Prescription for Disaster

Monday, 30 June 2014

The escalator incident




My cousin Patti had come to visit us in London awhile ago when the twins were still rather small. Despite being in the midst of a flare-up of my autoimmune disease I felt that playing hostess was the 'right thing to do' and took her out for an 8km walk down London's South Bank on the Thames, pushing the twins along in their giant beast of a stroller.


Overdo it? Me? Nah. I've spent the last two years feeling as though I'd 'overdone it' just by getting properly dressed in the morning. I needed to live a little and hey, I could sleep all through the next day if I had to. So off we went, me heaving away pushing my beast of a stroller and Patti effortlessly prancing around the Christmas market like an over stimulated hippie at woodstock. 



'I'm fine!' I kept assuring her. I was lying. I was breathing again like a wounded, asthmatic hippopotamus but kept pointing out lit up iconic sites of London to distract her. She'd feel bad. 

And probably try to put me in the stroller.

By the time we had more or less finished our tour of the South Bank and I had wrestled my beast of a stroller through a tiny health food store I'd had enough - I was done. We needed to just call it a night and go home. Directions to the nearest tube station brought us to London Bridge which, being a tourist area, thankfully had an elevator from street level to tube level.



So we got on, and headed home.


The train itself was fine - but things went downhill quickly at our first line change. There was no elevator. Just a set of long and winding circular stairs down to the next level. Okay fine, we could do this. We just had to power through. I'd seen Paul pick up the giant stroller before and he seemed to do just fine, surely I could too.

God no. No no no no no. I picked that thing up, waving off Patti's offers of help. I tried shifting it. I tried dragging it down the stairs (too dangerous). I tried balancing it on a hip, only to confirm that I am now too round to actually have hips. Nobody was offering to help us with this thing, clearly we were about to maim two innocent toddlers. But I guess it's a London thing.


We even had a line up of passengers behind us tsking and scoffing and trying to squeeze by. Alright, we had to get down those stairs. Something had to be done.

I took a deep breath, grit my teeth, grabbed the gigantic stroller holding my children and heaved, clutching the double stroller to my middle and powering down those stairs. Patti asked if I was okay but I couldn't speak, too focused. I was like the Hulk. Just get out of my way!


I reached the bottom and threw down the stroller, ready to collapse and die on the floor of the tube station but weary of the rats, the twins squealing for us to go down the stairs again. Like hell.

We got onto the next train and I was able to rest for a few stops before coming to Tottenham Court Road - yet another station without an elevator. It did, however, have an escalator. I was far too tired to Hulk-Rage up some more stairs with the double stroller. I was going to go for it.


There is a reason that you aren't supposed to take strollers down escalators. A reason!

We got to the top of the escalator and looked down, this was a particularly steep one. I was not feeling very strong. Best to take the children out of the stroller to do this. But... they were twins.


Patti, not being overly comfortable holding squirming toddlers, took one. She was nervous about it. I was nervous about it and told my baby to hang onto Patti for dear life, just in case. See, Patti is the kind of person in which things just happen to. Left alone for a moment on an escalator with one of my children on the London underground she would surely be attacked by something completely random and out of place like a small bear wielding a didjeridoo. 

Or something.

Okay. There was a line starting to form of people behind us. Patti was holding one child and I was holding the other while gripping the stroller behind me. I was having horrible visions of just how badly this was about to go.


Suddenly Patti was off, she went for it! I was left standing at the top of the steep escalator holding a baby and a giant pushchair and causing a hold up - not wanting to let Patti get too far I took a step onto the escalator and went for it, holding onto the giant stroller with one hand behind me and my baby in the other. 

And then everything went horribly wrong.

I felt a tug and the stroller was yanked out of my hand - it was so long and so large that a part of it had caught on the entryway to the escalator and tipped backward, falling to the ground and blocking off the entire escalator like a gigantic Graco barricade. Oh my God. It started kind of rolling over itself at the top of the escalator with a huge crowd of people piling up behind it - some of them were already on the escalator's moving stairs but couldn't get off due to the pushing crowd behind them. I stood there in shock as I traveled downward with my baby and without my stroller, watching dumbstruck as a man tried to jump my rolling stroller of death but failed, falling over it and being pulled back up by the crowd.

I had no choice. I had to go get my stroller.



