Less than half the team, just before clean-up

Amyotrophic Lateral Sclerosis, or ALS, is more commonly known as the Lou Gehrig’s disease.

Our friend Gary, aka “Black”, was diagnosed with ALS last year after he had slow speech pattern and difficulty swallowing.  Aunty and his wife are friends from hanabata days (hanabata days = long long time ago).  This weekend was the very 1st annual ALS walk in Hawaii, and over 300 people gathered at Kapiolani Park, to donate and walk for ALS awareness and research.  We were part of Black’s “Broke da ALS” team.

ALS shows up in different ways.  Some people are wheelchair bound, some cannot move their arms.  Black looks good, still very mobile, and is always busy with chores, surfing and going on snowboarding trips.  He doesn’t talk anymore, so he communicates by writing on his iPad, taking it out of his bag whenever he has something to say.  Black was always on the quiet side, especially since his wife talks enough for 10 people and he hardly had a chance to be heard anyway.  The iPad is now his voice and his most useful assistant.

Black had google searched for an iPad app that he could use, since typing took too long and was also too small to read.  Googling “etch a sketch” brought him to find a French developer’s free app, Magic Slate.  What a great find that was!  The entire iPad screen looks like a used blackboard, and your fingers become the chalk.  It is so easy to write out any message for anyone to read.  Shaking will clear the board so that a new message can be written and shared.  Black has become very adept at writing, clearing the iPad board with a shake, and then writing more, making for good and easy conversation.

Towards the end of the event, after the walk was over and tents and tables were being broken down, a good looking woman from another group came to Black and gave him a box of poi malasadas from Kamehameha Bakery (yum, yum, yum) and I asked him who she was.  Black whips out his iPad and writes, “her husband has ALS” and points to a group.

I looked over to where he was pointing and saw a man in a wheelchair, so I asked if he cannot walk.  “He just tired” was Black’s answer.  I asked about his condition, and Black writes, “he cannot lift his arms anymore.”  He adds, “he also used to surf.”

Then, with a chuckle, Black writes, “He said he like challenge me – to karaoke!”  That was pretty funny.

Black then clears the board with a shake and writes, “So I told him I like challenge him – to arm wrestling!”  Nyuk, nyuk, nyuk!  That was really funny!

Becoming part of Black’s support team is not only rewarding and appreciated by Black and his family, it is also rewarding and appreciated by us.  Seeing old friends, meeting new ones, talking story, and coming together as an impressive group with a common desire of beating this affliction felt good.  There is hope, and magic happens every day.

We all have magic in our lives, every second, with every heartbeat, with every sunrise, with every person we meet.  It is just a matter of realizing it, that our lives are transformed from humdrum to wondrous.

Black can attest to having magic every day.  Every time he goes out to surf, he is living life to the fullest and ALS doesn’t exist in those instants of feeling the power of the wave take over under his board.  Mingling with each of us, giving and receiving bear hugs, knowing how much love is shared – that’s magic.

Every message written on his iPad is limited only by the speed of his fingers.  For the first time in his married life, he can convey what he wants to say, regardless of his wife’s nonstop talking mouth.  That, too ……… is magic.

Cookie and Black