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The ALS fundraising craze is more of a tsunami than a bucket! I have clicked on  videos of friends, celebrities, the occasional pet, dunking themselves in bracing cold water to support the ALS fight. These clips are hilarious and this is likely the most successful online campaign for funding and awareness ever created. So why haven’t I dunked myself?

setMy dear friend Danielle would have loved the Ice Bucket Challenge – I am pretty sure she would have participated whole heartedly. That was just her style. Diving right in to the thick of it. Danielle died two summers ago from ALS. Much too young, much too vibrant, leaving behind family and friends to cope. (I wrote about Danielle shortly after her funeral – Fields of Gold).Danielle’s Mom and Dad, sister and brothers had the hardest time of course. She moved in with her parents, her brother quit his job and moved back to the family home to assist with her care, their lives taken on a path from which there was no diverging.

Last summer, Danielle’s Mom Suzanne sent an email announcing she was participating in the Walk for ALS “Please support me in my Walk for ALS…” Not in the best health herself, a woman who had aged from caring for her daughter, Suzanne was going to walk 5km to raise money to support ALS research while honouring the life of Danielle. And so she did. I’ve been thinking a lot about Danielle this summer as the Ice Bucket craze swept Facebook, knowing she would have sent me the challenge yet just not able to do the dunk. And I haven’t been sure why. Then last week I received an email from Suzanne that began “Please support me in my Walk for ALS…” In the midst of the social media fun, came a heart felt request. A whisper in contrast to the squeals and laughter of the Ice Bucket Challenge. I burst into tears. Without video, fanfare, not looking for accolades or attention, Suzanne would again embark on a 5 km walk with each step dedicated to Danielle. Just like she did last year and if her health allows, will next year too. Ice Bucket Challenge or not.

If you, like me, are looking for a way to participate but without ice water, then perhaps you would like to learn more about Suzanne’s participation in the Walk for ALS. If you go to her fundraising page on the ALS site, you will note that Suzanne humbly hopes to raise $300. You will see  beautiful pictures of Danielle, including one in her RCMP uniform (yup, she was amazing!), and you will read, in true quiet Suzanne fashion, a loving short statement about losing her daughter.

Here’s to a summer of fantastic attention to ALS, to unprecedented amounts of money being raised, and to one Mother who will walk in memory of my wonderful friend Danielle.

http://my.e2rm.com/PersonalPage.aspx?SID=4999776&LangPref=en-CA

 

 

 

 

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In June, I determinedly announced that this was going to be the ‘summer of Louise’. Unexpectedly in my hometown for the long summer months ahead, I was eager to spend precious time with my university aged son and daughter , take short trips to visit out of town friends, lounge in the parks at summer festivals, outdoor concerts, impromptu dinners, the promise of some time for deep introspection and the shifting towards the next important phase of my life. All this was going to be punctuated with the visiting of my dear friend Danielle. A friend since high school, Danielle’s life of adventure and accomplishment had taken her from undercover work as an RCMP officer in British Columbia, to working in orphanages in Thailand and Malaysia, travel throughout much of the world, media work with the RCMP, and policy analysis in Ottawa, now her summer was also anchored in our hometown. Five years ago, this phenomenal woman was given the most cruel news – a diagnosis of ALS ( Lou Gehrig’s disease).

We had kept in touch sporadically since high school, sometimes going 2 – 3 years without hearing from each other. About 12 years ago she contacted me, we enjoyed a rare long visit, reconnected, and determined to stay in better touch.  And we did. Emails, visits on the odd occasion we were in the same city, letters and photos. As the disease ravaged her body, Danielle’s big life was increasingly diminished in mobility although never in scope. She may have become less mobile, lost her independent living, but never her expectations for herself or others. As the disease unjustly took over her body, Danielle had no option but to move back to our hometown and be in the care of her extraordinary family. And yet, her  joie de vivre was not lost. For ALS robs your body of mobility and function, but not your mind. Your essence is left intact, to witness your physical decay. When I was in town, we would go out – her hands/arms were the first to be rendered useless; initially she could walk aided, then needed assistance with a wheelchair, too soon could not leave her wheelchair, speaking became difficult and finally no longer able to breathe on her own, was mostly confined to her family home – a sanctuary they created for her with gardens, paintings, a vibrant blue Buddha, photos, colours, laughter, underscored by all  the traditional and non-traditional medical communities options available.

A wonderful and true friend Barb, part of our Grade 10 triumvirate, was also keeping in very close contact. In mid-June, Barb and I began our soon to become ritual of Sunday morning coffee with Danielle. Barb and I would meet at Starbucks, get Danielle’s favourite Americano, and head to Danielle’s for our weekly visit.  Between offering Danielle sips of coffee through a straw that one of us would hold up to her, the three of us laughed hysterically, talked in hushed tones, cried together, discussed our pressing concerns – in some ways things had not changed since Grade 10! Barb and I also continued to visit Danielle on our own. And as July progressed, these visits became more frequent, and longer. The last Thursday in July I took dinner for all of us, and spent a luxurious visit with Danielle and her family. Even after many hours I had a very difficult time pulling myself away.  I was on my way to NYC for a week and was really going to miss her! As I walked home, I reminisced about how the summer was unfolding and realized that it had become the ‘summer of Danielle’.

I landed in Toronto after my week away, to an urgent phone call from Barb; our Danielle was in crisis. Learning she had been taken to the hospital, we waited throughout Friday for news, and Saturday received a call on behalf of Danielle, asking Barb and I to come to say good-bye. And we did. Our final intimate moments will remain private,  but I will reveal that in this most darkest of times, Danielle still remained the truest and sweetest of friends. In the worst moment of her life, at the instant she knew that it was her time to die, she looked to all of us who loved her and gave us the opportunity for a bit of peace.

An architect of her life from the beginning, Danielle managed her final years with the same tenacity and heart that had propelled her throughout the world. She not only fought to live, she fought off death. An incredible amount of strength that I will forever be in awe of. Courage, heart, truth, that resulted in an example of how it is to really live in this world. Nora Ephron determined at the end, that she wanted to ‘write her own story’. And so it is with Danielle.   Thus, on this Sunday morning, I am sitting in Starbuck’s, having an Americano, missing her greatly and deeply. Treasuring in the privilege of my summer of Danielle.