And so I started running. UP the escalator. With my baby and Patti now nearly at the bottom. It was the slowest run of all time - a heaving, rather large woman powering up the down escalator holding a laughing baby and shouting frantic apologies to the angry mob above.

I finally, finally made it to the top and could barely breathe, bending down to tug the rolling stroller free. This thing had a mind of its own and was twisting and turning, clearly out for blood and mass destruction. I pleaded with the crowd for help but nobody moved - they were all riveted by the ridiculous drama before them and the out of breath mother trying to free the stroller of doom as it writhed around. I was darting my hand in and out of there trying to make a grab as it lunged at me with its wheels. A cup holder flew off into the abyss over the rail and we all watched it soar. I was still running on the damn escalator, trying to get a good hold so I could yank it free. 

A man pushed through the crowd and started kicking the stroller in an attempt to dislodge it - no regard whatsoever as to what would happen if it went suddenly flying toward me and my child. I held up my hands to stop him and he jumped like a damn gazelle over the stroller and to my side, turning in the air. He must have been a dancer. He pushed me to the side, grabbed the twisting stroller and gave a great heave - dislodging it in a single go to the cheers of the crowd.

He then handed me the handle of my stroller as it lay, defeated, vertically across 4 steps as the escalator carried us slowly down to Patti and the gaping crowd below.

That was the longest escalator ride of my life.


Next time I'm not just taking the stairs. I'm taking Paul.



Saturday, 21 June 2014

So I don't think I ruined a child's birthday party... but I certainly made it awkward.




There is seriously something wrong with me. I absolutely cannot have a normal experience, even at a child's birthday party.

About two weeks ago we received an email birthday party invitation for our daughter's friend from school - a Pakistani family that we have gotten to know quite well and that I have helped out a bit with a few issues they were having. See, Paul and I just like to help people. We pull over to help stranded drivers (unless they are holding a machete at night), we give rides to neighbors and if we are ever in a position to help it is most likely that we will, without question or expecting anything in return.

You would think that Karma would have helped us out by now. You would think.

So we were invited to this birthday party, but I called the dad to see if the time of the party was a typo on the invitation - Saturday night from 7pm to 10pm. For a four year old's birthday party. Oh - and there was a list of activities to expect. A bouncy castle. Trampolines. Prayer. A bubble machine, magician and a giant connect-four (Paul and I were the only ones that knew how to play). Nope, not a typo - see you there!

Wait, prayer?


Alright, no worries. We are atheists and our friends are Muslim but we are about as open minded as they come so we weren't fazed. A little that the prayer was prominent enough to warrant half an hour on the party programme but hey - maybe that was a typo.

We arrived fashionably late having wrapped the child's gift with Christmas wrapping and duct tape as despite having bought a pretty cool gift at Toys R Us earlier in the day we never remember that we actually have to wrap presents and always end up scrambling at the last minute wondering if presenting a gift wrapped in kitchen roll is 'cute' or 'weird'. 


We looked around to find that we were the only caucasian family in attendance at a birthday party group of around 80 people. Everyone else seemed to be from Pakistan except for the Vietnamese woman with us, whose daughter also goes to school with our kids.

And we were SEVERELY under-dressed.



Every woman was dressed in an elaborate and colorful sari or traditional dress glittering with diamonds and soft silk. Their eyes were made up like beautiful dancers at a Lady Gaga concert with rainbow eye shadow and stuck on beads. The men were in suits or traditional dress and the children were wearing either traditional dress or flower girl type pouffy dresses. 

We had just spend the day swimming with friends at an outdoor pool and had arrived back at home with 15 minutes to get ready before heading to the party. Thank God I thought to put the girls into dresses, though they were casual summer sporty dresses with pink sparkles and sneakers. At least I brushed their hair. 

And us? We showed up in cargo shorts, t-shirts and flip flops. I had a bit of makeup on but what did it matter? It was a children's birthday party!

It apparently did matter a bit.

So not only were many eyes on us because we stood out so drastically, we were also the most poorly dressed ones there. Okay, it's just a child's late night birthday party. It can't get more awkward, just go with it.

Everything seemed to be running smoothly, aside from the family's extended family members coming up to us much more often than the other guests to see how we were doing and if we were enjoying ourselves. Uncles, aunts, grandparents, people that didn't speak English and we are really unsure of their relation, cousins, siblings... we were starting to feel as though we were the completely unaware guests of honor at a child's elaborate birthday party.

