Hello lovely people,
I woke up with hands that weren’t working too well so let’s talk about my supposedly
‘normal’ looking but really rather broken hands. Poor little things.
- fun fact I have more affection for my hands than almost any other body part. They just
try so hard.
One of the more common comments on my videos about plastic straws is ‘why does she need
to use them anyway?’ And… fair, that’s a fair question.
Because whilst they look lovely from the outside, they’re really not that useful from the
inside. I’ll explain the history of my hands and what’s exactly wrong with them in a
minute but to give you a brief idea of the things I struggle with:
Opening jars Using a knife and fork
Doing up zips Lifting glasses
Picking up small things Typing
And…
Signing
I know, how useful for a deaf person (!)
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You might be surprised to know but using chopsticks is actually far easier for me than a knife
and fork. I’m able to make a pincer motion quite well but my middle finger, ring finger
and little finger are really letting the side down.
- They also have a habit of dislocating the tips which is surprisingly painful for such
a little joint.
But why are they like this? How did they get to this point? (I’d just like to point out
that, as you will see in a minute, my hands are actually doing way better than they used
to!)
Well…
Even from childhood I was ‘clumsy’. I couldn’t quite understand how other people’s
hands were so useful. I was great at doing intricate, detailed paintings or making origami
or building miniature hotels for woodlice.
- protect your wildlife at all costs!
But I was really terrible at holding pens the way I was meant to and I forever was dropping
glasses and a tennis racket was far too heavy for my limp wrists to pick up let alone swing
at something. It wasn’t really that big a deal though, I was just a clumsy child who
also happened to be hypermobile. Meaning I had very flexible joints and was just a bit
floppy.
But then I turned 17 and in my first AS Level exam I leant on my elbow for about 20 minutes
and once the exam was over my arm tingled in a really weird way.
It was just my thumb at first and running up my arm, or down my arm actually… it tingled
like it had been set on fire but without the paining of burning. It was inside my arm as
well as on my skin and it meant my thumb was very difficult to lift. Later that day the
numbness had spread and now my whole arm was numb. The skin felt strange, as if it was
coated in a thin film of PVA glue.
Remember when we used to coat our palms in that in school and then peel it off? Honestly
nothing matches that level of satisfaction. Except for proving everyone wrong when they
say you can’t do something.
It was very difficult to stretch my fingers out and straighten them. I couldn’t raise
my hand and the entire arm felt as if I had been sleeping on it for hours and no one had
informed my blood that now was the time to rush back in. It didn’t cramp, if didn’t
hurt it just… wasn’t. As if my arm was slowly fading away and out of sight.
Even in my brain it was becoming invisible. If you’d taken my arm and moved it I would
have only been able to give you my best guess as to where it was. I had no idea what my
arm was touching or where it was lying unless it was directly upon me. As I lay in bed that
night I felt that the limb resting upon my side was only half mine: as if I was being
spooned by another person who was half me… it’s a chilling feeling to have a disembodied
hand that may not be yours resting upon your leg as you lie alone in a dark room.
The next day my friend Kate came over to study for our next exam and we found it quite hilarious
how floppy my arm had become. I remember standing in the kitchen with her, making her tea and
attempting to lift the heavy glass jar with the cork stopper that my mother kept raisins
in. This arm that wasn’t mine could only budge the jar half an inch before it flopped
back down again. But I was right-handed so what did it matter?
I should have been revising but my floppy arm played on my mind. I wasn’t panicked,
I wasn’t even mildly scared… or at least that’s what my brain told me. I was merely
curious and intrigued as to what on earth was going on. It was funny in the way that
temporary medical emergencies can be. You stubbed your toe and it hurts like hell but
it’s funny because it’s just a toe and give it a few hours you’ll have forgotten
it even happened…
But then I woke up the next morning and I couldn’t even attempt to lift my arm. Suddenly,
after 48 hours of mildly ignoring my complaints, my parents realised that this might perhaps
be one of those teenage problems they should pay attention to rather than just nodding
and humouring me-
- believe me, there was a lot of nodding and humouring me, I was a very dramatic child.
And teenager. And adult. [beat] I make no apologies.
They took me to the GP, who looked more concerned than I was expecting him to, who sent me to
A&E, who looked more concerned than I was expecting them to, who admitted me to the
children’s ward, where they definitely looked more concerned than I was expecting them to.
