Ours was such a brief encounter that I doubt you remember me, I doubt you gave one more thought once we’d parted. But I want you to know that I remember you, I remember what you said, how bad you’d wanted to shame me. I want you to know that moment has stayed with me, has shaped me, that I’ve wished a thousand times to meet you or someone like you all over again- that I could give you the perfect reply I’ve spent so many years crafting.

You sneered sanctimoniously and took great joy in it. You crushed a fragile teenage girl in the most awful period of her life.

I hope your child has not grown up to be like you.

It was a busy day at the Redland May Fair and the three queues for the toilets in the Tennis Club snaked out of the building. Parents with babies waited for the disabled toilet’s changing table. I anxiously joined the queue behind a woman in a motorised scooter, too busy going over the toilet routine to notice the dirty look you probably gave me.

My father was kindly taking me for my first ‘day out’ in the midst of months in and out of hospital. I love him, he’s wonderful, but he’s not a woman. For the first time since my arms had suddenly become paralysed a year before I was without a female helper to handle the knickers situation.

I psyched myself up: “I can do it, I can do it.” The taps in disabled bathrooms can be pushed by flaccid hands, no need to turn. My skirt was floaty enough to flip over my back. Large knickers are easy to grab. There’s a handrail to ease up and down. “I can do it, I can do it.”

Oh lord, for the life when going to a public toilet was not the biggest deal of my day!

The lady in the scooter was slow in the bathroom but held the door open for me and I made it just in time. The relief was overwhelming but the irritation was bloody huge- there is nothing more mortifying than being proud of pulling up your knickers.

Still, it was a big step, I’d done it: the hardest part of the Day Out. The hammering at the door hadn’t helped though!

My wrist splints caught the lock and turned it for my floppy fingers. I swung the door open with gusto, I may or may not have been feeling like a God. I probably had a self-satisfied look on my face.

Yours was self-rightous.

“Oh.” You stepped closer, sneering with the full, belittling up and down look of distain, “Not disabled or with a child then?”

Shit.

Am I ‘disabled’?

I mean…. I’d spent a year seeing more doctors than teenagers. I couldn’t really use my arms. Only occasionally was I bussed in to school. There was that whole three months of being in a wheelchair. I didn’t actually spend more than two hours a day out of bed…

Is that who I am now?

Is that it?

Is this my life?

“I- I’m- I needed to use the toilet.”

“Whatever! Disgusting.” You scoffed, laughing with derision as my face sank, “Move.”

You shoved her buggy towards my rapidly deflating ego, catching at my ankles.

Shit.

Is this it?

If I am a ‘disabled’ person now, if this is who I’m going to be forever… shouldn’t I hold my head up? Shouldn’t I be proud and strong?

“Actually-!” You slammed the door in my face.

I ran as fast as I could (which wasn’t very fast) out of the door and to my father, collapsing in his arms with tears. He would have wanted me to be proud, to stand my ground, not use a pathetic excuse. I’d failed my first moment as a ‘disabled’ person.

There were many more shaming moments after that but for the first year I thought of you daily. 10 years later I still think of that sentence weekly: “not disabled or with a child then?” I’ve thought of more ways to reply than I can count. Some are angry: “You’re a terrible mother! How dare you shame someone publically!”, “You’re a judgemental bitch!” Some are pious: “I think you’ll find I am”, “I forgive you your prejudice.”

It was such a small moment, such a tiny thing. There have been bigger moments of shame: wetting myself in the school common room, tipping my wheelchair over and listening to the laughs for what felt like eternity until someone came to help… I often still get dirty looks for using the amenities that were put in place to help people like me.

So why have you stayed with me? Why has what you said played like a loop in my head?

Because you were the first; the first to ignore every outward sign of disability and see a young girl in a pretty dress using something you feel you have more right to. And every single bloody time the urge is to shame her.

Being a person with sensory difficulties in a crowd, whether that is at a party or in a club or even in a pub is pretty bloody scary! I’m deaf and blind in one eye so I need lots of light and space to know what is going on, otherwise I have no clue if there is a fire or where the exits are or… Basically, I have two options. With hearing aids I can hear this: (blur of horrible noise), without hearing aids I hear this: (very quiet blur, tinnitus)

I lipread but when it’s dark I can’t do that. Especially if there are flashing lights. Oh and I have no depth perception so I’m just guessing how far away you are from me or how deep the tread of the stairs are… Don’t get me wrong; I love going out, dancing, making out in front of the speaker, meeting new people, chatting but… I cannot stress enough how terrifying it is. To have no idea of what is outside of this tiny bubble touches something primal within me… I don’t need a rollercoaster, I can just go to a party.

Now, I think a lot of people in situations where they are very scared turn inwards, get quiet, maybe go and sit in a corner or possibly even do the sensible thing and explain to others that they don’t know what is going on. Do I do that? No! Of course not! I get stupidly loud and start jumping to conclusions about the topic of conversation, then shout nonsense in people’s faces.

