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
 

Nelson is one of the greatest towns and fundraising stops ever!!  While we were there, we met up with Betty Lou and her husband (and retired RCMP officer) Bruce.  Betty Lou is a long time volunteer for the ALS Society and also lost her late husband to the disease years ago.  We thank both Betty Lou and Bruce for their kindness in opening their home to us as well as planning a nice dinner for us.  We had an awesome welcome potluck dinner at Mary and Lou’s place with a room full of people who have all been affected by ALS.  We had lots of fun and it was a nice time to relax and do the meet and greet thing. 

-jeannie 

The next day we hit the streets selling hugs, only on this particular day we found a ton of people that already knew about ALS!  It was refreshing to see how many people knew about the disease and for such a small community and to raise $1000.00 in one afternoon really raised our spirits.  

We also got to meet Gord, a great guy who has been living with ALS for 10 years.  Gord taught us all too just laugh a bit more in life.  He is always smiling and he tends to find something humourous in just about everything.  We thank Gord for coming out and meeting with us and helping us collect donations. 

We are all starting to look toward home as we only have 2 days left!  We are thankful for everyone who has helped us along the way and for everyone we have met.  Stay tuned for future updates as I will post them on our website after we get home.  We will be doing some other fundraising events as well as sell t-shirts etc.  There is a lot more to come as we plan on continuing in our journey long after we return home. 

Tomorrow we head to Kamloops before heading home to Vancouver on Wed!!!!

Who knew that curling could be so fun?  It was remarkable the amount of enjoyment we all had tonight while fundraising and learning to curl with the local women’s curling league here in Cranbrook!  I have never been on ice before, so it was especially challenging for me.  At first I felt a little bit like Bambi, all legs and no grace!  But then after a while I started to get the hang of it.  I kinda cheated a bit by using the broom as my third leg…it really seemed to help my balance.  Then it came time for me have my turn at sweeping.  Let’s just say that didn’t go over well as I fell down immediately when I tried to take off after the stone!  Luckily for me, that was the only fall I took all night.  Unfortunately for Drew, he not only fell, but he also managed to drop his still camera and our video camera directly onto the ice….damage still to be determined! 

Curling is one of those sports that you see on TV (mostly you watch it on a Sunday because you are too hung over to do anything else!) and you think to yourself “how hard can this really be?” In reality, this sport is really hard!!  I think we all learned a lot all while having a great time.  We wish to thank the ladies at the Cranbrook curling arena for spending time with us, being so incredibly generous, and for sharing their sport!

I almost forgot to mention a very special person who we met yesterday.  His name is Reuben and he has PLS, which is another type of ALS except that, in his case, it’s staying in his throat and upper chest.  Reuben was diagnosed about 5 years ago and has lost most of his ability to speak.  Reuben is one of the sweetest people around and a bit of a local hero!  We met at the mall and as we strolled out to look at the motorcycle nearly everyone that walked by said hello to him by name. 

Reuben used to decorate all the floats for the local parade and he also helped to build many of the stores in the mall.  He gives you great big smiles and big thumbs up when he agrees with what you are saying.  Reuben has a machine that you can type into and it speaks for you.  Some of his friends have pre-programmed some basic messages that Reuben uses everyday.  Things like, “Can I have a coffee with cream please?” and “I have PLS” but the one that got me the most was the one the said “It affects my speech, but my hearing is fine, please speak normally.”  As a person without a disability I can only imagine what people must go through on a daily basis.  But I never really considered how many times people have to explain their situation or get looked upon like they are less because they can’t do something.  I forget just how much we use our voices to explain our situation and our wants and needs.  (especially someone like me, who basically never shuts up!) 

People assume that Reuben can’t hear simple because he can’t talk, which as we all know, isn’t the truth.  ALS/PLS only effects the body and not the mind (or in Reuben’s case, “not” the ears).  This is exactly the reason we are trying to raise awareness for this disease.  So that people understand what it is and how it affects the patient.  So that when someone suffering from this disease tells another “I have ALS” then they will understand and try and help them out the best they can.  Instead of thinking, wow I don’t know what that is but this guy seems a bit drunk and he probably can’t hear me well or even really understand what I am saying so I can’t really help at all. 

Anyway, I guess the point here is to slow down and take the time that is necessary to help out someone with a disability the next your run across them.  When you are feeling frustrated at the situation just remember what it is like for them….they have to do this everyday of their lives.  Imagine how difficult that would be. 