We were called in to the prayer with everyone else and sat at a long table in the middle of the room with the hosts up on an actual stage.



Surrounded by strangers and me being the only woman in the very full room without a head covering (except for the Vietnamese woman, who tried very hard to blend into the wallpaper at the back) we hushed the girls and took their birthday noisemakers away while the prayer began. The ceremony was entirely in Arabic and we hadn't a clue what was going on. Content to just go with it we sat back, smiled and soaked up the cultural experience, despite catching more than a few women looking our way with curiosity and hushed conversations. The prayer continued, using a microphone and reading from the Koran with the family on stage and most attendees paying rapt attention to the prayer and what might have been singing but probably wasn't. This is fine, everything is fine. We can totally just blend in.

And then we saw another white guy.

He was outside the open door of the hall standing kind of near the bouncy castle and very reluctant to come in. He looked like a typical British guy, also dressed in cargo shorts and a polo top - but he was urgently gesturing to us.

To us.

We didn't know this guy. He was mouthing something and making urgent hand gestures, pointing across the field and motioning for us to come with him .What the hell? We looked around and tried to break eye contact with him - we weren't the hosts of this shindig! We are already drawing enough attention I am NOT going to deal with it if the bouncy castle is blowing away or something. 

The guy came a bit closer, pleading with us with his eyes and now desperate hand gestures. He wasn't looking at anyone else in the hall, just us - the one white guy outside found the two white guys inside and for some reason was really wanting to talk to us. During the prayer being read out over the microphone and hall sound system. I looked around - all of the hosts and their family were up on the stage. I didn't know anyone else on the floor that was 'in charge' that I could direct this crazy guy to.

I couldn't leave this poor guy hanging - it had to be something urgent. So in the midst of an Arabic prayer in honor of this child's family over the loudspeakers I got up, walked through the center of the room to horrified looks and a wave of tsks and disapproval to have this other white guy practically grab my arm and start running behind the bouncy castle and toward the open field.

"Oh thank goodness you came out - there is a child off in the field and it must be one of yours!"

"One of mine?! Our girls are in there with us! What are you talking about?"

"No, an Asian toddler is out in the field alone! He must be with your group!"

"Wait, what? I'm not hosting this thing, I can go get someone in charge.... "

"The kid is already way over there!"

"Wait, I... I'm just a guest at this party..."

And he pointed, off in the distance, at a wandering two year old boy that was indeed probably with our party and not an adult with him in sight. What do you do in that situation? You go for the kid, even though it's not yours.

And then the kid sees you coming. And he books it.


Imagine the scene - Muslim prayer blaring out of the community hall as a lone and out of shape white woman wearing awkward flip flops runs out into an overgrown field after a random Asian two year old. I'm calling for the kid to stop and wait for me but he turns, sees this bizarre bright white and severely under-dressed white blonde woman running after him and he screams and runs away - that little squirt was quick, too. I haven't even run for a train in over a year. I don't run. There is a reason I don't run. Many reasons, actually - but to catch that kid I kicked off my flip flops and booked it, literally chasing a screaming and crying two year old Asian child around a field.

At one point I actually halted myself and thought 'Oh my God, I'm actually chasing someone's toddler.'

I was finally able to grab the screaming child and stopped him, getting down on my knees to his level in front of him and catching my breath. The kid didn't seem to understand much of what I was saying and was now absolutely bawling and terrified so I scooped him up in my most motherly way, smiled and made shuushing noises to calm him down, bouncing him on my hip as we walked back across the field to collect my flip flops and back to the hall.

And then it got worse.

I couldn't very well stand outside with a stranger's crying two year old so I went in, still during the prayer and stood inside the door holding this sniffling kid that was now clutching to me. Everybody looked but the prayer didn't stop. I held the kid on one hip with one hand while pointing to him with my other hand mouthing "Is this yours? Does anyone know who's kid this is???" and NOBODY responded. I started quietly going from table to table along the front asking if anyone knew this kid. It was so, so awkward. So awkward! Until a 10 year old boy waved his arms at me and put his hands out for the boy - his parents were engrossed in the prayer and didn't even notice me walking back into the room with their son - though everyone else certainly did.

I gratefully handed the kid to the... uh... other kid... and slinked back to our table, Paul not even having the words to ask me what the hell had just happened.

