly, we have continued on because we enjoy life together, but even more because we believe that others will live longer and less expensively because we have embraced our ordeal as part of our participation in God’s redemption of the world. Rightly or wrongly, we fight disease but not death–already content that God has not and is not ignoring us.
I write these words again–ahead of the medical tests, to remind me of my commitment to God as his child, and my commitment to my wife Lorie, as her champion.
-mark l vincent
Theological Muse — judgment calls
Judgment calls are judgment calls. They aren’t exact. They aren’t easy. They don’t guarantee a successful outcome.
What the leader can know is that to do nothing is also a judgment call. That is, the failure to exercise judgment is still a choice of what to do with one’s judgment.
What the leader can learn is that it is better to follow through with judgment and action based on what they know, alongside helpful perspective from people who truly care about them, than it is to abdicate or hide or be paralyzed by fear.
In recent weeks I’ve faced the following scenarios. They were rife with judgment calls. History will judge whether I did well.
- How to respond to my wife and family as my wife enters an 11th (count’ em) round of cancer.
- How to respond to the pinch of congregational employees and volunteers that felt unsupported by each other (and ultimately unsupported by me no matter who I tried to help).
- Which consultative projects to say yes to and which to offer to others.
- Postponing a project that we really want to do, but for which financing would be risky at this time.
Other leaders must manage far bigger potatoes than I. Other leaders have far more naysayers and angry voices around them than I have ever had to face. Imagine being a presidential candidate, a professional baseball team manager, an airline executive, or a planning commission chair in your local township, and having to exercise judgment in public view. Or imagine being God, and having everyone blaming or praising based on their perception of your divine judgment.
Actually, it strikes me that baseball managers and God have a lot in common. Everyone second guesses them. Most fans care about the game where they are present without respect for managing for the season, just as many people speak to God only about their own selfish situations and without respect for their lifetime or for the welfare of Creation.
Making judgment calls is to get out of the bleachers with the brew and cracker jacks, and into the dugout. No call will be liked by everyone. One will get their nose rubbed into even the most successful decision. It goes with the territory of being privileged to exercise judgment.
-mark l vincent
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