It has been a hundred years since Prime Minister Asquith declared that Britain had joined WWI. Very public memorials and commemoration ceremonies will take place around the country to ensure that those who gave their lives are never forgotten. But how do those of us who didn’t live through it and no longer have family who can share first hand stories honour the fallen with real feeling?
Letter to an Unknown Soldier is a project attempting to put the nation’s thoughts and feelings on a cruel but increasingly distant war into a very special, modern kind of memorial. We’re all invited to write a letter to the unknown soldier who stands at Paddington Station reading a letter from home. To date, he has received almost 18,000 letters and all submissions will be archived at the British Library, where they’ll be made permanently available online.
The death toll for WWI was so immense that it became almost impossible to summon the resources to return soldiers’ bodies from the Western Front. So they stayed there, buried without headstones displaying their names.
What’s nice about this project is that apart from the 500 word limit, you can tell him whatever you like. There are no rules. Reading through some of the letters already submitted, few people have taken the same angle. Some have retold stories belonging to their own heritage. Others have expressed their sadness that he and so many other young men died such painful deaths, seemingly without reason. Children have drawn pictures or written poetry. Some have chosen to tell him how the world has changed since he departed it, while others have just wanted him to know that his bravery has never been forgotten.
My interest in social history has always been in the finer details of everyday life. An ordinary day in someone’s life is infinitely more exciting to me than a spectacular one. What did they eat for breakfast that day? What did they talk about at work? What did they worry about or laugh at? Over 12 million letters passed through the Army Postal Service every week. That’s a staggering figure, but it was all they had. It was their only way of communicating with the people they loved. There was no television or social media or mobile phones. We forget, these days, what a luxury technology is. It often feeds us too much information. In 1914, there were just letters. I wonder what was written inside these millions of letters. Which pieces of news did they pass on to each other? Were they honest or did they aim to spare each other’s feelings?
As a writer I’m a storyteller first. When I looked closely at the soldier I didn’t want to tell him what the world is like now or how sorry I am that he didn’t make it home. I wanted to know what was written on the piece of paper he’s holding. My letter is from Elsie to Edward. The reality of what this war means is beginning to sink in for Elsie and she’s caught in a moment of desperation and panic when she writes to him. She’s a clever woman. She knows that what little she sees of the war isn’t the full harshness of it. Whatever she suspects Edward sees every day, she knows it must be far worse. That doesn’t stop her wanting the reassurance that her imagination is running away with her though.
You can read Elsie’s letter here and listen to me reading it by clicking the audio player below. I’d love to know what you think of their story. If you want to write him a letter of your own, you can do so by clicking here and submitting before 11pm on August 4th.
Are you safe and well? I ask, not knowing when these words will reach you nor how soon the paper touched by your hand will find its way back to mine. But please do write, darling.
Days are so long knowing you won’t be opening the door of an evening. The nights even longer without your hand brushing my shoulder. I never imagined it possible to miss the rumble of your snoring. I do.
I keep busy. Though, I’m told to rest. I don’t like to sit mithering. I picture terrible things. When I’m fretting I read the Beatrix Potter book you gave me. That naughty fox! I read the note you wrote inside, “Happy Christmas to my Christmas angel.” If I read your handwriting out loud I hear your voice crystal clear, telling me to stop being daft crying at a children’s book. I’m laughing thinking about it. Are you smiling too, Eddie? I’m hearing your laugh as if you were here. Please, love, write back so I can read your words aloud and hear your voice again.
You are so very brave. I’m proud knowing my husband is fighting to keep us safe. This war will be finished soon. It has to be. When it’s over, you’ll come home. They will call you a hero. People will hold doors open for you, buy you beer and tell you how grateful they are to you. I know it.
What’s it like there? Tell me honestly. I asked one of the injured boys who got sent home when we had a tea for him. He didn’t tell me. He wouldn’t. Do you eat enough? Can you have a bath? Is it cold? I knitted a scarf so you’re not chilly. You know how tight your chest gets. I put a touch of my violet perfume on it to remind you of me. It’s the one you like. The one that makes you quite silly.
Forgive me for saying, but Annie got the dreadful news that her brother was shot. It tied a knot in my stomach. They can’t even bring him home. He will lie there forever. Can you imagine? Of course you can. My heart breaks for her. That’s why I had to write to you today. I knitted all night. I will write every day and knit a hundred scarves if I must. Don’t be cross that I wasn’t sleeping. I couldn’t settle while thinking of poor Annie. At least my hands were useful.
How to close these letters when I don’t want them to end? I want to talk to you about tittle-tattle until you kiss me to stop me bending your ear, like you always do. It’s curious what you miss. Do you miss home? I know you do, but I want you to say it. Write it, rather.
Be careful, Eddie. Do what you must but don’t be foolish. The little angel growing inside me needs to meet its father.
