Feeling the Fear (and trying not to do it anyway)

Feeling the Fear

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I know no one has to justify themselves or a fear but I feel I have to.

I have a fear of pain - (needles, injections, surgery...). For the latter, you may say, 'get knocked out!' but anaesthetic also fills me with dread.

Here’s why:

When I was little, I had four teeth out, by the dentist, under anaesthetic. My mum held my hand, watching as people went in and came out. I lay sleeping still. She stroked my hand, willing me to wake up. When I finally did, a bit of my brain had been lost, and my balance occasionally went and I’d fall.

A few years later we couldn’t find out why I tired easily and was so wobbly, the GP sent me to the local Children's Hospital for tests. 

I had many tests, including a muscle biopsy. For this, I had to be knocked out with anaesthetic. The test results showed I have Leigh Syndrome, a mitochondrial disease that my little brother died to aged 19 months. It’s progressive, as the mitochondria that fuel your brain, muscles, organs etc to function, die off. It’s also genetic. 

I have lost many dreams to this condition. 

That, combined with the trauma to my poor twelve year old body caused an irreversible health deterioration. I walked into the hospital and left using a wheelchair. For the next six months, I lost even more balance and mobility. I was so, so ill too, being sick every day, with dreadful dizziness and a pounding headache.

Currently, I have little balance, poor mobility, dystonia pain, am half blind, and a quarter deaf.

I am terrified what skill I'll lose if I have another surgery.

Throughout this year, I've had an ear infection and have been back and forth to the ENT Hospital. I've had numerous antibiotic drops, but only one, the last lot worked.

For a separate issue, I had an MRI and for the ears, I had a CT scan to look at the bone structure, both in October.

In September, the ENT doctor told me I may need an operation on my ear. Cue fear that has kept me awake most nights since.

Questions swim through my mind, like: What skill will I lose next? How bad will the aftermath be? Will I be able to wear headphones or will it hurt too much?

I was then given a piece of paper that my mum read to me. It listed the ins and outs of the proposed operation, including the risks.

In repairing a ruptured eardrum, they drill a hole into the skull! Drills are for walls and roads, not delicate bone structures, like skulls, which keeps the brain in place.

A risk of this, with the ear being so close to the brain, is 'leakage of the brain fluid'. My brain is the only attribute I have. I don't want it spilling out everywhere! Rather ironically, an operation to save my hearing could actually cause permanent deafness! My health is getting worse. The tinnitus has at least two layers - a humming background noise and a constant tinging/banging sound. It’s hard to hear over, especially in loud places like cafes.

Another risk is facial paralysis - I am only just feeling confident doing short videos. I also enjoy my food. And I have quite a nice smile (although it is seen less nowadays). I don't want to lose these things. What if I don't get them back?

My fear not only is the anaesthetic causing a deterioration and skill loss, and something going wrong, but also the pain. I am a huge wimp. How bad will the headache be? Will I be able to sleep on my right side? Will I be dizzy afterwards? I hate being sick and hate going dizzy. How long will the recovery be? Would a brain infection really be worse? (that's the alternative risk if I don’t have it done). I lie awake wondering which is worse - dying of a brain infection or losing so much of myself that I die anyway. Mito is terminal, so what more can I expect?

It’s funny the responses people have: some say, 'try not to think about it', which is like telling someone, 'Don’t think about the lion that’s about to eat you.' Others say, 'be strong/brave/positive'. I know they don’t know what to say, but I am tired of being the one relied upon to be all those adjectives. I feel like all I do is fight. I fight, beg, whatever you want to call it, for: Alt text on Twitter, wheelchair access, audio description, access, hospital access, medical understanding of mitochondrial disease, healthcare, medications, equipment. It’s exhausting feeling like you’re talking to a wall and not getting anywhere. When will someone fight for me?

There’s so much pressure on the disabled and chronically ill community to be inspirational, positive despite being constantly discriminated against, heroic, even, when we're just normal human beings. Would the non-disabled listen to their counterparts or brush their worries aside? If someone trusts you enough to share their concerns, don't say, 'buck up', or worse 'ah, well, we all die someday', instead, listen, give us validation.

I guess I’ve been fortunate these last twenty years in that I’ve not needed surgery and turned down anything that I knew was too painful or I couldn't handle.

The ear infection has spread to my mastoid bone now, does this mean the decision will be taken out of my hands?