Day 76 – Terra Nova National Park to Chapel Arm, NL – 158km

Three years ago, I had a thought. I tried to imagine myself cycling across Canada. “There’s no way,” I told myself. I went out for road rides and couldn’t get the idea out of my head…If I can do 180km today, there’s no reason why I can’t do 100km on the day after today… “There’s still no way,” I told myself.

Through the years that I was in middle school and a junior in high school, my brother had an ongoing battle to get the education he deserved. One of his teachers took his communication device away because she thought the voice was annoying.

Sometimes new vocabulary would be programmed onto Kerr’s Dynavox. He would go to school with a note for his teachers which explained the new programming and asked them to work with Kerr on using it. We later found out that the school considered these notes harassment. Whenever our family pushed for an improvement in Kerr’s education, Kerr seemed to suffer reprisals—forced to eat his lunch in a different room than other students, less time with his attendant who had worked with Kerr for years, and coldness from some of his teachers. Sometimes Kerr came home with a full lunch box. They weren’t even feeding him his lunch sometimes.

Kerr withdrew. He was bored and depressed. Kerr’s assistant would come home in tears some days after witnessing what was happening. I was younger at the time. I knew my brother had every right to communicate and that people who I did not know were taking this right away from him by underestimating and refusing. I was filled with anger. I think this was the only time in my life where I’ve had pent-up hate for particular people. I hadn’t even met these people, but I wondered what had happened to them to make them so naïve and wretched. Biking and running have always been my main outlets for stress and anger (not that I’m angry if you see me running).

I’ve learned a lot since then. I still have many of the same thoughts. However, I now know that it’s not as simple as certain people being cruel and narrow-minded; although there was a lot of cruelty and narrow-mindedness. The politics of a segregating system and disabling attitudes that people learn from others around them are the frameworks that discrimination is constructed from.

Sometimes I like to talk about my problems. I think it’s the healthy thing to do. The unfairness that my brother was experiencing became a battle with the Toronto District School Board that lasted many years. This battle consumed our family life. Ironically, although we were talking about the situation all the time, I never talked about my anger or frustrations. I was sick of the situation. I wanted to tune it out. We were all stressed out and tense, Kerr was depressed, and arguments were arising between us. My mom didn’t need any more stress at this point—she was on a strict macrobiotic diet to eliminate cancerous growths. I hated these teachers, the principal and everyone who made my brother’s twice a day, one hour trek to and from Scarborough for school meaningless; not just meaningless–torturous. I hated these people for ruining our family life.

Biking and running were my emotional releases.

At the end of high school I was thinking much more positively. Kerr had left school. Our battle with the school board had transformed into a legal fight. Kerr was no longer in jeopardy of being discriminated against and not having his needs met on a daily basis. Our family still had our stresses, but we were doing better. Kerr was doing better too. He was volunteering at the Royal Ontario Museum and doing research at the Toronto Archives, giving presentations on human rights (at least some positive things came out of this experience), and learning lots more with his assistants than he learned in the toxic condescending environment at his former school.

This “cycling across Canada” thought wouldn’t leave my head. In grade 12, I made it final that I was taking a year off before university. As you can tell from reading the last couple paragraphs, this experience my brother endured for too long triggers spite in me that most people who know me can’t believe I possess. I’m very passionate in my belief that every person has a right to be included and to have a voice. In Kerr’s experience, he was stripped of his voice, stripped of his humanity, and treated as an object. I knew that my brother wasn’t the only Canadian alternative communicator with such experiences.

I wasn’t sure how, but I was sure of who, why, what, and when. I was going to cycle across Canada to raise awareness about people who speak with augmentative and alternative communication and to try to get values of inclusion and the presumption of ability in mainstream media. I wanted to improve the lives of all Canadians who have disabilities, my focus being on those who are in situations similar to my brother’s. I hadn’t thought much about fundraising at this point, nor had I thought much about advocating for new policy. I knew that I needed my brother’s help. I knew that my mom would be a powerful force in the campaign. I knew my dad would be behind us, and willing to make any sacrifice to make it happen. I talked to my friends, family, and network. Slowly, Kilometres for Communication took shape.

That was three years ago. Tomorrow I finish my pedal across Canada—all the rain, wind, hills, mountains, blisters, sores, thirst, flat tires, fatigue behind me. By no means is this journey to empower voices or prevent what happened to Kerr from happening to others over. However, it does feel that years of emotion, planning, months of giving everything I have, the stories from all the people we’ve met, are manifesting. I haven’t finished yet, but I know that when I do, I will know a new feeling.

Today wasn’t a tough physical challenge. The wind wasn’t a huge factor. There were hills, but what goes up must come down. The sun was out. Nonetheless, today was one of the toughest days mentally of the trip. I was feeling some pain from some rashes. Moreover, I felt so close to finishing, yet I knew that I wasn’t finishing today; that I’d have to wake up again tomorrow and do it one more time. I went through each day of the trip. I tried to go through each road I took, the weather, and the people I met. I had shudders thinking about my days in the prairies and the days of rain in Northern Ontario. That, in combination with thinking of the memories from the last decade, the last three years of planning, and the training 3 hours a day, 6 days a week, got me through today.

At one point today, I was quite high up on a section of the Trans Canada going from the mainland along a channel of land to the Avalon Peninsula. The sky was blue. I could see thick cloud in the valley below me, which I was about to descend into. It really was an epic view, being above the dense clouds and seeing the ocean outlined by misty mountains fading into blue on my right and left. Someone down in that valley probably is wondering where the beautiful day went. They might even think it’s going to rain. I descended into the valley. I lost my view of the ocean. The clouds weren’t dark or threatening from below. They were even more spectacular. The light reflected off the afternoon fog in a magical way that I have never seen before. Life has a way of hiding beauty from those who are afraid to venture.

I cycled by an exit to a place called Mosquito Cove. My first thought was: “Why build a road to such a wretched place?”. On second thought, maybe some people have discovered a gem which they want to keep polished. Perhaps Mosquito Cove is simply a deterring name to keep the tourist traffic away. There’s always another perspective to be taken.

-Skye

August 2/11

Day 65 – Halifax, NS – Rest/Event Day

I woke up and got myself ready. Each time I’ve spoken to
media on this trip, I’ve been suited up in my bike gear, sweaty, and perhaps
unshaven. Today was going to be a little different. I felt I needed to look the
part for Breakfast Television on CTV. I spent a half hour grooming—shaving,
manicure, hair, all that nonsense.

