So… while things in Toronto did not go all that well (from both a public and media interest perspective) the ALS Society of Ontario really stepped up to the plate and helped us out today in Barrie, ON and Sudbury, ON.

Suzanne, who works with ALS Ontario, was not satisfied with the “lukewarm” (read: cold)reception we received in T.O. and took it upon herself to make things better for us - specifically in her hometown of Barrie, ON (about 1.5 hours away from Toronto).

We arrived in Barrie where Suzanne had arranged for a warm welcome at the local Harley Davidson dealership.  After a quick tour around the lake and the city, from a group of riders (including the general manager of the HD dealership), our impromptu parade took us to a meeting with local radio, TV, and newspaper media and 2 patients living with ALS.  The best part was that the media was there to catch a tearful thank-you from Derek - an ALS patient from Barrie who, once again, reminded us why we are doing this.

We also received hugs from various members of the O.P.P. (Ontario Provincial Police) including one officer in particular who had a family connection to ALS.

It was a refreshing change from the previous 48 hours - and it seemed to arrive just in time.

We then moved on to Sudbury, ON, and another HD dealership, where again we were met by the media, (CTV News - Sudbury), and received a complimentary oil change for the bike.

Finally, the evening finished with another bitter sweet moment, as once again we sat down and interviewed a “young” (40’s) man and his wife about how ALS was affecting their lives and that of their young family.  I won’t get into too many details here, because I know that Jeannie still wants to (and will) say a few things about today on her own - and quite frankly she’s much better at conveying the nature of our journey, anyway!

For me, anyway, today provided a ray of sunshine and hope - that there are people out there who really do care - and besides, it was sunny, about 25 degrees (77F), and a perfect day for riding.

-glen

As you may know, our original short film was called “Documenting Charity: and the art of street shaving” and we are calling the current production “Documenting Charity: the ALS ride across Canada”.  But today, as I rode the motorcycle through the streets of Toronto, as we left our hotel from last night (in Ajax, ON), and as we met with the executive directors and president and CEO of ALS Ontario and ALS Canada, and as we met with patients at an ALS treatment clinic, my thoughts started to wander to how we “define” charity instead of how we are “documenting” it.

Last night we pulled into the Super 8 motel in Ajax, ON.  For the sake of saving money, (and thus putting more of the money we raise directly into the pockets of the ALS Societies!), whenever we are forced to pay for our own hotel/motel rooms, (instead of them being donated), we have agreed, as a team, to get only one room (4 people in the room) and use the motorhome for the other 3 people on our team.  When we checked in we were advised that, because there were going to 4 adults in the room instead of 2, that there would be an additional charge - still less than an extra room - but significant enough to notice. 

I asked the night manager if, given that we were crossing Canada for ALS, he might be able to waive the extra charge.  He told me that he didn’t have the authority and that I’d have to speak to the daytime owner/manager in the morning.

In the morning, I asked the owner/manager - not only for a possible discount, but also if maybe they might donate the whole thing (after all you don’t get what you don’t ask for) - and was rejected.  Now, I can take rejection, (I get it all the time), but for some reason what really got to me this morning was the indignation with which the rejection came.  I felt like, what I imagine, a homeless person might feel when begging for change on the street.  I felt embarassed.  I felt dismissed.  I felt like the manager/owner thought I was trying to pull a “fast one”.  It didn’t help that he also took a cursory glance at our letter of support from the ALS Society of Canada (which I offered up with the hope that, at least, it might give us “some” credibility) and then he said “I’ve never heard of ALS” and then turned his back and walked away.

To be honest, at that moment, I really felt my spirit being crushed, and my heart felt heavy.  On one hand, I don’t blame him.  We could have been trying to pull a “fast one”.  But the truth was, we weren’t.  For some reason, this rejection, this morning, felt harder.  It felt like I just saw somebody collapse on the sidewalk and then watched everyone step over or past them.

What have we come to as a society where our fears (of strangers, of tricks, of con artists) has overpowered our sense of community and charity?  I’m not sure that this rejection would have bothered me as much as it did today, had it happened 4 weeks ago.  Besides, at the end of the day, the room was “only” $132.00 - and it certainly wasn’t going to break us - but somehow it meant much more than that this morning.  Somehow now, knowing what I know, having met the people we have met - it meant the world.  It symbolized all the strange looks we get when we offer hugs on the street.  It symbolized all the of the physical, emotional, and financial struggles people living with ALS face every single moment of every single day.  And it hurt.