Meanwhile, Claudia is stood there like: ‘oh god… please shut up…’

So, to combat this, dear friends, here are some signs you can use to keep me involved in the conversation and not just standing there shouting at you:

 

In today’s blog: HNPP, MCTD and POTS! What the hell are those I hear you ask? Exactly.

Exactly.

I’ve been procrastinating awfully about making this blog for three main reasons: (1) It makes me sad to think about sometimes (2) my disabilities are just part of me, knitted into the very fabric of my being, so it’s difficult to explain the differences to other people because… this is just who I am. And (3) I find disabilities very boring.

But I’m going to keep this Vaguely exciting for you!

I have two disabilities from which other symptoms and conditions come. They’re both genetic, I didn’t catch them from anywhere and I can’t pass them on to anyone through contact although sometimes I pretend I can when people are rude because that’s always faintly amusing. They are: Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) and Mixed Connective Tissue Disorder (MCTD).

HNPP is a disorder of the peripheral nerves- that’s the part of your nervous system outside the brain and spinal cord. It includes the cranial nerves and spinal nerves as well as their roots and branches. These nerves control the functions of sensation, movement and motor coordination.

In the most simplified terms:

Our nerves are supposed to have a coating around them called the myelin sheath, much like plastic insulation around electrical wires. I’m missing one of the two genes that creates that sheath so my myelin is very fragile and more susceptible to injury. Just the slightest pressure, stretch or repetitive movement on the nerve causes sections of the myelin to be lost leading to weakness and palsies.

Due to this, signals don’t get to my brain properly. It can take me a very long time to process anything and I have to be vigilant with my limbs, making sure they’re not too cold or have picked up an injury I didn’t notice.

Palsies (bits of me being paralysed) can last for days, weeks or even years. There is no way of knowing when they will come back or to what degree.

Next!

Mixed Connective Tissue Disorder (or ‘Disease’- doctors can switch between the two in the same sentence, oddly) is an autoimmune disease in which the body’s defence system attacks itself. It can have arthritic, cardiac, pulmonary and skin manifestations.

MCTD causes chronic joint pain, muscle inflammation, hyper-mobility, pulmonary hypertension, random fevers, digestive issues, fatigue, problems healing, joint dislocation, swelling and malaise.

Malaise is possibly the weirdest symptom you’ve ever heard of. It means ‘my body is saying something isn’t right. I don’t know what… but it isn’t right’.

As such, my immune system is terrible. If I stand next to an ill person I will get whatever they’ve got. If they sneeze near me then let’s just write off the next month. I’ll be in bed.

Around 80% of people with MCTD will have problems with their oesophagus- Personally, I find it incredibly hard to keep food down and sometimes I struggle swallowing. Dry food is my enemy and yogurt is my friend. I will eat soya yogurt with savoury food if I have to and it’s actually surprisingly delicious.

80% of people will also have problems with their lungs.

Not necessarily the same 80% as the oesophagus!

Only 10% of people have neurologic abnormalities and I’m unfortunately one of them. I have cognitive issues and I get vascular headaches- which feels like all of the muscles and blood vessels across my head are tightening and crushing my skull!

Secondarily is POTS, Postural Orthostatic Tachychardia Syndrome,

This affects the body’s autonomic nervous system- the things your body does without you having to think about it. My body thus just doesn’t regulate itself. I get hot flushes in the snow or on the beach, I start freezing on a warm summer’s day or a crisp autumn one and I randomly faint because my body has suddenly realised I’m standing. 

It’s worse if I’ve done something the day before or haven’t gotten enough sleep but it can also just happen whenever for no reason.

The crossover of my disorders also affects my hearing, vision and energy levels. Very sweetly, my body is just constantly trying to heal itself.

 

Frustrating.

New stuff seems to go wrong with me all the time and it’s horribly frustrating because just when I think everything is under control… suddenly it isn’t again!

But life with a disability isn’t all horrible and it doesn’t mean I have to be miserable.

 

 

The Happy Ending

If you’re reading this because you or someone you love has just been diagnosed with one of these conditions, the most important thing I can say to you is: it’s going to be okay. As a teenager I had all of these big plans about how my life would be, but then I paralysed both of my arms for a year and a half, had a medical procedure that went wrong and spent two years going in and out of hospital. It took me twice as long to do my A Levels as everyone else and it was bloody hard- I had to dictate my answers whilst lying on the floor in the dark. But I did it. I was determined to go to university and I did. I was determined to find someone who would love me regardless and I did.

It is going to seem like such an uphill struggle after your diagnosis, but this is just a part of who you are and it’s your life now. Find the fun, find what makes you happy, give yourself a break but keep achievable goals in mind and you’ll be okay.

And yes, some days all I do is vomit but I’m married, and I own a house and I have two adorable little doggies so I’m proud of how far I’ve come.