THE BLOG
09/29/2015 08:28 am ET Updated Dec 06, 2017

An Open Letter to the Person Staring at My Medical Devices

Dear Person Staring At My Medical Devices,

Yes, I see your gaze linger on me as I walk into the room. I see the confusion in your eyes as you try to slyly glance at the many tubes protruding from my fragile body. The way you stop what you were doing briefly, then remember to try and act inconspicuous while clumsily attempting to pick back up your book, type at your computer, or play on your phone. Like a statue you had forgotten to move, frozen in place completely perplexed by the site in front of you. I often wonder what you think of me; what does this view look like to someone who has never been introduced to medical devices. To be honest with you, I had never met anyone with obvious life sustaining apparatuses before I was thrust into the world of illness so I truly have no idea what your perspective might be.

Though from what I can gather by your astonished gaze you are very intrigued by appearance, and perhaps worried I am simply lost on my way home from the local hospital.

When I first received my devices your stares truly bothered me, they made me feel alienated. I felt uncomfortable in my own skin every time I left the house because I knew your eyes would be waiting for me. It was as if I had suddenly lost all the confidence and self acceptance I had worked so hard to build over my 24 years of life. Your obvious gape made my insides churn with a mixture of embarrassment and truthfully, irritation.

Didn't your parents ever teach you not to stare at strangers?

I know you didn't mean to invoke these feelings in me, you simply were curious and not considering the emotional impact your gaze may have on me. Staring is part of human nature, a primal drive that takes over when we are alarmed or bewildered and I understand that; I truly do. You had no idea what I was going through at the time, no idea how difficult my life had suddenly become after the failure of my digestive system, and the deterioration of my lungs. This was an extremely tempestuous time in my life. Feelings of alienation were already stirring inside me before your curt glimpse...

How would I go out with friends for a night on the town now that I was tube fed? How would I handle family holidays where everyone was eating my favorite meals and I could not? How could I enjoy myself when I go out if I now have to judge my enjoyment by how long my oxygen tank lasts? How would I travel for extended vacations? Would my friends still want to be seen in public with me? Was I still beautiful? Could anyone see me, or do they just see my tank and tubes?

But how would you have known I was already an emotional mess. The fact is you knew nothing about my life, my circumstances, my struggles, or the repercussion your nonchalant glance would ensue. At times I honestly contemplated walking right up to you and asserting myself. Marching over and demanding your gaze be directed elsewhere. Insist that you were being rude and forgetting your common courtesy.

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Photo courtesy of Chanel White

I want you to know, person staring at my medical devices, that I no longer feel that way. What I have come to realize over the past year is that it is not your fault for staring. While yes, a few of your "glances" may have been a bit ridiculous, and extended in length, you were not trying to hurt me. You were not attempting to isolate me with your inspection; this was not scrutiny, it was pure curiosity. I am in no way exempting you from your need to better your manners when it comes to staring, but I want you to know that I am not insulted by them any longer. Let's be honest with ourselves, we ALL stare. I find myself staring at people all the time -- And I am not the only one.

An odd hair color, an eccentric outfit, or an interesting make-up choice may induce my wandering eyes for a moment too long. Embarrassed, I realize I too make the mistake of letting my gaze linger on those that implore my curiosity. So how can I debase your stares when I myself am guilty of this crime?

I decided I wanted to write you this letter to express how we can both change our actions to benefit everyone involved. I promise I will do my best to help you understand my situation, and you can make the effort to simply inquire. Instead of ogling next time you see me out at the local grocer you can polity ask what my devises are used for. If you are too shy to speak to me I understand, but then please remember, if you are really that shy you probably shouldn't be staring so obviously. If you are going to make the decision to stare try to make it modest, and maybe shoot me a smile afterwards. Acknowledging that yes, you did in fact gaze my way and know that I saw you. This will cut down the awkward intrusion I feel when you distinctly gawk, then pretend you didn't. That is honestly what frustrates me the most. I would much rather have the mutual recognition.

So since I have you here, let me explain what the interesting devices I am connected to are. That small piece of plastic hanging from my waist is a Feeding Tube. This device is given to individuals young and old who are unable to get enough nutrition by mouth. The reasoning behind placement can be anything from oral aversion, to failing organs. In my case, almost my entire digestive track is paralyzed due to a degenerative autoimmune disease known as Progressive Systemic Sclerosis (Scleroderma). This disease hardened the smooth muscle tissue in my digestive track resulting in a lack of peristalsis (the small waves that move food along), and an inability to absorb nutrients. My feeding tube is located in my abdomen and bypasses these malfunctioning organs. It provides my body nutrition in an easy to absorb, pre-digested formulation, constantly being supplied by a pump that regulates how much formula enters my system by the hour. All of this is hidden away, packed neatly into the backpack I wear. You may hear a small "whirring" if you are close enough to me, this is the sound of my pump busily buzzing to keep me fed.

The tank I tote behind me is supplemental oxygen, but you probably assumed that. The reason I am attached to this essential life support is due to the hardening of the smooth muscle tissue in my lungs, similar to that in my digestive track; this is known as Pulmonary Fibrosis. This build up makes everyday activities such as grocery shopping nearly impossible without help from my own personal supply of pure oxygen.

The large bump in my chest above my right breast is called a Port. This is a device located under my skin that gives my doctors access directly to my Superior Venna Cava, which is useful for medications that cannot be supplied through a small arm vein such as corrosive chemo-therapies. This device is especially helpful for Scleroderma patients as the vascular system, as well as the skin is affected by the hardening that is slowly distributing itself through out our bodies. My skin is thick and difficult to penetrate making IV access nearly impossible. Even when a successful stick is executed my vein may be too damaged to supply lasting access.

I personally am more than happy to talk with you about the devices that keeps me alive, or about the condition which caused me to be reliant on them. This is actually a great opportunity for me to spread awareness about my disease, and to educate other individuals like yourself about respectful ways to interact with patients like me. With my hectic medical schedule I have little time to speak to anyone besides doctor, nurses, or front desk staff, so our conversation could actually be the highlight of my day.

Looking forward to our next encounter,
The Girl You Are Staring At