A long view of time can replenish our sense of ourselves and the world.

A long view of time can replenish our sense of ourselves and the world.

I’ve been thinking about it for weeks. Every so often when campers know I’ve been pretty poorly over the past few years, they ask me how everything is. I reply with that it’s the most “normal” I’ve felt in 3-4 years.
But it got me thinking: on Returning to Normalcy … What Does that Even Mean?
The last time i worked at Sandy Island, properly, My life was in a state of mental whiplash and I barely even realized it. In barely a few years I’ve gone from being in a death spiral to staying up super late drinking wine with friends, climbing icelandic waterfalls, running for late buses. I went from planning out my funeral to doing radiation oncology and beginning to start a PhD. I’ve gone from thinking I’d never step foot at Sandy Island again, to working my longest summer contract here.
But it’s taken me to get to this summer to look back to see just how far I have come, compared to even just last year. Even in January this year. Even April.
Before going further I have to share how profoundly grateful I am to everyone. I can’t even write these words without gushing tears.
So the thought of a return to normalcy is like a warm embrace: to feel like the last few years were a mere aberration that has been rectified. I can’t explain the joy I got when my brain could feel bored and my body wanted to live again. I have about 4–6 hours a day that feel like they did before. The thought of getting to blend my social passions with community and art and social change immediately sets me to problem solving and creating again. Or the thought of unlocking a new meaningful lifestyle that I can plan for has me losing sleep piecing it together while I should be sleeping. I tweeted the other day that I’m already overwhelmed by the projects I’d like to work on now. It made me so happy to tweet it, to feel like I could be back to normal.
But how can I expect life to be normal? I’m still on a small doses of medications to help with everything from pain, to swelling, to hormone balances, to immune function stuff. As much as a return to normalcy seems the obvious goal, I’m definitely not normal now – so much pain & fatigue, still, and it just hit me I have no idea what was so great about normalcy before.
Being in the USA, seeing friends, being at Sandy Island with friends (staff and campers) has been incredible because these friends are all hard chargers, both professionally and personally. They’re exciting to be around because they are making the most of all parts of their lives and doing so thoughtfully. One of them asked what the projects were I was referencing in my above tweet, and in full imposter syndrome mode I stumbled at trying to explain what I was going to professionally do.
I constantly share that my biggest life insight is that while you have the time, optimize on the meaning you find in life.

In some rush towards normalcy and wanting to make the most of said normalcy, I find myself leaping to my old life – a life where I didn’t see my family, I made excuses not to see friends so I could just work or do less meaningful things. I told myself that I was going to do loads of things at Sandy this year, and I didn’t – as much as I wanted to. I should have spent more nights with Julz and Katy. I should have visited Anya more. I should have drank with Chris more. So many shoulda-woulda-coulda’s. Instead, I spent a lot of time trying to catch up with online stuff (such slow, at times non-existent, wifi). I spent quite a bit of time in bed – fatigue. I spent time that I have no idea where I spent the time?!
So there, Sandy Island: I‘ve been racing to get back to normalcy, racing to shed my death shroud, and I’m on the verge of disrespecting what I’ve been living through just to feel “normal.”
What is so great about normal?. Many of the years of trying to work as a freelance artist were financially crippling. The past years working freelance and undertaking clinical placement whilst feeling ill were exhausting.
Am I sick or am I better? Is a return to normalcy my goal or my loss? How can I maintain this profound sense of gratefulness for life, if I queue up in the same old lines?
Is my death shroud an exoskeleton I can to pull myself out of, instead of dragging it along?
This summer has given me the time to reflect upon this, and think out what’s next, and Sandy Island people are helping me figure this new chapter out, and reminding me just how lucky I am. I’ve never felt so loved in my life; and I am so grateful to be.
Special friends have showed me just how normal love looks. It’s not always a mad-dash to the airport, it can just be a heartfelt hug for you feeling better. It can be an incredible gift like a personalised book full of love and wisdom to help guide you when you’re not super sure what’s next. It could be a cool turtle dove as a reference to your most favourite movie ever (friends for ever — home alone 2!).
The gratitude i feel for all of this is completely over-whelming.
A pilgrim is said to carry all their back-path with them as they move forward. It is the back-path that brought us to where we are now. Without it, we cannot enter the path that lays in front of us.

So i’ve been asking myself: Can I make a future of the unknown and still be myself? Can I ever return to normal? And why do I want to?
Thanks for reading this far if you have.

Much love always, your friend – smizz x

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A World of Difference

Everything begins somewhere.

