Striding for Inclusion

It’s been a busy week, but alas, as promised, here’s a blog post on running a marathon in a French Maid costume.

15km in. Still loving each stride.

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Some of you know about marathon running. However, a vast majority of you think I’m a strange, strange person. (To gain greater context to this post, you can read Kerr’s (my brother) and my story: http://kilometresforcommunication.com/stories/ )

What possesses me to run marathons? Running is mostly mental. If you’re running to the limits of your ability, there will always be a point in the run when you ask yourself: “why am I doing this?” If you aren’t able to answer this question, your run ends there. For the first 30km I project how lucky I am to be able to move one foot in front of the other, smell, see and feel the world as I do. I would be taking the safety, security and luck of my life for granted by not focusing on the beauty of striding in the moment. The minor discomfort only exists if I perceive and focus on it. I’m running because I can.

The final 10-12km is different. The pain becomes loud and rude. More powerful motivation is needed. I project the people I’ve met who communicate in different ways and their stories, my brother’s story, and all the emotions, frustrations, and memories associated with the misunderstandings and disconnect I’ve witnessed my brother endure. If these Canadians who speak with AAC and my brother can be so resilient, strong, and triumphant; so can I. This is a numbing reminder to my perception that my discomfort is temporary and escapable. I’m running to show my commitment. I’m running to create awareness. My knee doesn’t want to lift. I’m running because I can. My calves are seizing. I’m running because this is the least I can do. I’m running to inspire. Why am I doing this? Can’t I stop? I’m running because I can do something simple that makes a difference. My stomach is going to let loose. I’m running because I love someone. I’m running because I want everyone to know how to include people of all abilities.

Cya

What possessed me to run in a French Maid costume? I would say it comes down to having a powerful motivator in my life (my brother) and a few really good friends with a sense of humour. If I’m going to run for 42km, I’m going to do it for a cause. I better kill two birds with one stone; otherwise, it just wouldn’t seem worth it. Running is a mental battle. It’s easier to run 42km through woods distracted by scenery and the challenge of rocks and roots than it is to stay concentrated and calm kilometres after kilometre on pavement running next to the same people. Wearing a costume helps with that mental battle. People start laughing and cheering. 42km becomes less lonely.

I ran the race in 3 hours, 22 minutes, 30 seconds. I had a bizarre day before the race. My eating was not on schedule, and I didn’t eat my dinner until after 10pm on Saturday night—although I had been carb grazing all day. Shortly after eating, I went to bed. Needless to say, I didn’t digest my meal as I should have. I woke up at 4:30am on Sunday to eat a good breakfast, digest it properly, and have ample unstressed time to change into my French Maid costume. Around the 23km mark, there was no bargaining with my stomach. Sweaty, and in full race gear, I abandoned the sub-3hr pack I was running with and dashed into a Tim Horton’s. I ran through the restaurant, efficiently found the washroom. A couple minutes later I ran back through the restaurant again, back onto the race course, and tried to find my rhythm again with a different pack of runners. Those employees and customers in that Tim Horton’s saw a sight they probably won’t forget for a long time.

How do you work up to running a marathon and prepare for it?

It’s getting late and that’s a whole other blog post. If people are interested, I’ll write a post on preparation.

I’ve saved the most important for last! The clear cut reason I ran a marathon in costume was to create awareness for the different ways people communicate. If you haven’t already, please read and share the following excerpt from my last blog post:

I think that isolation and systemic discrimination can stem from uncertainty. Below are some key points about how to be an agent of inclusion, and how to properly interact with people who communicate differently.

* Be curious. Ask how the person communicates. Give the individual time to respond. Observe what body parts he/she controls, if the person has a communication device, a letter board, or blinks. There are many forms of communication. Engage. Observe. Keep an open mind. Be patient. Be enriched.

* “Ask one question at a time and wait for a reply.” (ACCPC, 2009)

* “Talk directly to the individual, not to the person who may be accompanying him/her.” (ACCPC, 2009)

* Watch for body movement—someone may operate a communication device using his or her head, knee, toes, etc. Don’t walk away if you notice the person using their computer. It may take him/her a minute to assemble their sentence.

* “Speak naturally and clearly, using your normal tone, volume and rate.” (ACCPC, 2009)

* Try to establish a yes and a no—“show me your ‘yes’”. Observe how the person responds.