For the next two weeks I lived in the children’s ward having test after test after test…
but going home at the weekends. My left arm refused to move. I couldn’t feel my skin
when they pricked it with a needle, I couldn’t tell where it was when they moved it, I couldn’t
lift it or bend my elbow or twitch my hand.
And you should know that arms are really HEAVY. If your shoulder isn’t actively keeping
your arm moving and alive and telling your muscles to hold that damn thing on then boy
does it draaaag. It was like carrying a particularly plump toddler strapped only to the socket
of my shoulder joint. Strap some weights to upper arm and then swing around a bit, see
how your poor shoulder feels after that mess.
Fortunately I still had my right arm to feed myself with, write things down, type on the
computer. Do whatever I wanted!
But then, like I said, I went home for the weekend and I reached up to take a glass from
the welsh dresser and… it was as if the air became treacle and my arm was suddenly
weightless. The glass slipped through my fingers to smash against the floor and my arm flopped
back down.
A feeling of dread rose within me for the first time.
I hadn’t cared when it was the arm I didn’t use that much anyway. My left side has always
been weak, I’ve always been very strongly right handed…
At least I told myself I didn’t care.
My main concern up to this point had continued to be how much the girl I really liked didn’t
like me, rather than the potential brain tumour all of the doctors were worrying about:
- lesbianism: blasts away your other concerns!
But here was the hand I relied upon, here was my entire world, in hand form, letting
me down.
I stood on the kitchen flagstones, surrounded by glass and cried those great, screaming
sobbing wails of the girl who does not care one fig who hears her because nothing mattered
more than that feeling. It killed me.
It absolutely killed me.
My parents took me back to hospital that evening and by the next morning I had two floppy arms
that swung around like lead weights, pulling me ever deeper.
Now someone had to feed me. And take me to the toilet. And flip the pages of my magazine.
Although I did become very skilled with using my toes to turn pages.
The doctors ran more tests and repeated over and over how this was ‘most unusual’ and
in the most pacifist way possible I wanted to throttle them with my floppy arms because
it may be ‘unusual’ in the lives but clearly it was pretty standard in mine so they’d
better get their acts together and give me an answer.
I had an MRI, a CT scan, X-rays, ultrasounds, electrocutions, bloods, bloods and more bloods
and then, finally, a lumbar puncture that went horribly wrong but at least proved that
I didn’t have meningitis or measles or whatever the hell they were looking for. Honestly,
I have no clue. I just know that it went wrong and made me desperately ill where before,
granted I had two paralysed arms, but, I was generally okay.
And this isn’t even to mention the number of times someone subtly suggested that if
I was doing this to myself or pretending in some way I could just stop the whole thing
and still save face.
- this despite the fact they ran an electric current through my body and noted that the
nerves in my arms weren’t conducting anything.
Yes. They essentially electrocuted me to prove I wasn’t lying.
Hospital is fun(!)
Six weeks after I was first admitted to hospital the results of the genetic screening tests
that they had done on my very first day came back to say that I had an inherited neurological
condition that meant I have holes in the myelin sheath (protective coating) around my nerves
and that in all likelihood my leaning on my arm during the exam had caused my nerve to
bubble through the hole and get trapped.
Or not.
The nerve could also have been severed through the hole.
So either my arms were gone for good or it would be a waiting game to see when they would
come back and to what degree of usage they would return.
They strapped NHS issued beige neoprene all over my upper body to hold it together and
discharged me to go home and wait… possibly forever.
Everything in my life was suddenly beige as my home began to fill with ‘accessible equipment’-
which really is hideous. Every door handle in the house was replaced from the round ones
you actually need your hand to be functioning to turn to long handles that I could just
throw my useless but very heavy upper limbs upon.
I lay in bed every night unable to toss and turn because I was strapped to heavy weights
that sometimes landed on my chest and startled the life out of me. Whose dead arm had flopped
down upon me and how close at hand was my potential horror-movie-like wreckoning???
But, slowly… I think in the first month… my shoulders came back to life. I could lift
my arms, just about, even if I couldn’t do anything with them. They were heavy and
useless but at least now I could allow my armpits some air.
- You don’t realise how necessary that is until you really, really don’t want to realise
how necessary that is.
My mother strung ribbon between the handles of my dresser so I could pull the draws open
by myself…. Which was premature, looking back, because
I couldn’t dress myself.