-jeannie

Wow, we received an awesome Calgary welcome as some local bikers met us in Red Deer and rode us into town.  This is also where we finally got to meet Tony.  Tony is the son of an ALS patient who passed away 2 years ago.  He had heard about us a while back and started to do some local fundraising while we were still in Ontario.  The whole time we just kept asking ourselves “who’s Tony?”  Once we got to Red Deer, it became very clear exactly who Tony is.  Tony is the kind of person you want backing you up in a time a need – an incredibly genuine, charitable and generous man – in every definition of those words.  Tony was happy just to help us out without ever having met us.  Tony reminded us again of what ordinary people can accomplish if they just try – if you only gave a bit of yourself for someone else.  I can only imagine the things we could accomplish if we all worked together – as hard as Tony did – towards a common goal, whatever that goal maybe.

That evening we went to the ALS Society of Alberta office for some pizza and talk!  We met some of the folks who work there as well as a patient currently living with ALS and also some family members who have lost their loved ones.  We shared stories and told them of our journey and then looked at some ways that we could help out in the future.

The next day we headed out to Canada Olympic Park where Glen and I hit the 90 metre ski jump that is currently being used as a zip line!  It was amazing…not only the view but being able to do the zip line 3 times in a row was totally awesome.  Did I mention the zip line was closed on this particular day, so they brought in staff to help us out so we could have some cool footage for the movie?  The entire staff was incredibly accommodating and tremendously friendly.  We thank you for all your help!!  I really found myself living in the moment as I took in all the beauty that surrounded us that day.  I really enjoyed meeting the staff and learning how to zip as well as just letting go of things that I really have no control over.  I guess maybe you can teach an old dog new tricks!

We also got to go up in a small plane and do aerial shots of us riding the bike down the highway.  Thanks to my brother-in-law Rob and his piloting skills the crew went up and circled us for about 40 minutes.  After we finished, Rob graciously took Lisa, Robin and I up for a spin so we didn’t feel left out!  Thanks Rob for all your help and support and also for letting Glen and me crash at your house!! 

Tony planned a fundraising BBQ for us out in Airdrie, AB at a local bike shop.  It was really cool and we got to meet a lot of locals, including Barry who runs the shop.  Barry is a great guy and he owns a Boss Hoss.  For those of you not familiar with this bike it has a V8 (502hp) for the engine.  It’s a huge bike with lots of power and as Barry puts it, it has 2 gears….1st for up to 140 km/h and 2nd for the rest (that is up to around 200).  He actually let Glen ride it around the block….and Glen actually did it!  Personally, I was scared cuz I know what this bike can do, and I also know just how long Glen has (hasn’t) been riding…so you see how this makes for a terrible idea!!  But Glen did great and the bike was returned without harm!!  Thanks to Tony’s hard work we made $1300.00 from the BBQ alone! 

While at the BBQ, another ALS patient came out to meet us.  His name is Vic and he lives in Airdrie.  He was diagnosed about 2 years ago and has now stopped working due to his illness.  Vic has 4 passions in life:
1. God
2. His wife
3. Children/coaching children in hockey
4. Dairy cows

He and his wife took a trip to Alaska this past spring and are busy planning the next adventure.  What I learned most from Vic is not to just do it, but to do it with passion.  When you sit with him and listen to him talk about his travels and things that he has seen, you will not only hear his words but you will feel his passion and true appreciation for everything that he sees.  His face and eyes light up in such a way that it reminds me of a child filled with wonder and awe on Christmas!  When you talk with Vic you forget that he has ALS, you forget that he is dying.  Either that or you just don’t care because you have trained your mind to focus and really listen as someone is speaking to you.  I find that I don’t worry about what I could be doing, or what I should be doing, or what I could say to make things better, or how I could help.  I’ve learned to simply listen and engage in the conversation at hand.  It’s pretty cool and I am finding meeting with people to be that much more rewarding and fun. 

Calgary has been exceedingly good to us and we appreciate all the support shown to us by our friends, family, new friends, and people we met while out and about!  Alberta is now in the #1 spot for most money collected by any one province!  Way to go Alberta…you really showed the rest of Canada what you are made of!! 

We would also like to thank all of Lisa’s family (once again!) for helping us out.  They not only collected money from their companies but they also let us stay at their house (Lisa’s mom even washed the crew’s clothes!) and they came out to support us at local functions.  Thanks to all the Whitten family all across Canada!!!

