About Me: My Multiple Sclerosis Story

About Me: My MS Story

My name is Joseph. In 1989, I was diagnosed with multiple sclerosis. Since then, my MSer story has traveled many roads. Today, I will share the story of some of my adventures. I want to thank each of you for being here. Whenever we can come together to hear and discuss MS, I believe each of us receives energy to continue the adventure. 

Almost every story has a hero. My story has many. I was born in a small town in central Nebraska. We lived on the old family homestead farm without indoor plumbing or running water; three years later, when we moved to the big house, my mother told my dad she wanted an indoor toilet and water in the house. I can still see dad’s solution: a 50-gallon drum on the roof with a hose piping water from the well and electric cord attached to the stock tank heater keeping the drum’s water from freezing. By the time I was seven, I had three sisters and a brother, and we left the farm and moved to Denver. 

Life with MS is like farming; praying each year that the crops don’t fail, yet knowing it’s going to happen sooner or later.

I remember my grandfather, who was one of my first heroes, telling me, “Joseph, I had a great life. Farming is hard. We struggled through the Depression. We have a great family. I started with my dad’s horse to plow fields. We bought land, tractors, and cars. We replaced oil lamps with light bulbs. We went from listening to the radio to watching television. I got to see a man walk on the moon!” Just as he was a farmer, he planted that memory in me. Personally, when I am older and my daughter is grown, maybe I will have a grandchild who I can tell, “I had a great life. I received the cure for multiple sclerosis!” 

In 1968 at 18, I enlisted in the Marine Corps, which began my career working on computer-based Tactical Data Systems. I loved the technology, and I was never bored because there was always something to learn. In 45 years of working with computers, I experienced many changes first hand. The early computer programs were modified by re-wiring circuits, then machine-level switches, hole punch cards, monitors, mainframes, PC, PDA, cell, and so many other great inventions that changed our lives. MS cut that journey short.

Everyone with MS remembers their first relapse and the scared feelings after the diagnosis—“You have MS.” For me, those words came in 1989, while I was living in New York. When I was still single, after a long business trip to Japan, I was happy to be home, but also very tired. I was going down to the basement where I kept my office, and I slipped and rolled down the stairs. I lay there for 30 hours, thinking I’d broken my back, and then somehow found the strength to get up to drive myself to the emergency room. To this day, I have no idea why I didn’t call an ambulance. I’ve since learned that it’s okay to ask for help.

While I was in the hospital, the doctor told me X-rays showed a lesion on my spine at the back of my neck that looked like cancer. I was still in pain and the doctor’s words didn’t register. Meanwhile, my left hand was numb, and my arm was curled to my chest, frozen, unable to move. The doctors recommended surgery, saying the paralysis would kill me. Tests done the night before showed the lesion was shrinking and they decided not to operate. After days of testing and no clear diagnosis, incredibly, I was sent home under the care of my neurologist. 

Three months later, I was stumbling and dragging my left foot. An MRI showed new scarring in the brain and my neurologist confirmed the diagnosis — multiple sclerosis. When I was first diagnosed, some people would shun me, not come into my office, walk out of meetings, or not shake my hand. I remember well those first days of being shunned. I didn’t blame them. At the time, truthfully, I didn’t know any better myself. MS is something to fear, but it is also something to understand. 

Every MSer I have talked to has experienced some denial. My father showed me the courage and my mother cured my denial. One day while shopping for new shoes the numbness in my fingers made it difficult to tie the laces. Mom saw me struggling and noticed a clerk some feet away. In a clear, distinct voice said, “My son has MS, he needs help getting these shoes on.” Mom did not know it. But, my mother's love cured my denial with a few simple words. 

In 1993, I began taking a disease-modifying drug to help control my disease by reducing the frequency of relapses. But by 1994, I was no longer able to work. On December 8, 1994, the doctor told me I had no choice but to retire or be confined to a wheelchair. As I was walking out the door, I had to hold on to the wall to stop me from falling. I was in shock. I cursed, “Damn it MS! You stole my career. You stole my life.” The walk to my car took forever. January 1, 1995, was not a happy New Year.

The next month, I met Debra, the woman who would become my wife. She refused to give up on me, and two years later, we were married. From the moment we met, she became my hero. I also say, she became my “Happy Heart.” I went from age 46 to 16—I would leave love notes on her car and sign them with a heart that had a smiley face inside. One day, she asked me what that was and I said, “Well, that’s my happy heart.” 

