Biography

HOME AND FAMILY: We have the great fortune of living in colorful Colorado. Jennifer is a native and I’ve spent most of my life here.  We met in a bar in 1989.  We were actually working: I was a bartender and Jennifer was a cocktail waitress.  We had an instant attraction, however, very different lifestyles.  You see, Jennifer was an independent women holding down three jobs including her main career in quality assurance at what is now called AIM Investments, formerly, Invesco Mutual funds.  She had her act together and knew what she wanted to accomplish in life.  I, on the other hand, lived the stereotypical lifestyle of a bartender.  There was a party every night and I had little to no ambition to pursue anything else at the time.  No offense intended to any existing bartenders!
Jennifer saw past the façade and knew there was something more to me, even before I did.  How blessed I am to have her instill in me the will to do something with my life.   Shortly after marrying Jennifer, I began my career in the telecommunications industry with Sprint where I stayed for 10½ years.  I owe many things to that experience.  Two of which are the wonderful relationships formed with my colleagues and the ability to speak with confidence to many different types of audiences from internal employees to CEO’s of major corporations.
Jennifer and I got married in May of 1990.  We spent some great time together before deciding to have a family.  We traveled and had two homes built selling the first one and using proceeds to put down on the second, establishing our equity.  This second house is when we decided we should start a family.  Unfortunately, it doesn’t just happen like that for everyone.  Lest we forget, conceiving a child is a miracle process.  We experienced 4½ years of infertility treatment that combined times of western medicine and eastern methods including herbs, tinctures and acupuncture.   In May of 1998, our miracle son, Christopher, was born.  It seems May is quite the month for us!
We were then living in our third house we had built in the mountains of Colorado.  It was beautiful, but it was not the lifestyle for us.  Three days after we moved in, it snowed three feet within about 24 hours.  All we could think was, “What have we gotten ourselves into?”  It wasn’t a close mountain community we moved into but rather a place where people wanted to be by themselves.  The commute to Denver was an hour each way in good weather.  For two social butterflies and a newborn, it was simply not the place for us to be.  It was also the place where our lives started taking a turn.
Jennifer, at the age of 32, found out she was adopted.  It doesn’t matter how she found out, it’s only pertinent that she did.  It made her question everything about herself.  The whole thing is a story in itself, so I’ll keep it simple here.  Her maternal mother died of an aneurism six days after she was born.  That isn’t why she was adopted though.  Everything had been prearranged because her mother was single and not capable of raising a child at the time.  Jennifer’s parents did a fantastic job raising her into an incredible and caring human being.
A few days later, Jennifer had just finished giving Christopher a bath and had him wrapped warmly in a towel when he went completely limp.  He wasn’t even a year old.  You’d think that having a CPR class would be quite helpful at this time, but when it’s your own son, it’s just different.  Jennifer said she summoned her wits enough to call 911.  On their way to the house, she began to administer CPR just as Christopher took a big breath.  The paramedics arrived and took them to Children’s Hospital in downtown Denver.  Since I was at work when I got the call from Jennifer, I had beaten her to the hospital and met my mother.  After several tests, including a MRI and EEG and it was deemed a breath holding spell.  These are typically associated with a crying fit or temper tantrum prior to passing out.  Christopher could not have been more content coming out of the warm bath into his mother’s arms, so we don’t buy the whole breath holding spell thing.
It wasn’t much more than a week later I had a seizure.  I was working from home and had taken a break to look up flights to Minneapolis, where Jennifer’s maternal aunt lived, when I forgot what I was looking up and apparently let out an horrifying groan.  Yes, Jennifer was right there and this is how she told it to me.  My neck arched unnaturally and I began convulsing.  She was able to get me out of my desk chair and lay me down just in time to see blood trickle out of my mouth from biting my tongue.  Christopher was taking a nap, thank God.  Jennifer dialed 911…again.  It was a small mountain community and the same operator answered, “Is it Christopher?”  Jennifer said, “No, it’s Steven and next time it’s going to be me!”  I had the same MRI and EEG.  Both were normal, with the exception of some minor slowing in the lower left temporal lobe, whatever that means.  The seizure remains unexplained and the doctors sufficed it to say that 1 in 10 people will have a seizure for no apparent reason.  My doctors all told me that it is not significant to the ALS diagnoses.  I never felt the same after that…about life.  Perhaps, I was being prepared for what was yet to come.
It took a year but we finally sold the mountain house and moved back to the city in the year 2000.  It was one of the best years of our life.  We bought the house that we thought Christopher would grow up in and loved our neighbors and location.  It was like a fine bottle of wine that you’re not likely to forget.
This is just a brief introduction to our family.  The rest of this website is dedicated to living with ALS.  It is about the things we try to do to live up to our multiple dimension mission statement.  Entries could include our advocacy efforts, soliciting your help, updates on our family and friends, but most of all it is about life.
Our new life philosophies include the mantras:
1.       “Everyday is a Saturday at the Bishop’s.”
2.       “Life is too short to drink cheap wine.”
3.       “Live for today, but plan for tomorrow.”
ALS ONSET: At 35 years old, we received our diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in March 2001.  I did write “we” because we compare it to when “we” were pregnant with Christopher.  Jennifer went through all the physical symptoms of pregnancy, although I was not to be left out with some substantial sympathy weight gain.  However, we both went through a mental and emotional change preparing for parenthood.  With ALS, I am experiencing all the physical aspects but we both are mentally and emotionally engaged and forever changed.
My initial symptoms were weakness in my right index finger, constant twitching in the thighs and cramps primarily in the calves and forearms.  All of this was attributed, in typical male fashion, to being out of shape and so a regimen of workouts and weight lifting ensued.  Aerobics and Pilates were not successful due to persistent muscle cramps and weight lifting proved discouraging.
The event finally leading to a doctor visit was experiencing a harsh muscle cramp in my forearm while attempting to shake hands with a client at the end of a meeting.  I literally doubled over in pain.  I realized whatever “this” was; it was beginning to affect my work.  There were times just washing my hands in cold water that my forearm would cramp, but not like this.  Jennifer and I were seriously thinking it was just Carpal Tunnel Syndrome and so a hand surgeon was consulted.  Unfortunately, our self diagnosis was incorrect and a referral to a neurologist followed.  After some uncomfortable and painful tests, a Nerve Conduction Velocity (NCV) and Electromyography (EMG) respectively, the reluctant primary diagnosis (dx) of ALS was made.  They followed up with a concurring second opinion a week later at MDA’s Denver ALS clinic and even further down the line a third opinion by arguably one of the top neurologists in the country in MDA’ s Houston ALS clinic.  Three strikes, you’re out.
Although, daily struggles include chronic muscle twitches and cramps, fatigue and the use of an assistive breathing device (BiPAP) at night, I am still walking for short distances, but use a wheelchair for longer walks and adventures.  My dexterity has suffered; however, that has relieved me of the fine china and crystal washing duties!   My medications, specifically, Baclofen and Tolmetin, have kept most of the symptoms manageable.  They are a non-narcotic muscle relaxer and an anti-inflammatory, respectively.   Muscle stiffness is still persistent and evidence of muscle wasting exists but my overall appearance has not changed noticeably to most people.  I do take a considerable amount of supplements, primarily antioxidants.
ALS INVOLVEMENT: Jennifer and I made the decision to do everything in our power to make sure this disease did not defeat us.  Initial involvement came with the Muscular Dystrophy Association (MDA).  After the privilege of appearing on the local MDA Telethon in 2001 and then the Jerry Lewis National Labor Day Telethon in both 2002 and 2003, we were honored with the voluntary appointment of National Co-chairpersons of MDA’s ALS Division and served in these roles through 2003.  During this tenure, we helped raise awareness of ALS through public appearances, speaking engagements and public service announcements.  Financial support for MDA’s ALS Division was stimulated and other families were aided in coping with the disease’s many challenges. As part of the 2003 Telethon, we appeared on the cover of Parade Magazine with the story written by David Oliver Relin.  He was at our house interviewing us for over 4 hours and we had no idea what might actually appear in the magazine.  Jennifer and I authored eleven articles that were published in MDA’s ALS Newsletter.  Some articles are written from my perspective, some from Jennifer’s and others where we corroborated. Our National MDA involvement ended in January of 2004.  Local MDA activity continues with support group participation, public speaking and the annual Gift of Time ALS Gala.
Special Living magazine chose the Bishop’s for their Winter 2003 cover story “The Patience of Hope”.  This magazine is published quarterly and embraces living with disabilities, sharing stories of adaptation, adventure and inspiration.
Shortly after the National MDA responsibilities expired, we were cordially invited to give the keynote address for the 2004 Tri-State Trek, a 270 mile bicycle ride from Boston to New York that raised funds for Project ALS.  We have returned for this ride, now benefiting ALS/TDI every year since.  In 2006, Jennifer successfully participated in and completed this ride after almost a year of training.  It was an incredible accomplishment considering she simply is not a bicyclist.  Her strength is a continual inspiration for me and others.

Participation in various events with the ALS Association (ALSA) has also been very rewarding.  We hope to join their National ALS Advocacy Day in Washington DC in May this year.  Their annual “Walk to D’Feet ALS” happens in the fall.  We have absolutely no discrimination when it comes to any organization that is helping eradicate ALS.
On a different spin, our life and supplemental disability company, Northwestern Mutual Insurance (NWM) has kept us busy with the cover of their 2004 Annual Report, DVD profile and numerous speaking events throughout the country.  We provide their independent representatives with a real life story of how their products make a difference in people’s lives.  Peace of mind exists in the Bishop home.  Jennifer and I feel we did everything possible that was financially feasible to provide for our family especially under these unfortunate circumstances.  These financial representatives, in turn, tell their existing and potential clients about The Bishop’s story and spread the word about ALS.

Our most recent endeavor has been the launch of the Denver Chapter of Extra Hands for ALS.  In the spring of 2005, I was looking for some volunteers to cut our grass for the summer.  We couldn’t afford $20 a week and I didn’t want Jennifer doing the work as she already had more responsibilities than most wives should have.  I found the Extra Hands’ web site and followed up with a phone call only to realize they were not in Denver.  Jennifer and I, mostly Jennifer, simmered on this all summer and she finally initiated the call to Extra Hands Corporate asking what we needed to do to start a chapter in Denver.

By November 2005 we were up and running, recruiting students, mentors and families to participate.  As of May 2006, over 100 people volunteer, almost $100,000 has been raised and we have been blessed with the privelege of being touched by these incredibly inspirational volunteers, including the ALS families that open their homes during a very difficult time.  Please click on the Extra Hands for ALS link above to find out more about our program.
Our ALS involvement has provided a very public forum to pursue our life mission and walk the walk.  It adds tremendous purpose to our lives.  These actions are rewarding beyond words.  Things have never been the same when we opened our lives for all to see.  We realized that once the battle with ALS became the forefront of our lives, our relationships would change for better or worse.  It is worth every aspect of it knowing we played an active role in the future treatment and cure for ALS.  We hope that you too will be inspired to join us in our mission.

Walk in the light,

Steven