Laurie drove
my mom and I down to the CTV studio where we met Paul Doucet from the Speech
and Hearing Association of Nova Scotia. Paul had arranged the BTV interview for
us. We entered through the back door. It felt strange walking through the dimly
lit studio full of cameras and screens. Eventually, my mom and I moved from the
waiting area to our seats in the Breakfast Television Area, where we met our
host, Heidi Petracek. We chatted for a minute without the camera rolling; then
we watched the weather forecast finish up and waited for our cue. The interview
went quickly—it was about 5 minutes. I think it went well, but I’m not sure
because I never saw a recording of the show. Usually I don’t get to see the
media we’ve gotten because we move on to the next place.

CTV had asked me if I brought my bike. I hadn’t. I
probably could’ve shown up in my full bike gear with my Norco cross bike.

After the interview, my mom and I walked most of the way back
to Laurie’s and Dorothy’s house when
we heard a honk, and Laurie was there to pick us up. Back at their house I had
some cereal, toast, and fruit for breakfast. I was feeling full. Dorothy and Laurie’s
grandchildren, Jason and Joshua, were there that morning. Dorothy had made them
their favourite breakfast—pancakes with blueberry sauce. Jason and Josh decided
to save me a pancake. I was heading out the door to leave for our Halifax event,
feeling full, so I accepted their offering, but left it for later.

We arrived at the Maritime Museum of the Atlantic just
before 11:30am. We walked around to the boardwalk at the back of the building,
next to the water. This was the lovely location of our event. There was lots of
tourist traffic. There were benches and some large boats were docked nearby,
adding to the charm of the harbour. The Speech and Hearing Association of Nova
Scotia (SHANS) was hosting this event. One of the main organizers of the event,
Renena Joy, was away on her family vacation, so I never got to meet her and say
my ‘thank you’ in person. Thank you Renena!
And thank you to the committee
of volunteers who made this event happen.

Strawberry Shortcake!

Members of SHANS were serving strawberry shortcake with
the donations going towards Kilometres for Communication. The event committee
had managed to get a large quantity of fresh strawberries donated by two
farmers. They had also managed to get Sobey’s to donate a gift card to buy the
shortcake and whipping cream. There were examples of AAC symbol boards for
people to use to order their strawberry shortcake. Some people who stopped by  were curious about our cause, and asked
questions; others didn’t, they just wanted their strawberry shortcake. Next to
the strawberry shortcake table, my mom and I sold Kilometres for Communication
T-shirts and talked to people about our cause.

Mark Cameron and Brian Baker

Well-respected local musicians,
Mark Cameron and Brian Baker were strumming and singing. The kids loved it.
Some came and sat right in front of the musicians. One 5-year-old, Everett, who
speaks with a communication device and gets around with a walker which
surrounds him and has 2 large wheels, was dancing all over the boardwalk.

Everett talking with his mom using his communication device

Everett introducing himself to me

There
was a third table with a display on Kilometres for Communication and AAC. At
this table there were some more examples of AAC for people to try out.

The "try a form of AAC" table

To everyone who made the event possible, to everyone who
came out, thank you! I met several people with whom we had been in touch
online, but had not met. Partway through the event, Gail and I spoke about
Kilometres for Communication and why it needed to happen. A lot of our crowd
was tourist pedestrian through-traffic. People had stopped to get food or
listen to some good music. Then we began to talk, and if they were intrigued,
they hung around, listening curiously.

Just as we were finishing off the event, Global News
arrived. Nicole, the reporter, interviewed myself, Penny Kitchen, and Sarah, a speech
language pathologist experienced in AAC. I was excited. Normally the news
coverage is quite quick and to the point. Nicole, the reporter, got about 30
minutes of footage. Yes, tons will be cut out, but this footage was promising.
Often it’s tough to educate people through media because we only have 1 minute.
That’s just enough time to explain What,
How, and a brief Why. Penny used her eyes to spell in this interview. A microphone caught
the voice of her attendant, Tiffany, saying the letters, and the camera was
focused on Penny’s eyes as she indicated what letter she needed to spell her
thoughts. (I explained how Penny communicates in yesterday’s blog)

After the event, Penny took my mom and I for a walking
tour of downtown Halifax. Tiffany and I took turns pushing Penny up the steep
hill from the harbour towards the Halifax Citadel National Historic Site. Penny
would indicate with her head and eyes which way she wanted to take us each time
we came to an intersection. After walking through the Halifax Citadel National
Historic Site, Penny took us down a road where the sidewalk zigzagged around
bar patios, often becoming a boardwalk on the road. Then we walked through the
Public Gardens and eventually into the Camp Hill Cemetery. Earlier in the day, I
had gone by the Alexander Keith’s Brewery. I’ll return for a brewery tour on
another trip. We strolled through the cemetery. Penny and Tiffany pointed out
an impressive grave monument—the gravestone of Alexander Keith. There were two
rows of Keith’s beer caps sitting on an edge of the grave marker. Another gravestone
had the name of a man and both his wives on the same stone.

Keith's Gravestone

The tour ended at Penny’s home. She and her sister,
Patricia, had a decent sized house renovated into two separate units. Penny’s
unit has two stories, an elevator, and a bathroom with a hoist track from her
bedroom. It was a nice set-up. Penny has her own living space, and she can live
independently, yet she isn’t far from her sister if any emergency were to
arise. Sometime in the next decade, Kerr (my brother) and I will have to figure
out a free-feeling living situation (for my brother). I find it interesting to
see the solutions that various families have come up with to avoid the
institutional option.

Penny, her parents (Dorothy and Laurie, Patricia (Penny’s
sister), Tiffany and Jessica (Penny’s attendants), my mom, and I sat in Penny’s
living room talking over tea, water and cake. Eventually, after a tough goodbye
we left Penny’s house, and drove back to Dorothy and Laurie’s home for supper before leaving Halifax.
I had my pancake with blueberry sauce from earlier as a pre-dinner snack. It
was delicious—thank you Josh and Jason. We had the TV on Global for the 6 o’clock
news. We watched the entire news. There was nothing from earlier. We were disappointed.

My mom and I got ready to drive back to Truro. I would
leave from Truro to cycle up to Cape Breton the next day. Just as we were about
to leave, my mom received an email. The news story was going to air, just not
tonight. This was great news, but once again, we wouldn’t get to see the piece.

