What if...

I've always enjoyed playing "what if" games.  When Steve and I first started dating we often played this in the car, I guess was a good "getting to know you" game of hypotheticals.  One "what if" scenario I find interesting is thinking about if certain personal or historical events had never occurred.  What if I had grown up in a city, how would my life be different? What if I hadn't decided to go to SUNY Geneseo (my first evaluation was that it smelled like cow manure)?  On a larger scale, what would the world be like if Hitler didn't exist?  You get the idea.

The "what if" that struck me recently was: What if my grandmother didn't have Multiple Sclerosis?  One answer could be, maybe I wouldn't have it, since there seems to be a genetic component to the disease.  Ironically though, the answer for me was that I wouldn't exist.   Without this disease that crippled my grandmother, and later myself, my parents most likely wouldn't have ever met. Allow me to explain.

Tokyo-1946

Before marriage, children, and Multiple Sclerosis, Anita Bear was a singer.  She served with the US Army in Tokyo, Japan as a Civilian Actress Technician, entertaining the troops through her radio show.  She loved Japan and as a young woman exploring the world for the first time I'm sure she was having the time of her life.  The people she worked with must have been a close group of friends and I can imagine the laughter and music that filled their young lives. The announcer for her show, Edward McDonald, later became her husband, and the pianist who accompanied her, Johnny Baker, was a close friend.  

When they returned to the United States, Anita and Edward married and started their family.  He continued to work in radio, and later in early television and she worked hard to raise their 3 children.  Over the years they lost touch with the people they had served with in Japan.

Some much needed help- 1968

Anita McDonald (Bear) was in a tough spot.  She was struggling to manage her MS and take care of her 3 children, now nearly all teenagers, without the help of her husband, who had left several years before.  Unable to cook, clean, or care for herself in many ways, her daughter had taken on these duties at a very young age.  The family was struggling to get by.

Out of the blue, Johnny Baker contacted Anita and came to visit.  While she was too proud to ask him for help, he saw how his old friend was struggling.  When he returned home to New Jersey, he asked his church for help.  They contacted the First Presbyterian Church of Northport, NY, where Anita was living. 

A Deacon in the church, Emma Meissner, came with the pastor to visit Anita and see what kind of help they could provide her and her family.  Emma and Anita instantly became good friends, talking on the phone each night.  Emma and her husband, Claus, opened their hearts and home to Anita's family.  Soon the Meissner and McDonald children were friends and the families gathered together for birthdays, holidays and other occasions. 

Emma and Claus decided that Anita and her family really needed a better home, one equipped to fit Anita's wheelchair.  in 1969 they bought the McDonalds a house and had it renovated to accommodate Anita's needs.  As you would expect, they had a ramp built and made sure doorways and hallways were wide enough, but they went beyond and had her bathroom built to match the one she was accustomed to using.  Having a place to call home was a blessing for Anita and her family, but having the friendship and unwavering support of Emma and Claus meant the world to them.

A Love Story-1978

 Now it just so happens that Anita's daughter, Lisa, and the Meissner's eldest son, Klaus, were close in age.  When they first met there were some teenage butterflies, but as their families grew closer, their relationship developed into a good friendship.  After graduating from high school, they went to college and graduate school, staying in touch and of course seeing each other at family gatherings.

When Lisa had begun working and Klaus was completing his graduate work at SUNY Albany, she would often come to visit him.  During one of these visits, Klaus decided that he really wanted Lisa to become more than just a friend.  He wanted a relationship.  She pushed him away.  It was just too complicated.  They were practically family! 

She left to drive home, but her car had other ideas.  Shortly into the trip it broke down, leaving her stranded.  She found a payphone and called Klaus for help.  It was that gallant rescue that changed her mind and she agreed to try a relationship with him. 

Having had plenty of time (10 years) to get to know one another, they quickly moved in together and in May of 1979 they were married.  In the First Presbyterian Church of Northport, NY.

In 1980 my brother, Luke, was born and I followed 22 months later.  20 years after that I was diagnosed with Multiple Sclerosis.  But would I be here without it?

Me and Luke on Christmas (probably around 1988)

Senior Year- 2003-2004

Dragon Naturally Speaking

With Dad and Mom at graduation 

After such a rocky junior year of undergrad, I was apprehensive about my senior year.  Would my symptoms come back?  How bad would they be?  In preparation for the worst, my parents bought my a speech recognition program (I think my mom was haunted by the memory of being stuck in a room with me for 5 days writing term papers), and a new computer that could support the software. 