These things just... happen. I quietly told Paul about the kid in the field and in turn quietly got up to go explain things to the child's parents lest they think I had tried to kidnap him and had experienced a change of heart.

And the prayer was still going.

So we were now not only being stared at because we were the only caucuasians and woefully under-dressed but now also because I had run out during the prayer and returned with somebody else's crying child. Sure that it wouldn't be possible to draw any more attention to ourselves - and then there was dinner.

We had no idea that there would be dinner at this thing. At 9pm. A buffet was set up with breads and curries and plates of delicious food and then a troupe of people come in single file down the middle of the hall toward me

Me.

Why me? Because I was apparently the only vegetarian of the entire group so grandma made me a special vegetable rice biryani dish and samosas. Of everyone else having to line up to get food I was brought a personal huge bowl of curried rice, a plate of samosas (nobody else got samosas), plates, spoons, napkins and brand new bottles of ketchup and mayonnaise (random). And again, everybody was watching.


This was incredibly sweet and thoughtful of our hosts - though completely unanticipated. The grandma stood and watched as I dug in to show how grateful I was and made 'mmmm' noises as audibly as possible to please her. She finally left and I turned to Paul, eyes brimming with tears. I couldn't feel my lips. My mouth and throat was in actual pain. This was the spiciest thing I had ever eaten in my life. Wasabi coated toast had nothing on this curry. Paul tried it and made me promise not to give any to the children. No amount of ketchup could cool this down.

But not eating it would be rude.

So I sat there, eating this curry and trying my absolute best not to cry or lick the bottom of my paper plate to try to get some feeling in my tongue other than absolute fiery agony. I had to at least make a decent dent in this bowl of hellfire rice or the grandmother would be hurt. It was delicious, no question about it, but I only tasted the first spoonful and then all of my taste buds shriveled up and died.

After another 45 minutes of this I just couldn't take any more. The escapee child's father had come over to our table to explain to us what the English meaning of the prayer was, which was very considerate of him and much appreciated. Then he went up to the microphone and led another, shorter prayer with song like qualities and I am quite sure that I heard a word sounding like 'Canadian' a couple of times with people again turning around to look at us.

It was 10pm. We were exhausted and our kids were exhausted. I couldn't feel my mouth and I was wishing that I had at least painted my nails or something. We were done, we had a great time but we were just done - thanking the hosts profusely and making our exit we emerged somewhat triumphantly out into the parking lot - ready to head home and all just lie down.

It was 10pm and we were the first to leave. And you just know that the moment we left everyone was asking 'who the hell were they?!"

Regardless, the next child's birthday party I'm invited to I am wearing this, just in case.




Monday, 16 June 2014

Apparently I'm NOT just a rude douchebag that thinks my friends are boring....


I just can't catch a break.

For about six months or so now things just haven't been making too much sense. I've been tired, really tired, much more than usual. It's not an 'I just ran a marathon' or a 'my twins have been ADHD rabid howler monkeys all day' kind of tired. 

Part of my Sarcoidosis is 'fatigue not remedied by sleep' - which means that I have a nap but wake up feeling worse, or that I literally do not have the energy to do simple things at times like brush my hair or cook a meal. I will usually be able to force myself to keep going, but it is a substantial conscious effort at times. 

This is different, and it has been going on for about six months now. 

I recently went on a business trip to Ireland -


and spent the entirety of the trip sleeping in the back of a car, waking up to attend meetings and then falling asleep again as the lush greenery of Northern Ireland and Ireland continued to pass me by. I saw NOTHING. I remember NOTHING.


Then I started to notice that the couch in my office seems to be getting a lot more use lately. 

Then we had a friend come by for an epic Mario Kart 8 Smackdown (I am disturbingly good at Mario Kart) and I fell asleep on the couch. I couldn't really even communicate - I was just going down and going down fast. I couldn't even stand to say goodbye, I couldn't even carry a conversation. I managed to lay down on the couch on top of a set of controllers, a toy pony castle, my laptop and the dog. I was out and snoring before our friends had made it to their feet.

The problem became more obvious last weekend when I was sitting on the couch chatting with a friend when she suddenly asked if I was 'alright'. She commented that my mood had suddenly changed and I had become distant and unfocused, was I upset about something?

Not at all, I was just fighting off falling asleep at random. It was so strange. 