Finally I could trap objects between my arms and rather sloppily move them from one place
to another. I also had a better ability to lean forwards and didn’t have the constant
Atlas-like worldly weight on my shoulders.
It felt freeing- as anything does after nothing.
But my arms, continued to deteriorate from lack of use. My arm muscles wasted away, becoming
scrawny and knobbly.
Around six months after they had left me my elbows started to come back and we realised
that when my hands were held in wrist splints there was some movement in my fingers. Out
of a splint they hung rather alarmingly- at an angle even more acute than this- but once
held properly they could just about function. My pointer finger was the strongest and in
time my thumb became more useful but my other fingers were tight or stiff or difficult to
control.
It's kinda hard to explain.
I’m trying my hardest to straighten all of my fingers right now and they won’t do
it. They might do it when I’m not looking or in order to complete an action but they
don’t take direct orders from me.
For around another year and a half I lived with my arms in this way. I still couldn’t
feel them but they did their own thing thing really.
I had a range of different wrist splints and I remember people saying at the time how brave
I was for not covering up my wrist splints or hiding my hands in gloves. I constantly
pushed by sleeves up to my elbows and it’s a habit I still have. It baffled me when people
said that. It was difficult enough to use my hands, why would I have made that harder
for myself but wrapping them in fabric for the benefit of other people?
Why on earth would I inconvenience myself just to make others feel less awkward?
They say it takes six months to build muscle and six weeks to loose it.
By the time my wrists could function on their own my hands had been through two years of
very little usage. The muscles in palms had wasted away. It was possible to feel the bones
of my hand through my palm and even see them if I held it the right way.
My hands curled
in on themselves whenever I wasn’t actively trying to straighten them.
They were weak generally but the tendons pulling them into cramps were surprisingly strong.
They hurt so much I’d cry messily whenever they cramped.
Whilst they can easily flop down, bringing them up again was a challenge so I adapted
to rolling my hand around to the side and using its own weight to pull it up.
10 years later and they still aren’t back to what they were and probably never will
be but considering they were paralysed for two years we’re doing a rather good job!
[bell sfx]
While I can’t feel the surface perfectly it now is just the top layer of skin so feels
rather like wearing gloves rather than my entire arm not existing. They do still look
a little like Mr Burns arms but I guess there can be glamour in being a T-Rex.
Some days
they’re much worse than others and are very painful. I can’t type for too long or else
I’ll have a few days of pain. They essentially feel like they’re made of rubber and whilst
there are little robot segments that go into my index finger and thumb the rest of my fingers
are just hit and miss.
- By which I mean they hit into everything I don’t want them to and miss everything
I want them to catch.
I know that some of my signs aren’t precise or in the correct handshape sometimes and
that’s… because they just don’t listen to me.
I have special, large foam-handled cutlery at home that means I can eat by myself- although
I generally prefer chopsticks because they’re easier to use-
- sidenote, this fork cost me £14. £14. For one fork. With VAT relief because it’s
a medical aid. Tell me again that there isn’t a tax on the disabled(!)
I constantly forget to take my cutlery out with me because it’s a hassle and the easiest
way to loose a £14 form you’ve ever seen. We tend to eat in restaurants that have chopsticks
or allow me to eat with my hands.
I know, I’m incredibly ladylike.
Much love to those of you who also eat with your hands.
The worst thing is weddings because there aren’t any other options for cutlery available
and often they’re very heavy knives and forks. My lovely wife Claudia very gallantly
cuts up my food for me and then I try to wrap napkins around the handles but it’s a bit
like wearing mittens and trying to knit.
I’m pretty okay with it emotionally though.
Having said that: the one thing I hate the most about my hands is that because I can’t
feel my skin, I can never tell when there is something on my fingers and thus smudge
dirt and the like around everything I own. It really upsets me and I hate when people
mention it. I know there are fingerprints on everything. But when I try to make the
mess better I inevitably make it worse. That’s my special talent.
[Bell sfx]
I also, obviously, get pretty miffed when people ask why I even need to use straws,
I look like I can lift a glass just fine.
[drops bottle]
- Yes I just acted that out with a plastic bottle, because I’m not an idiot who is
going to break a glass just for fun.
Half the time my wife needs to help me with buttons and catches. Are you really shocked
that these floppy things need a little extra help?
ACTually, scrap that:
Muscular atrophy: we’re the cool kids really.
I hope that’s answered some of your questions and I’ll see you in my next video.
[kiss]