Ok, so we've established that I've got some anger and other emotional issues to work through. But as most people going through difficult times figure out sooner or later, there are certain ways of coping which are healthier than others, for everyone involved. Part of how I am learning to deal with my emotions, my anger, sadness, and fear, is to do something proactive to address the situation.
To that end, my family and I are embarking on a new mission in our lives, to raise both awareness and funding for ALS and the organizations that fight to find a cure and support families like ours in dealing with the day to day effects of this horrendous disease. In fact, we set out on this mission the very day I was diagnosed. Like most of the world, we were largely oblivious to what it meant to have ALS, much less what it stood for. And, like many of those afflicted with illness, we've decided to dig in, learn more, and stand up to fight with those already in the battle.
I won't claim my motives are completely altruistic. I wasn't doing anything to help this cause before I was diagnosed. My family and I have an obvious self interest in getting the word out, in bringing together resources that may one day help me. But again, like many others, I've learned that just joining the fight for a cause that you believe in, regardless of whether you live or die, is perhaps the most important contribution you can make to the world. A treatment or cure may not come in time for me. But I intend to do my part to help move us forward, to the inevitable day when someone will walk into their doctor's office to find out they have ALS, and instead of being told to go home and die, they will hear "We can help you with that."
It is estimated that more than 250,000 people alive today will one day die from ALS.
Perhaps it's not such an 'orphan disease' after all. But as long as it is in the eyes of the government, it will take the good will of a network of families and friends to make progress. As my friend Jamie at the ALS Therapy Development Foundation commented, we could probably cure this disease with the yearly marketing budget for Viagra. But in our free market, consumer-driven economy, it's a monumental uphill struggle to gather that kind of funding, especially when it won't immediately make somebody happy or fill their cup. As I've said before, in today's world, money is life.
And that's unfortunate for me. As a stereotypical Scandinavian, I'm typically loathe to ask people for help, much less money. In fact, you could say I hate asking for money. I used to do the MS 150 bike tour with my own money sometimes, because I didn't want to bother other people with 'my cause'. But I'm desperate. All families coping with ALS are. It has become our cause. And we need help.
So I'm learning how to swallow my pride and put myself out there, to ask not only for money but for support, in any form possible. Awareness will mean that one day a person can say "I have ALS" and the listener will not have a blank stare on their face. They will know what it means, and the mountain that person and their family must climb. That kind of awareness will lead to money, where eventually enough people will decide this is a disease worth our hard earned money to cure, and we will reach the peak.
As with any mission, you need to get specific to make anything happen. "First things first" as they say. My mom's company Techware is organizing a golf tournament this weekend to raise money for ALS TDF. We're participating in a walk to benefit the ALS Association. I'm going to give a little speech for a Muscular Dystrophy Association fundraiser in Brainerd. All 3 of these organizations are fighting to help me and my family, and we seek to help them in return. As always, you can keep track of our efforts on our website (www.stafnes.com/als).
I stand before you hat in hand. Not looking for a handout like a beggar on the street, but rather with my head bowed, humbly, asking you to join my family and all of the other families engaged in this fight. One day there will be a party, to celebrate our victory over ALS, and to remember those that have gone before to pave the way. You will be invited to this party. But until then, please know that you will have a most profound love and gratitude from me and my family.