-jeannie
 

We’ve made it all the way to Alberta, which I think has surprised most of us!  We had a great few days in Regina including staying with extended family of Glen’s.  Once again we are taken by the hospitality that we have been shown, Glen’s cousin Ron and his wife Bertha welcomed our entire group into their home and let us take over beds, showers, laundry - since some of our bins popped their tops, our t-shirts that we sell got wet and we needed to dry and refold them!  We turned their garage into a sweat shop as we had 12 bins to short, dry and refold - 3,000 shirts in total.  Thanks to Ron and Bertha for hosting us, we truly appreciate it.

The ride to Edmonton was a long one, but a good one.  It was a beautiful day and the riding was spectacular.  Sometimes when you’re the one the bike you get into the zone so much so that you almost forget what you are doing.  (It hit me the other day that I am actually riding a motorcycle across Canada and that we had made it to Regina!!)   While in the zone your mind is clear, you are void of all thoughts and truly just riding down the highway feeling the bike and road, listening to the engine, wind on your face and taking in all the sights.  I like to also call these times “in the moment” and today I learned a few valuable lessons about being in the moment.

While at the Strathcona market in Edmonton I met up with a nice couple who were just strolling by.  They had come to our booth intentionally, but not for us, as an elderly couple usually has this space and apparently sells the best produce around!  When they asked “what’s all this about?”  (we get that a lot)  I started to tell them about ALS.  We talked for about 10 minutes, we hugged and they bought a t-shirt.  As they walked away smiling and talking to one another about what they had learned it donned on me that not only had I helped 2 people who had never heard of ALS understand what it is, but I did it while in the moment and thinking of nothing else except truly educating them.  I had no expectations, no ulterior motives, no inner voice saying or thinking any other ideas or thoughts.  Nothing.  It just happened and I really enjoyed talking with this couple.  Of course when I turned to Drew and very excitedly said, “Drew, we are actually telling people about ALS, most of whom had no idea what it is, and now they do!”  He simply replied “You are only getting that just now, what do you think we have been doing out here for the last month!?”  Okay, so I’m a little slow to catch on sometimes….

After the market (which by the way, went really well and we hugged tons of people and had the most successful fundraising day yet…GOOD JOB EDMONTON!)  we went over to meet a patient named Brian.  He wanted to come out to the market but needed to stay home and wait for a delivery truck of cement.  Brian’s family was pouring concrete for the new walkways, ramps, and lifts being installed in his home so that he can get in and out.  We learned all kinds of things about Brian, his life, his family and what is important to him.  At one point when some of us were tearing up, he told us not be sad because he was truly enjoying his life to the fullest and that was not a sad thing at all.  As we talked and completed our interview, the concrete truck came and our team offered to help out!  This is something that I really wanted to do because I had poured concrete before and have some skills that could really be of use.  The thing is, I never made it outside as Brian and I started up a different conversation once the camera was off.  As we sat in his living room a lot of heavy questions came up and Brian, Robin, and I all shared some of our personal struggles in life as well as our own philosophy’s on who we are and what makes us tick.   We started talking about what is success and who defines that and what is truly important…the essence of life if you will.  I realized that perhaps the meaning of life is simply what we make it and perhaps it is nothing more than what makes us happy and what we chose to hold dear to our hearts.  I realized as the crew started coming in with big smiles on their faces, that they had in fact finished the concrete and I had not helped.  I realized that I had been present and in the moment so much so with Brian that I was not thinking of anything else…like the fact that I should be helping.  I was simply there, having an in depth conversation with 2 other people.  Nothing more and nothing less.  My time with ALS patients has evolved, I have learned to listen more slowly and also to simply be present, be in the moment and enjoy it for what it is.  Slowing your mind is a difficult skill to acquire but one that is invaluable! 

I thank Brian for sharing himself with me and for teaching me the value in slowing down.  As we left and I watched the day slip away as the golden sky turned to a pink hue, I felt as though I was the luckiest person in the world. 

-jeannie

You know you are in the prairies when:

1) there is blue sky as far as the eye can see
2) you realize that the deer feeding near the side of the road have no place to hide or take shelter (where exactly do they go?)
3) you see the headlights of cars coming up behind you, but it takes another 45k before they actually pass you
4) the evening sky turns pink and travels off into the horizon, which goes on and on and on and on
5) people get excited to see a Harley pull up to the gas pump!