 

Very light muscle weakness, a constant-never-ending headache that refuses to disappear,  left facial numbness, drenching nightsweats, bone pain, constant appearances of shingles, heavy, regular nose-bleeds, a fatigue which drags you down & always wins. I tried to accept these changes as subjects of fascination — idiosyncrasies particular to my body. But nothing can prepare you for loosing a little part of yourself, for no justifiable reason.

 

 

In my early -to- mid-20’s, I thought I had things figured out. I thought I was invincible, in a normal every day way. I could take another codeine. I could push through the fatigue, the bone pain. But after awhile it gets actually really hard.

 

It’s very nearly christmas, and all I really want is to feel better again. I know that santa can’t bring me this, but I have learnt that everyday in itself is a gift – however cliched that sounds.

 

This hasn’t been an easy lesson to learn. And when I reflect over the year or two, or three, my whole life has changed in ways I would have never been able to conceive of – say, 4 years ago. If you had asked me 4 years ago if I was going to be working in Healthcare today, I would have been like – what are you talking about?!

 

But it was my experiences (both illness & drawing freelance for the NHS), and ultimately having 2 in particular doctors whose care has been inspirational, amongst many, many other amazing healthcare professionals, that pushed me into chasing my new healthcare venture.

 

I have been shown kindness in ways I never knew existed. We all have those stories of where a teacher has changed your life by believing in you, and taking extra time (I have like 5 of those stories) – if you fall ill, and are lucky enough – you have this story with a doctor, or two.

 

 

Like, the time I turned up at my GP (Dr Pieri) twice in one week, begging him to do something about this horrendous one-sided headache that was making me want to cut my face/head off. Twice. I’ve never-ever done this before but I was getting desperate – (it’s no ordinary headache) – and I needed to get back to just mild-medium pain to function relatively normally. I felt so ashamed of myself and guilty for going twice in one week, what a waste of his time? Who did I stop from seeing him? What will he think of me? I’m the reason why primary practice is struggling.

 

But he offered no judgement upon me. I got him to check my ears, maybe it’s an ear infection I mused? We both knew it wasn’t. But he checked for me because he knew that even though it wouldn’t help me directly,  it would ease just a little bit of my suffering. After checking my ears and saying “nope” out aloud, he put his hand on my shoulder for a moment. It was a hand of compassion. He gave me something for migraines and told me to call him with whether it worked. It didn’t, so I never called him. But I appreciated it in so many different ways.

 

A few weeks ago, I was seeing my endocrine consultant. I told him the usual, symptoms that he had no interest in – that couldn’t be explained by his field. He asked me if I had got back in touch with my other doctor, as he had wrote to me in August. I hadn’t actually received the letter – so I hadn’t replied to accept his help. My heart jumped, i sat up straight and at the end of my chair trying to peer at the upside down letter in my file. I was impressed that I hadn’t been forgotten about. The endocrine doc said, “Dr. Kersh has spent a lot of time thinking about all of this & trying to figure something out for you. He’s actually probably one of the only doctors who is actually interested.” This I already knew, but even this doctor was impressed with the extra time/help I was getting.

 

I’m a curve ball. I needed someone to game the system for me. I felt like I just needed someone to try. Someone who could understand just how delibertating this whole thing is, how I no longer feel like myself, how every day I feel like a hungover – windows computer full of malware and viruses. Dr Kersh made/makes me feel like I’m heard and understood, and what a gift to have – to make people feel less alone.

 

These 2 stories are just 2 tiny examples of the amount of care, kindness, generosity, compassion and time I’ve been given that I am forever grateful for. The extra time they’ve given me which no doubt made their clinics late, breaks probably missed, all the extra paperwork they’ve had to write, all the referrals they’ve had to justify. Words can’t match my appreciation of these people’s hardwork – the care they give to almost strangers – and I don’t want it go unnoticed.

 

Their actions inspired me to get into healthcare. As an artist, all I ever wanted to do was make a positive difference, and help rectify social injustices. I soon realized that actually healthcare is a place where this all comes together.

 

Anton Boisen (1960) coined an approach to care that is person-centred. From Boisen’s perspective, the patient is seen as a ‘living human document’, where practitioners learn about  dealing with illness by listening to, and studying, the responses of their patients. It’s person-centred in that it identifies the sacredness of the lived human experience and the wisdom found in ‘authentic experiences’ as patients respond and try to come to terms with the vulnerability, anxiety or other existential concerns that may arise in connection with their illness (Devenny, 2013). This completely resonated with me and my care.

 

 

It’s weird navigating the system as both patient and healthcare professional in-training. But I feel like I’m in the best place – I can now empathize with suffering which I didn’t before. I just knew it from a system, logical perspective – but now I know it, acutely.   I’m left wondering what is the relationship between empathy and understanding?

