Lessons Learned

October 29th, 2012: Yesterday, Steve and I participated in a 5K benefit run for MS.  Being close to Halloween, there were many people in costume wandering around.  Before the race started I noticed a girl in 80's style workout gear who looked strikingly like the younger sister of a friend and cross-country teammate from high school.  Maybe that primed me to be thinking of my first races, long before I had any clue that MS would someday affect my mobility, but as the race began the course was like a flashback.  It started on paved road, but quickly veered off onto grassy and sometimes muddy fields.  As it looped around one field and the onto the next, I was reminded of many fall 5K races with the Saranac Lake cross country team.
*cue flashback sound effects*

Sometime during the summer of 1994:  My brother, Luke, had been running cross country for 2 years and was enjoying the sport.  He also saw that while the boys team was small, the girls team was miniscule.  There were only 2 girls on the team, not even close the the minimum of 5 needed to compete as a team.  He knew that I am completely uncoordinated and had no chance of succeeding in most sports, but he thought I could probably run.  My parents had measured out distances on our road and with Luke pushing me, I ran a mile with him.  His encouraging words convinced me that I should give cross country a try, so I joined the team as a modified runner.  Another friend, whose brother ran on the varsity team, decided to join and we started training with the team in August.  

Fall 1995:  Perhaps word got out about the talented (and rather cute) boys team, maybe it was the beginning of a running boom, but the next year 4 more girls joined the team.  Partway into the season, along with several other girls, I switched from running modified (1.5 mile races) to competing at the varsity level.  Finally we had a girls team that could actually compete!  There were exactly 7 of us, just barely a full team!  By some miracle, we made it to the state meet that year along with the boys team.  We didn't stand a chance at doing well at that level of competition, but it was amazing watching the boys team win the State Championship!  

Fall 1999:   By my last year of cross country, the team had grown quite large.  The talent pool was deep and, while I was no longer a scoring member during most meets, I enjoyed training and competing with such a large group of like-minded runners.  The comaraderie of the team was one of the few things I would miss about high school.  

Some of the members of our team have gone on to do great things athletically. Quite a few have competed professionally in various sports, and some have represented the USA in the Olympics (even bringing home the Gold in one case).  While I have neither the talent nor the ambition to achieve that level of athleticism, training with such supportive people and high caliber athletes taught me a few things that I have carried with me:

1: Never give up.  There are bound to be setbacks and disappointments in life.  Learn from them, pick yourself up and keep going.   

2: A positive attitude is an invaluable tool.  Always focus on the positive, the silver lining to bad situations.  By not dwelling on the negative, you are free to enjoy life to the fullest extent possible. 

3:  Stick together.  Surround yourself with positive people who will be there for you when you are at your worst.  Be there for them and they will be there for you.

October 29th, 2012: It turns out that the girl was, in fact, the younger sister of my old friend and teammate.  After the race we reminisced about the old cross country course (she had joined the team the year after I graduated), and our coaches.  Here we both were, many years later, both still running.  I hope, 10 years from now, I'll still be running.

October 13th, 2012: The Hartford Marathon

5:00 a.m. The temperature outside is 32 degrees, the first frost of the season.  The synchronized alarms beep in our bedroom and the guest room where my parents lay sleeping.  We all stumble out of bed and begin the process of getting dressed and ready for race day.  Oatmeal is made, coffee is brewed, and bagels are toasted.  Steve and Dad deliberate over how many layers of clothing will be needed to comfortably ride bikes on the course.  Gloves and hats are dug out of storage, bikes are loaded on the bike rack.  By 6:15 a.m. everyone is dressed and, coffee mugs in hand, we pile into the frost-covered car.

6:45 a.m. Our quick and uneventful drive to Hartford suddenly grinds to a halt.  Somehow none of us thought to consider race traffic delays when planning our timeline for the morning.  According to our GPS it is taking us about 5 minutes to go 1 tenth of a mile.  Mom and I still need to check our bag, Steve and Dad are supposed to arrive to pick up their volunteer gear and instructions by 7.  At this rate there is no way they can make it.  At 7:15 we were close enough for Mom and I to walk to the bag check, so we hop out of the car and walk past the long line of vehicles filled with runners.

7:30 a.m. We check our bags and begin winding through the crowd looking for the port-a-potties when suddenly I can't see Mom anywhere.  How did we get separated so quickly?  This was not how today was supposed to go!  I'm searching the crowd (it feels like Where's Waldo, the marathon edition: Where's Lisa) and climbing up onto a statue I catch sight of her red jacket (so glad she didn't check that!).  She sees me and we proceed, arm in arm to the port-a-potties.