My wife and I had been married for seven years, and my daughter was about five. At that time, I had numbness throughout my left side, and I used a cane in my right hand to help me walk. One day, my wife said, “Joseph, you don’t hold my hand anymore while we’re walking.” I started analyzing what she said, and I answered as an engineer, “Well, I don’t get any charge out of it.” She was hurt, and said, “I can’t believe you just said that to me.” I was surprised, too. Several months later we went to the Can-Do program at the Jimmie Heuga Center in Vail. We were listening to a lecture, not specifically on this topic, but we both had a revelation and realized a truth about MS numbness. One of the reasons for holding hands is that it feels good. Because my hand was numb, the emotional mental impulse to reach out and hold her hand got lost because of the MS. I realized it was numbness and had nothing to do with my love for my wife. We’ve worked around it…sometimes we’ll be walking and she’ll bump me and I know what that means. It elevates my awareness.

After 19 years of living with MS, my physical condition had become very stressful. I was putting on weight. Walking was fearful. After my first relapse, I walked almost everywhere with a cane. By 2008, at times, a second cane was close at hand. The situation was worsening. My excuse was MS. My daughter was getting older and my wife was taking on more responsibility. I started to change my thinking, creating a desire to overcome my lack of mobility. What followed were days, then months, and then years of personal training. I have biked five MS 150s, and two 400 mile multi-day treks, and broken both my arms. 

In 2013, I started to lose the feeling in my right foot, making it difficult to slip my feet into the bike pedals. My normal way of getting on the bicycle was to lay it down, stand on my “MS” leg, and swing my good leg over. And then stand the bike up. But this relapse made it impossible for me to do that, and that was my second worse day with MS. All that training, all that work, all those perfect miles: Gone.

After two weeks, with treatment, I noticed gradual improvement; however, the damage was done by that relapse still kept me from cycling. I still look at my bikes. I look out the picture window, look at the mountains, and watch great riding days pass, determined to someday ride again. 

Our journey with MS is mapped by relapses and remissions. With the modern treatments for relapses, the personal challenge is to stay in remission. Each day of remission is a chapter in a hero's journey. I’ve learned that one of the hardest things to overcome is myself; but I’ve also come to realize that I, too, am a hero on a journey. Every person with MS lives their own hero’s journey. The day you hear the words, “You have MS” the story began. Along the way, we meet mentors, support partners, treatments, remissions, and the disease. Because we adapt, the journey continues. MS is just an excuse for an adventure. 

For me, the word “hero” stands for “Helping Everyone Respect Others.”  Remembering how I was once shunned, I educate others that MS may be something to be afraid of—but it’s also something to understand. You can be your own hero by being proactive, discover, learn and know all your options for your MSer life. I’m grateful to my wife and my daughter, and to all the heroes I’ve met along the way. And, each of you—you are all my hero, too. 

Bicycle: Denver Post Newspaper Boy

Denver Post Newspaper Boy

Joseph Flanigan, Loveland, Colorado. September 2016

Sometimes when I am cycling, I think about 1961, I was 11 years old, and the two years I delivered The Denver Post newspaper near our home in Aurora, Colorado. I remember Mr. Colten, the Denver Post paperboy manager, and my job of delivering the Denver Post every day. Every afternoon and Sunday morning to pick up the papers, for my route,  I would ride my bike about a mile and a half to a converted garage called the newspaper shack. Inside, attached to the walls, were folding benches. The Denver Post truck would drop bundles of papers off at the newspaper shack where the boys would unbundle and count out the number of papers for their routes. Carrying the stack, they would go to their assigned folding bench, fold, rubber band and load the papers into the bike bags. Often there was a race to see who was fastest. Once loaded, each boy road to their route. A good route was 50 papers. Canvas bags wrapped around the extra-wide handlebars. The bags were the same as the over the head shoulder bags the walking paperboy's bags where one bag hung in the front and one bag hung in the back. When Mr. Colten gave a new boy his bags, the other boys helped to cut one shoulder strap in half. The bags draped over the handlebars, one bag hung on each side of the front wheel.  Ends of the cut strap attached to the handlebar end with a hose clamp to keep the canvas tight to the bar.  The last step was to wrap bags around the handlebar ready to be unwrapped and filled with the day's newspaper.