* “Do not speak about the person or refer to the person in the third person when in his/her presence.” (ACCPC, 2009)

* Always assume ability.

A marathon is unbearable if it’s lonely. So is life. We all run our own races, but we all need some help and companionship to get to the finish line.

42km to inclusion; if only it were that easy.

A disability is only a disability when a person is hindered by his or her surrounding environment. I want as many people as possible to know how to communicate with people who speak with Augmentative and Alternative Communication (AAC). A disability can be a gift just as much as it can be disabling. On Sunday, May 6, 2012, I’ll be running another marathon…perhaps in a costume. Likely in a costume. Almost certainly in a costume. My purpose: to raise awareness. I want to get as many people as possible reading the points below in this post, and learning about how to properly communicate with someone who has a communication disability.

I think that isolation and systemic discrimination can stem from uncertainty. Below are some key points about how to be an agent of inclusion, and how to properly interact with people who communicate differently.

  • Be curious. Ask how the person communicates. Give the individual time to respond. Observe what body parts he/she controls, if the person has a communication device, a letter board, or blinks. There are many forms of communication. Engage. Observe. Keep an open mind. Be patient. Be enriched.
  • “Ask one question at a time and wait for a reply.” (ACCPC, 2009)
  • “Talk directly to the individual, not to the person who may be accompanying him/her.” (ACCPC, 2009)
  • Watch for body movement—someone may operate a communication device using his or her head, knee, toes, etc. Don’t walk away if you notice the person using their computer. It may take him/her a minute to assemble their sentence.
  • “Speak naturally and clearly, using your normal tone, volume and rate.” (ACCPC, 2009)
  • Try to establish a yes and a no—“show me your ‘yes’”. Observe how the person responds.
  • “Do not speak about the person or refer to the person in the third person when in his/her presence.” (ACCPC, 2009)
  • Always assume ability.

I was planning to run this race with a friend named Tien (he communicates using AAC). One thing you need to know about Tien and I: we are divers, full of ambition, and quite determined to make the unrealistic and unexpected work. It didn’t work out this time. The logistics of planning our run together required more planning than the time we had…we came up with the idea and tried to run with it last Sunday. Tien won’t be running with me this Sunday, but expect our collaboration in the future.

Here’s what Tien would like people to hear:

“As being one of hundreds of thousands of AAC users, I would like to see the people in our communities, to provide us accessibility in communication, transportation and education, to try and take time to understand us when we ask for it, and to treat us like any other able bodied individuals. We may, perhaps, look different, act differently and communicate differently, but most of us can think, learn, and interact with the world like ordinary citizens. We need people to realize everyone has a voice of their own, and so do we!” (Hoang, 2012)

To hear more stories and voices of Canadians who speak with AAC, please visit: http://kilometresforcommunication.com/stories/

Here’s a picture of the last race’s costume:

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Photo credit: Jeff Cheah. Click on the photo to see a non-distorted full version. 

Curious about what this race’s costume will look like?

  • Have Facebook? Go on the Kilometres for Communication Facebook page and share the status posted on May 5, 2012 or share the link to this blog on your profile.
  • Have Twitter? Tweet this post.
  • Feel like sending some emails? Please do…with the link to this post. 🙂

Route of the race and timing will be posted later tomorrow on the KM4C Facebook page for anyone eager to witness in person.

I hope that more awareness will be raised, some of you will get a laugh, and that there will be more agents of inclusion making the world a better place. Thanks for reading, and please pass this on!

-Skye

Works Cited

ACCPC. (2009). Communication Access for People Who Have Communication Disabilities. In B. Collier. Queen’s Printer for Ontario.

Hoang, T. N. (2012, May 2). (S. Wattie, Interviewer)

Augmentative and Alternative Communication Community Partnerships-Canada: http://www.accpc.ca/

The View From Here

Skye and Kerr at Rick Hansen's 25th Anniversary Relay

It feels so good to be home, and to be reunited with Kerr and Burns. For a short time it was wonderful to have the whole family together before Skye went back to the University of Waterloo in early September. We’re looking forward to his return for the holidays.

