Friday, February 20, 2009

Drive for Life: Just because You're Diagnosed with a Life Altering Disorder Doesn't Mean it's Time to Give Up!

John “Bake” (his nickname complements Brown point guard Alex Bynum’s “Shake”) McBride and I were on the same schedule during our 1980 freshman year at Brown University. We shared, along with twenty five other young men, the third floor bathroom in Perkins Hall.

Perkins is the most removed dorm from Brown’s main campus. It was acquired from Bryant Business School and sits on the edge of Fox Point. Before gentrifying, Fox Point was a blue collar neighborhood filled with immigrant populations. When we started at Brown, Fox Point had fallen on hard times. Rumors had a robust street drug trade thriving around the corner, though I never witnessed illicit dealings. Suspicious characters flourished.

Perkins has a typical brick and mortar institutional look yet attempts to reflect Le Corbusier edicts with pillars supporting its jutting first floor, to separate living space from the street. The roof became “Perkins Beach” when the weather turned nice, but between November and April, sunny days in Providence are as uncommon as ethical legislators in its capital building. Cement engravings extolling: “As Ye Sow” centered on its left façade, with matching: “So Shall Ye Reap” on its right, greets visitors.

Being on the top floor secluded us from the central campus community, but fostered a close bond with survivors. The dorm’s location added considerable distance to the athletic center, classes, libraries, and meals. Several hall-mates, burdened with time management challenges, left Brown for academic reasons.

Brown blended freshmen football recruits, more hockey recruits, a few basketball recruits with several female weight throwers, rowers and interspersed them with about ten students accepted to Brown’s then seven year medical program on our hall. These students were admitted to medical school out of high school. It was a culture clash – extreme jocks with extreme students.

I lumbered upon and stopped attempted crimes, including assaults, on my off hour travels to and from main campus and speculated Brown placed athletes with big bodies from urban settings on Third Floor Perkins to deter crime and to befriend and to protect less imposing dorm mates. Brown was strapped for cash and I’m guessing they decided to transfer the added security risk to us large students.

If true, it’s twisted irony. Outside of a few notable exceptions, Brown made large, male, heterosexual athletes feel unwelcome. The implied message was clear; presence and physical gifts are not significant, memory and brain power are. Most faculty and staff stereotyped us. They inferred our physicality was the key factor in gaining admittance. They assumed we were inferior students, yet placed us in a disadvantageous location to study so our physical gifts could help secure the campus.

It was edifying seeing friendly Bake preparing his contact lenses every morning. Bake and his roommate, Robinson “Robby” Alston were from the Bronx, and they were likeable – cool, yet eager to smile. I think Rob could bench press more than anyone on our freshman football team. He played nose guard with a gracious spirit. Bake was a basketball recruit. He was about 6’3” with natural calm. Nothing bothered Bake. He just kept plodding, and observing. I noticed him shaking his head once and guessed he was wondering how a third floor contemporary gained admission to Brown.

At least once a weekend our dorm was cleared at 3 AM when a hockey recruit returned to his room and, drunk beyond cognition, triggered the fire alarm. His behavior changed a Providence Fire Department policy with Brown. Prior to Scott, the fire department never charged Brown for false alarm responses.

I observed and admired Bake over four years. Although we did not share living space after freshman year, we remained friends. He played varsity basketball. He has a great perspective, and an imposing presence. I figured he would go to law school, or return to NYC and carve a unique career. He seemed to have a beacon directing him. He was always in control, and always moving forward.

About a year ago, and thanks to Face book, Bake and I reconnected. I learned he returned to NYC, married his Brown sweetheart, Jessica, and has two children. He’s worked for Manhattan’s Department of Transportation and its Department of Finance for most of his career. He started his MBA at NYU’s Stern School, found the students beyond cut throat, the antithesis of his valued teamwork, and left. A crisis prompted Bake to return to school and to receive his MBA from Baruch College. When we talked for the first time in twenty four years, I was reminded of his eloquent speech and thoughtful insights.

We exchanged pleasantries, caught up with each other’s lives, and committed to stay in touch. Based on our initial conversations, Bake’s life appeared to meet his expectations and my anticipations for him. After reading the blog about my son’s hip disease and surgery last year, Bake shared his Cross with me. This deepened our friendship and opened new communication levels.

In 1998 Bake McBride was diagnosed with Multiple Sclerosis (MS).

Multiple sclerosis (abbreviated MS, also known as disseminated sclerosis or encephalomyelitis disseminata) is an autoimmune condition where the immune system attacks the central nervous system, leading to demyelination. The disease onset usually occurs in young adults. It is more common in females. Its prevalence ranges between 2 and 150 per 100,000. MS was first described in 1868 by Jean-Martin Charcot.

MS affects the brain and spinal cords’ nerve cell ability to communicate with each other. Nerve cells communicate by sending electrical signals called action potentials down long fibers called axons. These are wrapped in an insulating substance called myelin. In MS, the body's own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer conduct signals. The name multiple sclerosis refers to scars (scleroses – better known as plaques or lesions) in the white matter of the brain and spinal cord. This is mainly composed of myelin. Although much is known about disease process mechanisms, the cause remains unknown. Theories include genetics or infections and different environmental risk factors.

Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability. MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or slowly accumulating over time (progressive forms). Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances.

There is no known cure for MS. Treatments attempt to return function after an attack, prevent new attacks, and prevent disability. MS medications can have adverse effects or be poorly tolerated. Many patients pursue alternative treatments, despite the lack of supporting scientific study. The prognosis is difficult to predict. It depends on the subtype of the disease, the individual patient's disease characteristics, the initial symptoms and the degree of disability the person experiences as time advances. Life expectancy of patients is nearly the same as that of the unaffected population.

In 1997 Bake’s legs tingled. At first, he was bothered, yet not too concerned. Over time, the searing jolts intensified. The pain and anticipation prompted him to undergo a battery of tests, including an MRI and an EMG. The tests returned negative. Symptoms continued through 1997 with no conclusion.

In 1998 Bake experienced Optic Neuritis; he lost vision in one eye caused by the swelling and destruction of the myelin sheath covering the optic nerve. The most common etiology is MS. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20% of the time optic neuritis is the presenting sign of MS. Bake received his diagnosis.

At first, he was in denial. As an athlete, Bake always prided himself on controlling his body, his emotions, and his destiny. He felt strong, and kept working out. His identity was wrapped in his physical prowess and gifted agility. As he experienced significant strength loss, Bake’s denial shifted to resistance.

Bake, who once flew through the air to knock down slam dunks, must now give his feet instructions to walk. At Virginia Beach one recent summer, he was rescued from the waves after his body failed to respond to his brain’s command to get his face and body out of the water.

Feeling his body fail forced Bake to acknowledge, perhaps for the first time, lost control. Accepting and managing MS is the hardest, albeit most affirming, challenge in Bake’s life. He constantly proves to himself he’s much stronger, mentally and emotionally, than he ever fathomed. This acceptance has spawned emotional growth and empathy for others.

Prior to his affliction, Bake was less tolerant of people who appeared to be overwhelmed and halted by what he perceived as “normal” (failings or obstacles causing dissatisfaction with health, friends and family, recreation, romance, finance, career, living conditions, or spiritual /emotional well being) setbacks. He assumed they used these challenges as excuses to blame or to wait to be rescued.
He felt they should, as his mom preached: “pick themselves up and get on with getting on”.

Now Bake identifies and empathizes with people struggling with life’s unexpected changes. He figures they may be suffering like him, from a somewhat disguised mental or neurological malady, and he accepts them. He hopes for them. Because of this, his mother in law states she likes Bake more now than before his diagnosis.

How does Bake maintain his incredible calm, focus and positive outlook first admired on Perkins Hall 28 years ago? The MS gave him a renewed appreciation for life’s miracles. He’s more attuned to laugher, beautiful days, coincidence, consideration, art, music, family, and friends. His MS allows him to apply his considerable focusing abilities to be present, to compartmentalize more temporal concerns like finances and work, to address his body’s needs.

According to Bake, his mom resembled a drill instructor. She did not tolerate failure. She demanded her children to plow through problems, to avoid self pity and to keep moving forward. There are many challenges in Bake’s family. Jessica is a breast cancer survivor. Bake’s brother is 6’8” and was a basketball marvel with NBA potential before blowing out both knees and a shoulder. One sister has colitis. Another sister suffered partial, permanent, hearing loss at sixteen months. His siblings were not allowed to wallow in misfortune. All were expected to explore options, to choose a path, and to get on with life. They all evolved into productive citizens.

Post script: When I spoke with Bake for this article, he and his ninety six year old father just watched Obama’s inauguration. Due to the color of his skin, and while being raised in South Carolina, Bake’s father experienced legal segregation, suffering, and limited opportunities in America during the first half of his life, before moving to New York City. Bake stated his father just shook his head in wonder as Obama took the Oath of Office, amazed at this symbolic correction of social ills. My hope is Bake will one day experience similar elation when an MS cure is discovered. Merck is in the process of gaining FDA approval for a promising MS treatment. In the interim, Bake will be energized with his new grandson, Cash.

4 comments:

Joe McCarthy said...

Matt,

This is a remarkable story. Bake's approach to life provides food for thought and a motivation to act. He is more than a role model. He is the essence of hope.

Thanks for sharing this story. I am forwarding it to many others who will, I am sure, feel a sense of blessing in knowing Bake -- even from this distant vantage point.

Matt Paknis said...

Thanks Joe:

Your thoughts are most meaningful given your experience with family members diagnosed with life altering conditions.

Like Bake, you are a blessing to them, and to us.

Nomi said...

I lived on the 3rd floor of Perkins only a few years after you !

Definitely experienced a bonding thanks to the distance from the main campus, but there were not many football, hockey or lacrosse players on my hall.

Tim Blake Nelson, then more of a poet, actor, writer & director roomed a few doors down from me.

Then again, my All County Lacrosse status might have been a factor in my placement....

Hoping your friend is well...

Nomi said...
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