Delivering papers was just part of the job. We would solicit subscriptions from people moving into our routes, watch for people moving out and do monthly door to door collections -hoping for a small tip. That was tough work but it did not seem so hard at the time. If the weather was rain, snow, hot or clear, every day the paper had to be delivered. There were no days off. When our family went on vacation, I would have to trade days with another boy in exchange for doing each other's routes  On those days, to do both routes, it meant two loads and two trips to the newspaper shack. Helping each other out by riding a double route was just part of being a newspaper boy.

The bikes were heavy, and the bags hang off the handlebars full of newspapers made the bikes heavier and unstable. The bikes always needed some repair, flat tires, new tires, bent wheels. We had to learn to be our own bike mechanic. Of course, any repair cost came out of our part of the collections. In the winter, hats, gloves, coats and boots had to be in good repair. The first year I rode was on a  bike Dad got from another news paperboy. The bike was well used, but I delivered papers with it for a year and saved my money to buy a new Schwinn.

Sometimes on Sunday morning, if it was snowing, Dad would take the 55 Chevy station wagon and drive me to the newspaper shack. I would fold and rubber band each paper and load the papers in the back of the wagon. After arriving at the route and dropping the tailgate, sometimes sitting, I could throw the paper and hit the porch.  But, because of the snow, I would grab an armful of papers and run zigzag down the street, making sure the papers would be dry. Sometimes the paper would have to be put behind the screen door. Dad was pretty good about helping me, but I can still hear Mom saying, "Harry, you have to help Joseph with the papers this morning or we will be late for mass."

When I mentioned being a newspaper boy did not seem like hard work, most likely that notion came from being on a farm until I was 7, before we moved to Denver. We still had family on farms, and visits always included chores. I remember my father and my uncle milking cows. My grandfather out in the field plowing or mowing. Grandma took care of the house, cooked and raised chickens. Everybody make sure the animals had care, water, and feed. Twice a day, every day the cows had to be brought in from the pasture, feed and milked. Riding a bicycle was fun. However, doing the paperboy work was riding just part of the chores. Our family was poor, but we knew how to work. Mom took care of us five kids. Often Dad had two jobs, sometimes 3. He was good at painting houses. During the day, Dad worked as a janitor, and at night he painted houses for realtors. Many nights after paper delivery, Dad would say “Grab some supper, I need help painting.” Of course, I knew what he meant. While dad painted, I did the sweeping, hauling trash, scrubbing, pulling tarps, moving ladders, cleaning brushes. That is just the way it was, complaints were meaningless and got in the way of getting the job done.

Labor Day, Monday, September 2, 1963 was my last paperboy ride. The following Tuesday, my brother Pat became a news paperboy.

When I talk to pro bicycle racers, I can look them straight in the face and claim I was a pro cyclist at 11. Every day, in all kinds of weather, we road for money, delivering papers in a timed race.

In 1954 we still lived on our farm in Nebraska. The house sat about a quarter-mile off the gravel country road. The driveway to the house was a dirt road. May 12th was my 5th birthday. I never expected much for presents. About mid-morning Mom and Dad walked me out the front door. Sitting in the driveway was the most beautiful site – a red bicycle with white training wheels.  Before long, I could ride that bike all over the farm. But, never ever on the county road. In 1956, we moved to Denver. The red bicycle sold at the farm auction.

After my newspaper boy days, I went on to motorcycles and cars. Forty-six years later and 19 years of living with MS once again, bicycles came into my life. The first ride was 10 feet before falling. Getting back up, then it was 30 feet. And again, a little more each time. My memory recalled that red bicycle and all those newspaper boy days. Eventually, confidence recalled the riding skill that was never lost.

Veteran: Veterans Day Speech at Loveland High

Veterans Day Speech at Loveland High

Corporal Joseph Flanigan

Marine Corps

January 1968-January 1971

San Diego, California

Veteran’s Day Speech, November 11, 2014.

In 1967, when I graduated high school, I wanted to be a nuclear physicist. I just thought it would be amazing to study the insides of atoms. Well, it was Vietnam time, and the draft enlisted youth to the military as soldiers. In college, I soon realized I needed more money for tuition, and I volunteered for the draft to get 3 years of college for 2 years of service using veteran’s benefits. While in boot camp, I learned the first of many Marine ideals, like, “Once a Marine, always a Marine.”