As you can tell, we are well into the prairies and we today find ourselves in Regina.  It’s really cool here, in both ways…temperature wise and also because Regina is a small town with benefits.  It’s big enough here to have every comfort of larger cities, but small enough that people still seem to care.  Morning traffic means a 15-20 minute commute across town and yes there are lots of traffic lights as they don’t need major highways and bridges to connect suburbs to the downtown.  It’s beautiful here and also extremely cold!  But, Glen and I are braving the weather and choosing to ride the bike in spite of it all!  We have come up with a new and inventive way to keep our hands warm by putting snowmobile gloves over the top of our leather riding gloves.  It won’t work for rain and we will have a chance tomorrow to see if it holds up in snow as the forecast for Saskatoon calls for it….the first on this trip!

This morning we headed out to Regina University where we hugged lots of students and handed out pamphlets on ALS.  It’s always incredible to talk with students and inform them about the disease as they genuinely seem to care.  I hope that we have done our jobs and helped the younger generation become more aware about ALS and how it affects those who suffer from it. 

We had a great day, complete with lots of media.  An ALS patient, Dennis, and his wife came out to meet us as well.  They had heard about our trip from there son, who lives in Vancouver and went to VFS (Vancouver Film School) and decided to make the drive to see us.  Dennis is 55 and although he walks with canes, he is doing reasonably well.  He is still working and trying to keep he daily routine as much as possible.  The hardest thing was hearing about how he and his wife are a team…they do everything together from paddling to hiking to solving problems and just plain old living.  For Dennis, the thought of his wife having to make her way in this world alone was more than he could bear.  It also made me think of how I might react in the same situation.  How hard it must be to know you are leaving this world and your loved ones alone.  How hard it must be to know you are losing your loved one to a terrible disease that has no cure and kills 100% of its victims.  How hard it must be to live with something where there is no hope of getting better (or even staying the same), you always get worse until death.  How hard it must be to stay positive each day…and yet they all do!  It’s truly incredible.  

For today I will put all of this aside and just be thankful that Dennis came out to say hello.  He believes that what we are doing is a great thing and for tonight, I am going to focus only on that…the belief in this project and that it is for the greater good.  

-jeannie

On Tuesday and Wednesday we found ourselves in Toronto.  We went and met some of the staff and patients at the ALS Clinic at the Sunnybrook Hospital which runs every Tuesday.  (They see 20-30 patients every week and most patients only come in once every 3 months - that gives you an idea of the huge number of people licing with this disease in the Toronto area alone!)  It was really great to sit and talk with everyone and hear the stories of their lives before, during, and after ALS.  It’s truly an amazing thing listening to so many people talk about the challenges they face with ALS and still finding a way to be so full of hope - I wish I could learn this skill.  There have been times on this trip that even I had to wonder if there was any hope to this mission.  Sometimes it feels like the challenges are too great, and then I meet patients like Don, John, Heather and Bruce…all patients of Sunnybrook.  They remind me to never give up, keep your head up and your eye on the prize.  

While in Toronto we found it hard to get any media attention - so we parked the Gord-mobile right in front of the CBC headquarters near the CN Tower and walked through the front door.   The receptionist was extremely helpful, and she even reached into her wallet and made a $20 donation.  Unfortunately, she was unable to find us a show at the CBC in Toronto that had time for us on our short time frame.  Although, we met a popular talk show host in the lobby, who briefly chatted with us and then wished us well.  He told us we needed a “good” media contact, you know an “insider”…we suggested that maybe “he” could be our “insider”… but he didn’t bite at that opportunity.  Oh well, we will keep trying. 

Now don’t get me wrong, it’s not that I am trying to take a stab at Toronto.  I’ve simply noticed a few things here that I haven’t noticed any where else - like the fact that Torontonians seemed to respond better to free “handshakes” instead of free “hugs”.  I think Toronto really needs a group hug. :)

Anyway, we are currently in Thunder Bay and while I was feeling rather discouraged in Toronto, several acts of kindness since we left has turned my attitude and outlook positive once again.  Not only did we receive warm wishes and free hotel rooms at the Lakeview Hotel in Wawa, ON, but we also met a man who has an aunt suffering from ALS.  The funny thing is we met him in the hotel bar and just started chatting.  He heard us telling someone what we were doing.  He then asked a few questions and then we talked about the “usual” things, like work and where you live etc.  Later that night when we went to pay our bill, we were told it was already taken care of.  This total stranger had paid our bill because he thought what were we doing was something most people wouldn’t - and then he told us about his aunt.  Such a random act of kindness has rejuvenated the spirits of the team and we thank you for that!  And if you are ever in Wawa, you really have to check out this hotel… (the Lakeview Hotel)… the rooms are really cool plus everyone there is super friendly. 

-jeannie

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

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