June 2012, Choroideremia Research Foundation Annual Conference, Boston, USA
I’ve given talks in front of a fair number of groups and I’ve always loved this moment…when I first get up in front everyone. I love looking out at all the faces…faces that have stories behind them…stories of each person’s life. I’m sure some are happy … some sad…some complicated…and some very simple yet very meaningful. Like one time when I was about 15 or so. My parents didn’t have very much money, but they helped me buy my first car. My dad was helping me put in these cheap car stereo speakers we just bought at Wal-Mart. Now, I don’t know if any of you have ever seen stereo speakers, but the speaker part is like a very thin piece of construction paper. Well, as my Dad was taking it out of the box, he poked his finger right through one of the speakers and ruined it. I immediately said, “Let’s return it and get a new one! Wal-Mart takes everything back.” My Dad said, “No, Wal-Mart didn’t break this…I did. We have to buy a new one.” I asked him “Why? Wal-Mart wouldn’t miss it….they can afford it.” He looked at me and said, “Because it’s the right thing to do!” That simple story still sticks with me still today.
One story we all share is how, when, and where we were told that CHM was going to be a part of our lives. My version happened when I was around 28 years old. I was really just beginning to feel some reward from some very busy college years.
I put myself through college by working 3 jobs and at times around 55 hours a week. I did that while gaining a bachelors and masters in mathematics.
By 28, I was now working at a good job and had a little money in my pocket. I’d just begun dating my wife, Julie. I had a kind of “I made it feeling!”
But, after a series of unexplainable visual mishaps, I finally found an ophthalmologist who diagnosed me with this weird named disease called Choroideremia (CHM). He told me that I was going to continue to lose vision en route to complete blindness somewhere in my early 50’s. Obviously I was shocked and nowhere near ready to believe this could be happening to me. I immediately said, “Science will solve this right? They’ll find a cure before I lose my eyesight!” He looked at me and bluntly said, “There are rare retinal disorders out there, and CHM is rarer that any of those and though CHM has all the characteristics of a disease that could be cured, it probably would not be. No one is currently studying it and no one probably will study it because it just doesn’t affect enough people!” He said, “You need to accept a life without your eyesight.”
Well, over the next 10 or so years I did my best to live a normal life.
1. I got married and had 2 beautiful young boys Jakob and Jordan.
2. I lost a ton of eyesight during these years, and with that
3. my anger and sadness grew and grew.
4. because I knew, I would never get these years back with my boys.
5. But, I did my best to appear to be happy and to be a good father.
6. A frequent piece of ‘fatherly advice’ I give my kids is when they get into fights with each other or have problems. Those of you who have kids know, the first thing kids want to do is tell you what the other person did wrong. What ‘they’ did to cause the fight or problem. I never let my kids get that far. I immediately interrupt them and ask “What did YOU do to fix the problem! I don’t care what your brother did wrong. I want to know what YOU did to fix the problem!” Well, ask me what I did during those 10 years to fix my problem! The answer is nothing! I did nothing! Thats
10 years of networks not tapped. 10 years of personal contributions not given, and 10 years of no awareness gained. I can’t tell you how much regret I have now for that.
Every now and again, I’d exchange an email with this guy named Cory from some dinky organization called the Choroideremia Research Foundation (CRF).
And, every time, he’d politely tell me that I should have like a dinner party, or a wine tasting or a garage sale to raise some funds for research.
I’d always leave thinking this well-intentioned, good-hearted man was delusional because there was no way a silly wine-tasting or garage sale could raise the kind of funds needed to cure a disease
It would be a token gesture at best
So, I did nothing!
All I knew was that I hated being blind.
I had enough vision to see what other fathers were able to do with their sons and yet I couldn’t even see all of my son’s faces.
I couldn’t even be left alone with them in public because I couldn’t keep them safe.
I hated CHM for taking a life that I loved away from me.
Before CHM entered into my life, I felt the world perceived me as a happy, confident, and good person. That’s how I perceived myself.
