The Reality Of Living With A Tracheostomy – Guest Post by Alex

Alex’s guest post is the 18th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Alex!

Hi there, my name is Alex, I’m 23 years old and a ‘neck breather’.

My Story

What is a neck breather I hear you ask? Well, when I was born my airway collapsed and as a result I am unable to breathe properly. Therefore, I have a tracheostomy, which is a tube in my neck that I 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.

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.

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 know. I need to let it go.

Additionally, I 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 getting blocked.

When I use my suction machine it makes a funny noise for about 30 seconds. Even after 23 years (jeez I’m old), I still get embarrassed using it. I know I shouldn’t, it’s helping me breathe, but the staring faces and little remarks I get don’t help. I was recently out at a café with my family and had to use my machine, the lady on the table next to me said, rather loudly, “what a disgusting noise”. It is so disheartening to be subjected to comments like this and it’s not unusual. I don’t WANT to use this machine, I have to, to keep my airway clean. Please don’t stare or make rude comments, if you’re genuinely interested, feel free to ask about it after I’ve finished, I’d much prefer this than someone just staring at me.

Since my tube can block at any time, I have to have a carer with me at all times so that if I need an emergency tube change, I have someone to assist me with it. This is a hard thing to accept, it can certainly make things awkward when growing up. I’m lucky to have an incredibly supportive family, my Dad actually came to University with me as my medical assistant and sat in the back of the lecture hall, so I had as much independence as I could.

The older I get the more awkward this may get and the future for me is very unknown. I can’t just register on any care list. This is because I don’t need the everyday care others need, I’m able to get dressed, eat, go the bathroom etc all by myself, the help I need is very medical and requires someone to specially trained in tracheostomy care.

Despite all the barriers my disability puts in the way, I’ve have a great life. I graduated from Derby Law School in 2017 with a 2:1 and am currently sitting my final exams on the Legal Practice Course.

Outside of law, I am a huge Derby County fan and follow the mighty rams home and away with my Dad, it was because of football I actually started my blog. I wanted to write about my experience as a disabled football fan and talk about disabled access at events such as football matches, concerts and festivals. I hope to one day be able to work with football clubs to improve disabled access and facilities at matches, making it a hobby everyone can do.

If you would like to read more about my story or keep up with my funny old life (it’s not as interesting as the Kardashians sorry), my blog is Notebook Of A Neck-Breather.

My Favourite Superhero

My favourite superhero is Wonder Woman because she’s such a badass role model for young women. She proves that girls can do anything a man can, if not better!

Thanks Alex for sharing your story with my readers and me!

If you would like to keep up to date with Alex, then you can find her on Twitter and Instagram!

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