SPOILER: This post gets a bit ‘Californian’ in places. I apologise and will return to Wales by the end of it.
In a couple of weeks I’ll be having my last counselling session of this second batch. The counsellor’s asked me to start thinking about how we’re going to wrap it up, what I’ve learnt about myself and my physical illness during the process, any final topics I’d still like some guidance on and what I’m going to do to keep up my good work. I may return to those things here after the final session if I feel it’s appropriate to discuss some of them publicly. But first, a little uncharacteristic bragging.
Even if you don’t know me personally and only know me because you happened to stumble across this blog series, you’ll probably have realised by now that I don’t really do bragging. I certainly don’t indulge in repeating praise. But my counsellor said some things about me this week that floored me. They made me feel so good about myself and for once I felt able to agree with her. Maybe the fact that I, albeit reluctantly, nodded my head in agreement is one of the process’ biggest successes.
She called me a ‘dream client’, which seems both an unusual compliment and little overwhelming. I mean, you could assume that if you’re a therapist’s dream you must be so screwed up that they can’t get enough of fixing you, but that’s not the case. What she meant (and I’m using her words here) was that I commit myself completely to being better, in a way that a lot of people can’t manage. I’m authentic. I don’t walk in there and make excuses for myself or try to hide. I take responsibility for my actions and feelings, even if they’ve been negative. I make notes between sessions so I don’t forget anything. Most of all, I work hard and reflect on everything in the name of improving. In the name of getting even further away from the destructive thought patterns that caused so much damage in the past. And I guess that’s what all counsellors want most – someone who engages fully with the whole purpose of attending. Someone who can spend an hour answering “How does that make you feel?” honestly without trying to dress it up. And to puff myself up a little more, the counsellor I had last year said much the same things.
Just typing that last paragraph made me wince. Some of those plaudits made me feel a little sheepish because they’re not really choices I make. They’re just elements of my personality I don’t think I could change even if I wanted to. And she acknowledged that probably one of the reasons I’m an effective writer is that I deal well with expression and have a skill for empathy, so that carries forward into a setting where I ramble about feelings for 60 minutes without pausing for breath. Which sounds bizarre considering I’m fairly private, but there’s a difference between sharing your thoughts and letting the world look in on your most private business.
Ultimately, though, this process has just been a lot of hard graft and will continue to be so long after the sessions end. I don’t think it’s that obvious to many people how hard I’m working to be the best person I can be while managing this illness. Most people can’t see it first hand and a lot of it is just stuff I navigate internally, both emotionally and physically. Whatever the reason for going to counselling, never let anyone tell you it’s easy. Even the more positive sessions can make you crash for a day or so afterward. It’s tough, and just agreeing to give it a try takes a lot of courage. There hasn’t been a single week where I haven’t sat breathing deeply and drumming my fingers on my knee waiting for the counsellor to appear in the waiting room and call me through to her office.
To get the most out of the opportunity – to have waited four months to be called on the NHS means it really is an opportunity – you have to make that time count. In an ideal world I would wave a magic wand and have my physical illness disappear. I fantasise about it, but that’s never going to be an option, so my best shot at happiness comes from putting the work in and learning how to deal with the limitations it puts upon me better. I’ve said it before, but this illness and handling it on a day-to-day basis is built on shifting sands. Some days I just play symptom roulette and it changes by the hour. This week, for example, my balance was so off that my brain perceived that I had one leg longer than the other. That happens randomly, you know, just to spice things up a little. As soon as I think I’ve got it figured out, it changes or I have to deal with a new setting or situation. That uncertainty and unpredictability is so frustrating. All I can really control in the fight against letting it rule my life is how I react to it. That’s a continuing challenge.
During Part 36 I talked about how completing 50 walks to the coffee shop, measured with stamps on my loyalty card, had felt quite flat, even though everyone gave me a huge round of applause for hitting the half century milestone. I used one of my counselling sessions to bring it up and we came to the conclusion that I was repeatedly trolling myself. A hundred people could tell me they were proud of me, but that one voice laughing at me (my own) cancelled the good stuff out. It was as if someone was sat on my shoulder telling me my efforts weren’t good enough and that I was a loser for thinking that something as simple as walking a few streets to a coffee shop and back was any kind of achievement. It was something to be proud of, but I was still comparing my life now to the life I had before I became unwell four and a half years ago. Subconsciously, anything less than that was pointless. What I had to do was catch up with everyone who’s been on this journey with me and start reframing my achievements based on the fact that I am now living as a disabled person.
This weekend I cashed in my sixth Coffee No.1 loyalty card. That makes 60 walks there and back since I started collecting the stamps back in the autumn. This time I felt much better about it. I resisted the urge to troll myself. I allowed myself to feel proud, because that’s 60 times I pushed my body to do something that makes me feel really poorly in the name of not letting the illness win. The troll was still there, but every time it piped up I tried to brush it off my shoulder.
