This post is part of a series for Multiple Sclerosis Awareness Month featuring MS Ambassadors. The Genzyme MS Ambassadors Program educates people with multiple sclerosis and their care partners about new treatment options and provides motivation from someone who has first-hand experience living with MS.
Where are you from?
I grew up in northern Kentucky in a small town along the southern bank of the Ohio River; close enough that I could hit an 8-iron into the river from my front yard. I have lived in Knoxville, Tennessee for the last 32 years.
What do you do in your spare time?
I live alone so there’s always something to do that’s both needed and dreaded. Housework is something I only seem to barely qualify for. I have been gradually finishing an addition to my house for the last couple of years. I’ve learned everything from electrical to flooring, drywall to plumbing.
I also pursue varied physical activities; golf, various cardio machines, yoga. I love to fish, although I’ve learned to prefer fishing from someone else’s boat. I am usually the first one to sign up when something interesting comes along…I follow my heart.
Tell us about your family
My actual family consists of my daughter, Cameron, who lives far away. I have great friends who make me feel like a part of their families and I am the proud father of two cats.
What do you do for a living?
I am retired from a FORTUNE 100 company where I sold high dollar, large computer systems. That is where I was when I was diagnosed with multiple sclerosis, as well.
I spent four years in the Navy in the early 70’s…I have been an air traffic controller, a vocational rehabilitation counselor, and an elementary school teacher. Most importantly I have been a father for 26 years.
What was your favorite thing about your job?
I was most comfortable in environments where I could operate independently, and where I was measured by the results I produced so I thrived there.
Please tell us about your diagnosis:
My early symptoms are clear when viewed in retrospect. At the time, each event was independent of other events, and none were significant enough alone to cause alarm. I didn’t have time to slow down…I had worked half-a-lifetime to be where I was. Vague sensory symptoms persisted until finally eye pain and double vision forced me to seek help. That was in 1986 when I was 36 years old.
What is life like today with multiple sclerosis?
After thirty years, it’s hard to think of life without MS. The adaptations and adjustments I have made are by now a part of me. I must be self-sufficient and many of the things I do are done to help me maintain my general health so I can stay that way. Most importantly, my life since diagnosis is different than before, but it isn’t worse…
I’m not “stricken” with MS. I’m not a “victim” of nor do I “suffer” from MS. I am not an MS “patient” unless I’m at my doctor’s office. I’m not being treated…along with my health care team I am managing it. I have MS, but MS does not define me.
How has your life changed since being diagnosed?
I have had to redefine my limits in many of my physical activities. I continue to test those limits and try not to blame MS when I fall short.
My constant challenge is to maintain balance between what I want or need to get done and the energy it requires. I often walk now where I used to run, but I try to keep moving forward. I pay much closer attention to a lot of things, and sometimes my reach exceeds my grasp, but like Teddy Roosevelt, when I fail I will “fail while daring greatly.”
How has my life changed since my diagnosis?
The greatest and most meaningful change came immediately upon my ejection from the workforce and my peer group. I was adapting to a whole new environment while dealing with denial and trying to deflect sympathy. I see now that I was trying to prove that I didn’t have MS…or at least that it wouldn’t change me. My focus shifted from my career to my daughter.
As a second grader, she wrote, “I’m glad my dad has MS”…”because he gets to stay home with me.” It wasn’t quite that simple, but I began to judge my worth less by what I did for money and more by my role as a father raising my daughter. I became who I was not what I did. I went to work at her school, learned that I love everybody’s kids, and stayed there long after she moved on. All of my best friends were in elementary school…talk about a peer group shift.
I continue to adapt and adjust as MS and I age together.
What do you want people to know about MS?
Managing MS is exponentially more than “being treated”. It is patience and planning and anticipation, it is discipline and determination, empathy and connection and humor…for me there has always been a hint of defiance. The quality of my life changed when I began to take responsibility for managing my MS. My physician and our whole team manage issues from medications to exercise. I am involved.
How did you become an Ambassador?
I was introduced to VPR by my MS One-to-One nurse. We got to know each other well after all our calls and she suggested I may be suited to “help other people with MS.”
Why do you enjoy being an Ambassador?
If I had been asked a few years ago to describe the ideal – the perfect pursuit for my attitudes, skills, and interests – this would have been it. I know that I am extremely lucky in the course my MS has taken. For whatever reasons, I have been given an opportunity to join a team that’s doing great things. As corny as it sounds, I carry the flag for those who can’t, or who need encouragement, or who need to hear and see something other than bad news. I am still smiling after 30 years of MS.
I am there to serve the attendees at our events. I also learn something at each event…then I carry it all with me to the next one. I still look forward to every program and I still can’t wait until it’s my turn to speak.
What was your most memorable program/moment as an Ambassador?
Each of the first five or six events revealed more and more of the impact we have on our attendees. They come to hear us.
It was the third event in the same city in three days, and the food was great, so many of the attendees had been to one or both of the previous ones. One family came to each event…first there were two, then four then five. The fifth member, the patriarch of the family and the one who had MS, appeared at the third and final program. The other family members had come to the previous events to determine whether they should convince him to come. By the end of the night they were taking pictures of each other with me. The patriarch was all smiles.
If you have ever taught school you know that hearing and listening aren’t the same thing. Folks come to our events with questions I hope are answered by what they hear. But just as importantly they want to leave with a positive thought and something to smile about…to feel good. That’s the part they listen to. I have a responsibility to them to do what we do to the absolute best of my ability.
My favorite things about being an MS Ambassador? The reaction of the attendees at our events and the positive feedback they give me. I am always surprised by how much they want to hear what I have to say. I love the eye contact with those at our events who really connect with what I project. I love the relief I see on the faces of folks who thought they were in this MS boat alone.
Thank you for sharing your story with us, Denny! Your positive attitude about having MS is very motivating.