This afternoon we met with the folks at the ALS Canada and ALS Ontario office.  We told them that we were having challenges getting media support and coverage for our trip.  They told us “its hard to get the media’s attention - especially in a big city like Toronto.”  Robin told me tonight that when she contacted various TV and radio networks etc. she was told “we’re just not interested in your story”, or “that doesn’t sound like something we want to cover”.

Which made me think back to the Super 8 manager… “I’ve never heard of ALS”.  That pretty much sums it up - doesn’t it?

-glen

ps - we never got a national fuel sponsor, we never got a national airline sponsor, we never got a motorcycle sponsor - but we certainly asked.

We’ve made it to Ottawa, which still isn’t to the ½ way point!  Nonetheless, it is very scenic here and the weather is decent. 

We stood on the street corner near a public market and did our usual thing.  We did pretty well since we earned about $400.00.  Not too bad for a days work of hugging and passing out information.

I didn’t know how hard it was going to be to raise awareness when we took off on this adventure.  Sometimes I feel like a broken record or a parrot mimicking its owner.  We really do say the same thing each and every day.  But…the audience is different and so we keep the same message playing.  The funny thing is that we are still learning life lessons from each patient that we meet.  Just when we think we’ve heard all the stories and learned all there is to know, we run into someone who sheds a little more light and gives us a new perspective and better understanding to this disease and life in general.

On this particular day, we met up with David.  He and his wife came down to the market just to say hello to us and share a bit of their story.  David has been living with ALS for several years now, but is still relatively mobile.  Like others before him, he was forced to quit his job early, which has caused some financial hardships.  His wife has also had to quit her job in order to care for David.  Financial burden is most often absorbed by the families living and dealing with ALS.  There is limited government assistance and no help that is easy to come by.  Patients must apply for assistance through different programs run in each province and often times they are told to wait for up to 6 months for equipment and other aides.  6 months to an ALS patient is like ¼ of their estimated life expectancy given most patients only live for 2-3 years after diagnosis.  David is lucky enough to have a good retirement plan and other support that he does not have to leave his wife in financial ruin at the time of his passing.  (on a side note, David has a team of “foot soldiers”  who work hard each year at fundraising, and given David has a slow progressing form of ALS they are all fighting hard to raise money and find a cure for ALS before it takes his life)  They believe it can happen, and I want to believe it can happen, but we need money and we need money now.  I don’t know how else to say it.  They only way to find a cure is to put money into research, so you can see how important it is that we support our local ALS Societies but also support ALS Canada.  We also need to get the government involved (wow, I never thought I would ever support anything that needed more government!).  What all of this boils down to is one question, “Do we want to live in a society where you are forced into financial ruin simply because you have a disease in which there is no cure?”  It that really the way we want to live and be known for?  I thought one of the greatest things about living in Canada was our health care system, and I can tell you from first hand experience being that I work in one of the busiest hospitals in BC, that we need to take another look at the very thing we are famous for. 

These thoughts and more crossed my mind as we strolled through Parliament Hill after our dinner.  I noticed all the stained glass windows and stone carvings, I noticed the gardens and how the grounds were kept, I noticed that even the feral cats had nice cozy homes with food provided to them and I wondered if any one cared about the ALS patients.  I wondered how much 1 piece of stained glass cost, or how much 1 of those fancy Mercedes Benz cost (do government officials really need cars that expensive to go from point A to point B and do they really need palaces to live in while in office…I mean really, hasn’t any one ever wonder why their own house isn’t good enough?  They were living there before they were in office) and I wondered how and what I might do when I get back to BC to help get more government assistance for this terrible and devastating disease.  I wondered about the politicians’ that live here in Ottawa and how different their lives are compared to those living with ALS and then I wondered how things would change in a hurry if it were them.  As I stood in front of the eternal flame these are thoughts that crossed my mind………….

-jeannie

Another Saturday, another day of riding.  This time we geared up and headed for Ottawa, the Nation’s capital.

On my ride today my thoughts were of Claire and also of Lyle back at home.  I found out that he lost the use of his thumb, the only thing that he had control of; the only form of control in his life.  I found this news extremely disturbing and very upsetting.  Even though I know on a psychological level the realities of ALS, I still find it hard to deal with on an emotional level.  Watching people go through this is an exceptionally difficult thing to do. 

I realized after meeting Claire why I get so upset after talking with patients and the reason is because I can’t save them.  Up until recently my life’s work has been wildlife rehabilitation and I specialized in oil spill response.  I am used to “fixing” things and if they can’t be fixed then I can euthanize them in a humane way.  With this disease, I feel totally helpless, and it seems a bit futile at times and I am not sure my efforts even matter.  I wonder what difference I am really making here and I doubt myself and this journey. 