Counselling isn’t the soft option. You don’t just push a button and make everything better. What it does is give you the tools to be better, and it seems with this issue in particular they’ve just started chipping a way through the years of self-deprecation. If you take those tools, work hard with them and keep flexing the muscles needed to make them effective, they will make a difference. The real trick is using them without a supervisor telling you which to pick up and when. But I’ll never stop wanting to be better, and with the threat of returning to a place where chronic illness controlled my life and made me persistently angry always waiting in the wings, I’d better keep ticking the ‘works well without supervision’ box.
Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.
As I suspected last weekend, and by suspected I mean hoped, the Saturday where I felt that my illness had completely defeated me slowly passed. By Tuesday I was still feeling very unsteady on my feet but I really needed to go out and grab a few things. It was the only day where the humidity lifted for a while, so I capitalised on the opportunity to try walking in a slightly easier environment. I also didn’t want Saturday’s scarily bad walk to put me off trying again. I find that once you let fear set in, it creeps over you and convinces you that you’re not capable of things you’ve achieved before. It was a very careful, slow and difficult walk but I rather pleasingly managed to put Saturday to rest without having to throw myself toward walls for support this time.
Physically the rest of the week was pretty rough. The weather has been hot and humid and even those not trying to manage an illness have been struggling. There can be nobody in the country who didn’t have a headache or lose sleep to thunder storms. For me and for others who live with vestibular disorders, the heavy air pressure and heat make symptoms significantly worse. My condition is actually called Vestibular Hypersensitivity. The clue is in the title. My balance system is basically a drama queen. The part of my brain that understands my body position and movement is so overly sensitive that it thinks I’m moving 24/7 and makes me react to a position I’m not even in. Hence why I feel like I’m falling so frequently throughout the day. Anything that impacts upon my inner ear increases that sensitivity. I can feel the air pressure changing before anyone else. Like the way birds know when a storm is coming or Karen’s boobs could tell her when it was going to rain in Mean Girls.
Wednesday was bad. I was so wobbly, dizzy and sick that I couldn’t even sit upright at my computer. I kept slumping and falling. Initially I was frustrated that it looked as if I was going to lose another work day to illness, but I was determined that I wouldn’t. After a lot of shuffling around I found that I could manage a little better if I moved my computer to the coffee table and sat on some cushions on the floor. I still felt the same way, but when it got too wobbly I just had a lie down on the cushions for a couple of minutes before getting back to work. It wasn’t perfect but it was an adjustment that worked.
That word ‘adjustment’ is loaded for me. It’s one of my vestibular rehab therapist’s buzz words. “Think of what you’d like to do, then make an adjustment and do it in a different, manageable, safe way.” I hated when she said that because the adjustment still felt like failure. For a long time I was angry at her for it. Actually, not so much angry at her. I was angry at the illness and how it made even the simplest of tasks things that needed adjusting. I just passively directed my displeasure toward her because she was the one telling me to do it and I couldn’t accept that it was necessary. But to have sought out an adjustment on Wednesday and to have genuinely accepted it was pretty big. It wasn’t just acceptable, it felt good that illness had tried to steal a productive day, only for me to find a way of stopping it at least taking some of the day. It was an important shift.
For the rest of the week the weather has remained much the same and it seems to have set in for at least another week. I’ve accepted that if there’s one thing I have no control over it’s the weather. I was already feeling tired and extra dizzy. Being angry about how much worse it made me feel would waste valuable energy I couldn’t afford to lose. Which is not to say that I’m feeling good. In all honesty I’ve been feeling pretty horrendous. And I won’t pretend that I didn’t have the odd moment of complete, desk-thumping frustration thinking about all the things I could be doing instead. But I’m learning to pick my battles. It was okay that I didn’t go out walking much this week. I did as much as I could manage and that’s fine. I made some adjustments and they didn’t feel like failure. I’m the boss.
Now I defer to Michael J. Fox, who manages to say in two sentences what’s taken me over 700 words. But that’s why he’s Michael J. Fox.
Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.
When I was a kid, we went to a wartime exhibition which included a WWII air raid shelter. I stepped inside and proclaimed loudly that it didn’t seem so bad. There were blankets, light, food and enough room to comfortably house everyone I loved. Then the air raid sirens started to blare. Flashes, plane propellers and thundering vibrations designed to simulate bombs dropping altered my perspective. It occurred to me then that I probably had no clue what my grandparents had gone through during the War. Where every tiny clatter might indicate your sudden demise. It’s the kind of terror I’m thankful to have never experienced.
