Eclipse – Intermission – Who I am

There was a moment. Just a short moment. On the plane. On the way home from America back in June.

We were about six hours into the 15 hours of flight time. The flight was full. The agitated and odd man across the aisle from me was out of his seat, pacing back and forth up in the bulkhead again. The very tall American man squeezed into the middle seat beside me needed to get up and stretch and use the toilet.

I was sitting on the aisle. So I paused the music I was listening to and took off my headphones. I skinnied myself out of the seat in that 45-degree-angle way you do when everyone is crammed in with seats reclined after the dinner service. I stood up into the aisle, and then….

I blacked out. For just a moment. A teeny tiny moment. I was fully conscious as I stumbled backward and landed in the empty seat across the aisle.

33,000 feet over the Pacific Ocean is not really an ideal time to involuntarily lose consciousness. The stewardess who had apparently been walking up the aisle rushed toward me. The tall American man leaned down and took my wrist and began to feel for my pulse. The stewardess enquired: “are you okay?” “Did you just lose your balance?” “Do you want some water?” She called the other stewardess forward who was cruising the cabin with water refills. They conferred – Is she okay? Did she pass out? Did she just stumble? Does she need oxygen?

I felt okay. I assured them I was fine. The American guy proceeded to the restroom, and the crew dispersed. Fucking embarrassing.

But it was that moment. That teeny tiny moment when I knew: I am so fucked. I am so sick. The doctors can’t find what’s wrong with me and can’t fix it. And some don’t even think anything’s wrong at all – they insinuate it is all in my head.

I know what is wrong. It is not in my head. I developed ME/CFS after a mosquito virus. I have a neuro-immune condition where my body is fucked up in multiple ways at the cellular level. I know that – I just don’t know how to fix it.

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This was the last ride before ME/CFS began kicking my butt in a big way on the last day of the ride. Big River Ride – December 2017.

Over the past 18 months, I have tried to remain resilient, even if my body is not. I have dark moments. But they are only short moments – maybe a little longer than my airplane black-out – but short nonetheless. I recognize those emotions. I allow myself to feel them. I wallow in self-pity and uncertainty for an hour or so, and then I tell myself to move on. Move forward. Plot the next steps. Listen to my body and find a way forward. I am not one to linger in sadness – it’s just not who I am and never has been. Shit stuff happens and I just keep going. That’s how I have always been.

Yet…. there has been one other thing. One big, huge, greasy thing that has kept my spirits from collapsing.

And that is my identity as a cyclist. I want more than anything to get back on that bike and ride without care. I want to go for a spin without wondering if I’m overdoing it. I want to just get on that bike and pedal. I want to ride hills again. I want to spend my weeknights plotting routes and executing those on the weekends. I want to head out on the bike without a real set plan and just camp wherever and know that I can make it back to the starting point without worry. I want to ride new roads on my new bike deep in the forest where I can go a whole day without seeing a soul.

The desire to ride drives me forward. It has propelled me through thousands of dollars of medical tests and doctor visits over the last 18 months. It has kept me focused on trying to get this fucking disease into remission. It has given me something to scrape myself out of bed for, even on the days I feel horrible and the motor-neuropathy in my legs is so intense each revolution of the pedal is painful. I may only do 10kms on days like that – but I am still out there at the very edge of my capacity as much as remotely possible.

I am a cyclist. I ride. I have to regain enough of my pre-illness capacity so that I can do challenging rides again. I just have to. I will do whatever it takes to get well.

During June and July this year, in the midst of a major relapse when I really could not do much at all, I looked up some old writing from my uni days when riding permanently became part of my identity. Cycling has always been my favourite hobby – since the time I first flew solo down Burton Place on two wheels. I was on my bike in every moment of free time in high school. Yet, it was at uni that bicycles became a lifestyle for me. I studied hard. I played hard. I worked hard. I had great friends. I partied kinda hard. On occasion. But bikes were part of it all. I did not have a car. I rode everywhere all year-round. I rode every night for hours, sometimes alone, sometimes with ‘the boys’.

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Em and the bike in high school.
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Riding during uni days.

All of those memories have helped me survive these past 18 months. They remind me who I am and who I have always been. They give me the strength to push forward and keep looking for a way to get well.

This first piece is a university Newswriting assignment in which we were supposed to describe the steps or details involved with something a person might participate in. The professor gave the example of explaining how to bake a cake. My submission was, of course, about getting ready to go ride.

In Preparation to Testify – Participation Exercise – 28 March 1997

With scars and love for the sport permanently etched into my body, I proceed forth for a few hours each night to the altar of adrenalin to testify before the force of gravity of my passion to pedal. As the churchgoer takes the wine, I take the tumbles and splats to satisfy the rituals of my bicycle religion.

Tonight the ritual begins like every night past. I stack my books in neat little piles on the coffee table, for studying has concluded for the day. I pack the proper books in my backpack for the next day’s classes. I make sure my wallet and sunglasses are secured in the front pocket, so I won’t forget them when I leave for work at 6.15 a.m. tomorrow.

Next I go to the closet and pull out a t-shirt and a pair of jeans, as well as a sweatshirt and a pair of socks. Once collected in my arms, I take them and toss them on the floor next to my backpack.

I take two steps south to my kitchen table-desk-junk pile-nightstand and slide the ON/OFF/ALARM button to ALARM. I press down ALARM SET with my middle finger to check that the alarm time is still set to 6.05 a.m. Yes, it is. Tomorrow is laid out and ready to go. I will not have to contend with details on my late-night return.

The preliminaries are finished and the actual steps of the ritual begin. First, because it is a Wednesday, I open up the little container of 3-in-One and release two drops onto my bicycle’s chain. I send the freewheel into a ferocious back-pedal to evenly distribute the lubricant. I listen to the zing and then the quick repeating click of the freewheel. Two drops, once every other week on a Wednesday, is my own quirk, though every rider has his or her own.

I now walk over to the compact disc player and select a CD by the Pixies. I program in the appropriate song numbers and turn up the volume. These particular songs are the mood-setting pieces that pump the first tinges of adrenalin into my blood and provide the needed groove to put my mind in an aggressive state.

I proceed back to the closet to choose this night’s outfit. I decide on a dark-colored t-shirt and a black pair of cut-off shorts. It is late March and the first night of the season warm enough to wear anything but jeans. I grin in anticipation of the night’s ride.

The clothing choice is nearly as important as the bicycle itself. While the bicycle contains no reflectors, my body will possess no light colors. The decision is crucial. Motorists will not be able to see me as easily in the dark of the hour. As a creature of the night, I work to camouflage myself and my bike. To have a car brake or yield because its driver sees me is a negative in my religion. By dressing in dark colors and essentially becoming invisible, I assume all responsibility. If I’m hit or the cause of an accident, I cannot pass off the blame. It is totally my own. This aspect adds excitement and an extra element of challenge to the activity.

Now dressed in the dark colors of the night, I move across the hall into the bathroom. Onto my right wrist I slide three bracelets that are either lucky or symbolic in some manner, and as a result, must always be worn. Onto my right ring finger I place a shark’s tooth ring. I then put on a necklace with another shark’s tooth. These two pieces symbolize aggression and are meant to remind me to ride aggressively and not back away from a jump or any other challenge. 

The final accessory is a pair of earrings. I always choose a pair that dangles from the lobe. When riding, the breeze will blow through them, causing them to barely audibly jingle. Sometimes, off a certain jump, wearing a certain pair, the earrings will swing hard and lightly bump my jaw. It is a small joy, but a significant memory I will carry through the rest of my life.

My riding costume is nearly complete. I return back to my room and put on my riding shoes. Their sole is good for my type of riding, and the inner side has extra rubber for protection near my big toe. This spot takes much abuse when performing certain bike tricks, and not every pair of shoes has good protection there. It is another small, but significant, detail, and I thank the shoe company in my mind as I lace up and tie the strings.

My attire is complete. I walk over to the coffee table and blow out the candles that have been burning. I turn off the CD player with a quick flick of the power switch and look to my bike.

My head seems about to explode, and my heart already begins to pump faster. I clip my Walkman onto my short’s right pocket and slide it back toward my hip. I insert the ear buds into my ears and turn up the volume. I reach for my bicycle and turn out the light. I push the bike out the front door and lean it against the railing. I then turn around and lock the door. I inhale the first breath of the night. It is 10.24 p.m. and I take the first pedal. I am riding to the altar to testify.

 

The next piece was written about 10 years after I graduated uni and returned to visit Fort Collins. It describes those night rides – which are my best memories in life – and how cycling was such a big part of my existence.

EULOGY FOR THE GOODWILL JUMP

The Goodwill jump is gone.  The source of bicycle confidence and hang time has been lost to redevelopment.  Where the sidewalk jump used to be is a fenced-off deep excavation site that appears to have taken the sidewalk with it. 

So what was so fantastic about the Goodwill jump, anyway? 

Well, you may recall that in my college years I rode my little BMX bicycle all over Fort Collins every night with ‘the boys’ – some guys who also really liked to ride, albeit on mountain bikes.  We had created different ‘routes’ that traversed the entire city.  The routes provided a fantastic mix of opportunities to play in traffic, hit lots of jumps, fly along the dirt paths that followed the irrigation ditches, jump down stairs, race the local train, etc. 

Riding was a beautiful, adrenalin-pumping, endorphin-inducing activity.  It was an individual pursuit (‘every man for himself’ – the boys knew speed, I knew shortcuts and traffic patterns!) pushed to higher levels of performance by the presence of others who knew your riding style and when to slow down or leave you for dead. 

But the Goodwill jump – well, it was the great equalizer.  Everybody could get great air off the Goodwill jump and feel like they had some skill.  When the boys and I took along new or infrequent riding partners, we always headed for a round or two at the Goodwill jump because, as the boys used to say, ‘it’s foolproof, even Em can get air off the Goodwill jump”!

The jump was so-named because it was across the street from a Goodwill store.  The jump was essentially a little ramp formed from the indentation of a driveway crossing an unusually high sidewalk: the street was about 18 inches lower than the top of the sidewalk.  The ramp was the concrete that sloped down from the high sidewalk to the driveway entering at street-level.

Depending on where you hit the jump, you could find up to 2 feet of sloping ramp.  But the fantastic thing was that the degree of slope and the lip of the ramp just happened to be absolutely perfect for launching you very high in the air. 

To make it even better, the jump was very forgiving of approach.  You could hit that baby at any speed and any angle and still fly!  Due to the degree of slope/lip and the drop to the landing area in the street, even I could get over 2.5 feet of air! 

To make the jump even more fun, there were no streetlights nearby, so you had to ride by feel.  Additionally, your approach had to be different each night depending on where the cars had angle-parked on the street.  Sometimes you had to approach on the sidewalk, sometimes you had to come in at a steep angle from the street, and sometimes you could just whip around the cars further down and hit the jump head-on.  But regardless, you could always get great air!

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This is where the goodwill jump was located. There was no big building there, the sidewalk was completely different, the asphalt was chunky, there were no aesthetically-pleasing pavers. It was long before gentrification and development – this was just a derelict road on the edge of the Old Town district back then. But boy, was it ever a good jump!

The boys could do full x-ups (turn handlebars 180 degrees), lay their bikes horizontally to the ground and do all sorts of really stylish tricks in all that great hang time.  Even I could routinely pull stylish one-footers at the Goodwill jump.  I could turn my handlebars 90 degrees to the bike (versus the boys’ full x-ups) – an amazing feat since I could never usually turn my bars much at all off of a jump.  I could even do one-hander, one-footers – though they were never particularly attractive and more of the ‘dead man’ style. 

Once, fuelled by a particularly high level of angst, I pulled a one-footer, no-hander!  Granted, my friend Dan reports that my hands were only 4 inches off the bars and that I closed my eyes and flinched in fear as I pulled it off.  But I still claim it, since it’s the only time I’ve ever done such a thing! 

Such was the beauty and hang time of the Goodwill jump.  Our other favourite jump, ‘the SC hill’, disappeared at the turn of the century when they re-routed a bike path, put up a fence and built some houses.  No more flying down the hill, hitting that jump and turning hard right to make the bike path! 

Another jump, ‘Coopersmiths’, is still there. It was a hilarious one because you either ‘hit’ or ‘missed’, and you did so in front of a bunch of people sidewalk-dining.  The approach is still difficult and the obstructing tree has only gotten bigger – so watch your head, Dan! 

It’s funny how a piece of sidewalk can hold such importance to some.  However, those rides, jumps and memories are significant.  Even though none of us live in Fort Collins anymore, and we’ve all got mortgages or spouses or achy bits, our emails to each other still frequently talk about particular jumps and how they compare to what we’re riding now.  By far, my fondest memories of college are all those ‘night rides’, and the Goodwill jump will always be that special place where we could all pull moves like you saw in the magazines.  Rest in peace, Goodwill jump!

 

And so I keep pushing forward. I WILL ride long distances again. I WILL climb hills again. I will keep looking for ways to get well. I will keep experimenting with my pacing – even when it feels like all I’ve done for two years is achieve one step forward for every two steps back.

But I am doing all I can:

  • I have an appointment in Melbourne in late October with one of the best ME/CFS specialists in the state. He also has an interest in insect-borne and auto-immune diseases. He takes very few new patients, but he has agreed to take me on. I will make the absolute most of that appointment.
  • I have joined the local gym – so I can start rebuilding strength very slowly since that activity is largely anaerobic. It is aerobic exercise that gets me in the most trouble.
  • I had the hydrodilatation done on my shoulder. While my movement is still quite restricted, the procedure has reduced the pain and given me enough range of movement back that reaching the handlebars on my bike is no longer painful. I don’t even think about that pain or stiffness when I go ride now.
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Out on the bike on the 14th in all the spring green. It was only after I got home that I thought: I didn’t even think about my shoulder once – not even on the rough gravel!
  • I have moved to a much more scenic location. I really, really like the new place I’m living. I have a small backyard and pretty peaceful surrounds. There are no rats in the roof or walls.
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We’re all ready to get back to life. Adventure planning map is on the wall and the bikes live in the dining area since I’ve never bothered with buying a dining room table. If company comes to visit, I have fold-out camping tables 🙂
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The view from my bed – part of the backyard, a huge, 100+ year-old tree and part of an old 1860s barn used in the Cobb and Co coach days. (My old place had no grass and only about 2 metres from the fenceline to the building.) As Nigel said, “the new place is so much less claustrophobic!”
  • It is spring and it gives me hope. I keep remaining grateful that I am not one of the 75 percent of sufferers with ME/CFS who have such severe symptoms that they cannot work or leave their home much.
  • I have my eye on a new job that will be closer to where I now live. I need to get out of the disintegrating organisation I’m in now. The new job should be advertised in mid-October and I am preparing my resume and cover letter and practicing my interviewing skills now. I applied for and was offered a different job back in March (but didn’t take it), so I have done this all fairly recently. I really want this job, though, so the pressure is greater. Still, I am doing all I can to set my life up in a way that will foster recovery.

I know the journey forward is far, far from any sort of end point. It will be years before I achieve any sort of recovery or remission that I feel is satisfactory.

But I am a cyclist. Every single time in life when I thought, “life is perfect. I cannot imagine being anywhere else or doing anything else right now. Let this never end”, I was on my bicycle.

Here is my facebook post from a long, lonesome road in Wyoming on the day I ticked over 5,000 miles on my 2014 tour:

5000 miles! We rolled over the mark today.

The bike. The crew. Me. The road. This is life. Right here. Right now. And it is grand.

I am a cyclist – BMXer, mtn biker, touring cyclist. Every other identity is superfluous. I am Em. And I ride.

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facebook post picture – on a stretch of Wyoming road with no services for 100 miles.

And so I will get my life back. I cannot entertain any other possibility. I may have lots of faults as a human, but there is one thing I do have that will see me ride again like the Em of old: grit.

I have GRIT. In spades. And I will ride.

17 thoughts on “Eclipse – Intermission – Who I am

  • Emily, you are amazing. I wish you all the best with this specialist. I’m so sorry you have been affected by this horrible disease. I’m rooting for you. Catherine

    • Thank you Catherine. I hope you have the PhD and response to examiners etc behind you now and you have some post-PhD freedom for riding!

      • Not quite! Just about to start the clock again for the final 5-6 months. We’ve had our own health hassles this year – my partner has been having treatment for cancer and I took leave from the thesis. But he is recovering well and all looks good. Although he will need to take drugs daily that require refrigeration… Could make our touring choices more limited. But we will find a way. You too! I am sure of it. In the meantime, take good care of yourself.

      • Oh, dear! All the best for the final bits then. So sorry to hear your partner has had to endure cancer treatment but good to hear he is recovering well. You might look into the thermal packs they sell for diabetic insulin pens for the meds. You wet them down and they stay cool until dried out. I have meds that have to stay below 20C, and the packs give me a couple days in moderate weather buried in my pannier in clothes between wettings or need for a fridge. I have put the thermal pack in a ziploc bag and then a drybag and then weighted this down in mtn streams, too. I don’t know your temp requirements, but the diabetic bags are worth a look. Best wishes.

  • Yes, rooting for you is a great way to put it. Go grit, and gravel, and anything that gives you traction on this disease. Go Em!

    • Ha! Thanks – sometimes I’m pretty sure I’m off the bike pushing it very hard up a super slippery steep hill. Ah well, imagine the view when I finally get to the top 🙂

    • Thank you Kathleen – I’m not trying to be inspiring… just healthy again! Good thing touring cyclists are endurance-oriented by nature instead of sprinters!

  • You are a bad ass biker chic!! I’m sure you are going to get your mojo back and you’ll be catching air again in no time.

    In the mean time, keep on keeping on.

  • Hi Emily,

    You can now ride without thinking about your shoulder – that’s a win! Small but important in the overall state of Em.

    Your new abode looks good – airy and spacious as is the new area of Victoria to explore. You are in the 25% of people with ME/CFS who can do stuff simply because of your attitude. You know this; your friends know this. Just keep up the attitude and scare it away!

    • Thanks, Tony. I sincerely think the reason I’m able to do stuff is that I was very fit and active when I developed the disease. My 40 percent of pre-illness capacity is a lot more than a couch potato’s! Attitude is important, but there are so many factors outside of my control!

  • Hi Emily! Best wishes with the specialist and the job hunt. Two intriguing pieces you wrote there about cycling. You really amped it up to go all-ninja at night before anybody thought of it. My creative thing this summer was mapping out my “bridges of DC” route, to cross all the bike-accessible Potomac River bridges in or near DC. There’s six of them and it’s not as easy to string them together in a mileage-efficient way because of huge hills at the upstream end of the district and an incomplete roadway grid at the downstream end (can’t bicycle on the freeways). One of my friends suggested the koningsberg bridge puzzle as a solution. It was one of the early applications of topography and is named after a city where folks tried to figure if they could reach all sectors of the city and cross all of its bridges without crossing a bridge twice. I was reminded of your occasional photo of the highway map of your area and the roads marked off. The bridge puzzle could connect all the remaining bits, I thought. And then I realize that’s not the only reason cyclists are out on the road. As you wrote, it is the altar of adrenaline. Keep riding and best wishes on recovery

    • Hi Chuck – Thank you for your comments, sorry to take so long to respond! Your bridges of DC challenge sounds really fun! Sometimes the planning is almost as much fun as the riding. Were you able to finish it off using the bridge puzzle? I finally marked off some roads on my map in the past month. Having an new starting point has opened new possibilities – most of my other new roads in recent times are in too small of an area to really mark off. Hope you are having a beautiful autumn. Emily

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