They say that home is where the heart is, and if that is true then I think it is fair to say that Jeannie and I now have a home that spans the entire country.  On our journey we met so many incredible people, and had so many incredible adventures – and as a result we left a piece of our heart at each stop.
We’ve been “home” now for more than a week – and somehow it all still seems very strange.  It’s hard to be on the go for 12-14 hours a day (or longer), 7 days a week, riding a Harley (how cool!) across this beautiful country of ours… and then… suddenly… just stop.
As some of you may have noticed… our blog seems to have just stopped too… until now anyway!  I can’t speak for Jeannie, but at least for me, I finally feel “normal” enough again to take the time to share some thoughts.  The biggest thought, for me anyway, is what do we do now?  We’ve raised some money – but not enough.  We’ve raised some awareness – but not enough.  We’ve shot a documentary – but now the hard work really starts – putting it all together to see if there is a story.  Well, we know that there is a story – but the real question is: does anybody else want to see and hear it!?
We set out with several goals.   The first was to raise 1.5 million dollars for ALS.  That hasn’t happened.  The second was to raise awareness – to the point that it actually makes a difference.  We don’t know if that has happened or not.  And the third was to make a documentary film that helps to accomplish the first two goals – and at this point we don’t know if we’ve done that either.  I guess time will tell if this trip has succeeded or failed in its goals.  What I can tell you is that this trip has changed us.  I know that I am not the same person I was when we left, so maybe that’s the point and the only goal that really matters.
It feels good to be home – and my home is now much larger than it was when this whole thing started.
Glen

p.s. - many more photos will be posted soon… stay tuned!

On the eve of our arrival back to Vancouver I am left with thoughts of our trip across Canada.  First off, we went to the UBC campus in Kelowna yesterday and hugged students while informing them about ALS.

Today we took our time getting to Kamloops so we could do some filming and then we had a fundraising dinner at the local Fogg & Sudds where we got to meet local patients, family members, and volunteers for the ALS Society.  We had a great night and also raised around $1100.00!  Thanks Kamloops for having us and throwing us such a nice going home party!

It’s going to be strange going home tomorrow.  I am still not sure if I am ready to go back to work yet, but I don’t have a choice.  I am scheduled to be there at 6:30am on Thursday and just for fun I will be working 6 days in a row!!  At some point everything that has happened on this trip is going to hit me…probably all at once!  My only hope is that anyone who has followed this journey will ask themselves the question of “how can I help make a difference?”  I say this because I ask it of myself.  Helping comes in many different forms and can be as simple as mowing the lawn of an elderly neighbour who just lost her husband all the way to riding a motorcycle across Canada.  I hope that we have inspired each of you ask yourself what kind of person do you want to be…the kind that talks about doing things or the kind that does things?  I hope that we have reminded each of you to do what is important to you and to live each day to the fullest.  I hope that we have been able to educate you on ALS and bring awareness to this terrible disease.  I hope that we have motivated you in some small way to get involved in something that is important to you, whether that is ALS or something else. 

If you choose to get involved with ALS you won’t regret it.  You will meet the most amazing people on the planet.  Your heart will be touched and your life will be changed.  You will, in fact, be a better person and you will appreciate life for what it is and not for it’s not.  For this, I thank ALL of the patients we have met and of course their families, for sharing their stories and lives with us…a couple of crazy kids from Surrey.  I dedicate this ride (and this entire journey) to all of YOU! 

As I sit here tonight and type my thoughts while listening to Coldplay I realized that I blogged nearly everyday.  I really hated the idea of doing this and in the beginning I had no idea how people could… communicate ideas online that other people (people you don’t even know) will read.  Now, in looking back I realize how therapeutic it has been for me.  Letting you all get a sense of this trip and what we are going through as well as giving you an idea of what ALS is and how it affects each patient has been a huge part of this adventure.  Stay tuned, cuz I am sure there will be more good stuff ahead as well as updates on new adventures and fundraising.

I hope that we have a great movie to take with us to Cannes, and I hope that we will have a film that will make each patient we have met proud.  We truly appreciate your openness to talk about this disease on camera…we know it is not an easy thing to do.  We hope that you will all stay in touch with us and let us know how you are doing.  Bob from Newfoundland, we want to come and ride ATV’s with you so keep us posted!  Also, Don from Newfoundland, we still want to walk across the rock next year as well.  And let’s not forget Calgary where I am hoping to ride and rope something…preferably of the cow species! 