But then I think of Lyle and all the other people I have met and I remember that Claire did not give up on her school, and I will not give up on this journey either.  I know that even though I can’t save the people I have met, that we have given them voices, that we are helping them, in some small way, to been seen and heard and not the forgotten ones.  I have decided today that I want to get involved on the political front and fight for government care.  People should not lose their homes and retirement plans simply because they have ALS.  I want people to truly understand what ALS is and what families go through.  I want to help out in some small way so that others will not have to  feel such loss in their lives. 

-jeannie

Our last day in Montreal was spent on the campus at McGill University where we hugged lots of students and handed out even more pamphlets.  We weren’t allowed to fund raise or sell T-shirts (yes, our t-shirts have arrived and are available for a small donation!) so we spent the whole day raising awareness for ALS.

Later that afternoon we met Claire.  The most exceptional thing about Claire isn’t that she has had ALS for 7 years, nor is it that she is the happiest person just to be alive.  It is, in fact, that she wanted more than anything to meet us, so much so, that she made a 3 hour drive in each direction (with the help of her sister and 2 nieces) to Montreal to meet us.  You see, Claire, is in a wheelchair and can not drive, walk, dress, eat or even brush her hair without the help of someone else.  To make a 6 hour journey is no small feat, as with most ALS patients they tire quite quickly, and it is no different for Claire. 

46 years old and bedridden or confined to a wheelchair, Claire is no stranger to daily frustrations and hardships.  She has a staff of people who help her do every aspect of her life from showering and dressing, to brushing hair and teeth, to bill paying and letter writing.  She insists on going outside each day and she must be dressed in proper attire, which is to say….matching!  She has the warmest smile and a sense of humour to die for. 

Before being diagnosed with ALS Claire was a bookkeeper extraordinaire!  One day she decided that she would follow her passion for hair cutting and go to hairdressing school.  It was there, about ½ way through the course that she found out about her illness.  Most people would have given up, why finish school when you are going to die in just a few short years?  But not Claire…she finished her course to prove to herself that she could even though she knew that she would never be able to cut clients’ hair.  Sound sad…not for Claire, as she says “it doesn’t matter, I got to cut my brother’s hair when I was young.”  She is truly an inspiration to us all as she reminded me to appreciate each day and not to sweat the small stuff.  In her words, “I don’t have time in my life for negativity” which is something I think we should all strive for. 

Meeting Claire reminded me of how lucky I am to be so healthy and how I need to work on not letting certain things bother me.  It reminded me how precious life is and how we should make time for the things we find important in our lives.  She, without knowing it, gave me the strength to forgive my crew after we had a horrible day and wanted to kill one another.  She gave me the courage to tell them all what I expected of them and also to tell them what a good job I thought they were doing.  She, without knowing it, has made me a better person and all that came from a 2 hour meeting.  Claire reminded me of the reason why I am doing this and why I won’t stop even when this trip is over. 

I thank you Claire and I hope that we will stay connected long after our trip is over!

-jeannie

Well, here we are in lovely Montreal.  This afternoon we did a CBC Radio Canada interview and then afterwards we went over to Dawson College to meet with Tony Proudfoot.  For those of you who have not heard of Tony Proudfoot (you must not be a football fan!) he played for the Montreal Alouettes for 12 years.  Tony was diagnosed with the bulbar version of ALS this past May. I wish I could tell you that I pulled off a great interview with him, but I didn’t.  I could barely speak and I realized at that moment how much this trip and meeting ALS patients is affecting me on an emotional level.  While listening to Tony talk about how his life has recently changed and how he will most likely lose his voice by spring (he also lectures and does commentary for the CFL) I felt a bit helpless, like there was nothing I could do to help anyone with this disease.  I really do want to help and right now I feel like this is not doing a bit of good for the people currently living with ALS.  My hope is that one day we will find a cure for this terrible disease and I know our efforts to raise awareness and money will definitely help out.  But that is for the future and what can we do for the present?

Listening to everyone’s story and knowing their fate is almost more than I can take at times.  It breaks my heart to look into the eyes of someone who has a terminal disease that will take their life in just a few short years, knowing there is currently no hope for a cure and no medication to help them out.  The only thing that makes it bearable is being around them each day.  Their constant positive outlook on life and their ability to live each day to the fullest is truly an inspiration to each of us.  If there is one thing I have learned from this trip, it is that we should all strive to live our lives that way.  One day at a time, with a positive outlook-reminding ourselves not to sweet the small stuff and keeping an eye on the things that really matter.