Halifax was a wonderful city. I definitely want to return
to experience some of the city’s culture. Penny, it was a delight to finally meet
you. Your tour was a memorable part of my trip that won’t be forgotten. Dorothy
and Laurie, your hospitality and generosity won’t be forgotten either. Most of
all, I want to thank you for sharing your experiences—I learned a lot. The
stories and perspectives you shared were profound, enlightening, frustrating, funny
and sad.

On to the last leg of the trip!

-Skye

Day 64 – Truro to Halifax, NS – 100km

I had set my alarm for 7:30am. I was dozing half-awake in
bed, trying not to let myself fall back asleep. I was stretched out in the
comfortable queen bed. I felt the perfect temperature. My body felt stiff, yet
momentarily relaxed when I flexed, stretched out. My pillow was one with my
head.  I didn’t feel restless. I felt a
plethora of relaxation and laziness that a pampered cat might feel.

I had a strange mental deliberation. I really wanted to
get myself down to the dining room for the breakfast which D’Arcy and Anne (of Belgravia
B & B, where I was staying for the night) were preparing. I knew it would
be good. I was hungry. I had read an entry in their guest book about fresh strawberries.
At this point, only hunger could get me out of bed. I lay in bed, trying to maximize
my time drowsing, trying to figure out the latest time I could possibly roll out
of bed.

After procrastination, I forced myself to get up. I
changed into my bike gear and made my way downstairs to the dining room. There
was a large bowl of fresh strawberries, a basket of muffins, and there was more
to come. D’Arcy and Anne brought out a plate with Canadian bacon, eggs Florentine,
and an extra helping of scrambled eggs to accommodate my large calorie intake.
I don’t normally eat this well on the road.

Janice, Gail, and I well rested, about to leave Belgravia

Leaving Truro

After further procrastination and relaxed conversation,
Janice and I were outside with our bikes and ready to pedal. We took Highway 2
to Dartmouth, cut through Dartmouth on an arterial, and took the bike lane
across the MacDonald Bridge to the Halifax harbourfront where we finished our
pedal. Other than a 6km stretch of construction on Highway 2, it was an
enjoyable ride. Actually, not quite, we hopped onto the sidewalk in Dartmouth
to avoid more construction. The last 30km before Halifax, Highway 2 winds its
way along the shores of lakes and basins. It was quite pretty.

Janice and I arrive at the Halifax Harbour

Take II

Janice and I finished our pedal on the boardwalk near the
Maritime Museum of the Atlantic. Last night, Janice, my mom and I were joking
about the funny pictures on the RV. We talked about doing certain poses with
them. Janice hadn’t forgotten this conversation. She insisted on taking the
photos of us posing next to the tacky picture of kids peering out the fake
window on our RV. I thought it was funny, but after a 100km ride I just wanted
to sit and sip my recovery drink. I did eventually pose for those silly photos.

We've made it this far!

Tacky RV photo #1

Goofy RV photo #2

My brother and mother had met a woman at a conference
several years ago. Her name is Penny Kitchen. She raises her eyes to say ‘yes’.
She lowers her eyes to say ‘no’. She raises and lowers her eyes to say ‘maybe’
or ‘I don’t know’. She can also spell quite quickly using her eyes. Her
communication assistant will ask her: “first, second [half of the alphabet],
vowel?” Then, using a chunking system and saying the most frequently used letters
first; Penny will indicate the letter she wants. It sounds slow, but Penny is
able to communicate at a remarkable speed considering the method she is using to
communicate. It’s quite fascinating to witness. Penny also communicates using a
communication device. She is currently trying to obtain a communication device
which uses eye-gazing technology.

My mom and I were staying with Penny’s parents, Dorothy
and Laurie.  Penny and her assistant,
Monique, joined us for a spaghetti dinner at Dorothy and Laurie’s house. This
was the first time I got to meet Penny. I had only heard about how she spells
with her eyes. I was told she was quick. I didn’t realize how fast she is.

I heard many stories from the Kitchen family. I think there’s
a valuable lesson that can be learned from each and every one. Penny received
her university degree in business from St. Mary’s University in Halifax. She
lives independently; however, in order to do so, she needs to have an attendant
24-7, and  receives funding for her
attendants. Once she received her degree, a social worker told her: “Don’t
bother looking for a job because you’ll lose your attendant care funding”.
There’s clearly a huge flaw when policy prevents someone from working who is
able and wants to work. The money Penny would earn from a starting-position job
would not come near to matching the funding she requires to pay her attendants.
Perhaps if provincial policy allowed Penny to work and collect a good portion
of her funding, she could work her way up to a higher-paying job and eventually
not have to rely as much on funding. Simply put: the “if you work, you don’t
get funding for attendants” policy is completely absurd. Penny is brilliant,
and because of this policy, she literally can’t afford to work.

That was just one story. Many experiences were shared
between our families. It’s sad that these stories exist. It’s frustrating.
Hopefully policymakers can learn from these stories. Hopefully people’s
attitudes will change to assuming ability. This is why we’re doing what we’re
doing. We get media, I write my blogs, we tell the stories, and hope that lots
of people will listen or read.

We never tell all the stories. There are too many. Some
of the stories are dark and cannot be told for personal privacy or political
reasons. I’ve learned more in the last 2 months than I’ve learned in an entire
year at school. A lot of what I’ve heard is tough to swallow. It makes me sad. It
makes me angry. I hate that these things have happened. I hate that they are
happening. But I see hope. It’s easy to get caught up in all the dark, sad
negatives. There are lots of positives. The perseverance of many people, such
as Penny and her family, has been inspiring. Barbara Collier’s  (from ACCPC) Proposed Communication Bill of
Rights (http://www.accpc.ca/BillofRights.htm)
could make a significant difference in
the lives of many if put into practice. If Canada signs the Optional Protocol,
the U.N.  Convention on the Rights of
Persons with Disabilities (http://www.un.org/esa/socdev/enable/documents/tccoptprote.pdf
) could finally have some teeth in Canadian policy, ultimately improving lives
of Canadians who are differently abled.

That’s it for tonight. Tomorrow we’re on CTV Breakfast Television
bright and early.

-Skye

Day 63 – Augustine Cove, PE to Truro, NS – 180km

I woke up curious today. I knew that bikes weren’t
allowed on the Confederation Bridge between Prince Edward Island and New
Brunswick. However, when I was sitting in the RV, driving across the bridge to
the island, I didn’t see anything preventing cyclists. I didn’t see any “no
biking” signs either. It’s a one-way toll bridge. The toll is on the Prince
Edward Island side. The bridge had a wide paved shoulder and looked quite
pleasant to cycle on. So, were cyclists truly forbidden from pedaling across
the bridge?

I decided to test these waters.

Yes, it is absolutely forbidden to cycle on the PEI
Confederation Bridge.

I avoided the tolls that would have instantly stopped me.
I went through the village of Borden-Carleton and took a one-way street to the
highway, pedaling against the traffic on the shoulder. There are things a
cyclist can do, but shouldn’t do, that a car cannot do. Then I crossed the
road. Now I was past the tolls and the bridge was ahead of me. Perhaps it would
be an uneventful cycle. I pedaled up the first part of the bridge. I went by a
few construction workers. They didn’t seem to care…actually they did once they
noticed me 25 metres past them. They started shouting at me. Oh well, already
this far. I pedaled a couple kilometres into the bridge. Then I ran into more
construction. One lane was closed off. I was stopped, and very shortly the
bridge patrol came and picked me up, took me back to PEI to pay the shuttle
fee, and then I got shuttled over to New Brunswick. By this point, I just wanted
to get back on my bike.

On my bike again in New Brunswick looking back on the PEI Confederation Bridge

I had gotten on the road at about 8:15am only 15km away
from the bridge. It was now 10am. I pedaled. It was sunny. I took the Trans
Canada for about 20km, and then ended up on a quiet 2-lane country highway that
wound its way next to the sea. There was very little traffic, so it didn’t
matter that the road was narrow and had no shoulder. I was still feeling
foolish for wasting my own time, trying to cross a forbidden bridge. Oh well,
that was truly a once in a lifetime experience. I wouldn’t call it a bucket
list experience, but it’s something I’ll never forget. My mind was quite
occupied, so the kilometres stealthily rolled by.

Before I knew it, I ended up in this small seaside town
called Northport. A construction crew was putting in a new bridge. Often, when
there’s construction, a cyclist can go through a parking lot, go on a sidewalk,
or walk around if it’s really bad, and ultimately avoid a long detour. Since
they were putting in a bridge, I didn’t have a chance of avoiding the detour.
It was a 9.4 km detour of gravel road. There were some super coarse sections. I
even unclipped from my pedals on a couple occasions; just in case. I managed to
make it through on my slick tires without getting off my bike. The last part of
the detour was paved. However, this last paved section did a big-U. Wait a second…Aren’t I going back in the
direction I just came from?
I ended up on the other side of the bridge,
literally 300m from where I turned off onto the detour before the bridge. Dear construction detour: you’ve got to be
kidding me.

That darn detour

How to navigate coarse gravel with slick tires

It is what it is. The sun was still shining. After all
the rain and headwinds I had earlier in the trip, I’ll appreciate the moment
anytime I have good weather. I kept pedaling down and over small rolling hills
and quaint seaside villages.

A perfect day on a quiet seaside road. Jealous?

Tribulation number 3: I got a flat tire. Flat tires are
always annoying, but they aren’t a huge setback as long as you know how to fix
them and you have the spare tube and the pump to fill the spare tube. I possess
both.

I arrived at Belgravia Bed and Breakfast in Truro a
little after 5pm. I was feeling quite tired after the unexpected challenges of
the ride. It was quite a rewarding ride to finish. I sat out front for a while
unsure of what to do. Gail hadn’t arrived in the support vehicle (with the
food). I was supposed to meet one and maybe two people at the B&B sometime
between 5 and 6. I was also hungry.

Janice Archer from the Holland Bloorview Centre in
Toronto had flown out to ride with me from Truro to Halifax. She had flown into
Halifax earlier in the day and then took the bus to Truro. She was staying at
the Belgravia B&B in Truro, and kindly offered my mom and I to come stay
too.

Janice came out front and found me. We went to grab subs
for dinner.  By the time Janice and I got
back from dinner, my mom had arrived at the Belgravia. Janice, Gail and I sat
in our RV talking and joking about the goofy pictures on the side of our rental
vehicle.

Janice’s bike was still disassembled on D’Arcy and Anne’s
back porch (the kind owners of Belgravia). We took care of that bike. I have to
give D’Arcy and Anne credit. They are two of the very few people on this trip
who haven’t hesitated to shake my hands covered in grease and bike grime.

After a long hot shower (and a spacious shower, not a
typical crouched power shower in the RV), it was amazing to fall back on a
comfy bed. Thank you D’Arcy and Anne for the wonderful room and your excellent
hospitality! Thank you Janice for providing the room for me! It was wonderful
to have some creature comforts which I have missed.

-Skye

Day 61 and 62 – Rest days/Catch-up Days on the Island

Day 61

We stayed in a quaint campground at Campbell Cove, which is about 15km away from where I finished cycling at East Point, P.E.I., yesterday.  I would have loved to have spent a couple days at this spot, looking out onto the Atlantic from the north shore of the island. Our camp spot was about 25m from the water.

Normally I don’t like waking up early after cycling close to 8 hours the night before, but on this morning I didn’t mind. We were driving into Charlottetown to meet a family, or at least three quarters of a family; 13-year-old Brett, his older sister Jade, and their mom, Lynn. Brett speaks with a communication device operated by a head switch. If he’s asked a closed question that can be answered with a yes or a no, Brett can communicate quickly by either looking up to his side to say ‘yes’, or by shaking his head to say ‘no’.

My mom and I met Brett, Jade, and Lynn at the Merchant Pub in downtown Charlottetown at 9:30am, where Lynn works. We met before opening, so it was quiet. One of the first things Brett did when I met was he showed me his ‘yes’ and his ‘no’. Jade asked Brett, “can you show your ‘yes’”…Brett lifted his head so he was looking up to the ceiling on his side… “and show your ‘no’”… Brett shook his head. I appreciated this. My brother blinks for yes, so I’m familiar with phrasing questions to be answered by a yes or a no. However, without this introduction, it would have taken me a while to realize that Brett says yes by looking up to his side. If you ever meet someone who doesn’t have speech, and you feel unsure of how to communicate with them, ask them: “if you have a ‘yes’, could you please show me”.  Ask the same for no. Look to see what body parts they are consistently moving.

There were several things that I respected about this family. I would say some of these things astounded me.

For starters, Brett has an amazing ability to tell you what day of the week any day of the year is. He told me my birthday, which was on the 3rd of July, fell on a Sunday. He didn’t hesitate. He just knew. Ok, that was pretty fast Brett, but that was still quite recent. Lynn then asked my mom what her birthday was. “January 27,” she replied. Lynn turned to Brett: “Sunday? Monday? Tuesday?…” Brett kept his head fairly still, giving the slightest shake. “Wednesday? Thursday?” Brett smiled and looked up to his side. Thursday. He was right.

Two: Jade and Brett have a sweet relationship. Although Jade has moved out and there’s an age gap between them, they seem to gain energy from each other like best friends do. There’s an instinctive smoothness to their communication.

Three: I have a lot of respect for any parent of a child who has special needs, who strives for inclusion and their child’s independence. I admire Lynn’s thoroughness of thinking through decisions that Brett and the family have had to make. At one point, professionals had proposed the idea of Brett using eye gazing technology to spell. I’ve met a couple people who use this technology. It is remarkable. However what I did not consider when these people were spelling with their eyes in front of me, was the lack of human connection. The screen which tracks the pupil’s movement is inches away from the face. The person using the device can’t look away in the midst of a sentence; otherwise the machine will have to recalibrate to track the pupil again. Imagine having a screen inches from your face. You wouldn’t be able to see your teacher, or look up when you’re talking to someone. I understand why Brett and his family decided not to go with eye gazing. I’m surprised that I haven’t heard anyone talk about this before. Eye gazing is brilliant technology (which I’m sure is great for some people), and someone who becomes proficient and practised can use it efficiently; however the lack of human connection is a huge trade-off.

Four: Jade raised over a thousand dollars to go towards Kilometres for Communication. There was a fundraising breakfast, a coat check at a college dance (the one Brett went to), and a free concert at the where the performers spoke about alternative communication in between songs. From what I gather, at the fundraising breakfast, all the seats had tips about communicating with people who speak in other ways. An educational breakfast is a better way of putting it. Jade, I am so thankful for the initiative you took and the effort you would have had to put into making those events happen. It takes a heap of charisma and creativity to get people on board to make such events a success.

Five: I was totally shocked to learn that Brett receives his communication services from the Holland Bloorview Centre in Toronto, where Kerr (my brother), used to receive his services from. Once a week Brett and Lynn Skype with staff at Bloorview (including Laurel Robinson, who initiated the Kilometres for Communication Holland Bloorview event) who give support and programming assistance. Brett ended up receiving his services from Holland Bloorview because what Brett needed wasn’t offered by any program or centre in PEI. The island only has a population of 141,000 people, so it’s not a huge surprise that its AAC services are dismal. Using his yes and no, Brett wrote a letter with his family to the folks in Toronto at Holland Bloorview, explaining his situation and requesting their help. They were touched by his letter, and approved his request. Brett was very lucky to receive this out-of-province assistance. There are many people who live in areas with little or no services, who aren’t as fortunate.

Jade had to leave our breakfast to go to work. Brett, Lynn, my mom and I had a little walk around downtown Charlottetown. A lot of people seemed to know Lynn and Brett. I couldn’t tell if it was the friendliness of the area, or if I was strolling with popular people. Perhaps it was a bit of both. We ended up back at the RV, which my mom and I left parked at the Charlottetown Yacht Club. Brett thought it was really cool.

I’ve mentioned this many times before. Our RV is a rental. It is covered in goofy photos. I despise these photos, especially the children peering curiously out of a fake window. Brett thought it was a riot. I think he found it amusing that we were driving around in that thing.

Brett and I in front of the monster

We got a photo together in front of the gas-guzzling beast.

The rest of the day was driving to the campground near the Confederation Bridge and working to catch up on about 9 days of blogs.

Day 62

It was a hot muggy day. I wouldn’t have minded cycling today, but there was still tons to catch up on. I slept in; sort of. My tent got too hot to stay in at about 10am. That’s an ok sleep considering I got to bed at 3am.

I spent the rest of the day uploading photos, editing, doing emails, and reorganizing and tidying the RV after 2 weeks of a hectic schedule.

In the evening, I went for a walk when the tide was low. I saw lots snails and crabs. I had 10 minutes of amusement watching them. I didn’t go too far out. Every time I took a step, the clay suctioned my flip flop, so the walking was slow.

This was the second of two rest days in a row after getting ahead of schedule. I’ll be in Truro tomorrow and Halifax the day after. I don’t have any flexibility in my schedule about when I have to be where, so I cashed in my rest days. The extra rest was much needed. Most importantly, I’m finally on top of my blogs.

More to come! The next three days will be quite eventful.

-Skye

Day 58 – Oromocto to Shediac, NB – 188km

I wasn’t looking forward to this day. There was a long distance. There were lots of hills. Headwinds were in the forecast. All of these turned out to be realities. I was on the Trans Canada so I had a nice wide paved shoulder the whole day, which really does help. When I ride on a road with a narrow bumpy shoulder or no shoulder, I have to be intensely concentrated. When I have 2 metres of smooth pavement, it’s a much more relaxed ride, and my mind can wander to help pass time.

My goal for today was to reach the Atlantic Ocean. That excitement was my drive for the day. I only stopped to meet the support vehicle once today, at the half-way point. Earlier in the trip, I liked meeting the support vehicle every hour or two. I accepted that I had a long way to go, and there was no point in rushing. At this point in my trip, I’m tired. I’m not tired as in, “my legs are sore,” or “my mind isn’t functioning.” I’m tired as in “I don’t feel like getting up. I just want to sit here.” I’m feeling worn out. If I stop to refill my water bottles at the support vehicle, and I sit down, it turns into a half-hour rest. I’m filling up 4 water bottles at a time (2 on the bike, 2 in my jersey’s pouches) and packing lots of nuts and jerky so I can drink and eat without stopping. It’s not hard to stay on the bike. It’s hard to get myself on the bike.

Today was pretty much all bikes—not much else happened. To be precise, other than sleeping, eating, washroom, talking to my mom, and killing a few mosquitoes, nothing happened. I feel like I should be celebrating (making it to the Atlantic), but I don’t feel in the mood at all. I know that I have about 1,500km left to go. I also feel like something is missing—the rest of my family. I was really hoping that my brother and my dad would make it to the Atlantic with me. We tried. I suppose it’s a good thing they turned around. On their way back to Toronto, the van had some mechanical issues which would be very difficult to deal with had they occurred out here in the Maritimes…far away from our trusted garage.

-Skye

Day 57 – Woodstock to Oromocto, NB – 122km

I spent the morning replacing parts on my bike. I put a new rear tire on as well as a new drive train. This is my third drive train. I’ve gotten about 3,000km out of each one. It’s an uncommon sight to see someone taking a bike apart in a campground. I turned our picnic table into my work bench. I had my portable bike stand set up. At one point, one of our camping neighbours, Murray, curiously asked me about my bike and what I was doing. I told him a bit about Kilometres for Communication, but I didn’t give him the whole spiel. I try not to overwhelm people with information.

A little while later, Murray’s wife, Linda, walked over and congratulated us on our efforts. She had heard from Murray what we were doing. While we were talking about Kilometres for Communication, another person in the campground, Brenda, one of Linda and Murray’s friends, arrived. We learned that there are many members of one side of her family who either have died from ALS, or who have been diagnosed with ALS—also a very scary scenario for those young family members who haven’t been diagnosed. Many people who have ALS lose their speech before they die, sometimes years before. It’s critical for them to retain a way to effectively communicate. Other parts of their bodies (hands and fingers) may not function properly, so simple forms like writing and typing may not work. This is where eye-gazing, head switches and various other forms of accessing a communication device are used.

Anyhow, my mom and I had a nice conversation with these people at the campground. People often seem a little impatient when we say what our campaign is about (Augmentative and Alternative Communication is quite the mouthful and an overwhelming earful), but after a brief explanation, most people totally get it, and become quite engaged with what we’re talking about.

I got on the road quite late—around 1pm. The sun was shining and the wind was at my back. There were lots of hills, so the wind wasn’t nearly as effective as I would have liked, but I can’t complain. After cycling over 230km yesterday, I was relieved and sore to finish after just 120km today. When I finished, there were some perfect strawberries and tasty fresh picked peas from a produce stand that Linda had recommended to my mom. Thanks Linda! Thanks Mom!

We ended up driving by a baseball diamond on our way to the Provincial Park we were planning on staying at. The baseball diamond was surrounded by forest and there was a nice big grassy parking lot. It was a strange place for a baseball diamond; in the middle of a forest. Free is good. That’s where we stayed. Right next to where we were parked, there was a huge burnt spot of plastic and a metal frame. A nearby tree was scorched about 7 feet high. There were leaves on the tree, but they were all brown or yellow. The tree was dead. The fire had happened recently, since the tree had its leaves for the season. We could make out the word “Wash” on the melted banner. There was a perfectly good, but soggy towel on the burnt ground. It all seemed quite surreal; even eerie. Sometimes when I stay in remote, rural places that aren’t so scenic, it doesn’t take much to get my mind thinking scary thoughts. I have to admit, my eyes were scanning that large burnt area for traces of human remains.

The mysterious burnt area

Good night. I’m tired enough that creepy scenes will not be keeping me awake. Any murderous psychopaths trying to create a nightmare will be turned into a sticky goof covered in chrysanthemums in my surreal dream…and ferrets, deer, and Wiener-dogs will be chasing this villain, trying to eat the flowers.

-Skye

Day 56 – Saint Marc-du-Lac-Long, PQ to Woodstock, NB – 236km

We stayed the night in Edmundston, New Brunswick. My day
started at 6 in the morning. My brother and Mia were sleeping in the van. My
dad and I got in the van at quarter after 6 and began to drive the 50km back to
the where I had stopped the previous day—in the middle of nowhere. Kerr and Mia
snoozed as we re-entered Quebec. I ate bread, salami, and fruit while I
listened to some pump-up music. I didn’t feel too pumped.

 

I got let off where I had stopped. It was a cool morning
with light clouds. The mist coming off the Appalachian hills was dense. My dad,
Mia, and Kerr drove back to the campsite where we were staying after they let
me off. I cycled 57km back to our site, which was where I was supposed to
arrive the day before, but didn’t due to thunderstorms.

 

I was at the campsite again around 9am. I ate my second
breakfast—fried eggs, granola, more fruit, and some bread. Sadly, today Kerr,
my dad, and Mia were turning around to go back home. This trip turned out to be
quite the test of endurance for my brother and all of us. I was sorting through
stuff in our storage compartment, seeing what was theirs to take back, and what
was ours to keep for the remainder of the journey. That made me sad. I felt
mopey.

 

There have been 5 of us on the road since Tobermory,
Ontario: Kerr, Mia (Kerr’s assistant), Burns (my dad), Gail (my mom), and me.
My mom and I are quite used to the intense schedule of the campaign, and the
stress, but I think it was a shock to the rest of the group. As well, each
night, someone has had to sleep on the floor of the van (with some foam) or in
the front passenger seat. In addition, both Kerr and I have had our days in the
last week where we have had lousy health. This has also been the busiest 2
weeks of the entire journey. I missed our event in Ottawa and Kerr missed our
Montreal events. Anyways, our crew was feeling quite worn out, so my brother,
Mia, and my dad decided they had to turn around. I understand, but I’m sad they
had to leave after barely being with them for two weeks. Now it will be another
month until I see them.

 

One of the most difficult parts of this trip for me is
the loneliness. I’m meeting lots of amazing people, and seeing beautiful
scenery, but I miss my friends and family. My dad cycled with me for several
kilometres away from the campground, but then he had to turn back to continue
packing up to get on the road. I know he would love to do some bike touring
again if he had the lifestyle that allowed him to do it. I know my brother
would love to ride with me and finish at the Atlantic. Sadly, they’re going to
be living the rest of this trip vicariously through my helmet cam—but that only
captures the smallest fragment of this trip’s whole, and often I don’t post
helmet cam footage for weeks due to slow internet.

 

Anyhow, this was a sad morning. I’m counting down the
days again. Melisa, Jeff, Timo, and Sari came to our campsite to say good bye
and have breakfast with us. So many good byes were said on this morning. The
last 2 weeks I’ve had lots of company, my family s been around, and I’ve gotten
to see many of my friends. Now suddenly, I’m back on the road, by myself again.
There’s a part of me that looks forward to it, that likes the quiet time to think
and go my own pace. But I know the dominant me doesn’t want to be alone. My
nostalgia and sadness are strong today. Tomorrow they’ll be a little weaker.
Eventually, the feelings will numb, I’ll become distracted by many other
things, and before I know it, I’ll be back at home.