I have committed to pacing myself. The three months on the road were wonderful, but demanding and exhausting, and they followed two years of preparation for Kilometres for Communication, in addition to a hectic work schedule, our human rights case, and the ongoing challenges that sleep deprivation, Kerr’s ongoing seizures, and the sudden unavailability of attendant care presented.

After months in an RV, home feels luxurious with interior space to move around in, with water we can drink out of the faucet, with phones and internet that are predictable, without worries about how full the gray water and black water tanks are, and how empty the propane tank is. Home, Sweet Home!

The three months on the road have given us plenty to reflect upon. Of all the experiences we had, I’m not exactly sure why I want to start with one in Nova Scotia when we were parked in a campsite with a beautiful view of distant ocean. I was looking out at the water as I worked at the computer when a big pick-up truck backed up from its spot a few campsites over and parked directly across the road from our RV, completely blocking our view. The pick-up truck owner then proceeded to build a fire in close proximity to the spot where his truck originally had been parked, and sprawled out his legs as he comfortably lounged in a lawn chair that was now parked where his truck had been. He obviously was enjoying the view which Skye and I could no longer see.

I meandered over to this sprawling, lounging camper, smiled, said a friendly hello, and asked him if he would mind moving his pick-up. He responded in an equally friendly way, and said with genuine surprise, “Oh, it never occurred to me that my truck might be blocking someone’s view. Sure, I’ll move it!” Hmmm…it had never occurred to me that it might not have occurred to him that his truck was blocking our view.

I’ve been thinking about how often I’ve been surprised by what has never occurred to people about Kerr: that he has feelings, and they can be hurt; that he wants to be accepted, understood, engaged and respected (like anyone else); that he needs to be addressed directly; that he is extremely sensitive to people’s feelings and when someone who meets him or is getting to know him feels uncomfortable, that Kerr responds with equal or greater discomfort; and when that happens, his most common coping strategy is to withdraw. I have come to the conclusion that sometimes—not always—people’s exclusion of Kerr arises purely out of a lack of awareness and experience.

I keep reminding myself of what I didn’t know before Kerr came into my life. What is obvious to me in 2011, once was frustrating and mysterious. Now that Kerr has AAC (augmentative and alternative communication), he is able to do a great job of informing and educating people who take the time to get to know him. There are many situations, though, where there is so much going on—conversation, ambient sound, other environmental factors—that Kerr becomes overwhelmed and withdrawn. It is helpful and wonderful when people are comfortable talking to Kerr, and they are sincerely engaged in conversation with him. I realize, though, that this can be challenging when people just don’t know how. Often, when I’ve tried to make suggestions, it creates social awkwardness. At other times, the conversation is flowing, Kerr is overwhelmed, withdrawn—and excluded. I always feel badly when this happens, and I feel even worse if I haven’t done anything to assist him and to assist others in understanding him when he’s not in a position to do so for himself. I’ve often caught myself absorbed in conversation with a group of friends, but aware that Kerr has slipped deep inside himself because we have not included him. If it’s a small group of people who know Kerr, we can work together to correct the situation, but if it’s a larger group of people who are not particularly sensitized to Kerr, I feel like I’m swimming upstream. After everyone has returned home, I’m left feeling conflicted—pleased about the flow of conversation, but sad and guilty that Kerr has once again been left out.

I love it when people really want to know Kerr and how he communicates, or when they feel unsure, they ask us, so we can help. It is especially wonderful when they realize that Kerr is truly like the rest of us in all of the most important ways. When others talk from the comfort and knowledge of that perspective, Kerr feels and knows it, and it makes a big difference.

Knowing Kerr keeps widening our perspective, and there is so much more to see and understand when the view is panoramic.

Gail

Homeward Bound

August 6, 2011


There is something mesmerizing about looking out at the ocean, watching the waves undulate.  We are on the ferry from Argentia, Newfoundland, to North Sydney, Nova Scotia.  Skye and I have a cabin with a large window looking out at the sea, and we are on our way home after more than two and a half months on the road, and it feels good to be homeward bound.  It feels particularly good to know we’ll be seeing Kerr and Burns soon, and resuming life as we know it.

