10 Years This Summer: Still Getting To Chase Life

This is my first trip of this size in a long time: 3 years to be exact. I was so nervous. Things felt almost new. So many things had changed, and yet there were some constants. I had to get to see all of my special USA friends (or at least a good chunk of them!) I had to see with my own eyes that they were doing okay after a turbulent few years. Some of my friends have had some really scary health issues, some have lost many family/friends members, others had lost jobs, apartments, relationships etc. It felt right to do a pilgrimage of sorts. If covid has taught me anything, it’s that things can change in a NY minute and you will have want to have seen/been with the people who matter the most in your life.

Whilst travelling around the USA, eating as many tacos and drinking loads of boba tea as I can, it dawned on me another anniversary. I had clocked it a few months, seen it coming up, but then nothing like running a community summer camp & immediately go travelling to forget a 10 year marker of something SUPER significant. OF YOUR LIFE. Like, literally.

It wasn’t until I got to Sandy Island, my USA work-home, a summer camp, of which our community camp: Camp Get Together, is inspired by – that it hit me like a tonne of bricks.

10 years ago to this past month, I had just been told that it looked like I had a lymphoid malignancy… cancer. I was sat with my boss from summer camp, Kate – now a very close friend, when I got told. And it dawned on me this trip that Kate would have been a bit older than I am now, sat in that hospital room with me- dealing with her international staff member in their very early 20s getting told i could have a very time-sensitive disease that could kill me off if I didn’t deal with it. And that staff member was so in denial that I refused to go home and deal with it.

Subconsciously this must have been playing in the back of mind. I put down my *need* to come back to see everyone just purely because of the pandemic. But I think it was more. Something deeper. A recognition. A re-connection.

I haven’t written about myself and illness much in the past few months on here, being a councillor makes it feel weird sharing it now, but one thing I often talk about when seeing friends are THE ODDS. I researched them constantly in the first few months of that diagnosis and I still have to keep revisiting them as circumstances change. I have folders full of study data, research on different treatments, experimental drug therapies, how cytogenetics impact those odds. I don’t think about them every day anymore, but the odds aren’t the type you’d want to bet on.

When it happened – in 2012, and in the subsequent years after – these guys (& others not pictured) banded together. Friends donated time, money, food, connections. They helped to pay for my USA medical bills, and bought things to make sure i could be as comfortable as possible and helped me do what I needed to do. in case there wasn’t enough time. I am endlessly grateful. And still to this day can’t believe it happened, and people did that for me.

For a long time, I couldn’t do much at all. And I genuinely didn’t believe I would make it to 30. Either because of what was happening, as it *felt* like I was dying – or because I wanted it to be over because there is a huge difference between *feeling* alive and *being* alive.

It was the WORST fatigue I have ever experienced (& I have never fully returned to smizz 1.0 energy levels, tho it has gotten better generally) needles, needles, needles, so many needles, fevers, infections, severe mucositis, anti-nausea drugs that resulted in weeks of lost memories, blood clots, followed by months of blood thinners, teeth issues, a slate of other issues a little too graphic to write about, crazy painful out-of-nowhere hand and leg cramps, now it’s kidney damage, weird lumps and tricky hypercalcemia……all bumps (& lumps) along the road.

But I slowly adapted to live with it all, became slightly less needy with it all, and medical research is always advancing. And my friends, from around the world, helped in so many ways, and continue doing so. They lifted and carried me when I could barely stand (metaphorically and literally). A beautiful and humbling lesson to learn in itself. That I have THE BEST friends in my life.

This moment in 2012 specifically rocked my world, and everything changed. The truth of the matter, is when you go through some crazy dramatic life experience — whether it be something like cancer diagnosis, or something else. Things change. Even if you do not want them to. When you live with this small nagging thought in the back of your mind that you might be dying (properly), you feel like you deserve to spend the rest of your life on permanent vacation. And the reality is, you can not. You must return to real life.

I found it difficult to go back, to try and fit into my old life. It’s like, how do you slip back into the ordinary world, and your ordinary routine and being your ordinary self, when you do not feel like yourself and ordinary stuff is no longer just ordinary? My world view was shifted, thus my whole line of perspective had changed. It would have been an untruth if i continued on making the exact same work.

I knew that if I was to live, and my life be saved – then I needed to make sure I had a meaningful life, i needed to work for something bigger than myself. How I did that was learn from all these incredible people in these photos below (& others not pictured!). They showed me how to show up, put your money where your mouth is, to take risks and to be my authentic self.

My friends are kind, and endlessly motivated, they are moved by the call of service and move mountains for their communities, of all types. Asking for nothing in return. They lead the way, carve out paths for others, help, support, and foster growth in everyone they meet/work with. They make people feel the most important person every time you talk with them. They’re wicked funny and fun and they go out of their way to help others. All of the things that I have tried to mirror in my bonus time life. They are teaching me what I need to do to be present and how service to others is enacted.

Every great wisdom tradition teaches us that there is immense benefit when we dare to be fully present, without indulging the temptation to look away. Many of us look away when things get hard. It’s why we have such poor language for illness, pain… even grief. But these guys stayed present with me. Through the good times and the bad, and continue to do so.

It was incredibly therapeutic, being with my friends here, getting to see them, laughing so much down the phone that we literally streamed tears and that it made your face ache and sound like a prank phone call. It’s hard to laugh like that on zoom.

It’s a mercy that time runs in one direction only, & that we see the past but darkly and the future, not at all. But this means we need to look towards and be present. even in the really uncomfortable moments. I’ve gained some powerful emotional powers (super powers) learned from these guys i’ve visited on this trip, in what I’ve been calling my second life.

Most all my deep-set hangups died with my first life. A number (but not all) of my grudges, entitled expectations, self-assumed responsibilities, judgements are simply gone. I have very little FOMO. I’m simply content to be alive and living my life. I have no bucket list. Life is the bucket.

10 years ago I didn’t think I’d make it to 30. Never mind getting back to the USA to celebrate still being here after a 2.5+ year pandemic and all these illness years. That is some luck!

It is no surprise that this trip felt so, so important to see those (that I was able to) who I love and who have been key in helping to save my life, in more ways than one.

I can’t thank these guys below (& others not pictured) enough for their time, their love, their belief, their lessons that they’ve been teaching me. I am endlessly grateful and indebted to you all – a debt i’m not sure i’ll ever get to properly repay you all for. So it always makes my year when I get to see you all, in real life, and making time and space to make it happen.

10 years ago I was on a plane from NYC back home to the UK because I was dying.

Today I’m writing this in a hotel room in NYC after an incredible trip from SF, NYC, Boston, New Hampshire back to NYC – seeing everyone I love that I can – and I feel more alive (& very lucky) than I have in a very long time.

I’ve lost so many incredible people along the way, that it doesn’t feel fair. But then life is not. I don’t know when my time will be up – none of us do, really – but I have some time, and if I use it well enough – it will be enough. Part of that is paying service to my community. Learning from you all. Leaving more than I have taken.

Here’s to using our time, all of it, together and in joy. Chasing life and living it.

Thank you to everyone who have gotten to see on this trip and helping to make it happen. Thank you for helping me over these many years. With gratitude always, your friend Smizz.

Published by smizz

Artist → Re-evaluating life→ Rad Oncology graduate + public health worker→ @lab4living PhD-er → Want 2 make a positive difference → Rule-Breaker → LIVE DRAWZ! → councillor! → Loves cities → rides fixie → adventures → wanna be ramen master → <3 Tokyo + NYC

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