 

I took a windy, narrow road that can hardly be called a
highway down from Grand Falls to Woodstock. Highway 105 follows the Grand
River. Near the beginning of the highway, the road is high up on a plateau next
to brown cliffs that dive into the river. The cliffs dwindle down to steep
shores. There were many hills, and the road was bumpy. I would have had a more
direct, faster, and safer route on the wide, smooth paved shoulder of the Trans
Canada, but for one day, it was worth it to take this route for the scenery. This
is also the route to take if you want to see covered bridges and small town
charm.

 

To anyone planning a trip: there was a beautiful, free
place to camp about 25km north of Andover-Perth at a picnic area on a Lake
(near the junction of Highway 105 with another small highway).

 

In the end, I pedaled 236km between 6am and 7pm. I had a
paced day with many breaks, so it didn’t seem too bad. The scenery was great,
and I had lots to think about (distracting me from the anguish that the many
steep hills could provide). I did somehow manage to do that day without padded
bike shorts. All my padded shorts were dirty or wet. I ended up aggravating
some of my saddle sores from earlier in the trip.

 

I’m back on schedule. It’s been a struggle recently just
to keep up my energy through the days. I’m way behind on blogs. I’ve been
making notes and writing some of them each day. I’m hoping that over the next
several days without events, I’ll be able to catch up.

 

-Skye

Day 55 – Saint André to Saint Marc-du-Lac-Long, PQ – 95km

I woke up to a gentle breeze flowing through my tent.
There wasn’t a cloud in the sky. I had my main rain flap rolled up to the side,
so I could see outside my tent quite well. I had pitched my tent at the edge of
a cliff overlooking the St. Lawrence River. On the other side of the river, the
north shore, the rolling mountains/hills of the Laurentians lapsed into each
other in a haze. It was one of those moments that I wanted to cling onto. I
wanted to lie there,–in that moment—for a whole day.

But I didn’t. I actually woke up at 7am, turned the
laptop on, and started trying to catch up on blogs from several previous days.
I made some progress, but nothing got posted. Time crept up on me. It was 9am
before I knew it. Jeff, a family friend cycling with me, was all dressed to hit
the road. He was eager to get an early start. After eating and packing up the
site we were on the road around 10:30am. It was now somewhat cloudy.

Jeff and I before embarking on our ride

No, we're not flirting. About to set off from Saint André

The first 20km would turn out to be a tease—flat, scenic,
and fast. We had a tailwind. Then we turned onto Highway 289. We climbed for
about 10km, leaving the St. Lawrence River shores for higher grounds inland.
Then there were hills. Jeff plays tennis. He doesn’t bike too much. He did
great on the 175km ride yesterday (a bit sore though), but he began to struggle
with the steep and frequent climbs. The road was extremely bumpy, there was no
shoulder, and the odd time there was a flat stretch, a cross head wind halted any
momentum. At 35-40km, after about 210 kilometres of riding in 2 days, Jeff
decided to take a rest with the intention of joining me later in the ride.

Leaving the campground

Me following Jeff through a cute and tidy riverside Quebec village

The flat St. Lawrence River scenery early in the day

A change in scenery as we travel inland (and into the hills) towards New Brunswick

Following 289 next to the Maine-Quebec border

I wasn’t having much fun with the hills. The Appalachians
come up into this area, so it was rolling hills, except the hills were steep
and long, so it wasn’t possible to carry the momentum from one downhill to the
crest of the next hill. I cycled another 20km before stopping at a side-of-the-road
food stand, a Caissez Croute. I had stated a day earlier that I wanted to stop
at a Caisse-Croute for some authentic Quebec poutine. Eventually, everyone in
our crew except my mom ended up stopping for lunch at this tiny restaurant.
Kerr, Mia, my dad, Melisa, Jeff, Sari, Timo, and our chocolate lab sat on the
roadside patio. I thought the poutine was ok. It wasn’t special. I’m sure there
is some really unique poutine out there that would astound me, but it is yet to
be discovered; perhaps on the drive back.

By the end of lunch, the day was cloudy and humid. Some
parts of the sky were quite dark. There were some freckles of blue sky that fed
my optimism. I kept pedaling. As I cycled the bumpy, windy Highway 289 (that
goes along the Maine-Quebec border), the clouds became dark. There was rain—a
downpour. I kept pedaling. I was soaked. Have you ever been in such discomfort
that your discomfort has fuelled you, arousing some intensity from deep within?
That happened to me in that last 20km of the day (and last 20km of Quebec) in
torrential rain. There were patches where it was raining so hard that it was
hurting my bare skin. Inevitably there was the thunder. It started to get
louder and then a flash of lightning off in the distance—time to get off the
bike. I leaned my bike up against the metal highway guard rail, walked a little
ways away, and crouched in some grass beside the road. I did this for about 10
minutes. It wasn’t so bad. I actually found it somewhat meditative. I know.
This surprised me too. I’ll get a video of this posted when I’m back in Toronto.

The support vehicle came by. I got inside with my bike. I
decided to wait for the storm to let up. The rain eased off, but the thunder and
occasional flashes of lightning did not. An hour passed; still thunder and
lightning. Another half-hour passed, I dozed off. I awakened. It was almost
6pm. I still had another 50km to bike. There was still a storm. Intense rain is
negotiable, lightning I don’t deal with. I called it a day just before the New
Brunswick border.  I’ll be back early
tomorrow morning to start where I stopped. We’ve already arranged a campsite
50km down the road in Edmundston, so that’s where we’ll be tonight.

-Skye

Day 50 – Ottawa, ON to Oka, PQ – 180km

My day began at 2am. I woke up with a sore throat. If you
want the details, I’ll tell you. If you don’t, you’re welcome to skip ahead to
the next paragraph. My throat was foaming with mucus and I could hardly
breathe. I was unzipping my tent every 2 minutes to spit. After getting fed-up
with that, I left the tent, and went into the RV to get some honey lemon tea.
That helped a bit, but I never really got back to sleep after that. I half
slept from 3 to 6am. We had to wake up a little after 6am anyways for an event
in Ottawa at the Ottawa Children’s Treatment Centre which began at 8:30am. We
had to pack up and beat the morning rush hour into the city so everyone was
waking up as I was still struggling to get some sleep. I got up, deciding that
I would try to tough the day out.

