I challenge each of you to live like Ed for only 10 minutes: Lay on your back, flat. Tilt your head to the right. You cannot move it to the left. As a matter of fact, you cannot move at all, other than some toe wiggling. Be sure your arms are flat to your sides.
No scratching. No moving. Keep your head tilted to the right, so if someone comes to your left side, you cannot see them. Need a drink of water? The tv channel changed? Need to pee? Do your lips feel dry? Is there something in your eye? Is anyone near you to ask for help? Need to eat? Oh - wait, you don't eat anymore. You're fed through a tube in your stomach.
Many people - including Ed at one time - would say they would NEVER live like this. They'd rather die. They think this life is worse than death. And yet, here we are. Ed lives like this 24 hours a day. The will to live is strong. We are together, he loves his friends and family, he is not ready to die.
This year, I am NOT walking to find a cure. Instead, I am walking for the ALS Guardian Angels - a small non-profit run by one man who is committed to bringing financial relief to people whose lives have been devastated by this awful disease. The relief comes in the form of grants to help with bills, medical equipment, advocacy. The money goes directly to people in need. There is NO overhead, the man who runs the charity does not get paid.
Whether you can donate $10 or $100 - know that every dollar you donate will directly help someone who is in desperate need to keep a roof over their head, to purchase a wheelchair, to find a way to communicate.
I am hoping to make it to California to join the walk and represent Team Flying Squirrels. All of the money raised will go to the Guardian Angels. I'll be paying my own way to Cali!
Here is the link to Team Flying Squirrels:
You can also buy a t-shirt and make a donation at this link: