Three weeks for the rest of your life

I’m scared, I’m anxious, I can’t sleep.

What’s next?

Europe has been calling me for a long time – the great challenge of the Tour du Mont Blanc, the gorgeous walks through the Dolomites, the Scottish Highlands, the coffee shops of Amsterdam…

I also yearn for Japan after the escapades of 2020. After I got home from Nepal and had about two months to relax and reset, I booked tickets to fly to Tokyo in September 2020. You all know what went wrong there. Riding my bike the length of Japan is still very high on the bucket list, and very well could be the next one up.

But maybe something closer to home would be ideal? The Munda Biddi would be an incredible experience that starts at my doorstep. 1000km of cycling through the southwest of my state, something a bit more comfortable to kick things off again.

Nah, boring. Let’s do Peru. Always wanted to see Machu Picchu and those cute llamas. Why not just go do something extravagant to get back into the swing of things?

Get to sleep, eat your meals, survive.

I’m so unfit right now it’s not funny. I really can’t blame anything but my own laziness, since COVID hit I pretty much gave up. I stopped panning around on Google Earth, stopped looking at flight prices on Skyscanner, stopped thinking about all the cool trips I could throw myself into.

And without that, what’s the point? Why bother walking around my neighbourhood if I don’t have the opportunity to walk around mountains in France? Why bother cycling the same roads over and over again if I can’t put my bike in a box and rebuild it in Hokkaido? Why bother getting fitter and stronger when it will be taken from me? Why bother doing anything?

I gave up. I gave up and I succumbed.

Three more weeks.

I’ve realised my mistakes and I’ve never been more excited to move forward, to rebuild my mind and body in preparation of future trips. I’m ready to explore again. I am bursting at the seams, so eager to jump into something as soon as I can. Borders are opening, and while flights are a bit expensive currently, I could fly to Peru next week.

I’m still not fit enough but that hasn’t stopped me before. Remember Nepal? When I was 73kg and stuffing my face with steroids just to get on the plane? When I slacked on the prep work and struggled carrying my pack over those mountains? That all worked out fine in the end, didn’t it? The absolute high point of my new life with this disease was getting home safely from that trip having achieved what I set out to do, something I thought was a huge risk at the time. People laugh with me now about how they feel like I was prepared to die in Nepal. Here’s a secret I haven’t shared with you, I was.

There was no real plan for after Nepal because that’s all I could think of. The only thing that mattered leading up to that was making sure my parents saw me graduate university and then make it to that trek no matter what. So, since I finished and then have had two years to stew on both the trip and my disease situation, I haven’t found a whole of motivation or desire to adventure like I had before.

Therapist, dietitian, surgeon.

I am currently 83kg. In a full-blown narcissist moment – I look great. I’ve passed most of the awkward young adult look by finally hitting puberty at 25 years of age, figured out what cut makes my hair look best, and really got into fashion while locked down for a year or so. Most people tell me I’m looking healthy when they see me. If you’d told me all that when I left for Nepal, I’d think I’m doing great too.

Despite that, I haven’t worked in over a month. It’s a weird feeling since I’ve been halfway out the door for months anyway, but not working at all is taking a toll. It’s stressful not knowing what the future holds for your career, let alone while also navigating bowel disease. The horrible truth is that I physically can’t do my job right now. While I’ve had worse flares in the past, I’ve never had incontinence until now; and unfortunately, being stuck on a cargo ship doesn’t bode well for the times when I have 20 seconds to make it to a toilet.

7 minutes to run the belts off once I call control.

3 minutes to waddle-shuffle-jog to the end of the ship.

2 minutes to waddle-shuffle-jog back the other direction to get to the wharf toilet.

Ah! Bliss! I’ve made it.

Unfortunately for me, I shat myself 30 seconds into this little situation and now I’m cleaning myself up in shame.

If I’m lucky – this will be the only time it happens today.

This disease is painful. It’s lonely. It’s dehumanising.

Income protection forms. Taxation forms. Admission forms.

And so, it’s end game. I’ve tried everything and we’re out of things to try.

Except tofacitinib, but fuck that.

I’ve buried my head in the sand and pretended that this moment wouldn’t come for the past six years with this disease. I persisted with Remicade 6 months longer than I should have because I expected 10 years of remission. I Stockholm Syndromed myself into thinking it was working while I had 6 bowel movements full of blood every day. Entyvio was much the same. Now at this point I’ve been forced to face the reality that surgery is my best option, and it’s fucking terrifying.

I want my life back. I want to explore the world again. I want to have hopes and dreams and goals and meet people and eat beautiful food and see a hundred sun rises and sun sets from my tent in a hundred new places. I spend so much of my time crying, or thinking about crying, or edging an anxiety attack because of how nervous and scared I am about having this procedure and how life will change for me. I want nothing more than a successful operation and a life that I can enjoy again. It’s so hard being faced with the idea that part of me is defective and the only option is to cut it out and throw it away. Part of me is failing and it hurts too much to not be able to just willpower the fucking thing to work again.

I guess that’s life though, and I’ve impulsively thrown myself into this process like I do with everything I’m nervous about. It knocks the edge off and once I’ve committed there is no turning back. Much like hopping on that plane to Nepal I am now doing the same thing by walking myself down those halls into the admission room.

I have a total colectomy in two weeks. See you on the other side.

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