I spent hours training the software to recognize my voice.  Anyone who has ever dealt with an airline or other company that requires you to speak to a computer before you can talk to a real person (if you can ever talk to a real person) knows that it can be a frustrating experience.  In 2003, this "top of the line" software was not much different.  It misunderstood me regularly.  I had to learn to enunciate carefully and learn the commands for punctuation.  Editing was a nightmare.  Still, there were humorous moments, speaking my friend's names or ridiculous sentences into the program and seeing what it came up with. 

Celebrating my 22nd birthday in style

Fortunately, I never had to use the software.  I made it through senior year with very few symptoms.  Of course I had the residual changes in hot and cold sensitivity and some numbness, but nothing that affected my ability to type or get around.  The only new symptom that I developed was a twitch.  Whenever I relaxed, my body would jump a little.  Sometimes just my shoulders, sometimes it was my entire body.  It was a little distracting, but since I was never relaxed in class or at my student teaching placements, it never caused me any embarrassment or difficulty.

The original crew from Jones Hall

Graduation

In May, I sat (in the freezing rain) with my friends of the past 4 years and listened to Senator Schumer give his commencement address.  They had helped me through the toughest moments of the past 2 years.  Without their support, I don't know if I could have made it to graduation.  It was hard knowing that we would not be living so close together, but we promised to keep in touch and visit frequently. 

That summer, for the first time, I didn't go back home.  I stayed in Geneseo and lived with my boyfriend, Steve.  Even thought it was only a for couple of months, it was big step for me, and for us, but it felt right.  Even then I knew that I wanted to be with Steve for the rest of my life. 

When summer ended, I moved in with a girl who I had lived with the previous year and began my masters program.  At that point, my MS had been relatively dormant for almost a year.  Thankfully, it remained dormant even through some stressful and emotional times that following year.  My next attack didn't occur until the summer of 2005. 

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Giving Back, Not Giving Up - Summer 2003

The Rustic Riders Are Born

Following my diagnosis, I tried to become as educated as I could about current research and treatments for MS.  I became a member of the National MS Society, as did my parents.  They provide information about current research, stories of personal struggles and triumphs, and strategies for handling all sorts of MS symptoms on their website and in their quarterly publication, Momentum.  Local chapters provide support groups for individuals with MS and their families, and educational opportunities for people wanting to learn more about the disease.  While learning about all of the resources available to us, my mother discovered the Bike MS fundraiser.

The Bike MS fundraiser in Eastern NY at the time was a 2-day, 150 mile supported ride through the foothills of the Adirondack Mountains.  It was the perfect fundraiser for several reasons: 1- I had done a 5 day, 270 mile ride in 2000 to raise money for Huntington's disease and fell in love with road biking.  2- While my legs were still a little "lazy" sometimes (one foot would drag a little when I walked or ran), I could still clip into my pedals and ride as though nothing was wrong.  My parents, my boyfriend Steve, and I decided to form a team.

To form a team for the MS Bike ride, you needed to decide on a name for the team.  Being ever critical of anything my parents said, I nixed all of their ideas (even though I didn't have any good ideas to offer).  Being the outsider (of sorts), Steve came to the rescue with the name "Rustic Riders".  We had a team!  Several other family friends joined us in our fundraising efforts and through phone calls, letters, coffee houses, and some door-to-door we were able to raise a lot of money for the National MS Society.

Now it just so happens that my parents had an unnamed band at the time.  They performed mostly covers, but a few original tunes by one of the band members.  They had tossed around name ideas for a while, but they kept getting nixed by one band member (I guess he and I had something in common...).  When my parents mentioned the team name "Rustic Riders", he thought it would make a great band name.  While the band changed over the years, most notably when my mother began writing and performing her own songs, the band name stuck.  The Rustic Riders will be performing, among other places, at this year's Bike MS, the Hudson River Ramble.

MS Strikes Again

While training and fundraising for the MS ride, I was also taking summer classes at Geneseo.  For the first time I was not living in a dorm or my parents' house.  I had a tiny furnished room with a shared bathroom and kitchen.  It was here that I first noticed the signs of another MS attack.  Once again, I had numbness, but primarily on one side of my body.  This was coupled with a change in how I sensed hot and cold.  I began to have trouble telling if something was hot, until it was too late and I burned myself.  I continue to struggle with this symptom now, frequently burning myself on the stove and oven.  Cold didn't feel cool or pleasant (as it should have in the summer heat), instead I experienced pain.  Taking a shower was not a fun experience.  The little droplets cooled on their way to my skin, and when they hit me it felt like hundreds of needle pricks.  Along with this irritating change of sensation came increased difficulty walking.  What I like to call having a lazy leg.

Fortunately for me, I could have a nurse come to my apartment to deliver the IV of prednisone.  This saved me 3 trips to Rochester and allowed me to attend all of my classes.  Thankfully the prednisone worked its magic quickly and I quickly regained my full mobility.  This time though, I did not have a full recovery.  The sensitivity and some of the numbness hung on, and continue to this day.

It was this inability to fully recover that really struck me.  I wasn't invincible.  I really did have this disease and really was going to be feeling the effects of this for the rest of my life.  I could have crawled into a hole of depression over this realization.  But for some reason, my upbringing, my supportive family and friends, my inborn resilience, whatever it was, I chose to make the best of what was handed to me.  I chose to take care of my body, stay physically active for as long as possible, and to give back to the MS community that had already given me so much support.

When it was time for the MS bike ride, I was ready, or at least ready enough.  My parents, Steve and I all completed that first MS ride healthy and full of the kind of pride that comes from helping others.  I think we even signed up for the next ride that weekend.  The tradition of riding the Bike MS ride had begun.

I can't find any pictures from that first ride-maybe we were all too exhausted!  Here are a few from the 2006 ride.

I rode the first 75 miles on a mountain bike that year-brutal!  

Steve biked all 150 miles on his!

Dad-the photographer

My mom and her good friends, Marta and Peg

Help me reach my goal of raising $5,000 for the National MS Society!

Diagnosis Confirmed- Spring 2003

A Change of Plans

Following my frightening MRI results at Christmas, my body basically returned to normal for several months.  While I remained alert for the slightest changes in my body, as more time past I was able to relax and forget (at least a little bit) about the possible diagnosis that was looming over me.  I continued to work towards my degree in Elementary and Special Education at Geneseo, celebrated my 21st birthday in the traditional American fashion (making a complete fool of myself, I'm sure) and fell even more madly in love with my boyfriend, Steve.

While life had returned to normal, I now had a drive to accomplish something that may not be possible if I really did have MS.  I had been a runner since middle school, but the longest race I had run was a 10 miler (shortly before my first symptoms).  I knew I wouldn't be ready for a marathon, but when my mother signed up for one nearby I decided to try the half-marathon distance.

Anyone who has been to Geneseo, NY in the winter knows that the wind blows across the Genesee River Valley and up the hill, whipping students and townies alike with a blast of cold and snow.  Not the ideal conditions to begin training for my first half marathon.  To prepare I began running on the indoor track above the hockey rink.  You need to do a lot of laps around a 200 meter track for an 8 mile training run.  I stuck with it though and was getting into pretty good shape.

By this time, spring break was approaching and Steve and I had decided that we really wanted to hike a portion of the Appalachian Trail.  We excitedly read about the trail and weather, figuring out what areas would be passable that time of year.  I was so excited to initiate him into the world of backpacking, and to do my first trip without my family.

Then, several weeks before spring break, I began to go numb again.  This time it was my feet and legs.  It felt as though I was walking on stilts, and not at all well.  I couldn't walk straight and to get up the hill to class I required assistance from 2 friends, one on either side of me.  Stumbling around campus as though drunk, I joked that I was going to get a reputation as a lush.   My parents came down as soon as they could and brought me to the MS Clinic at Strong Memorial Hospital.

There was no question of diagnosis.  The doctors immediately began treating me with an IV infusion of prednisone, a steroid commonly used to treat MS symptoms.  For 3 days I returned to the hospital to get my hour long infusion and discuss my prognosis and long term treatment options.  At the time there were 3 possible medications.  All 3 were interferon drugs aimed at the immune system.  I chose the one that had the strongest effect in clinical trials.  I recall the doctor telling me that it reduced attacks and inflammation by about 30%, but only in about 30% of patients.  Not exactly a cure, but maybe, if I was lucky, I would be one of the 30%.

A nurse came to my dorm to teach me how to self-inject the medicine, which I would need to do 3 times a week.  She also taught me the trick of taking an ibuprophen with each injection to avoid feeling the flu-like symptoms that come with each injection.  Even after 10 years on the same medicine, I still forget the ibuprophen sometimes and wake up with a fever, shaking uncontrollably.