In the West we’re very rarely touched by war these days. Several generations have passed since it was something we had to realistically fear. If you have a relative in the Armed Forces it’s probably on your mind every day they’re not at your side. On their return they may relay some of what they’ve seen, but we can never see it through their eyes. If you have a vested interest in a faraway war-torn country you’ll feel the news reports harder than those who don’t. And, of course, there have been devastating acts of terrorism on the West that have shaken our trust in our own security.
The part of war I’m referring to, though, is the sense that every second of your existence is influenced by it. I say ‘existence’ because nobody is fully living when trapped inside a warzone. You keep breathing and get through the day. When your family leave the house in the morning, there is a genuine risk that they may not all return in the evening. You maybe don’t sleep that well through worry. You’re afraid to let your children be outside. Every day is about surviving until the next, with the hope that one day it’ll all just stop.
It’s hard to put ourselves in those people’s positions because we don’t live it. My faith in human nature suggests that when a mother is sobbing over the fact that her child has been blown up in the street, we’ll all feel her excruciating pain ourselves. But Israel and Palestine have been at loggerheads and have fought over the Gaza Strip for centuries. There’s a part of us that knows it’s too big for any of us to influence individually. When the wars in Afghanistan and Iraq were at their most ferocious, the daily death toll became just a number on the news. It became almost normal to hear that 40 people had lost their lives travelling on a bus across Baghdad. There are customs, locations and traditions that seem so unfamiliar and alien to us, it’s hard to grasp what their lives must be like. We shake our heads at the devastation displayed on the six o’clock news, but it’s difficult to stay in that moment when we’re cooking a chicken dinner and flicking on to a piece about the pitfalls of car insurance small-print on The One Show. War is filtered for us by TV screens. We think about it briefly and then go on with our everyday lives. War, while heartbreaking, is something that happens to other people. Until this week.
It is increasingly looking as if the bringing down of Malaysian Airlines flight MH17, on which almost 300 people perished this week, was a very deliberate act. The politics of how and why a passenger plane was taken out of the sky with a missile over Ukraine is still worryingly vague. The reason this event has disturbed us, far more than when a plane crashes through mechanical failure, human error or bad weather, is because war has come to us. We know the people on that plane. They are us. They are people whose lives are like ours. They’re the football fans we sing along with, the students we share a beer with, the doctor we saw when we were feeling poorly and the children our kids play with at school. They are our parents, brothers and sisters, children, friends, colleagues. It could have been any of us on that flight out of Amsterdam. The randomness of it is chilling. War kills thousands of innocent people around the world every day, but it’s only when we recognise ourselves in those who found themselves caught in the crossfire that it hurts this much. Sympathy becomes empathy.
TV news reporters and picture editors have been, quite rightly, cautious in what they’ve shown us of the crash site. The purpose of news reporting is to be honest, but it should never be gratuitous. If you go beyond the filter and flick through the banks of press photos available, as I have, it becomes even more apparent just how familiar the people who’ve lost their lives are. Looking wasn’t the morbid fascination of rubbernecking a car accident on the motorway. It was just wanting to understand the reality of what had happened. The word ‘harrowing’ is thrown around a lot as part of hyperbole, but some of those pictures churned my stomach.
The juxtaposition of death and burnt out mechanics against the luggage contents strewn across the site is distressing. There are travel guides, broken laptops, children’s games and toiletries piled in corners. You can’t help but wonder about where the passengers were going and what they were going to do when they got there. The giddy excitement of seeing new places and relaxing is intoxicating. The anticipation in getting on a plane heading off somewhere exotic or knowing you’re on your way home bubbles throughout the cabin of every flight. You think about how happy so many of them were to be going on family holidays or sharing their work; it’s been reported that several of the passengers were doctors and academics travelling to a conference on AIDS research in Melbourne.
There are images of bodies, ripped, mangled and sometimes bloated, lying naked for all to see. Their presence noted by sticks with scraps of white fabric attached to them. They must have lost their clothing during the fall or the fire. Most chilling are the pictures of people still strapped to their seats. Locals suggested that following the explosion people started falling from the sky. It makes you wonder how aware they were of what was happening to them. Were they just falling, terrified, attached to a plane seat? There is an image I’m struggling to describe sensitively because it was so graphic, but there is a picture of a child lying still attached to their seat. You can only hope that he or she was gone before they felt any suffering. The images are a gut-wrenching reminder of how fragile human beings really are.
By far the most upsetting thing about the entire scene is the abstract indignity of it all. We have such intense respect for the dead, it’s customary not to speak ill of even our worst enemies. Funerals and memorials celebrate lives and send our loved ones off into whatever comes next with quiet care and ultimate discretion. We have a cultural understanding and a trust that we all have a right to a dignified end to our lives. The sight of innocent, broken holidaymakers dropped into baking hot wheat fields challenges all our beliefs about what death looks like.