On November 10, 1775, the Second Continental Congress passed a resolution staring the Marine Corps. From that date, every Marine is trained in combat to defend our United States. As I was to learn, for every Marine on the front line, there are many jobs Marines do to support missions. 

Yesterday was our 239^th birthday. 

While in boot camp, you hear the drill instructors shouting. “In my Marine Corps, we do 100 push-ups before chow!” “In my Marine Corps, we don’t walk, we run!” “In my Marine Corps, we crawl on our belly to rest!” And you think to yourself, this guy is insane, always saying “In my Marine Corps” before every challenge and command.

While in bootcamp, you take lots of tests that will determine your job in the service. My results came. “Private Flanigan, you have been selected for a new job. Something called computers. I didn’t know anything about it. You don’t have to take the job. If you don’t, you will be shipping out for Vietnam.” At 18, I just made of the smartest life decisions, “Sir, I accept.” That decision began my 45-year career in computer science.

Boot camp graduation, the drill instructor hand you the Maine Corps Eagle, Anchor, Globe emblem, shakes your hand and says “Welcome to my Marine Corps” And then you understand.

For the next year, I went to a special Marine Corps school, completing 4 years of college courses in 48 weeks. I still remember the first day of class, and the first words of the instructor, “How high can you count on your fingers?” By then, I already knew in the Marine Corps, the easy answer was always wrong. After instructed listened a few wrong answers, he announced: “In this class, you will learn to count.” I learned to count, many did not.

We were to training on Tactical Data Systems. This was the first generation of computer-assisted flight and ground weapons. From the ground system, officer flight controllers commanded combat missions on military targets using data from radar, missiles, aircraft, and other armaments. Even though I was trained at the highest level, I was a Marine and could be transferred with the systems into combat. The Marine Corps changed my dream of looking into the physics of atoms to using atoms of electricity.

My duty was in Garden Grove, California,  testing and preparing new systems for deployment. We worked long hours in 6 foot cubes chasing computer circuits. To change a programs in second generation computers, technicians rewired circuits. 

Occasionally we would be assigned special duty. Marines who died in Vietnam would return to the states at the El Toro Marine Airbase. Today, I can still see the coffins being unloaded from giant cargo planes. Standing in company formation, stone silent, we watched, and said silent prayers.

When a Marine leaves active duty, we honor each other, no longer officers or private, just Marine. In greeting other Marines, we say, our motto, “Semper Fi”, forever faithful.

Bicycle: Letter to Jimmie Heuga

Happy Birthday Jimmie

Sept 22, 2012

Dear Jimmie,

This is a letter I wrote to Jimmie Heuga, ski racer, MS champion, my pedal partner on my first 150 Bike MS ride. His was the inspiration for Can    Do MS in Vail. September 22 was Jimmie’s birthday and he died February 2010.  Two years later, on his birthday, I did a bike ride that was a challenge for me. This is a letter I wrote to him about the ride.    

Dear Jimmie,

This is a letter I wrote to Jimmie Heuga, ski racer, MS champion, my pedal partner on my first 150 Bike MS ride. His was the inspiration for Can    Do MS in Vail. September 22 was Jimmie’s birthday and he died February 2010.  Two years later, on his birthday, I did a bike ride that was a challenge for me. This is a letter I wrote to him about the ride.  

  

On Saturday the 22nd, 4 friends and I rode a bicycle ride I tagged as the CanDo 50.  The ride heads west from Loveland. At the base of the foothills, the route turns north to Mansoville, which begins the climbs over the Horsetooth Reservoir Hills. Just before Bellvue is Bringham Hill Road that heads back east to Fort Collins.  At Overland Trail, we head south on streets and trails to Loveland.

At the start, the weather was slightly hazy and cool. I admit I was worried about doing this ride because I did not know if I could climb the six Horsetooth hills in the same ride. While the hills are not much by Colorado climbs, to me each represents overcoming MS challenges.  When I started riding to improve my overall health and put my MS on notice that I was in charge, I remember each of those hills because many times I had to get off the bike and walk up them.

By mid-morning, the haze is lifting and the two of the west Horsetooth hills are finished. Because I trained on those hills, claiming them was still work, but not difficult.