After doing a few laps around the side streets and
parking lots of the Ottawa Hospital General Campus, we parked. At this moment,
my mind was turning off, I could hardly speak, and I decided that I couldn’t
rationally walk into that building and engage myself in conversation for the
next hour or 2. I slept in the RV, while the rest of the Kilometres crew went
inside. I heard a little bit about the event—it sounded great—but it’s just not
the same not being present. My apologies Ottawa, I really wanted to attend, and
I tried, but my body wouldn’t let me.

The good folks in Ottawa at the fundraising breakfast who I never got to meet

 

Friends of ours who drove from Toronto to Ottawa for the fundraising breakfast

 

The 2 hours of sleep in the hospital parking lot was my
saviour. When the crew returned from the event, they had a platter of fruit,
croissants, and waffles. The good people inside who I never had the pleasure of
meeting were sweet enough to send the sick stranger sleeping in their parking
lot a bundle of tastiness.

After making a quick meal of the platter, I dressed up
and got on my bike. I took a bike trail from the centre which is a bit outside
of the downtown area, down to the river front a bit east of Rideau Hall, on the
Rockcliffe Parkway. The sun was shining, the trail was great, but I just didn’t
feel like biking today. We were going to meet Will and his brother Zachary, and
their mother, Genia, at a scenic pullover just off the Parkway, near the Ottawa
River. As I was cruising through Ottawa, keeping an eye on time so as not to be
late, yet trying to pace myself to not wear my body out, my bike started making
a noise (the most common line that bike mechanics hear). About a minute later,
the noise escalated to a loud clinking, “something is broken, stop now!” noise.
So I did. The bolts for my smallest chain ring in the front had all come out. I
had a chain ring bouncing around against the frame of my bike, trapped by the
outer chain rings which were still bolted into place. Of the 5 bolts holding
that piece of metal in place, only 1 need not be cranked down, and the rest of
the bolts can loosen off over time. I suppose that after several hundred
kilometres since Toronto, that’s exactly what happened. I was in no mood for
this. Luckily I only had a couple kilometres to go. I made quite the racket and
other cyclists looked at me in horror, disgust, and confusion as I went by them
clinking and clanking. Ottawa is a fine, royal place of smooth bike paths,
peacefulness, serious cyclists, and properly tuned bikes to whiz next to the
manicured lawns and watered flower beds. I didn’t fit the scene.

My day would get better. I met Will and his brother
Zachary. Their mother, Genia contacted us because she was frustrated with lack
of service and support that she could get for her young son, Will, who doesn’t
have speech due to a disability. Our family can relate to that feeling of
helplessness—especially Kerr and my mom. Many families don’t necessarily have

an issue obtaining the actual technology, they need the expertise and experience
of someone who can assess, recommend, and foster progression of their family
member’s communication. There are many things that we find change from region
to region as we travel across the country. One thing that doesn’t seem to
change is that there’s a lack of accessible professionals to help parents such
as Genia move to the next step. Every parent wants their child to reach their
full potential, but there’s a sense of helplessness when time passes and day
after day, week after week, month after month, the same question persists—what’s
the next step? What’s the next step? What can my child do that we’re not
enabling him/her to do? What is his or her potential? Zach, Will’s brother (who
I think is 10? Correct me if I’m wrong), raised a considerable amount for
Kilometres for Communication. After meeting Zach, I’m not surprised. He’s has a
warm charismatic character, and he’s full of energy and friendliness. Gail,
Genia, Zach, Will, Kerr, and I went for a bike ride near the Ottawa River. The
path we wanted to follow disappeared and we ended up cycling though the Ottawa
neighbourhood which is home to many of the ambassadors from other countries.
There were lots of flags, extensive properties, striking architecture, and
life-saving valued cars. We cycled 10km, but the real purpose of the ride was
to talk and for our families to meet.

Myself, as a brother of someone who lives with complex
challenges (Kerr is cortically visually impaired, has absent seizures, and has cerebral
palsy which prevents him from voluntarily controlling most of the muscles in
his body), I find it comforting to meet others siblings who are in a similar
situation. It’s the comfort in knowing that they know too, what the struggles
are. Genia and Will, I know that you will reach the next step—whether you
receive the support that you’ve been searching for, or if you stumble across it
yourselves. Zach, in the last couple years I’ve realized that Kerr’s been the
most influential teacher in my life. I hope that learning the world next to
Will gives you a profound and sensitive perspective that most people won’t ever
get to experience. I’m glad I met your family, stay in touch.

Will, Zach, Skye, Kerr--Brothers in arms

After saying good bye, I cycled out of Ottawa on bike
paths, along the old Highway 17, which was quite busy and bumpy, and then on
country roads. The country roads were smooth and beautiful, but they added some
distance—especially the construction detour. The sun was shining, the wind was
a light cross wind, and it was a perfect day to cycle. Nonetheless, I didn’t
feel like cycling at all. But I suppose I’m lucky the weather was what it was
because I would have probably called it a day before my final destination if it
rained or gusted wind against me on my couple hours of sleep day.

At Hawkesbury, I left Ontario, crossing the Ottawa River
on a bridge, entering Quebec. For 60km, I followed a beautiful road with a
paved shoulder that followed the shores of the river. Just a little north of
Montreal, near a town called Oka (there a stand-off here many years ago that
made national and international news), there was a 15km strip where every 2nd
or 3rd property was a cigarette stand. These stands had flashing
lights, signs that were almost on the road, huge banners, and sculptures of
cigarettes. It was quite sad to see that the culture and economy of an area was
so heavily centered on something that’s bad for our health. What amazed me was
that all these places co-existed, and by the looks of it, seem to be turning a
profit in order to afford cigarette sculptures and elaborate flashing lights. This
would indicate that despite the 100 shacks in the 15km stretch, the market wasn’t
saturated. That’s a lot of people taking a lot for granted.

At the end of this long day, I arrived in Oka National
Park where we had reserved a spot to camp. We found out that dogs weren’t
allowed in the park. This messed up all of our arrangements. My dad had to
sleep outside the park in the nearby town of Oka with the dog, in the van. Oh
my! What a day.

-Skye