BTW - on Friday we will be at McGill University from 11:00-3:00 if you would like to come out and see us!

-jeannie

On Tuesday we went downtown Quebec City to hit the streets for hugs and practice our french!  We met up with an ALS patient named Pierre, and his wife Odette.  They were a great help as they worked right along side us and spread the word about ALS (in french).  Pierre has been living with ALS for 7 years and is still able to get around quite well.  He uses his wheelchair when he gets too tired to walk, and he is still able to speak with ease.  The most remarkable thing about Pierre is his ablility to raise money!  He has raised over $100,000.00 for ALS and has already raised $25,000 this year alone.  He and Odette participate in the ALS walks each year and also help promote other events (like ours) throughout the year.  They are an amazing couple and we thank them for all their hard work!

As we left Quebec City at the end of the day and headed for Montreal, I reflected back to all the patients that I have met and I realised that I am in awe of their ability to always have such a positive outlook on life.  They truly live each day to the fullest, living one day a time, and not worrying about the day to day garbage that most of us do.  I find that ALS patients seem to live with fewer concerns about the things that frustrate most of us from day to day (things that really aren’t all that important in the grand scheme of life) and are generally happy to be alive each and every day -which is what most of strive for but somehow we lose our way.

We have been told by many people living with ALS that we have inspired them, however we feel the opposite - they have inspired us to focus on the things that really matter and to continue our journey raising awareness and funding for the Societies.

We are currently in Montreal and are hopeful to meet up with some researchers and other influential people living with ALS. 

For those of you who are wondering where we will be so you can come out and meet us….we are working on an appearance at McGill Univerisity on Friday.  We will update the website with details as they become available.  We will also be doing CBC Radio (the Home Run show) this afternoon around 4:30ish! 

We would also like to thank our friends and family who are here in town for hosting us at their homes.  Home cooked food, clean laundry, and friendly faces gives us a tremendous boost!  Our thanks to Patricia and John, Gillian and Bob, and Siobhan’s mom for letting us invade your homes and lives for 3 days!  We really appreciate your genorosity. (plus, we got to play with their pets-1 dog, 3 cats and a rabbit)

Today’s ride was a long one, about 8 hours from Fredericton to Quebec City.  It was a bit cool but bright and sunny, and thankfully no break downs with our vehicles!

While I was riding in the sidecar and admiring the changing colours of leaves on the trees my mind once again wandered to an ALS patient I met in Vancouver just before we left for this trip.  Lyle is also my age (well, nearly) he is 39 and lives with his wife and their children, one of which is only 3 years old.  Lyle, like Ronnie, was an active man and considered healthy before his diagnosis.  He was successful in his career, drove a fast sports car and like everyone else with this disease, did not deserve it. 

Today my thoughts drifted from how terrible this disease is and how complicated Lyle’s life is (he is completely paralyzed except for his left thumb) to his 3 year old son.  I wondered what it must be like to grow up watching your father slowly die.  To never know what it’s like to be hugged or snuggle in his lap to read a bed time story.  I wondered what it would be like to never be pushed on a swing or taught to ride a bike, to go fishing or play in the sandbox.  I wondered how that might shape a young person and how angry you might be that you were robbed of your childhood by not having a father.  I wondered what goes through a 3 year olds mind when he watches his father struggle to speak and breathe while he lies helpless and dependant on his wife for his every move, his every need. 

I wondered how families deal with this each and every day and how they have the courage to go on.  I wondered how their lives would be after their loved one passes away.  I wondered what I would do if I were in their shoes.

This is a truly devastating disease, not only for the patients who live with it and die because of it, but also because of the heartbreak it causes for their family and friends. 

On a similar note, Bob from Newfoundland just called!  He wanted to tell us that he and his brother are trying to organize an ATV ride from St. John’s to Corner Brook.  It’s funny how quickly someone can impact your life.  Bob has quickly become one of our friends in the truest sense of the word and it was bittersweet to hear his voice (or what is left of it) on the phone.  As you may recall, Bob has the bulbar version of ALS, which attacks the throat muscles first, he struggles to speak and we struggle to listen but it is worth it because when a friend calls…you answer.  We love you Bob and hope you are doing well, we also hope to be able to see you again soon. 

-jeannie

ps. a note from Glen:

Today was a really long and frustrating day.  More stuff just went wrong with the Gord-mobile and I am grumpy from lack of sleep and living in cramped quarters with 6 other people.  My frustration level was extremely high until Bob called.  Once again I am reminded why we are doing this ridiculous trip and that it does in fact matter, thanks Bob for the call your timing was perfect!!!