Then we went biking yesterday to go check out the sets of the new star wars movie (as you do!) and I found myself drifting off to sleep while riding around. We came to a patch of deep mud and Paul blew through it, Lochie squealing as he pulled her through the mud. We built up some speed behind them and the next thing I knew I was stopped and leaned over to the side in the mud, Kaitie having expertly leaped off her bike to safety like a premonitious gazelle, my shoe completely buried and shaking the sleepiness from my head. 

We then took a break at the next junction and I remarked to Paul that all I wanted was to sleep - leaning over my shihtsu in his bike basket and eyeing up the thistle bush forest like it would make a great place for a power nap.

Something was definitely wrong. We started to discuss it in the car on the way home but then I fell asleep before we were out of the parking lot.



So today I did what any normal person would do when they're given a new diagnosis (after a bunch of medical tests, of course) and I joined a Facebook group for Narcolepsy to see what this was all about.

Oh. 

My. 

God.

There are some things in life, often medically related, that are so unintentionally funny that you choke just trying to breathe. 


I should have known better, as I had done this once before. I recently experienced a particularly horrible week of 'no action' from yet another med adjustment and spent an evening googling 'can you die from constipation?' and oh did the internet ever deliver! The forums and threads dedicated to this topic throughout the internet produced username gems such as 

mesoconstipated31

and

nopoop3days

and

hemmoroidhercules


The home remedies! Oh the tales of woe! The horrors and the tears. Comments like 'try to go in the morning because you'll have more energy to push then' and the entirely new and horrifying knowledge that if it waits too long it can actually come up the other way. Paul and I have never laughed so hard in our lives as we did reading that (which didn't help, unfortunately). I positively howled to the point that I rolled off the sofa and nearly wet myself.

You think I would have learned.

But no. I have joined one narcolepsy group on Facebook. One. And it is already so unintentionally funny (yet also very supportive and informative) and this is CLEARLY one set of disease card holders with a wicked sense of humor. You would have to find the funny in it, you would just have to.

One guy was all upset that he meant to have a super productive weekend so he got up at 7am, had a shower and then went to get dressed, when he woke up again it was night - but he wasn't sure which day it was.

A woman posted a picture her three year old daughter had drawn of her - she was a bed. With a face and hair. And the bed was holding a lollipop. 

Another woman keeps getting woken up in the parking lot of her daughter's daycare center, passed out in her car. (maybe she shouldn't be driving, though) and a group was relating their experiences of falling asleep and snoring loudly in the waiting rooms of their doctors - entire groups of narcoleptics passed out collectively in a doctor's office. 

So I still haven't yet come to grips with this, but it feels very validating that there is a reason I've been falling asleep so constantly and rudely. I've not been a completely rude douchebag to my friends, colleagues and random strangers by zoning out and falling asleep while they are talking to me (or while I am talking to them). 

I'm just narcoleptic.

Gotta run, the kids need me.



Thursday, 12 June 2014

Let me just google that quickly / I just want to be a pamphlet

Let me just google that quickly


I sometimes sit in the doctor’s waiting room staring at the wall of pamphlets across from me. There are loads of these shiny, folded pamphlets hanging on the paint-chipped wall in their little metal holders, bursting with information and resources about Diabetes, Lung Disease, Rheumatoid Arthritis, Glaucoma, IBS… these pamphlets tell you everything you need to know. What will happen, why it happened, how to get help, what color your conditions’ ribbon is…


There is never a pamphlet on any of the rather well-known major diseases because well, if you get one of these you’re given a club membership complete with an ID badge, a bouquet of daisies, a basket of well-known books complete with DVD, two kittens and a hug. Oh, and it is also available in French, Chinese and Brazilian body language, just in case.

My disease doesn’t even get a pamphlet.


I remember the diagnosis stage – being endlessly poked and prodded, giving enough blood to keep a vampire family of six well fed for a year. Nobody seemed to have a clue as to what was doing this to me – neurologists parading in and out of my room giving me the side-eye and repeatedly asking ‘are you sure you’ve not been recently hiking in the Himalayas? Are you sure you’ve not maybe sat on a Tibetan yak tick?’ and other bizarre questions of elimination that make you start to question your own recollection of last week. After seemingly endless tests we had it narrowed down to three things: X, Y or ‘something you get to name’. Despite my initial excitement at the prospect of at least making history I quickly recalled that these things don’t tend to work out so well for the ‘namer’ when they’re a patient, and descended into more frantic worrying in my hospital bed at night, genuinely concerned that my 99 year old roommate on life support might out-live me.