There is a very different feeling to this journey than to the one at the beginning of our trip westward.  There were so many unknowns at the beginning, and with them, accompanying anxieties.  My biggest fear was about Skye’s safety.  That fear was intensified when one of my contemporaries told me about setting out to cycle across the country many years ago, only to have his plans curtailed by a car with a trailer that fishtailed, and landed him in the hospital, fortunate to be alive.  Now, there is not only the relief that Skye is alive and well, but I feel such a sense of pride in Skye’s accomplishment, and I am moved by his passion, dedication and self-discipline.  Cycling across the country is a feat for anyone who does it.  Add to that, actively participating in approximately 25 events, sticking to a rigorous schedule because of those events, blogging mostly on a daily basis—often when he was dog tired—and  talking to the media countless times; this was an extraordinarily challenging journey.  The weather—particularly the wind and the rain—was often more of a fierce opponent than a friendly companion.  Skye did it all, day after day, and I could tell from the responses he got from one Cool Communicator after another, as we traveled across Canada, that Skye’s journey sent an implicit message to everyone who speaks in different ways, not only that , “You deserve to communicate,” but that, “You deserve to be treated in the same way anyone else is treated, you deserve to participate, you deserve to be respected and valued”, and “You are important.”

Now, on this journey home, there is a sense of having faced the challenges, having sent the messages over and over again, a sense of how important it is to keep sending those messages, and a sense of how much work there is to do to ensure everyone is able to communicate to the best of his or her ability and  to participate fully in every aspect of  Canadian life.

We also have a wonderful sense of community.  There are so many of you who inspire us, Cool Communicators across the country who, through the way you are living your lives and through your advocacy, are making a difference; dedicated professionals—many of you members of ISAAC Canada— who are passionate about AAC and who have worked hard to make the events across the country happen; and families who are trying desperately to find the services and supports to help your loved ones communicate and live meaningful lives. And then there are all of the volunteers who jumped on board, some of you who knew little or nothing about AAC before getting involved in Kilometres for Communication. There are those of you who joined us along the way, old friends and new friends who cycled or traveled with us. There are our sponsors, many of you unfamiliar with AAC before making your contributions to Kilometres for Communication. There are also all of the reporters who understand the importance of what we are trying to do, and who are doing a wonderful job of helping us to spread our message.  There are those who have donated and those who have continued to encourage us every step of the way. The hospitality we’ve been offered has been extraordinary.  Skye and I talk about Kilometres for Communication as a campaign of generosity; it has been personally restorative and rejuvenating. To all of you who have participated, contributed, encouraged, and supported, I add my heartfelt thanks to Skye’s.

I want to say a special thank you to everyone who has submitted stories to our website.  I apologize for the delay in posting them—not an easy task to accomplish while on the road with slow, unpredictable or nonexistent internet.  Posting stories will be a priority once we return home, so thanks for your patience and understanding.

Skye has completed his cycling journey, but Kilometres for Communication has just begun.  We look forward to continuing this journey together.

Gail

Day 69 – Ferry to Newfoundland

As my mom says, rest days on this trip are a bit of a misnomer. They truly are catch-up on blogs and email days. That’s what I did yesterday. Today, I didn’t have to bike; I didn’t have to write. I didn’t have any events. This was the first true rest day of the trip. Last night, as I went to bed, I realized this. It was wonderful feeling my adrenalin subside.

We packed up our campsite and were at the ferry terminal a little after noon. The ship was scheduled to set sail at 3pm, and we were supposed to be registered and on standby to board by 1pm. We didn’t board the ship until quarter after 3, and the ship didn’t set sail until a half-hour later. The lateness didn’t matter to me, because whether I was snoozing in a reclining seat on the ship, or snoozing in our RV, I was snoozing, and that’s what I wanted to do today.

I did wake up for the ship’s safety and feature video—how to get to the lifeboats, how to put on the lifejackets, and all that. I’m totally comfortable with being in the air. Speed doesn’t scare me at all. Water has always churned my sense of comfort. I do take the Atlantic Ocean seriously. I watched the instructional video.

The safety video transitioned into a “check out how cool our boat is” video. There was all that stuff about the restaurant, reclining seat features, kids’ play area, the TVs. I was secretly laughing at the teen zone part of the video. There was a clip of an elevator door opening. Out walked a skater-style dressed teen. He scanned the room, flicked his long hair to the side, smiled, and looked somewhat in awe. A bunch of other teens were sitting around in this area listening to their headphones, and reading magazines.

I decided to forego checking in at the teen zone.