8:00 a.m.  Mom and I, having managed to stay together and find our pace group, decide it's the perfect time to get our first picture of the day together.  Mom has the camera strapped around her waist and she takes it out.  She's about to ask someone to take our picture when she realizes that we never put the batteries in!  So much for documenting the race, we'll just have to rely on the official race photographers.  We are standing and chatting when the crowd starts moving forward.  With so many runners, we can't hear the announcement or gun, but the race has begun.  Suddenly, I am overcome with emotion and begin to cry and hug Mom as the runners stream around us on all sides.  In that moment, all I can think of is how in my worst moments 10 years ago I had envisioned myself in a wheelchair, and here I am on the verge of running my first marathon with my Mom by my side.  6 minutes after the official start, we finally cross the start.

10:00 a.m.  We are about 12 miles into the marathon, almost halfway!  Our pace has held pretty steady around 10 minutes miles, better than our goal.  The cold fall day with clear blue skies is the perfect condition for running.  The weather and our own excitement of running the marathon together spurs us on and, mile after mile, we hang on to our pace.  We are in good spirits and are already plotting how to make the NYC Marathon even better.  Those rainbow animal print knee socks that runner is wearing might just do the trick.  Ooh, that foam shark hat!  It would be hard to lose each other if we wore that!  We definitely need to remember the camera batteries for NYC so we can document it as we go.  Dad bikes by and now that we're warmed up (he's still freezing on his bike) Mom hands off her jacket and the camera (no sense in carrying it with no batteries).  He gives us some GU and pedals ahead.  Shortly after we pass Steve.  He's off his bike and I'm worried that he is hurt.  No, just cold, he tells us as he is pacing and doing jumping jacks to warm up.

Steve and my Dad biked the course as part of the volunteer support crew

11:00 a.m. About 18 miles in and I'm still feeling pretty good.   The aches are there in my feet, but I can easily work through them.  Mom is fading a bit and I hang back a couple times to help her continue.  We are still hanging onto our pace, but it's proving to be a bit more difficult now.

 12:00 p.m.  Mom has gotten her second wind and now it's my turn to fade.  23 miles in and I am hurting.  Anytime the incline changes slightly my left knee gives a sharp pang and feels as if it might give out.  The panic caused by this and the sheer exhaustion I'm feeling right now put me over the edge and I start to have trouble breathing.  It's a flashback to my days of running cross country with exercise induced asthma in high school.  Sucking air and sounding like a train whistle with each breath, Mom convinces me to walk a little bit.  She gives me her shoulder to lean on and with her support I slowly lose the limp and begin to breathe easier.  Over the next 2 miles I have a couple more episodes, but the thought of the finish line being less than a 5K away keeps me going.

Almost to the finish line!

12:24 p.m.  As we pass the 25 mile mark, Mom reminds me of the very first mile we ran together.  I was in middle school and running cross country.  Mom had never been a runner, but wanted to try.  I remember her struggling up a hill with less than half a mile to go.  I was breathing easily and running backwards giving words of encouragement.  Here we are now, running the last mile of our marathon together.  My first, her forty-fifth.  This memory spurs me on and we both find the strength to give that last mile everything we have.

12:34 p.m.  Holding hands and grinning from ear to ear, we cross the finish line.  Official time of 4:28:00.  10 years ago she was typing my papers and helping me walk as I struggled with my first MS symptoms, now we stand together having just completed a marathon.  After a long embrace we walk, still grinning uncontrollably, to collect our medals and get food, massages and beer!  After we have recovered a little bit, Mom reminds me that this was just our last long run before the New York City Marathon.  Not sure yet if I want to keep running marathons, but for now I'm so grateful that my body was cooperative and so excited to run in New York on November 4th!

My Mom and I, exhausted but elated post-race (and post-shower!).

Dedicated To The One(s) I Love

My parents

This is it.  As I write this post, 24 hours from the start of my first marathon, I am overwhelmed with thankfulness for all the support and love that has surrounded me in the past 10 years. 

My brother

I am grateful for my family.  For my parents who gave me the skills to become a strong, independent person.  With their guidance and continued support I have been able to thrive in the face of disability.  For my brother, without whose encouragement I might never have started running. For my grandparents, aunts, uncles and cousins who have always freely offered their love and support.