To add to the injustice, it’s been suggested that belongings have been looted, bodies have been moved without permission and vital forensic evidence has been spirited away. As if knowing where your loved one is lying isn’t awful enough, the idea that efforts to repatriate them and explain their loss are being sabotaged because of a war they played no part in is doubly painful.
This is the reality we rarely get exposed to in the West. War does not discriminate. It is cruel. You could come up with countless theories on why the young family who changed airlines at the last minute and weren’t on that flight were spared over those who stepped aboard. But war isn’t that discerning. It doesn’t care whether you’ve contributed significantly to medical research or if you’re travelling to do charity work. It doesn’t matter how young or old you are. It’s not important if you’re a good person or even whether you have any interest in either side’s plight. All we can really do is hope that those we elected into political power will band with the rest of the international community and demand answers.
As individuals we can try to live as fulfilled a life as possible. Giving love, holding on tight to the people who make us feel good and making every day count, even in the smallest ways. We argue over whether life is long or short, but potentially life can be stolen from us when we least expect it. We owe it to those casualties of war who didn’t have the opportunity to reach their final destination to make the best of it.
When I started writing this series I hoped it would achieve two things. Primarily I wanted it to be a timeline for myself that I could reflect on when I felt I wasn’t achieving anything. I always am, but it’s easy to forget when you’re living it every day. It really has been successful in that sense. I don’t read back as much as I should, but I have no doubt that writing a weekly record of my highs and lows has spurred me on to do more.
I also wanted it to be a way of helping my friends and family understand what I’m going through so that the confusion and occasional misunderstanding it brings about is less of a burden to them. One of the biggest problems with having an invisible chronic illness is that people assume you’re fine because you look fine. A lot of the time, all you really have the energy for is crawling up in a ball on the couch. Trying to get that across without just seeming like a lazy oaf is tricky. I guess you’d have to ask them if I’ve been successful in making chronic illness understandable, but many of them have told me they hadn’t realised how much impact it’s had on my everyday life until I broke it down.
The third result of this series was a nice surprise. So many people living with similar illnesses to mine have been in touch to thank me for finding the words to express what they feel too. I’m never entirely sure how unique my experience is and I’d never wish it upon anyone, but there’s a lot of comfort in someone saying ‘me too’. So if I’ve helped them feel less alone in the process of speaking for myself, that’s great.
Sometimes it’s hard to know how to explain to someone who hasn’t lived with illness how you’re feeling on days like I had yesterday. It’s such a raw, exhausted state of mind, it’s almost impossible to express. But having made a video this week on how one of my special professional skills is transferring feelings into words, I’ll do my best.
I’ve struggled physically this week. The past few weeks have been big, physically and emotionally, and I think they’d started taking their toll on my stamina stores. A lot of those big things were positive, but they’ve all been stuff I had to push for and push through. Just going through counselling alone can leave you a little winded, so add on top of that the things that I’ve achieved and an illness that makes me feel like I’m being shaken 24/7, I was running my body on a skeleton staff.
I went out during the start of the week but I really wasn’t feeling well. Come Wednesday, the only reason I went out is because I had a counselling session, which was quite the rollercoaster in itself. Thursday and Friday I stayed home and worked. I was just too wobbly and shaky to attempt walking anywhere. Yesterday morning a little cabin fever was setting in. It’s bizarre. There were whole years where I could walk and be in busy environments so little that all I could do was go to work and come home again. To preserve what little sanity I had left, I let it become normal. Nowadays, it only takes a couple of days before I’m desperate to get back out again. Which, as a friend commented yesterday, shows how I’ve probably got more normality in my life than I feel I do at times.
I kind of knew I wasn’t up to a walk yesterday, but I went for it anyway for the sake of getting some fresh air. It didn’t go well. I spent the entire walk stumbling over myself, stopping, reaching for walls and forgetting to breathe because I felt like I was falling so regularly. Even before reaching the shops I felt like I didn’t have enough stability to go on. I had to have a stern word with myself and stop myself from crying in the street. I knew if I let emotion steal the little puff I had left it was game over. I got everything I needed and slowly made my way home. At that point it really was game over.
I was hit with a crashing wave of exhaustion and failure so intense that I felt like giving up and giving in. It was such a terrible walk and felt like such an enormous step backward that I couldn’t even remember what I’d spent the past four and a half years fighting for. It didn’t feel worth it. I was completely defeated for the first time in quite a while. As I remarked on Twitter during yesterday afternoon, when you have a chronic illness, you spend an awful lot of time fighting, pushing and trying to make the best of bad situations. There’s no rest from illness. It never goes away. Some days are just better than others. You don’t mention it to people every day because you don’t want to get boring. I bore myself with it. Sometimes you lose sight of why you’re fighting, simply because you’re out of juice and can’t imagine where you’re going to find the next injection of moxie.
