It was a Misty, Moisty Morning...
It was a misty, moisty Saturday morning, far colder than the previous several days, as hundreds of people of every size, shape, and age gathered at Center City Park for the Greensboro Walk to Defeat ALS. Under tents scattered throughout the park, team members were registering and donning their respective team T-shirts, while shivering figures lined up at the popular beverage table for steaming cups of coffee, tea, or hot chocolate, using the hot cups as hand warmers for unexpectedly-icy fingers.
Our team, Karen's Courage, had come together to walk in honor of our friend, Karen Kelly, who, at the age of 40, was diagnosed with ALS last summer. It has been a difficult and challenging year for Karen, husband Shane, and 9-year-old daughter, Sophie, but all three were there to welcome those
of us who were ready to make the 2-mile walk.
Some info: often referred to as Lou Gehrig's Disease, ALS or amyotrophic lateral sclerosis is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries...and the cause is unknown. ALS is probably THE MOST complex disease there is.
It is also one of the most expensive diseases for the patient and his or her family. Much of the equipment and home modifications are not covered under insurance...and yet are essential if the individual is to continue living life as fully as possible. The Kellys are adding a master bedroom/bath on to their house which will have to have a roll-in shower and a ramp outside to enable Karen to get around. They will also have to get a van that is up-fitted for a wheelchair. The list can go on and on. This means that every dollar raised really counts because the local ALS chapter gives $500 grants to families every quarter to help with the kinds of things listed above, which means that Karen and her family can get $2000 a year to help defray some of the costs.
So this is why we walked, the nearly-170 members of our team. This is why we have accosted our families, friends, neighbors, co-workers and fellow church members. This is why we gathered on a misty, moisty, overcast, chilly day in downtown Greensboro to walk. It was our way of saying, "Karen, we love you. Karen, we value you and your presence in our lives. Karen, we're with you every step of the way on the difficult journey ahead. And don't thank us...there was nowhere else any of us would rather have been."
(And by the way, our team, with an original goal of $10,000, raised a total of $36,000!!! )
Some info: often referred to as Lou Gehrig's Disease, ALS or amyotrophic lateral sclerosis is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries...and the cause is unknown. ALS is probably THE MOST complex disease there is.
It is also one of the most expensive diseases for the patient and his or her family. Much of the equipment and home modifications are not covered under insurance...and yet are essential if the individual is to continue living life as fully as possible. The Kellys are adding a master bedroom/bath on to their house which will have to have a roll-in shower and a ramp outside to enable Karen to get around. They will also have to get a van that is up-fitted for a wheelchair. The list can go on and on. This means that every dollar raised really counts because the local ALS chapter gives $500 grants to families every quarter to help with the kinds of things listed above, which means that Karen and her family can get $2000 a year to help defray some of the costs.
Seeing the beautiful, courageous folks with this difficult disease in their wheelchairs and knowing what lies ahead of them is a stark, in-your-face reminder for all of us fortunate enough to be "able-bodied"...a reminder to be thankful for each and every day of good health...a reminder to live in the moment and to cherish each one...each person...each beautiful and glorious and precious second of this thing we call "life".
(And by the way, our team, with an original goal of $10,000, raised a total of $36,000!!! )
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