On a personal note, I am going home tomorrow!  (a big high five and double thumbs up – there are several ALS patients who know exactly what I am talking about!) I am looking forward to seeing family and friends as well as my cat, but I will be missing my dad and my sister who are no longer with me.  I have often wondered what they might think about this trip and what they might say about me packing up and leaving home for 7 ½ weeks on a charity mission.  I will never know the answer to those questions, but I do know that my dad taught me to follow my dreams.  He, as the son of an immigrant family, is the one that taught me if you work hard than you can accomplish your goals.  I believed that once in my life, and then I lost my way for a time.  Now, I have a renewed faith in humanity and I truly believe that we can accomplish our goals if we work hard and commit ourselves.  Think what we could do if we all did a small part that as a collective would contribute to the greater good of mankind.  Think of all the marvelous things we could do…..

For my father, I promise to continue to live my life with passion and be true to my beliefs and stand up for what is right.  I promise to live my life by my word, because in the end that’s all you really have.  Your word is who you are. 

For my sister, I promise to listen better and to be less judgmental. 

For ALS patients, I promise that this is not the end for me.  I will continue my plight for awareness and I will continue to fundraise until the day has come when it is not needed.

Thank you to everyone who has helped us along the way.  Thanks for opening your hearts and your homes, your continued support has made it possible for us to carry on.  Thanks to everyone who has donated money to this cause…from buying shirts to stuffing cash in the bins to online donations to all the people at the gas stations across Canada who ask who we are and what the heck we are doing! 

And last but not least, a big thanks to our crew who has endured this journey right along with us….through the good times and bad.  I know I have asked a lot of you and pushed you at times when I probably shouldn’t have.  I hope you have enjoyed your experience and will look back on this project and journey with pride.  I am proud of each of you and will miss having you around each day.  (I know it’s hard to believe isn’t it!)

-jeannie
 

This year, I wasn’t able to cook or have people over to my house, or even see any family or friends.  This year I spent Thanksgiving in Winnipeg with people I had never met.  Several months ago while in Vancouver, Glen and I met George who is on the Board of Directors for the ALS Society in BC.  George is a lovely person who happens to have a sister, May, who lives in Winnipeg.  May and her husband James decided to have the whole gang over to their house for a delicious Thanksgiving feast complete with turkey, ham, potatoes, veggies, and lots of pie!  May set a beautiful table including china that belonged to her mother who passed away from ALS.  Now the amazing part to this story is that May has never used the china, not once in the 20 years since her mother has passed.  But this thanksgiving she decided that having us over was a special enough occasion to bring it out.  I think I can speak for the whole team when I say that we felt both honoured and touched by May’s kindness.  We had the most relaxing evening of the trip as we got to know May and James’ family that night.  It reminded me of the true spirit of Thanksgiving and made me set a new goal for next year’s feast, which is to include someone (or someone’s) that may not have a place to go and offer them the hospitality that was shown to us. 

Yesterday we went to the only ALS house in North America.  The house offers people a place to go when they need more help in the advanced stages of the disease.  It’s a place where people can “live” instead of being in hospital or at home where they might not be able to receive all the care that they require (especially true of elderly patients).  It’s a wonderful place and I really do want to try and get more houses set up around the country, starting in BC of course!!  While there we met with Frank, who has been living there for about 2 years.  Frank is 82 and has lived in Canada for 37 years.  Frank is an extremely interesting man and will grab your attention and heart within minutes.  He told us lots of stories of his life and then he said something that really drives home the reality of this disease.  He said “I am 82 years old and have had a good life, but it has been too long….if I would have died 6 years ago then I wouldn’t have to live through ALS.”  If that doesn’t remind you to be thankful each and every day for all the little things we can do for ourselves and for our health, then I don’t know what does.  My visit with Frank and Don (who also stays at the house but is being treated for another motor neuron disease) was short but very sweet and I am most definitely thankful for meeting them. 

The ALS Society of Manitoba and the ALS house staff invited us to stay with them for supper that evening.  They made us wonderful Ukrainian food complete with more pie!!  We had to rush out the door so they could keep on schedule but we are so happy to have been able to stop by and meet everyone, it was a great afternoon indeed.