I spent the rest of the afternoon parked in an armchair watching Curb Your Enthusiasm and Oprah interviews, trying not to be freaked out by a sensation I thought I’d banished. The fact that it’s been so long since I’d felt like I was losing to illness is actually a very good thing. It means the expanses of time between those episodes are getting bigger. In all honesty, there were years when feeling like I would never get a handle on the illness and gain some control over it was pretty much my default setting. Knowing I should try not to let myself get freaked out by it was important too. Counselling and experience have taught me how crucial it is to be able to sit with the bad days (or weeks) without assuming they’re here to stay. But still, yesterday was scary. When you’ve been able to chase that level of negativity and failure away for a while and it suddenly appears to smack you in the face, the punch feels that much harder and takes longer to recover from.
Today I don’t feel entirely out of the woods. Partly because my body’s still tired and because the muggy weather’s making just sitting in this chair feel like I’m being violently spun, but also because it takes a while to build up the emotional strength to start fighting again. Knowing I had to write this post today is helping. Nobody wants to sit and read a thousands words of me whining about being a loser any more than I want to write it. So maybe this series has a fourth purpose. Knowing that once a week I’m accountable to myself and to you here means I don’t want to let either myself or the people reading this down. So I guess the fight’s back on if you’ll all help to prop me up while I can’t do it myself. And for the next time I feel defeated, I have new dinosaur pyjamas on the way. Dinosaurs make everything better. Rawr!
Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.
I fancied blogging about writing today, but I wasn’t entirely sure what I wanted to say. I’ve rambled about it in a video instead. Hope you find it enjoyable and maybe even helpful.
If you want to read the CHIKARA post I mentioned, click here. If you’d like to listen to an audio version of me reading Me and Tennessee, also mentioned in the video, click here. It’s about a 20-minute listen.
Otherwise, here’s the video.
I hate hospitals. I hate the smell. I hate how hot they always are. I get it. Sick people need to stay warm to keep their defences up. But those dark, stuffy corridors do nothing for my already far too warm blood. Also, with the exception of the maternity ward, I can never shake the feeling that everyone’s there because something’s wrong.
I’m fine if I’m visiting someone else. I remember how relieved I was when familiar faces appeared at my bedside when I was stuck in my hospital bed following surgery a couple of years ago. They were achingly long days, literally and figuratively, where my only view was the woman pestering nurses to wheel her out for a smoke and the delirious elderly lady who regularly mistook the floor for a bed pan.
This week I’d been called to the vestibular rehab centre for a check-up after over a year. For the first time since becoming ill I had to do it alone. The prospect of just being in the hospital, making my way through hordes of people and tackling the maze of corridors to bay 14 without an arm to hold on to and company in the warmest waiting room known to man was a daunting challenge by itself. Knowing that once I was there I was going to have to discuss everything that’s happened over this past year made it feel even more like something I wanted to cancel. I didn’t.
Thankfully, I didn’t have to spend more than 20 minutes in the waiting room and they’d put two large fans in there to offset the molten air. Some time ago I had walked into the rehab therapist’s office, burst into tears before even siting down and very clearly said “I don’t think I can do this anymore.” I don’t know what I expected her to do. I knew there was no miracle cure. But I just didn’t know what else to say. I wanted it to all go away.
It’s making my eyes well up recalling that moment because I’d never felt so much that my life had been stolen from me, with no way of getting it back. She sent me away that day with a few new things to try, but really, I still felt lost and slightly abandoned. I felt like a number being ticked off a list. It was one of the first indications that I really needed some counselling to help me accept what this illness had done to me. And if I was going to get it, I’d have to figure out a way to do it myself.
This time, walking into her office felt quite different. Telling her everything I’d been through over the past year or so and explaining how proactive I’d been in the face of such adversity felt pretty great. I didn’t just relay everything I’d tried in learning how to walk a little again and in managing difficult environments, but in beginning the painful process of grieving my old life and building a brand new one from scratch. I was still very aware of my frustrating limitations, but placing who I am now against the frightened, broken woman who had sobbed in that same chair a year or more ago, it was a stark reminder of just how hard I’ve worked. She was impressed. I may even have been a little impressed with myself. It’s not often I feel that way.
We talked about carrying on working hard, but not to the point where I exhaust myself. If you’ve read any of this series you’ll know that’s a bigger challenge than it sounds. We discussed how I might start doing my exercises in low light and in the dark, where I still have a fairly major struggle in staying upright. She reminded me to try moving my head and looking around when I’m walking. Not to where I’m putting myself in danger of falling, but I do tend to hold my head pretty still because I’m concentrating on walking in as straight a line as possible. And finally, we discussed the reality that this really might be with me, to a certain extent, forever. That thought is never comfortable, but it’s one I’m learning to live with.
