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  • Alex Steward

The Life of a Neckbreather

I think we all know I could talk about football forever, but the most common questions I get from my blog are about my disability. I haven't spoken in huge amounts about my condition, mostly because I didn't think it was that interesting, but apparently it is so here goes.

I have a rare condition called Larsen’s Syndrome, which affects the development of the body and caused my airway to collapse when I was born. I spent my first few days on a ventilator in Queens Medical Hospital Nottingham (I know, I know I was born in Nottingham sorry.) I stopped breathing at 2 weeks old and had a tracheostomy put in to save my life.

A tracheostomy is an incision made in the front of your neck so you can have a tube put in to breathe through. When you compare it to breathing through your mouth and nose, I have a very small airway meaning I get out of breath much faster than the average person does, therefore I use a manual wheelchair when out and about.

Additionally, I have to carry round a piece of medical equipment with me at all times called a suction unit. This machine helps clean my tube when I cough and prevents my tube from blocking.

If my tube does get blocked, I can't breathe and have to have an emergency tube change. This is something I can't do alone and is the reason I have a carer.

It's hard to explain the feeling when my tube blocks, it's a scary moment because I can't take air in properly, and I often start to shake and get upset, I wouldn't wish it on anyone.

This is just one of many things you don't see, I think I'm pretty good at hiding all the little things I have to deal with. For example, my suction unit is not the only piece of medical equipment I use on a daily basis, it's just the only one I take out in public.

Every night I wear a humidifier mask, which stops me from drying out overnight and prevents me from having coughing fits in the morning. I notice a big difference to my morning life compared to before I started using a humidifier, and I sleep a lot better, whereas before I would cough a lot more during the night. As helpful as it is, the hot air blasting in your face all night isn't a pleasant feeling.

Once I wake up, I have a nebuliser. Nebulisers produce steam to help relieve any wheezing and breathlessness. I have a nebuliser every morning and night, but more frequently if I have a cold (let's not even get into that.) They take about 15-20 minutes, but I just chill and watch Netflix whilst I have it. It can be frustrating, and kind of stops me from getting up and at it in the morning. Sometimes I don't want to get out of bed because I know I've got to have my nebuliser, it's not the most thrilling way to start your day.

To be able to speak, I have to put my thumb over my trachy, forcing the air upwards. This makes me more breathless, because I’m stopping the air getting in, but the alternative is not speaking! Having a tracheostomy means I have a very croaky voice. My friends and family compare me to Darth Vader and Marge Simpson, which should give you an idea of how I sound. I know, my friends and family are really funny aren’t they *eye roll*.

Despite having a quiet voice, I can communicate pretty well. Unfortunately, I do get misunderstood sometimes, but this is expected. It can be awkward though, especially when the barista at Starbucks gives you the wrong drink, but once I’ve said something a second time, I generally get on ok. It’s much harder to understand me over the telephone, which is why I try to avoid it at all costs.

I appreciate that it can be hard understanding someone with a different voice, but imagine how frustrating it is for the person with that different voice, try and have a bit of patience with people like me, we really are trying the best we can. Oh, and my Starbucks order is a mocha not a cappuccino ‘Dan’. I mean, do they even sound the same?! I know, I need to let it go.

I realise I've talked a lot, and only about my tracheostomy, so this is going to be a long read; maybe go get a cuppa. My tracheostomy is just one part of my disability, albeit the main difficulty with my condition.

I also have a double scoliosis, which is a two-way curvature of the spine. I had a spinal fusion when I was about 5 years old. This 6 hour long operation involves the curved vertebrae being fused together (to stop them getting any worse) and held in place by metal rods.

I don't remember a lot about this operation other than that morphine was my best friend, but the surgery was a success and my metal rods are still in place today. Having the metal rods put in place at such a young age prevented me from growing. That, with the addition of the fact that short stature is common with Larsen’s Syndrome, means I measure up at a wild 4 ft 3 (ish.) However, I'm grateful I didn't grow any taller, as if I did there was a chance I would have to have my spinal fusion re-done - I'd rather be tiny than go through that again. My back doesn't affect me too much in my day to day life, I can feel the rods at the top of my spine, but they don't hurt, they're just there. They're a part of me now, I'm basically part robot.

As if breathing difficulties, sounding like Darth Vader and being part tin man wasn't enough, I'm also hard of hearing. I wear two hearing aids, and although I hear pretty well with them, they can be a nuisance. Hearing aids are great when they work, but unfortunately due to how delicate they are, they break easily and struggle in loud environments. I find it hard to have conversations in busy restaurants or bars because my hearing aids are so distracted by all the background noise, and I can't focus on one person’s voice. Thankfully I learnt to lip read from an early age.

It's funny, but out of all the issues discussed I get most upset when one of my hearing aids break and I can't hear properly, it's like it's the final straw for me. I absolutely hate going without them and have to get them fixed ASAP.

Although I certainly face a lot of barriers in my life, I am very grateful for the things I am able to do, I think that is something we all need to do in life. We can all moan about the things that go wrong in our lives, I could easily spend every day of my life sulking in bed, but where would that get me? It's important to stay positive and appreciate every day you have.

Thank you for reading this blog post, I was really nervous to share it, however I have a lot of stories to share. If you are interested in reading more about my disability, operations etc please do let me know!

Speak soon, Alex.

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