Posts Tagged 'ALS'

Rest in Peace

Back in December, I talked about Tim, a college classmate who was fighting ALS (Lou Gherig’s Disease) and inspiring a whole awareness campaign in the process.

This morning, surrounded by family and friends, Tim passed away.

Today more than ever I am thinking about what matters. Tim was an incredible person and the loving response from community to his illness bore witness to the powerful good of the human spirit. We hear so many disheartening stories in this world, that sometimes we need reminders of that fact.

Tim and his Often Awesome Army turned his scary diagnosis and daily trials into something that transformed and touched many lives. I have been humbled and awed by their journey.

It can never be said too many times: love, kindness, compassion – this is what we need to hold onto. Every day is precious. Live each one to the full.

RIP, Tim. Holding all who loved him in the light.

The trailer for the award-winning web series that followed Tim and his wife Kaylan as they fought ALS:

Happy Holidays/ALS Awareness

I went to a small Quaker college in Greensboro, North Carolina that had fewer people than my high school and could be described as something of a hippie haven. My educational choice of a “lesser-known” college surprised many as I had been a serious student accepted into several Ivy League schools.

I remained firm in my decision, however, quixotic as it appeared to others. This marked perhaps the beginning of my unconventional, but quietly strong-willed approach to life: Don’t worry too much over other people’s logic; what feels right inside? When that question’s answered, then do it.

I’m more certain than ever of my decision, especially when I (continually) learn about the inspiring deeds of my former college classmates.

Quakers believe in peace, equality, and that of God in everyone, what they call “inner light.” Most of us who went to Guilford College weren’t Quakers ourselves, but it seems to have attracted some of the most caring people anyway, those who naturally manifest these ideals. (Though don’t get me wrong; we were also rowdy, as 18-year olds are meant to be rowdy).

Tim was a lively figure on campus. Often wearing a cow suit or playing loud music with his band in the Underground, he was someone you couldn’t miss. While he was never in my close circle of friends, we were still friendly – as you were with just about everybody (Did I mention the college was located on Friendly Avenue, too?)

In April 2009, Tim was diagnosed at age 29 with ALS, better known as Lou Gherig’s disease. A devastating diagnosis, as ALS is terminal, usually acts quickly in most cases, and robs people of muscle control, movement, and their voices.

But no, Tim still has a voice – a message. And a strong army behind him.

At first, his close friends simply wanted to find a way to take care of him and to raise money for his (increasingly expensive) medical needs.

The effort, however, has blossomed into an entire awareness campaign and something much larger than anyone anticipated. ALS isn’t a well-known disease – Tim and his Often Awesome Army as the support group has come to call themselves – are working to change that. Benefit concerts, auctions, and other awareness-raising events have all taken place in the past year.

Every 2 weeks, a new web video comes out documenting Tim’s story and the work of the Often Awesome Army. While I’m saddened to watch the progression of his disease – Tim is now mainly housebound, depends on machines to breathe, and can only speak through a technological device – I cry at each episode not simply for this painful reality, but also in joyful awe. That is because this is also a story of tremendous love and community.

It’s been amazing to witness what human beings are willing to do for each other without any expectation of reward, to see how many people care – strangers and friends alike – and see the proof once again that we are stronger when we work together and lean on each other for support.

People who don’t even know Tim have helped with the cause; it’s heartwarming and incredible. A special shout-out is necessary to a core group of folks, though, who look after Tim’s daily care needs, which at this point must be massive, exhausting, and hard. They’re still doing it. I recognize many familiar faces in this crowd.

Right now, people talk a lot about the holiday spirit. What exactly does that mean? My family is not particularly religious and we try not to be huge consumers. This means the holiday is simply a chance to be together and exercise what we should all year: generosity, gratitude, love.

Through the videos, I’ve been able to see how people care for Tim, support each other, and manifest community in their actions. I cannot think of a better embodiment of what we should be celebrating right now. This is the holiday spirit, but practiced year-round.

And so, my holiday greetings this year are inspired by Tim and his Often Awesome Army. I hope also, to raise some small bit of awareness.

Some people look at me and are wowed that I’ve lived in two of the world’s most amazing cities. What does it take, they ask, to thrive in these big, bustling metropolises?

I say, I gained confidence to go forth into this big wide world because of what I saw at my small Quaker school. And I see it still: That people are good. People will surprise and amaze you. People will help when called upon.

Please watch this trailer about the web series to discover more about Tim’s story, and visit the Often Awesome Army’s webpage and ALS Association to learn what you can do to help Tim and fight Lou Gherig’s disease.

Happy Holidays.

paris (im)perfect?

Sion Dayson is paris (im)perfect. Writer, dreamer, I moved to France on – no exaggerating – a romantic whim. As you can imagine, a lot can go wrong (and very right!) with such a (non)plan. These are the (im)perfect stories that result.

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