My family

My friends

 I am thankful for my friends who have been there to hold me up (literally, at times).  Being able to share my struggles and turn frustration to laughter has provided me with strength and, I believe, has helped me heal.

Grateful doesn't even begin to describe my feelings when I think of Steve, who has been here, by my side, throughout this whole journey.  Our first date was just weeks before my first attack of MS.   He was there for that first visit to the ER.  Months later he patiently listened while I explained through tears that I probably had MS and what that might mean.  He has ridden many miles to raise money for the National MS Society.  He has helped me eat, walk, and inject myself with my medicine. Despite all of the complications that MS has thrown into our relationship, he has stood by me and provided strength, encouragement and humor whenever I have needed it.

The love of my life

The uncertainty of what an MS diagnosis may mean, and the sometimes sudden appearance of disability that can often be invisible to others, can take a toll, both physically and emotionally.  I have been extremely blessed to have such an incredible network of people supporting me every step of the way, but not everyone is so lucky.  Knowing how difficult I have found living with MS to be at times, I can only imagine what a struggle it must be for those who don't have the same level of support.  It is not surprising to me that many people with MS suffer from depression.  Thanks to the incredible people I have in my life, I am able to wake up each morning and face a new day with joy and determination to make the most what life has to offer me.

Thank you for reading my story.  I will continue to write about my journey as I prepare for my next challenge: The New York City Marathon!

If you haven't yet, check out my fund for the National MS Society and help me reach my goal!



*All pictures were taken by the amazing Rae Barnes and her husband Chris.  They donated their skills and did an incredible job photographing our wedding.  Thanks to them we have beautiful documentation of our wedding day!

Character Building

 

Fall 2005

I don't sleep the night before the first day of school.  Ever.  It started my first year teaching.  A combination of excitement and anxiety keeps my mind spinning and me tossing and turning all night.  When that alarm starts beeping, I bounce out of bed and get ready in record time, energized by the adrenaline coursing through my body. Now that I'm into my 8th year teaching, the adrenaline rush of the first day quickly wears off and my morning slows down considerably. 

But that first year was rough.  Almost everyday was like the first day.  Up at 5 am, to work by 6:30 am, home by 6:30 pm if I was lucky.  Often I'd get up at 4 am and start working because I couldn't sleep.  With a caseload of 35 kids in two schools, ages 8-17, and disabilities ranging from mild to severe, I was stressed to the max.  For once in my life I was glad that both of my parents are therapists.  Through talking with them I was able to develop some habits that minimized the sleepless nights and helped me get through that first year. 

By the time school had started, the loss of vision I experienced over the summer had vastly improved, allowing me to drive the 40 minutes to work each day.  However, the stress I was experiencing triggered another attack.  Fortunately for me, this one was not as disabling.  Numbness wrapped around my torso, leaving a sensation similar to wearing a tight band around my chest.  Patches of numbness appeared on my legs.  One leg began to drag slightly behind the other, making it difficult for me to walk.  It was impossible to run.

At 23, I was clueless about how insurance worked.  I knew I had it, but I had never used my own policy.  Now I was across the country, without a primary care physician or a neurologist, and I needed help.  I called the MS Clinic in Rochester, but because of my policy and distance, they were unable to prescribe anything.  I couldn’t wait to get an appointment with a primary care physician, a referral to a neurologist, and finally an appointment with a neurologist to obtain the prednisone I knew I needed.  Plus, it was the weekend.  I couldn’t wait.  I had work on Monday!  So it was off to the emergency room.

After seeing several doctors, very briefly, they approved the IV of prednisone and started the 3-day course immediately.  Initially, I was thrilled.  I had managed to obtain the treatment I needed (on my own, how grown up!), and after the first couple of days I was already noticing improvement in my mobility.  Then the first bill arrived.  And another.  Followed by several more. 

I had no idea that each of the doctors that said so much as “hi” to me would be sending me a bill for hundreds of dollars.  In the end the tab was over $4,000.  I broke down.  How would I manage to pay this?  I had no savings and was barely managing living expenses and paying off student loans.  I called the billing office in tears and the kind woman on the other end told me to stop by and figure out a payment plan.  They helped me figure out a manageable amount that I could pay each month.  It was rough for a while trying to figure out how to live on such a limited budget, but as Calvin's dad would say, it builds character. 