But now, I find myself crying in the showers and my temper is always at ‘Last Straw’ level. CHM didn’t make me this way, it just exposed these character flaws in me, and I again hated it for that too.
Sometime early in 2005, I heard of some folks organizing CHMers to run in a marathon in Kelowna BC in an effort to raise funds for CHM.
I’d always wanted to run in a marathon so I decided to sign up.
I figured it would be my token gesture for CHM. So, I trained hard and sent out over 300 letters to every friend, family member, and co-worker I knew.
Well, my network generated over $28,000 and made me realize that there is no such thing as a ‘token gesture’.
This event sparked the idea in my head that if I could improve my marathon time to a level that society deemed respectable and beat most of my sighted competitors, that people would take notice and deem CHM worthy of their support. I set my goal at a 3 hour marathon which is something less than 1% of marathon runners have achieved, especially not 40-something year old blind runners.
I trained and competed in 6 marathons in the name of CHM
It’s funny, everyone thinks I enjoy running, but that’s really not true.
It’s important to me to say out loud how much I hated the training involved trying to accomplish my goal.
It was awful! It hurt more than you can imagine.
But, I gave every workout every ounce of energy I had.
I trained for 8 months per race, 6 days a week, and averaged 55 miles a week.
I did this for 6 marathons, over 5 years while maintaining a stressful full time job and raising 2 young boys.
My workouts were done during the wee-hours of the morning while my kids were still sleeping so as to minimize my time away from my family.
I never missed a workout. I ran in the cold, snow, heat and rain.
I once ran 19 miles with 101 degree temperature.
You see, I had it in my head that the more I hurt, the more good I was doing for CHM and if I missed a workout, I was quitting on CHM.
In all, I ran over 10,000 miles in the name of CHM.
I ran with a chip on my shoulder and tears in my eyes.
I was in 9 newspaper articles, 3 TV Interviews, 3 magazines and 1 Radio show
all in an effort to engage society to deem Choroideremia worthy of their support.
to date my network has generated over $130,000.
That ‘token’ gesture back in 2005 got me committed.
I now forfeit every Christmas and Birthday Gift in exchange for donations to the CRF.
My company has a Jeans Day every year with funds going to the CRF.
I have sent out 6 letter campaigns. Every bonus or raise, my wife or I get, a portion goes to the CRF. My wife and I have a virtual jar that as soon as it gets full enough, we send in another donation. We have come to the stark reality that unlike the many many other worthy causes in the world, Choroideremia does not have the numbers to advance our cause.
CHM does not have a ‘they’ to solve our problem. There is no ‘they’.
It’s just us…here in this room. We’re all we’ve got. There is nobody else.
So, my wife and I have agreed that the CRF will be our only charity until this disease is gone forever!
At 46 years old, I am still just as sad and just as mad as I ever was. CHM has taken so much from me and my family. My heart aches and tears well up in my eyes if I allow myself to think of all I have missed with my wife and my two young boys
I see babies that I held in my arms starting to drive and yet I need help finding a public restroom. I still put my boys to bed every other month or so with one of them crying because they know dad will not be able to see them in a few years. I have no doubt that my wife cries from time to time when she’s alone. And, I still cry in the showers when I just can’t hold it in any longer.
Ladies and gentlemen, HERE MY WORDS and know this…
I am determined to do everything in my power to help end this disease.
Some day, I will be an old man, sitting in my rocking chair whether completely blind or not if I’m asked, “What did you do to solve your problem?” I want to be able to say and say with force, that I did not go quietly into the night!
I did not accept my blindness without a fight! I kept pushing and will keep pushing until this disease is extinct!
And, here’s the interesting part. The real reason why I will keep pushing might surprise you. I know it surprised me. It’s not because of the bottled sadness or pent up anger. And, shockingly, it’s not even because it is the only hope I have of seeing those 2 beautiful boys as teenagers or adults. The reason I am going to keep pushing and the reason every individual in this room needs to keep pushing is actually very simple it’s like my dad said many years ago it’s just the right thing to do.
To support Jeff and help find a cure for choroideremia, donate to the CRF, or find out more about the disease here.