 

In the end, I don’t know if the old Smizz will ever return;  I feel profoundly, unmistakably different and broken in a way that’s hard to describe. But when I think about all the help I’ve been given by the super smart, funny, and personable compassionate doctors ( Dr Rod Kersh & Dr marco Pieri) it still takes my breath away when I think about it. I’m not just lucky that I have been given this compassionate care, but I’m lucky that I have some pretty amazing role-models for adventures in my future healthcare career. They’ve shown me that empathy is first an act of imagination, and the smallest of things can make the biggest difference.

 

Since it’s christmas, I don’t mind baring my gratitude for all to see. Thank you to all the amazing people working within the NHS. I will fight to make sure that we all continue to have access to life-changing, compassionate care for free.

 

I know that if I can take any of those guys qualities as doctors, I would become a better person – both professionally and personally.

 

With indebted gratitude and thanks, every day, all day.

Thank you for making a world of difference.

 

 

 

 

This one is for my mom

I do a lot of blogging about myself. And whilst I find it therapeutic and a good distraction from other written work I should be doing, I actually also hate being so self- absorbed (what a LOL!).  It’s a tough tension. However, this isn’t about me. This is a post about my mom. And my family (my bro & nan) and my home-made family of friends.

Life is a  rollercoaster of love lost and gained and changed. It also has the beautiful craziness of indeterminable timing.

My mom is one amazing lady. I’ve been at home in the Donx today. I’ve been locked away in my room working on some of my commission work for Sheff Doc/Fest. In the morning my mom woke me up, asked me where my brother was? Did he come home last night? I had no idea. I was in bed by 9:30pm. Deep sleep by 11PM. Geriatric is the new black. She called him, he was already at work – on 3 hours of sleep – hardcore bro. Relieved she disappeared. I pulled the duvet over my head. It was only 9:30am, I only had like, 9 + hours sleep. My mom came back in, and said, “now that I’ve woke you up. here’s a cup of tea. With 2 sugars, just how you like it.”

That’s like the perfect mom thing. She knows when I get up to work, I have to have a cup of tea to get the day started, and read my twitter feed. She knows it makes me feel warm. She knows I have a super sweet tooth. I never knew until today that she knows that’s what I do?

My mom’s one of the most strongest, selfless and bravest people I know. She’s courageous. And she will do ANYTHING for my brother and me. She has never seen us go without, and always made sure that we ate healthy and well, even when times were extremely strained and hard. We’ve been through a lot together; her domestic violent relationships, homelessness, cancer, death of  her 1st husband, financial difficulties, and a whole lot more together. And she carries on, determined not to defeated, and still puts us first.  She supports me whatever I want to do. She has been my rock throughout art-school,  giving words of support, even though she had NO clue what I was doing. I dragged her to 100s of art galleries in NYC even though she hated pretty much every minute, but pretended not to. Then after I graduated, she let me off with ALOT of rent when I was in between jobs, or saving to go back to the USA. Then after getting sick & doing some illustration work for the NHS, I decided that actually I’m really interested in Medicine and making the patient pathway the best it can be. So i became a student again, and here my mom is. Still supporting her fully grown kid 100% in whatever i put my head to.

I can’t explain to you, just how lucky I am to have my mom in my life. I am thankful and grateful everyday. And I know I need to learn how to emulate her selflessness in my own life.

A few years ago, I was told that it looked like I had cancer. Lymphoma. I was 1000’s of miles away from home. The oncologist told me to go straight home to deal with it. I didn’t believe it, however. And I wanted to stay in America and live my life, despite feeling shitty. I was planning a roadtrip! I refused to tell my mom for weeks. My boss cried on me like 2/3 times that summer, begging me to both tell my mom and go back home for the help I needed. I did neither. I’m brutally stubborn. I wanted to do this alone, I didn’t want anyone to feel like they had to help. I needed to deal with it, and also not deal with it. Then some how my mom found out, and I had to tell her over the phone (one of the most awkward phone calls I’ve ever had to make) and I’ll never forget that conversation. I forwarded her the letter of recommendation of care/treatment from the USA dr to her. I asked her to make me an appointment to see my GP for 4 weeks later for when I arrived home. She did this. But what I  didn’t know was that she called her best friend (my god-mother) and cried on her  3 nights in a row. (I’ve never seen my mom do this, ever). My god-mom facebooked me, my brother facebooked me. All pleading for me to come home. I of course, obnoxiously declined their help – and said “i’m fine!” . I still had a pretty awesome time in USA. My mom and I have always had a really strong relationship, so I assumed she would be cool with my decision.  I had no idea that by “protecting” her, I hurt her feelings more by pushing her away & not involving her.