Later that night Glen and I got to meet up with our extended family in Winnipeg and reminisce about some old times.  I know that we both were very happy to see our niece and nephew along with their mom, as we don’t get to do that often.  Glen’s nieces and nephews all have a special place in his heart as he was there when they were born and has watched them grow up into outstanding adults.  Family is truly something to be thankful for and we should show them that we love them each and every day.  That’s the best advice that I receive on a daily basis from the ALS patients that we meet.

This holiday season I challenge all of you focus on what is important to you and see how you can nurture that even more.  To go out and be the best that you can and spread a little kindness where ever you can.  I hope that we can all feel truly thankful for the people in our lives each day of the year, and not just on one particular day.  I hope that we can live each day like it was Thanksgiving (mixed with a little Valentine’s Day!)!!

-jeannie

Well… jeannie did a great job but I think she left a few details out of her blog on the way to Thunder Bay… so allow me to fill in a few gaps!

On our way to Thunder Bay we stopped briefly in Sault Ste. Marie and met with a young politician running for office in the upcoming Ontario provincial elections.  We then met with another inspiring ALS patient who came out to meet us with her boyfriend and a group of motorcycle riders who rode us out of town.

And then, just as the riders peeled off … we hit rain… serious rain that is!  Rain like I haven’t seen in years.  RAIN, and THUNDER, and LIGHTENING, in the middle of the night, all while cruising around Lake Superior!  It was AMAZING! (And a little scary all at the same time.)

But we made it through the weather (I got completely soaked) only to find out the following morning that the rain was so bad it washed out the road we were on – about 2-3 hours after we passed through!

Anyway – the bike and the RV made it through to Wawa, with no problems – until the next morning… when we woke up and discovered the bike parked on the sidewalk – which was not where we left it!  Apparently some drunken idiot decided in the middle of the night to take it for a joy ride… only to discover that we had locked the steering… which meant they could only go around in a circle… which also meant that they only got it as far as… well… up on the sidewalk… where they left it… with all the lights on… which meant not only was the bike parked on the sidewalk, but the battery was dead… again!

2 hours later we were back on the road… and off to Thunder Bay.

Btw… the hotel we stayed at in Wawa, truly was amazing – as jeannie said – but the really cool part is that Wawa is where Gord (owner of the Gord-mobile) is from – and we met a lot of his friends (including the owner of the hotel – who gave us 3 rooms for free) – and I must say, Wawa is a pretty great place… thanks again Gord!

-glen

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.

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

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 

What an awesome ride we had today! PEI is beautiful and a great place for biking, with its long and winding roads and no traffic. It gives you a chance to sit back, relax and enjoy the ride!
We have an event planned for the waterfront tomorrow, and hopefully we can start raising some serious money for ALS! I am getting a little worried on that front as funds are slow to come in and it seems as though our efforts are falling flat (with the notable exception of Newfoundland - go Newfoundland!!). We have a big goal to reach and we have barely scratched the surface despite having traveled through 3 provinces. It can cost an ALS patient approximately $137,000 for equipment required; nursing and home care costs can be up to 10 times this amount. Currently we have raised less than $7000 which barley covers the cost of 1 wheel chair for 1 person. There are an estimated 3,000 people living with ALS in Canada at any given point, so you can see just how important donations are. Please help us with this effort and donate today. It’s easy to do by clicking on “Make a Donation” on our website. It only takes a few minutes and will make a huge difference to people living with ALS. Every little bit helps out so please donate and also spread the word to your friends, families, co-workers etc. It really does take a village!

Ps. Don’t forget that you can match donations raised in Halifax ($426.13) and receive a charitable tax receipt and recognition on our website! See the blog titled “Attention Halifax” for more details. You may also match donations raised in Vancouver ($530.62) and receive a tax receipt along with website recognition. All money received will stay in the province from which it came.

Thanks for your support!

-jeannie

hey everyone,

i’m drew bienemann. you may not know much about me, but i’m the director of photography and camera operator for the documentary being filmed about glen and jeannie’s fantastic canadian voyage.

i’d like to let you know two things.

1: there is going to be a lot of pictures up on the site now, categorized by province.

2:there will be even more pictures on our Flickr photo page, which can be found at:

http://flickr.com/photos/13395697@N03/sets/

so check them out! i will update them as much as i can with the limited amount of time we have with an internet connection.

thank you,

dlb