It amazes me how about 10 tractor trailers, 15-20 RVs, and a countless number of cars can fit on this boat. What amazes me more is that it floats. The boat itself is steel, and filled with hundreds of thousands of pounds of things that would plummet into the depths of any water. Really it’s amazing how far our race has come. Dump 500 steel beams into the ocean: they make a huge splash and sink. Now, take that same amount of steel and put it together in a different form; in the form of a boat: not only does it float; it holds hundreds of thousands of pounds and floats. How you get a colossal hunk of metal to move at 30km/hr across choppy water, and then navigate through a narrow rocky channel to dock is a whole other matter.

The boat that amazes me

Humanity has these complex triumphs of engineering, almost always as a result of a collaboration of ideas facilitated by communication. I think that it’s safe to say that there’s an inspiration behind every invention. Perhaps a floating log inspired someone to make one of the first boats. Perhaps a monkey sucking ants out of a hole using a rolled up leaf inspired the human use of the straw. We now pump billions of gallons of oil out of the earth with ‘straws’. The typewriter wasn’t originally intended for commercial use or business. A man invented it to help his deaf friend communicate more efficiently.

Open mindedness. Some of the best inventions were disbelieved, thought to be impossible, stupid, a waste of time. What would a world without airplanes be like? When our environments disable people, when our schools segregate, our policies act as barriers, and narrow-mindedness is the foundation of many attitudes, the sphere in which we all live is hindered from expanding.

-Skye

July 26/11

Day 67 – Linwood to North Sydney, NS – 152km

Something happens when a goal is in sight. The weather
doesn’t seem as relevant. Rain will dry. Winds; I don’t have to let them slow
me down. Time seems to pass by. Hills aren’t feared or resented. They are
merely another thing between where I am and where I want to be.

I pedaled on the narrow bumpy Highway 4 towards the Canso
Causeway—the entrance to Cape Breton. It was cloudy. I would enter a patch of
rain, get wet. Then it would clear up. The wind would dry me. When I wanted to
dry my gloves, I would take them off and strap the Velcro around my handlebar.
Hanging from the handlebar, they would dangle in the wind and dry quickly. The
wind was coming from the North, meaning that I had either a headwind or
crosswind depending on which way the road curved.

I knew Cape Breton was a special place from my first
glimpse of it. I came over a hill, and in the fog, I saw the behemoth mass of
rock and trees rise out of the sea. Big freight boats waited patiently near the
cliffs of Cape Breton. There are a number of mines on these shores. These large
boats wait nearby to take the mined rock to faraway places.

At the campground we stayed at last night, we met 2
cyclists travelling from St. John’s, Newfoundland to Halifax where they
live—Ron and Joe. Joe recommended a route for me to take. I was originally
going to take the Trans Canada (Highway 105) all the way to North Sydney. Joe
and Ron had taken Highway 223 which they recommended that I take. The only
tricky part is finding which side roads to take in order to get to 223. I took
Exit 4 off of 105, and then took a left onto Portage Road, which goes over to
223. It was actually quite simple.

Jen Kang from the L’Arche community near Whycocomagh,
Nova Scotia, had contacted us several months ago after her coworker, David,
spotted an article about Kilometres for Communication in the Toronto Star. We
had planned to meet several days ago, but our correspondence was loose.

Just by chance, I told Gail that I wanted to meet her
about 60-70km down the road (I leap-frog with the support vehicle).
Sixty-and-a-bit kilometres down the road was just off of exit 4 on the route
that Joe and Ron had recommended that I take. Gail pulled over in a closed gift
shop’s gravel parking lot. Serendipity: it just so happened that the gift shop
was part of the Whycocomagh L’Arche community!

I took an hour break from cycling and walked around the
L’Arche community. I met several people who live in the community. I met a
fellow named Trevor who was extremely interested in shoes. He was curious about
my bike shoes. He wanted to know if I had flip flops and a pair of rubber rain
boots. I wonder if Trevor has ever been to the Bata Shoe Museum in Toronto. All
of us had a quick talk, but they were busy preparing for a birthday party later
in the day, and I had to get back on the road.

Not long after I got back on the road the clouds cleared.
Highway 223 was quite hilly, but it was beautiful. It followed the shores of
Bras d’Or Lake. Steep wooded hills fell into the deep blue of the lake. Along
some parts of the road, there were some extensive properties with impressive
lawns. As I passed these properties, I was pondering the amount of time that
someone spends cutting these lawns. I think some people’s pride grows
vicariously through their lawns. The ride was quite scenic and the time was
flying by. There are so many people who I wish could have seen the sights that
I saw today. Halifax was a special place, but it didn’t feel like a milestone
to me. I was expecting to feel a huge relief and sense of accomplishment when I
arrived in Halifax, but I didn’t; only mildly. Last night, 10km south of Cape
Breton, I knew that the ferry terminal at North Sydney was my goal; the place
where I would’ve cycled the mainland of Canada, the place where I would have
finished cycling my ninth of ten provinces. As I cycled today, I felt a strong drive
the whole day. I usually only get this drive for the final 20km of a day, when
I know I’m close.

I eventually arrived at North Sydney. A massive ferry sat
in the harbour. I had made it. I suddenly felt really tired. I knew that if I
had to cycle tomorrow, and the day after that, I wouldn’t feel as tired as I
did. However, I arrived a day ahead of schedule, our ferry to Newfoundland is
booked for the 26th, so I have two days before I have to pedal. My
body sunk into a relieved tiredness. I know that the adrenaline will kick in no
matter what the weather is the moment I set foot—set tire—in the final
province.

-Skye

Day 66 – Truro to Linwood, NS – 161km

I woke up early to get on the road at a good time, but
there was some really thick fog, so I ended up waiting around until it cleared.
I pedaled on Highway 4, the old Trans Canada, for about 60km. It was hilly and
twisty. I was enjoying the scenery and making decent time. I was thinking: perhaps I can get to my destination early
and catch up on blogs
.

I met up with the support vehicle about 70km into the
day, near New Glasgow, NS. Here, we called all the campgrounds in the
Antigonish area. It was a Saturday, and they all seemed to be booked. We found
a campground on the ocean, about 40km further along my route that had an
available spot. I agreed to pedal the additional distance in order to have a
nice place to camp. We had spent the night before in a little gravel lot in
between a road and a gravel multi-use trail.

I ended up pedaling the final 100km of the day on the
Trans Canada. It varied between wide paved shoulder, narrow paved shoulder, and
almost no paved shoulder. The highway was not a freeway for the stretch I was
cycling it. At one point there was a hill ahead. It looked like there was no
shoulder on my side. It’s one thing to have no shoulder going downhill, or on
flat ground with a tailwind. Cars take a while to catch up on an object going
40km/hr. Going uphill without a shoulder; that can be dangerous. There was a
wide paved shoulder on the other side. I crossed the highway and pedaled
against the traffic on the opposite shoulder. It felt strange, but I kept
telling myself that I was safer.

Twice on this portion of the Trans Canada, I saw cars that
had sped by me pulled over by police a kilometre or two later. I felt some
satisfaction as I cycled by them. There were lots of cops out on this stretch
of highway.

When we arrived at the campground, two other cyclists
coming from the opposite direction were just arriving. Ron and Joe were cycling
from St. John’s, Newfoundland, to Halifax, where they lived. They had actually
cycled across Canada last year. They too weren’t so lucky and had headwinds in
the prairies on their trip. I was glad to meet them—they recommended a great
route for my day tomorrow, which they had travelled today. When I was planning
my route over two years ago, I had considered taking the route they recommended
(Highway 223), however I wasn’t sure how to get to Highway 223. I didn’t want
to take a ferry, and I didn’t know if the side roads linking the Trans Canada
to 223 were paved or gravel. As well, my paper map, Google Maps, and Blackberry
Maps didn’t agree with each other. They all gave different road names and
showed different side roads in that area. It was good to have that all sorted
out and confirmed. Ron’s and Joe’s route also shed about 15-20km off my initial
Trans Canada all-the-way route. Thanks fellas!

Tomorrow I’m hoping to make it to North Sydney, the end
of my mainland cycle, weather providing. That’s another thing I’ve learned:
weather forecasts often don’t mean anything in certain parts of the Maritimes. In
some places they don’t have a clue what the weather will be like in an hour. Anyway,
I’m hoping I’ll reach my milestone tomorrow. My goal is in sight. As long as
the weather isn’t atrocious, I’ll have the motivation to get myself there.

-Skye