A couple of rather exciting surgeries later in which consultants would dart up to me in the recovery room with fantastic news of ‘it’s not ___!’ so I could share in their short-lived glee (so, what is it then?) and we finally had a diagnosis. A surgeon woke me up in the middle of the night having just received the results of yet another biopsy, this time confirming my condition. He was too anxious to begin treatment and couldn’t wait for my medical team in the morning, I needed treatment now – he explained while filing up my IV line with the biggest needle I’ve ever seen. It’s ***, he confirmed to me.

I’d never in my life heard of ***. Good grief, was it fatal? How much time did I have? Were my limbs going to fall off? Would I be blind by morning? Affect an involuntary Scottish accent? I was elated at this thing having been given a name but I had so many questions! Had I not been too groggy from the anesthetic I would have surely grabbed the poor man’s sleeve, clutching to him and grilling him for hours – but he hadn’t the time and I couldn’t make my arms work. I asked him if I would be going home soon or should I go ahead and tell my husband to start dating other people? The surgeon took pity on me and hastily scribbled down the name of my disease on a post-it note before dashing back out of the room.


I clung to that little yellow post-it note with letters I could barely make out. It was my little yellow life raft. It had a name. A name! What was happening to me was real! The validation I felt was indescribable, though I still knew no more about my prognosis than I did ten minutes ago.

And this is how I was discovered by a nurse in the middle of the night wandering down an abandoned hospital hallway with my IV pole and iPhone, googling my condition while standing in the only spot I could find with decent internet reception. In a gown with no back, none the less.

Being diagnosed with a rare condition is an incredibly lonely and isolating experience. My GP had only ever heard of it once before, and other than offering moral support and the odd cup of tea there wasn’t much I could get out of her. My medical team consisted of more ‘ists’ than I can properly pronounce. Medical students were called in ‘to see this’. At one point there were 12 doctors in my room with a whiteboard and I was half expecting Hugh Laurie to waltz in to my rescue.  So now I seek out others with my same condition, my same severity. And when I find them I cling to them like the best of friends, my little post-it note raft getting stronger. They understand what it’s like when nobody has ever heard of your condition. Or if they have it’s more of a ‘oh hey! My cousin’s friend’s ex-husband’s dog groomer’s stock broker had that!’ and you’re left feeling like you should congratulate them on their familiarity with your plight.

They say it’s best to be unique. I say uniqueness is sometimes quite overrated.

Most times I just want to be a pamphlet, like everybody else.







Friday, 6 June 2014

Well THAT couldn't have been more awkward


Just in case you’ve not yet heard, I’ve written a book (Prescription for Disaster). Well, you may have heard as I’ve kind of been shouting it from the rooftops with a megaphone. I don’t plan to stop any time soon.


My day was more or less one of those where you start to suspect that the universe is setting you up. It started in the morning on my way to the hospital – a small little old lady full on reached out and cupped my bum cheek in an elevator, then looked me in the eye, grinned and apologized. Having given her the side-eye there wasn’t much more I could do so off I went, continuing on with my journey. I then passed a local charity shop with an actual pirate hooker costume in the window - just like in my book. This was weird.



About half way to the hospital while passing a small park I hear ‘Timber! Look out! Timberrrrr!) and the sound of a chainsaw up in the air. I looked up just in time to see a gigantic tree limb (it wasn’t a branch, it was a full on limb) crashing to the ground and onto the hedge I was walking past. The last thing one expects to encounter in central London is a full on lumberjack.

I made it to the hospital, slightly hesitant about entering for my treatment given the absurdity the day had already started spewing at me. Regardless, I went in, staked out my chemo chair for the day and settled in – quickly heading down to the consultant’s clinic to see Dr. Sarc and his team. What happened there has given me so much pride. I’m quite close to bursting with pride already at this point – like a peacock proudly showing off his feathers of awesomeness that then hits the vanity boiling point in which it suddenly molts and explodes – beautiful feathers strewn about the street as shrapnel of the peacock having thought far too much of himself.


I saw one of my regular doctors, the young rheumatologist with an iPhone. I told him about my book, showing him the copy I had brought with me. I cannot begin to describe the smile on his face when I told him how much he had influenced my experience and that he was in there as well. He asked me where he could get a copy and I assured him that I would post him one to the hospital in the next few weeks, that I would be so pleased to give him one – and that the best thanks I could ever give him was to tell the world what he had done. It was a lovely exchange, and then he wrote me up for some more drugs.