 Comic by Bill Watterson

Love and Luck

In the Fall of 2004, I started grad school at SUNY Geneseo.  Steve was my main reason for continuing at Geneseo, as he still had 1 more year and I wanted to stay close to him.  During the day I worked for the Arc as a life skills assistant in home for people with disabilities and in the evenings I took classes toward my Masters degree.   

I have always been patient, and my experience struggling to make my body do things I needed it to do gave me a deeper understanding of the frustration that faced the people I was helping at the Arc residences.  One of the guys with cerebral palsy, "Bob"*, would get angry if he fell.  If you asked if he was hurt, he would respond, "just my pride".  I understood where he was coming from.  As he got older, the spasticity in his muscles became worse and his mobility became more and more limited.  I could understand his frustration and we bonded.  He used to joke with Steve (who also worked in the Arc houses) that he was going to take me on a date.  

While my own disability strengthened my compassion, an important distinction between Bob's experience and my own was that while his CP became progressively more debilitating, I am lucky enough to have the relapsing remitting form of MS.  This means that while I have times where my MS makes it difficult to perform basic living tasks, the symptoms usually improve and can even disappear completely with time.  Yes, I have some irritating symptoms that just never go away, but, fortunately, my most debilitating symptoms haven't stuck around.  A little numbness?  A twitch?  I can deal with those!  

Luckily for me, the next academic year didn't bring any new symptoms.  I was able to enjoy months straight without MS rearing it's ugly head.  At first I was constantly doing a mental body scan, checking to make sure nothing had changed, but as time went on I was able to relax and just enjoy my last year as a student. 

Ch-ch-ch-ch-changes-Spring 2005

All our worldly possessions.  It's a miracle the car made it!

By the end of the Spring semester, Steve and I had decided to move to Oregon together.  He would begin a PhD program in Psychology and I would try to land my first teaching job.  For someone who had never really envisioned leaving New York State, it was a big step.  I was scared, both about moving to a state I had never visited (and didn't even pronounce correctly) and about starting my teaching career.  One thing I was sure of though, I needed to go with Steve.  He was, is, and will always be my home.  We packed the car (yep, just a little Hyundai Elantra) with our worldly possessions and drove the 3,000 miles to Eugene, Oregon. 

After 2 weeks of peanut butter and jelly, we arrived on the West Coast.  Within the next 7 days we found a place to live and I got my first teaching job.  The next month was a whirlwind of cheaply furnishing our apartment, hosting family and friends and discovering the beauty and quirkiness that is Eugene, Oregon.  

Blinded by the light-Summer 2005

A large circle of my visual field was missing.

When the month was over, I flew back to Geneseo to finish my masters program.  I moved into an apartment for the month, began my practicum (teaching reading to students in a summer program), and sold my car as fast as I could.  Once the car was sold, I was getting my exercise walking everywhere.  It was on one of these walks that I noticed something strange.  Coming towards me on the street was a bicycle with no rider.  Strange.  I turned my head to get a better look and suddenly a rider appeared.  Was this magic in Geneseo?  Sadly no, there wasn't any Hogwart's style wizardry going on.  I was losing part of my vision.  

I was stranded, with no car, unable to get to my neurologist in Rochester, but perhaps that was for the best.  If I still had my car, I might have been tempted to drive to the hospital, putting myself and others in danger.  Instead I called the MS Clinic and was told that I needed to at least go to an ophthalmologist to rule out the possibility that an eye disease was causing my symptoms.  Fortunately, there was an ophthalmologist in Geneseo who was able to see me right away.  After a couple of tests, I could see from the results that I was missing a large part of the vision in my left eye and a small part in my right.  The doctor quickly determined that it was due to my MS.  After another call to the clinic, I was able to arrange for a nurse to come to my apartment to give administer an IV of prednisone. 

While I waited for the prednisone to work it's magic, I continued to struggle with my vision.  Here I was, supposed to be teaching struggling readers to read and I couldn't even read a page.  I think I pulled it off, but I must have looked pretty ridiculous the way I was maneuvering my head and closing one eye, then the other, in an effort to read to the students.  I managed to make it through the rest of my time at the reading clinic without the kids noticing my strange behavior.

As soon as the reading clinic ended, I flew back to Steve.  Luckily, by the time I arrived back in Oregon my vision was almost completely restored.  I was able to safely drive again, and so I began the 40 minute daily commute to my first teaching job.

*Name changed to protect privacy

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. 

Support the National MS Society!

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.