Since then, the phone line between Sheffield and Doncaster has been open. My mom calls me even when she’s too tired, and she always listens when I’m not making any sense. I’ve been open to her opinions, and she’s respected my decisions. I’ve been allowed to cry, and she has lovingly held back her tears until the phone call was over. Our relationship isn’t flawless, but she’s been there every painful step of the way. I’ve never loved my mom more.

Equally, my brother is just as equally amazing. He picks me up from the train station. The other day he went to work 1 hour early so he could call into the doctors to get me an appointment for that day. He is extremely generous and I know that if I ever need anything, he wouldn’t hesitate to help me.

My friends, who are also equally amazing also have to put up with a lot of my shit. My lack of patience now, how I disappear to go to sleep early, hospital/illness/pain talk – like-all-the-time. Friends who live long distances, they have to put up with moaning emails about how I feel. And read these whiney blog-posts. They paid for my medical treatments/appointments in USA. They fed me and made sure I was ok. They make me laugh. They make me truly happy. And I never thank them or show them enough gratitude.

I could go on forever about how amazing my friends and family are. But ultimately I am the lucky one who has got to spend my life learning from some of the best people I know, being completely humbled by their awesomeness, and feeling happy because they’re amazing people. They make me want to be a better person, all the time.

Remember UK friends, it’s mothering Sunday next weekend. I’m planning something BIG for my mom. I hope you do too.

Love you guys,

Smizz! tumblr_mjf3us12zI1rkovepo1_1280

Humbled By All The Amazing Birthday Wishes. My message to y’all!

Just checked my Facebook, & can-not believe all the literally 100’s of birthday wishes I’ve received! In cards, in balloons, in virtual hugs, snap-chats, texts, emails, tweets. I literally just happy-birthday’d from all over, through so many apps and devices, and real life! I’m feeling loved, & grateful to be. Thank you so much friends for your amazing wishes, and an awesome day (yesterday, today and the days ahead!).

Birthdays, just like New Years, are a great way to reflect. Looking back to the beginning – the pain, the confusion, the journey- I can see now, that I was not being set up for one of the greatest struggles of my life, thus far. I was being introduced to the greatest source of inspiration in my life. The reminders of my incredible luck and blessings have been constant, often displayed in the outreach of others (including the majority of you guys). It slowed me down & gave me a bigger sense of gratitude.

As I’ve said like a bazillion times before, but it’s worth stressing again, for the first time in my life, I experienced chronic pain and fatigue – and still am. I realized how debilitating it can be, and how rarely we take the time to understand it in others. The experience was (is) humbling and, more than anything, made me much more aware of – and empathetic to – the hurt that we ignore.

While there are milestones that mark definitive progress, the transition back to normalcy is just that: a transition. The finish line isn’t a ribbon strung across a track; it’s a long, spaghetti junction highway. I’m waiting to merge into it, in my new crazy green Hollister coat.

We’re here for each other, and every day since this began, what feels like yeaaars ago-but it’s not-but it is-but it’s not, has been a reminder of that. It’s a lesson I won’t let myself forget.

Thanks so much for the company & the mixtapes for the ride, friends. Thanks for another great birthday!

Love always! Smizz x

PS: This is my new dog, Blue! My surprise birthday present!!! He’s so sweet, gentle, funny and massive! (He’s a family gift, of course).

 

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Gratitude Journal

A few days ago I followed a link to one of my awesome artist friend’s blogs (check it here). On this blog she wrote a list, now any regular reader of my blog will know I love a good list! On this list was a reference to an iphone/ipad app called Gratitude Journal.

Apparently with this app you write down five things you are grateful for each day in your Gratitude Journal and your life will change forever. Do this for at least one month.

I’m pretty sure life won’t change forever (i am a cynical Brit though). However, list keeping keeps me and my productivity and goals in check. The only major problem I have with this app is that – yes – it’s for people who are already RICH enough to own an iphone or ipad. Yeah. I’m guessing if you own either or both, your life is already kinda sweet! But never fear, just ‘cuz i’m so poor I can’t afford an iphone or ipad (she says typing on her sexy macbook pro) doesn’t mean I can’t change my life forever.

Plus who knows, if i really do have something horrible like lymphoma, then who knows how long i will be around for! I gotta start being (more) thankful and living the life i should live: To the max.

So here it is: http://runningsmizzlol.tumblr.com/ The new smizz gratitude journal.  <——-

 

Lets see if my life really does change, foeverrrr. (Or at least my attitude 😉 )

The rules?

  • Each day write down at least five good things
  • Add photos, rate the day, record the weather and bookmark
  • Do this everyday for a month and see your attitude change