A turn north and across the dam, the forth ill is a short steep climb above the reservoir. Silly, how sometimes just the thought of a thing will block success. Months before today, I walked that hill at least five times or more. At the base, looking up I said to myself, “That’s not much of a hill, what are you worried about?” Sure enough Jimme, it was not much of a hill today. Next was hill 5, it is long and steep, and provokes heavy breathing, but the MS never fatigued. The downhill is great  Hill six is a bump but it marks the turn back to Loveland.

I am sure you remember, that climbing hills with MS takes special conditioning, the descent takes even more conditioning. Because downhill is faster, it requires faster reaction times and coordination. It’s the same for all riders, but for MS’ers, fatigue is riding out in front looking for a way to cause trouble.   You get to the top, legs are burning, lungs gasping, heart-pounding, arms and hands weak from gripping the handlebar, and you see that downhill. In quick order, not only does the ride focus change, but you must shift from low gears to high gears, test brakes, relax tense muscles, change line-of-sight focus, switch mental fears, watch for obstacles, plan a safe path, adjust riding positions, anticipate curves, heighten the  back sense, and then look for that downhill freedom path to make the ride. 

 For me as an MS rider, both the climb and the descent have MS challenges. MS  has no place is during the downhill ride. The MS cannot catch me there. I let go of the struggles, trust my bike, tuck down, smile and laugh at the fatigue. 

By noon, my friends peeled off, each heading home. That left three miles to finish the ride by myself. This was a great day because those last minutes gave me time to reflect on the ride and remember the one time I met you, the day you signed my helmet as my first pedal partner. As an MS Ambassador, I told that story many times and the importance of fighting MS in many ways.

At the end, the CanDo ride was 47 miles. I rode the 6 hills without walking a single one.  After getting back to the start, I still had a couple of miles to get home. No problem.  We had a great ride pedal partner.

Happy Birthday, Jimmie!

In the beginning

The title of this blog is "A Man and His Ideas". Everybody has ideas. Over the years, I collected a few. Some of the blog entries are prose, some are just a drawing or a picture.

The URL name for the blog is ideas.resipso.com. The term resipso is Latin slang for res ipsa loquitur, which means "the thing speaks for itself." Lawyers use the term to argue negligence. But, in nature and art, the presence of the thing speaks for itself to create a personal affinity with the thing. For an idea to be a thing, the idea needs some substance that allows others can hear it speak.

Res Ipso

This Blog is about my experiences, collections of thoughts and ideas. In May 2019, I was 70. While the calendar counting of age does not disturb me, in fact, just the success of making another year is exciting. During the natural progression of age, our bodies make many changes. The strength of youth changes to the strength of canes. Because of the show shrinking of the brain, some people believe as we mature mental faculties diminish.  Whereas I believe the brain needs more neurons to build filters that separate fact from fiction. Part of life progress is to build those filters. Then as we age, the efficacy of filters discharge the need for unused neurons, consequently, the brain shrinks.

I do not know if science considers filter and discard neurons as a fact-based concept. To me, the terms explain a man and his ideas.

Idea File

In 1970, I was in the Marine Corps, where I worked on data communication for Tactical Data Systems. The job often required long hours of maintenance watch that meant just being nearby to respond to alerts. Everybody shared paperback novels. One book I read, and I cannot remember the story or the author. In the book was something called and Idea File that contained scraps of this and that. Occasionally, the author solved a problem in the story by pulling an idea from the file. Over the years, I kept and lost many idea files. Often, the ideas disappeared with the file. My current idea file is a chaotic collection of papers, journals, bookshelves, and computer files.

One's brain experiences a gradual fade of memories and memory details. That is a science-based fact. I consider memories to be stories, and the mind is the author. My favorite description of the brain's processes is that the brain is a discrimination engine. The purpose of the engine is to build a mental representation of the unfiltered information pouring into the brain. In life, with experience, the brain acquires discrimination rules to construct the models. As part of the construction process, the brain presents experinces to the mind to build memory stores consistent with the rules and discards non-relevant information.

A rule is just a representation model. The discrimination engine also creates use of mental models. Mental models persist as facts and rules. Both are truthful representations meaning the model "is this" and anything else "is not" this model.

The seeds for the discrimination engine probably emerge from survival instincts. Infants know facts and rules.  Models like hunger, crying, food, feeding are probably not the first seeds, but they are visible expressions of models.