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Here's What It's Like To Live With A Tracheostomy

"The hole in my neck doesn't hold me back; I've done things many nondisabled people still have yet to do."
The author at her law school graudation.
The author at her law school graudation.

For some of you, having a hole in your neck may sound like something out of a horror movie. For me, it’s a means of survival. 

I have a tracheostomy, or a “trache”; it’s a hole in my trachea, in which a plastic tube sits to create an artificial airway, and then the tube is connected to a ventilator.

I have muscular dystrophy, a genetic condition that causes my muscles to progressively weaken. As a child, I had severe scoliosis of the spine, to the extent that my lungs were being gradually crushed by my curved torso. Eventually, I needed surgery to straighten my spine, and the surgeons told my parents that I wouldn’t survive the operation without having a trache inserted. 

I was 11 when I got my trache, and for a number of years, I found it really hard to deal with. It used to block up and I would suddenly be unable to breathe. After getting the trache, I had to get used to my chest making loud noises randomly during classes. When it would happen, I’d have to rush out of the room, often embarrassed. I also had to get used to people staring. I once went to a Doctor Who exhibition, and, as I entered the gift shop, all the children (and adults) stared and whispered because they thought I was a monster from the exhibit.

It’s challenging to look different when you’re young. Making friends is hard, and as a disabled child, it’s harder — and then when you’re a child with a trache and ventilator, it’s even harder. I always felt isolated, and it made me grow up very quickly and with few friends.

It’s challenging to look different when you’re young. I always felt isolated, and it made me grow up very quickly and with few friends.

Having an artificial airway requires a lot of maintenance. Most people with traches need to change their tube maybe once a fortnight or even once a month, but for me, it’s daily. Changing it is not painful at all ― one tube just slides out and a fresh tube takes its place ― but it is an odd sensation. You could liken the whole thing to clipping your toenails, a boring job that needs to be done and feels a little strange.

I also need to schedule time in my life for things that help keep my trache tube clear and free from secretions. I have a cough assist machine, which connects to my tube and helps me cough and dislodge any blockages. And my suction machine is literally a tiny vacuum that I can feed down into my trache tube to suck out any secretions. These machines are so loud that when I turn them on at night, my whole house shakes. Friends and family never want to sleep in the same hotel room with me when we travel because my ventilator and all of these machines make a lot of noise. Any future partners of mine have got to be heavy sleepers.

I come with a lot of baggage. We’re talking three bags of machines with me at all times, plus some spare ventilator batteries stashed somewhere. At my high school prom, the DJ’s music was so loud that I didn’t hear my ventilator beeping. It died suddenly and I didn’t have a spare battery nearby, so I lost consciousness. I’ve never traveled without spare batteries again.

There are other things about having a trache that aren’t that great. Like the fact that I get a lot of carbon dioxide headaches in the morning when my breathing changes throughout the night (it’s like waking up with a hangover). Or the fact that when I cry, it makes my trache and my nose block up with secretions.

But (and this is a big but) — I’m 22 now, and I’ve realized that living with a hole in my neck isn’t the end of the world and that my trache and ventilator don’t often hold me back.

I have just completed my master’s degree to become a lawyer in the U.K. I have done things many nondisabled people still haven’t done. I’ve been rock climbing, abseiling, canoeing and zip lining, all with my ventilator strapped to my body. I have flown a plane and completed a half marathon and acted in a professional play. 

Before I had my trache put in, I was using a noninvasive ventilator. This meant that my ventilator connected to a face mask, which covered my nose and mouth. For some people, this works well, but for me, it was detrimental. I couldn’t eat without taking my mask off (and then would be short of breath), so I just didn’t eat. I became dangerously thin and I had to have a feeding tube inserted. The mask also made it difficult for me to speak and be heard.

Now I can eat and speak to my heart’s content. Thanks to having a trache, I don’t need a feeding tube anymore, and I really enjoy public speaking now, which is lucky if you consider my chosen career path. My trache has actually improved my quality of life dramatically.

Not to mention, now I have friends! My best friend asked me if he could be trained in how to manage my trache and ventilator. We can now go on trips together, and we went to a Pride festival last summer. He accepts and actively tries to help me with all aspects of my disability. 

I’m a young woman, living my best life, about to become a lawyer, and I have a trache and ventilator. My tubes and machines have not taken anything away from me.

There’s also some fun to be had when you have a trache. I don’t breathe through my nose or mouth, so I can technically drink without pausing. This makes me the absolute best at downing pints.

My ventilator pipe lies on my body and can act as a great accessory. I dressed up as a Christmas tree once, so my pipe was glittered and wrapped in tinsel.

And, it gives me the crème de la crème of escape clauses: If I want to get out of something, I just say “the trache is causing me trouble,” and people feel so awkward they don’t question it. Sweet.

I’d be lying if I said that my trache doesn’t still impact my life. I often worry my trache will block up, or the ventilator will pop off at an inopportune moment.  But I’ve had a trache for half of my life now.

People often talk about how they would never want to live a life with tubes coming out of their body or attached to machines. Many medical professionals say that these things decrease your quality of life, and this perspective can lead to people choosing (or being pressured into choosing) death rather than a life filled with tubes and machines. This choice is a completely personal one.

However, let me tell you that my life, and the lives of countless other disabled people, have been vastly improved by invasive tubes and machines. I’m a young woman, living my best life, about to become a lawyer, and I have a trache and ventilator. My tubes and machines have not taken anything away from me.

The opposite is true: They have given me my good health, independence and voice. In a funny kind of way, I owe a lot of my happiness to having my trache and ventilator.

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