Before leaving she announced that she would now be making me an ‘open appointment’ patient, where I stay on their books but they won’t need me to come in for any appointments. It’ll be on me to decide if and when I need them. You call us, we won’t call you. There’s something slightly scary about that. It has a finality to it. Like they haven’t got anything else they can do for me and the responsibility to live the fullest life I can with my disability is entirely down to me now. But there’s also a freedom to it too. It means I’m coping well enough that they trust me to look after myself. And if you felt able to watch the video I made last week, you’ll understand just how much being able to do that means to me.
One of the only advantages of going to the hospital is that they have a Starbucks in their concourse. Going there on the way out had been keeping me going throughout the day. I’d planned on grabbing a drink and leaving, but it felt like an important day, so I stayed and let the enormity of it sink in.
I bought myself a new mug on my way out to mark it too. Just being able to sit there was something I don’t think I could do the last time I went to the rehab centre. The fact that I’ve sat writing the first draft of this post in a coffee shop, next to open windows and with cars flying past (albeit while feeling like I’m drinking cappuccino on a cruise ship in a storm) is so far beyond what I could have imagined the last time I sat in her office. It’s quite overwhelming.
So this is it. This is my life as a disabled person and I’m very slowly getting to a point where it’s just a little bit okay. I won’t pretend that I’ll definitely feel fine about it tomorrow or even an hour from now. I think I run a gauntlet of emotions with it every day. But the moments where I feel like I’m doing alright are precious, because they just didn’t exist at all in the past. One of my favourite songs is a country song by Pat Green called Carry On. I’ve listened to it a lot this week. It’s about being fed up with everything and taking a break for a while before you crack on again. I can’t have a holiday at the moment, but the little moments of quiet where it feels like I’m coping or winning are a mini-break of their own. As Pat would say, “I’m okay. I’m alright. Carry on.”
Trying to make the best of a bad situation doesn’t take the bad stuff away. It doesn’t make the fact that I was so dizzy on Wednesday I spent most of the day throwing up. There have been times this week where I’ve been so tired and in need of a hug that it reduced me to tears. And yesterday I kept being gripped by the kind of brain fog that makes your tongue and lips work against you in a way that speaking a simple sentence feels like you’re practically having to chew it out. But those days don’t necessarily make the good ones any less valid either. I would like some more of those, please. And if the universe is listening, feel free to sprinkle a little magic into them too. I won’t complain.
I went on a little adventure yesterday and somehow I managed to pull off what I was trying to achieve. I talk about it in this video. For someone who likes to avoid showing their hand and allowing anyone to see their vulnerability, this was a really difficult video to record and an even more nerve-wracking one to hit ‘Publish’ on. So I ask, as always, that you please be kind.
The nausea brought on by vestibular disorders is difficult to explain. The sensation comes from your brain, not your stomach. Although it certainly impacts upon it. It’s perfectly possible to be starving hungry but also not feel able to eat. I’ve got a memory of standing in the Selfridges food court both crying and laughing at the fact that my stomach was rumbling but I felt too sick to eat. I avoided eating after 3:30pm the night we went to the Little Mix concert, knowing the noise and lights would make me feel queasy. But I also had to eat a hotdog right before the main show started because I was so hungry. Not that devouring a giant hotdog with onions and mustard is ever anything but one of life’s delicious pleasures, but I definitely had to eat it slowly.
If you’ve ever been on a boat and experienced that queasy sea-sickness feeling that if you don’t stop moving you’re going to lose your lunch, you’re close to understanding it. It’s just a little more unnerving when you’re on dry land and you feel that way because your brain can’t compute your actual body position. It’s been fairly persistent for me for such a long time now that, to a point, it’s become normal to feel nauseous every day. It’s never comfortable or pleasant, but on the days where it’s less intense I just deal with it and get on with my day. Sometimes I have to just not eat until the worst passes or until my medication kicks in and helps it to ease. I certainly don’t let illness stop me from eating if I can help it. I enjoy food too much and will fight this thing to the death for the love of food.
This week was my birthday. For the past few birthdays I’ve not done a great deal. To be truthful, going out to eat and being in busy, noisy places can be hard work and it’s always been the easier option to stay close to home and be as comfortable as possible to avoid ruining my birthday feeling really unwell. This year, I didn’t want to take the easy road. I wanted to be in charge of my illness, not have it dictate how I spend my time.
I live in a cosmopolitan capital city and am spoilt for choice when it comes to restaurant options, but the only place I wanted to go was Pieminister. Pies too are one of life’s most wonderful edible joys. All I wanted was pie, mash, peas and gravy. In Cardiff, Pieminister is right in the heart of the city centre. It may have been a slightly mellow Wednesday night in town, but it still meant a cab ride to the most active part of the city. I was determined that I would go to precisely the place I wanted to go and eat exactly the meal I’d been thinking about all day. My birthday was one day where illness would not be allowed to tell me what I can and can’t do.