The IV of prednisone hastened my recovery, but it still took a while for my balance and coordination to return to normal.  I kept exercising, strapping my feet into the recumbent bikes in the gym, but I had lost too much to be able to run my half-marathon.  Our plans to hike the AT were scrapped after we realized that I couldn't manage scrambling over rocks and roots when I was still getting around campus with a cane.

With the help of family, Steve and I were able to enjoy spring break

Knowing how devastated I was about forgoing the race and the AT, my parents gave Steve and I plane tickets to Florida.  We spent our spring break visiting my grandparents.  Not exactly what we had planned, but in retrospect, I'm so glad we had that opportunity, as it was the only time Steve was able to meet my grandfather. 

As the semester ended and I began to prepare for my senior year, I was terrified that MS would prevent me from completing my student teaching.  What if my symptoms came back in the middle of a placement?  Still, I was determined that somehow it would work out.  After all, I had an incredible support network of family, friends and professors.




Click here to donate to the National MS society and help me reach my goal!

My journey begins

Grammy

Grammy

Multiple Sclerosis has always been a part of my life.  I grew up close to my maternal grandmother, Grammy, who, by the time I was born, could only move her head.  Grammy diagnosed long before MRI technology existed, so she was given a blindfold task.  She was blindfolded and asked to feel various items.  As a mother of a 6 month old, a 2 year old (my mother) and a 6 year old she was unable to feel a diaper pin.  After her diagnosis she made a visit to a professor she knew who was living and teaching with MS.  His determination to continue to live a full life helped give her strength as she struggled with the disease.

I have fond memories of sitting beside her on her bed in the nursing home, stretching out her fingers that would involuntarily curl up.  She always looked glamorous to me, even in her hospital bed, with her nails always painted, her lipstick just right, and her cigarette holder.  Although she could no longer perform as the singer she used to be, she certainly looked the part to me.

When I wrote my first research paper in high school, I chose the topic of Multiple Sclerosis.  Something that was so familiar, and yet I knew so little how the disease had managed to cripple my grandmother's body.  I learned about the myelin sheath that coats our nerves and how the body's immune system can go haywire and begin attacking the nerves, causing damage and scarring.  I discovered that it was this scarring, or sclerosis, of the nerves that caused the paralysis, numbness, and pain that my grandmother experienced. I learned that it can also cause fatigue, cognitive dysfunction, vision loss, balance and coordination problems, bladder and bowel dysfunction, vertigo, and emotional changes.  I never imagined that I would experience some of these symptoms myself.

The girls who helped me through my first symptoms

An Unwelcome Arrival-October 2002

In the fall of 2002, my life couldn't have been better!  I had just returned from a semester abroad in New Zealand, I started dating this amazing guy, I was living with a great group of friends, and enjoying every minute of being a student at SUNY Geneseo.  Then it happened.  I woke up with numb feet.  I ignored this, thinking I must have slept funny.  But then the numbness spread.  By the time I went to the health center my entire body was numb, with the exception of my face, and I was unable to button my clothes, write, type, eat or brush my hair.  I was sent immediately to Strong Memorial Hospital in Rochester, NY, where the emergency room staff considered my worst fear (that it could be MS).  But because I had no history of these symptoms, the physician suggested that it may just be stress.  I was happy to accept that explanation (the idea of MS was just too scary).

For the next month, as my body slowly returned to normal, I was given amazing support from my friends and family.  The girls I lived with helped me dress, put on makeup, brush my hair, and tie my shoes.  Somehow that amazing guy, Steve, still wanted to be with me and he patiently helped me do the simple things I was unable to do for myself.  I remember him helping me tuck my hair behind my ears and cutting my food.  My term papers were deferred and I will never forget the marathon writing session that I spent with my mom that Thanksgiving.  We spent the entire vacation holed up in my cousin's bedroom, with me dictating and her typing all of my papers for that semester.

By Christmas I was fully functioning again, and while I was happy to move on and think that those symptoms were just a fluke, my parents wanted more answers.  It was off to see the neurologist and get my first MRI and a spinal tap.  When the results came back, I cried.  There was scarring on my brain, but only in one area.  I probably had MS, but they couldn't give me a diagnosis because there were not multiple scars.  I just had to wait to see if I would have more symptoms.