-glen 

Another province and another day that I feel lucky to get the opportunity to travel through this stunning country of ours.  The leaves are beginning to turn and there is crispness in the night air.  The days are spectacular….not a cloud in the sky.

We made our way downtown and found a local flea market to set up shop.  It was a bit slow for what we wanted so we moved over to the local Walmart and found a willing crowd.  Apparently at shift change the new manager on duty didn’t like us being there (I guess they have some rules about not soliciting in front of their store, i.e. we weren’t allowed to pester their customers!) so we started to pack it up and move on down the road.  While loading up the bike a mall security guy came up and wanted to know what was going on.  We told him we were leaving but he insisted on letting me know that if we didn’t move quickly he would call the police and we could get a ticket.  For those of you who know me personally, you can imagine how well this went over.  Did he really think I was going to sit there and watch him phone the cops and then wait around for them to show up?  And doesn’t he have something better to do than to harass people doing charity work who were already in the process of leaving?  Mind you it was true, we were parked slightly in a handicap spot, so I guess he had a tiny little point!!

Later tonight we all came back to Karen and John’s house (Karen is on the Board of Directors for the ALS Society here in NB), which is where we spent last night.  They graciously hosted us for 2 nights, including feeding us, letting us use up all the hot water in the shower, doing a couple loads of laundry, washing the bike and filling up the Gord-mobile with water!  Plus, we went fundraising in the neighbourhood and raised extra money by giving all the local kids rides in the sidecar!  Which by-the-way now puts New Brunswick #2 on list for most funds raised with a total of $606 for hanging out and selling hugs!  (Newfoundland is still #1 with $1500 we raised at our charity BBQ day, plus the $3000 raised for us by ALS NFLD in a raffle!) Not bad for a little community, especially since we raised more here in Fredericton than in Halifax and the locals love that fact!!! 

As the day comes to a close I am sitting in Karen and John’s house appreciating all the hospitality and generosity, but my mind still wanders to all those who are suffering from ALS and who we can best use our time to help them the most. 

-jeannie

Day 13 and we find ourselves in Charlottetown, PEI.  I know I keep saying all the places we go to are beautiful, but it really is true.  And PEI is certainly one of those places!  We hung out along the waterfront and chatted to all the folks who strolled by.  We even went over to a local radio station and did a spontaneous on-air interview. 

In Charlottetown we raised lots of awareness along with $546.23!  And don’t forget you can match those funds and get all the perks that I have mentioned before – tax receipt, etc!!

I also had a chance to meet Colleen, whose husband died last June from ALS.  Ronnie was diagnosed with ALS when he was only 35 and passed away 3 years later.  He was a husband, a father, a friend, and a son.  Ronnie, who was a healthy and active person (he was also a volunteer firefighter) drove a milk truck and thought that his muscle tiredness was caused from fatigue but when it only got worse and not better he decided to see a doctor. 

I’m not sure what got to me the most, knowing that Ronnie is my age, which then made me think about what I would do in his situation, or listening to Colleen tell me of all the struggles that Ronnie and his family faced for 3 years.  The fact that it would take 3 people just to wash his hair, or how difficult is was just to get him out of bed. How he would struggle just to try and thank his friends for stopping by or the way he had to sit in his wheel chair and watch his life slip by knowing his family was doing the same thing. 

If I could only help you all understand what ALS patients and their families go through then I would be doing a great thing for all the Ronnie’s, Don’s, Bob’s, Helen’s, Gary’s, Lyle’s and Mike’s out there. 

As we rode for New Brunswick these are the thoughts that crossed my mind.  As I watched the golden sun fade to pink I wondered what I would do if I knew I only had 3 years left to live.  I wondered how I would treat people and how I would want to be treated.  And then I wondered why we don’t act like that everyday.  As I looked at a photo of Ronnie taken about a month before he passed away, I wondered what my life would be like as I sat tied to a wheelchair with a breathing machine placed next to me, unable to communicate expect by blinking my eyes.  I wondered what it must be like to not be able to eat anything hard or crunchy because you can’t swallow and you might choke.  I wondered what it must be like to be fighting for a breath of air but the muscles controlling your lungs no longer function and even though the machine breaths for you, it just isn’t enough.  I wondered what it must feel like to know this is the last time I will see my family, knowing that your very life is drawing to a close.  I am guessing this is how Ronnie must have felt….and more.  Today I dedicate this ride to Ronnie….

-jeannie