So although it wasn’t a surprise so much as just more weirdness gravitating toward me, that same doctor came up to the day ward I was on after his clinic finished. He wanted to ask me to please sign the book I send him, to his name and with my name. See, he’s having an assessment in a month and wants to bring this to his supervisor to show them that he’s so fantastic that one of his patients even wrote a book about him.

So of course I will personalize it. And I shall sign that one with the greatest flourish I can muster.

So after something like that I was understandably on a bit of a roll confidence wise. It was rather short lived.

My employer’s photography crew showed up at the hospital a few minutes later, ready to take some promotional shots for my book – which the surprised nurse kindly let us use an empty treatment room for. The nursing staff seemed to be so surprised by my sudden spoken Chinese and the small crew of Chinese people having shown up that we more or less got to do what we wanted – though I of course was careful not to have any people or hospital identifying information in the shots. Our awkward photo shoot done they left – back to the office and wishing me luck with whatever the hell I was doing there (erm….. I maybe should have explained things to them first. I assured them that I wasn’t dying and would definitely see them at work on Monday)

and I went back to settle into my chair, chatting with a good friend that had shown up coincidentally (the best kind of showing up, really). Again, my confidence level was preeeeetttty high… so I was going to do it. I was going to make an approach with my book to the hospital gift shop.

And that could NOT have gone any worse.


My plan is to form partnerships with the “Friends of ___” volunteer run shops of hospitals throughout the NHS in the hopes that they will not only stock but include my book on their little cart that goes around to all the wards. This would be ideal for me, as it’s a book designed for sick people and well…. hospitals are full of ‘em. So I made an approach, to a friendly old man running the WH Smith bookshop downstairs. He told me that there used to be a “Friends of Royal Free” shop but it sadly closed about four years ago – he used to be a volunteer there himself. Now it’s just the WH Smith, but the trolley that goes round is run by the Volunteers Office now – maybe I should talk to them.

Great! He directed me to the office and off I went – uber confident that an office of elderly volunteers should be quite pleasant and relaxed to deal with.

It was not.

The volunteers office of the Royal Free Hospital is run by an intimidatingly efficient yet very pleasant woman, and is an office of about 10 or so people… not really what I had anticipated. The receptionist is an elderly woman with terrible hearing, so kept asking me why I was there. I really need to practice how I explain these this to people – as I stammered and stuttered and told her that I ‘wanted to get involved with promoting the hospital and fundraising, I’ve written a book and would like to speak to someone about how I can get involved.”

“What?”

“Oh. I’ve written a book –“

“WHAT? This isn’t the library!”

“I don’t want the library. I’ve written a book –“

“Oh no dear, we don’t sell books here.” 

"No, I've WRITTEN a book! WRITTEN!"

"Oh! Good for you dear!"


She was interrupted (thank God) by the uber-efficient woman running the volunteer office, who gave me forms to fill in while she told me about the 57 volunteer positions currently open. I told her I wasn't interested in volunteering my time so much, but that I was looking more into getting involved in fundraising and promoting the hospital, spreading a message of positivity in chronic illness.

"Oh, so you want to do fundraising, that's great! We are always in need of more collection tin volunteers!"

"What? No, you misunderstand. I don't want to hold a tin"

"Oh, well, we have table positions for collections as well."

"No, I work full time. I'm not going to walk around with a collection tin."

"Oh, well you could take it to the station closest to your work? Where do you live?"

"I'm not here to do a collection tin."

"You could do a collection tin here at the hospital?"

"Enough with the tin! I'm not here for a collection tin!"


I decided to try a different tactic. 

"Okay. Here is the form, I've finished filling it in. Is there a contact person that I could talk to about getting involved from a 'higher level' fundraising or promotion opportunity?"

"So you don't want to do a collection tin?"

In the end I left my email for her boss, spun my IV pole around and got the hell out of there, back up to the ward and to relax. That was the most awkward and frustrating attempt at 'getting involved' I've ever experienced .Drained from the day and sure that the weirdness of my day was at least over I sent Paul a text asking him and the kids to come up to the ward to get me when they arrived. This is what I got back:


Alas, the weirdness of my days is never, EVER over.

Oooh! But I did get to have those satay noodles for lunch!