The meal was everything I wanted it to be. It was relaxed, fun and the food was great. I can’t wait to go back. There were a few moments where I struggled. The seating wasn’t as comfortable as I tend to need it to be and there were a couple of very spinny, queasy moments. But I kept it to myself and let it sit there quietly in the background. It’s a big deal to be able to do that, because it takes a lot of physical and emotional control to feel unwell but not let it grind you down and ruin crucial moments. It doesn’t work every time. Some days you’re just too fatigued to fight. But I won that round and it felt fantastic to beat those restrictions, even if I didn’t actually feel fantastic
I’ll just take this opportunity to thank everyone who made my birthday so lovely. I can’t remember the last birthday where I felt so highly thought of. So if you sent me a card, presents, a message, a text, called, sent a video message, sang happy birthday to me or shared your day with me, thank you. I rarely, genuinely don’t expect to be a priority. Out of habit I even kept my birthday fairly quiet, much to the disapproval of several friends. The fact that such a large number of friends wanted to contribute to me having a great day and given what I discussed in last week’s column, you can be assured that it meant the absolute world to me.
This was a rollercoaster of a week. There were some pretty good days, but there were a couple of really tough days where I didn’t cope very well. In fact, I was almost embarrassed at how badly I handled them. I’m constantly apologising to people in case I’ve been difficult to deal with. Mainly because if I’ve been fed up of dealing with myself, I assume everyone must feel the same way. But on one day in particular I was fairly rude with people who didn’t deserve such abrupt exchanges. Hopefully they understood.
On Tuesday I hit a bit of a milestone. Actually, not a ‘bit’. It was a big one. I filled another coffee shop loyalty card and handed it in for my fifth free coffee, making it 50 walks to the coffee shop since I started collecting stamps back in the autumn. I felt that frisson of excitement in swapping it for a free latte, and I shared the picture of the completed card on social media.
Everyone congratulated me and told me how amazing I am. But I didn’t really feel like I’d achieved that much. I should have, but I didn’t. Part of me felt uncomfortable accepting applause for something that seems so basic. At least, basic to everyone else. There was something about the 50 that should have felt spectacular, but it felt kind of flat. I brought this up in counselling this week, because I didn’t quite understand why I couldn’t believe the praise was genuine. After a lot of discussion it became clear it was because where I worry that people are laughing at me for the things I can’t do, I’m really just pointing and laughing at myself. There’s a little voice in my head that keeps telling me that I should be doing more because this just isn’t enough. Self-esteem, man!
During the course of this series I’ve mentioned several times how having a limiting chronic illness impacts upon your self-esteem, but I’ve always found it a difficult one to explain. It’s not just a physical thing. It’s about how you measure yourself too. I have always been my own worst critic but what I’m doing, often on a subconscious level, is berating myself even when I cross a milemarker because it seems such a small thing compared to what everyone else can do. Compared to what I used to be able to do.
During that session I had to face the fact that this illness has damaged and skewed my view of everyday achievements even more than I thought it had. This time last year I was so unbelievably angry. It seemed so unfair that this thing had happened to me that all I knew how to do was fight against it, wearing myself out in the process. I’d be lying if I said that my limitations don’t frustrate me still. But that anger has gone now. My illness wasn’t some kind of undeserved punishment cast upon me. It’s just a thing that happened that, in many ways, has been the making of me.
My next challenge is to stop comparing my disabled life with my old one and to start reframing my accomplishments within the bounds of what I have to deal with now; which some days is quite significant illness. My symptoms have become so normal to me now that I can forget how poorly I really am. If I set aside that I used to travel the world alone without worrying about it and look at the fact that at one point I couldn’t cross the street outside my old office to buy a coffee, to have walked to my local coffee shop 50 times is reason for a fanfare.
Truly convincing myself that I’m doing well and that I have things to celebrate isn’t going to be easy. All the yardsticks I used to measure myself against have changed, and my self-esteem needs to catch up with that. It’s daunting to think that I need to break such ingrained habits I wasn’t entirely aware that I had. And if I’m perfectly honest, I’m really not sure at this stage how I’m going to do that. It involves a big personality shift. But that’s what professionals are there for. To guide you through these transitions.
I trust my friends and family. I know they’re not laughing at me. I know they’re coming on this journey with me and feeling those highs and lows with me. Thank you for all the encouragement you’ve given me. It’s appreciated more than you can possibly know. I just need to figure out how to make myself believe that I’m a success and that I’m enough as I am. I think I’m going to need a lot of Brené Brown pep talks!
(If you have some time, this talk is brilliant and much funnier than you might imagine. I’ve watched it more times than I care to count and I don’t think there’s anyone who wouldn’t find it useful.)