Dear you, whoever you may be,
There are some mornings that I wake up feeling like Eleanore who just happens to have a profusion of medical conditions. Most days, I wake up feeling like a sick girl, my name and everything else taking a back seat. Neither is ideal, but the first is usually preferred as I still hold my identity. With the second, I don’t feel like any version of myself at all. When I look in the mirror, I don’t see an aspiring writer, a friend, or a sister; I see a pale, sickly girl with sunken eyes on the verge of tears, staring down uncertainty.
I ponder more than I probably should about how illness robs a person of their identity. In a perfect coincidence this morning, a friend tagged me in this video not long after I woke up, about a clothing designer who took to making hospital gowns for chronically ill teens so that they are still allowed to be themselves during hospitalization. One girl states, “Being in a hospital gown is like being is a hospital. There’s nothing good about it.” A boy immediately after says, “It sorta feels like my identity has been stripped away from me.”
These teens will never know how badly I, a chronically ill adult who once was a chronically ill teen, wanted to rip through the computer screen and hold them as we cried together for their pain. The look on their faces when the new, unique gowns are carted in are astounding. My sad tears morphed into happy ones, but didn’t fall from my eyes any less quickly.
For a while I was speechless because there was so much about this subject that I wanted to pour out of my heart. Due to feeling somewhat empty today myself, I lack the ability to open my heart wide enough to do so, and all I replied was, “Very rad. Nothing strips a person of their being faster than a hospital gown and a bed used by millions of sick people before them.” Then I remembered that because I am the sort of person who regularly has their heart burst from an overload of emotion, I have a blog. As it so happens, my blog is just perfect for this exact sort of thing, so I now find myself ferociously typing as much as I can get out before I must pause for work.
A hospital bed and a hospital gown rob you of your identity quickly as possible; they are thieves of the soul that accompany the rest of the misery that comes with being sick. After so many of my own hospitalizations, I remember the first thing I would usually ask my doctors was, “can I please put my clothes on now?”
I understand (as these teens do I am sure) why we are put into these gowns, and we know it makes sense. We aren’t ungrateful for receiving medical care (after all, the one good thing about being in the hospital is that you’re getting the treatment you need). But that being said, receiving proper treatment should not have total annihilation of one’s identity as a part of it.The feeling of losing your identity is not a slow, steady decline. All too often, just like our health, it is ripped from us. That tearing leaves a hole. This isn’t the fault of the patient, the nurses or the doctors. If anything, the only one we can truly blame for this is the illness itself.
I’ll never forget my nurse, Marie, at Stanford. Every morning she brushed my (at the time) long, thick, messy hair for me so that I would look somewhat decent when visitors came, and every night tied it up in a high bun so that it would stay nice until the next day. Marie doing my hair for me each morning and night was the only thing that kept me feeling human among the tubes, the gown, and the blinding shades of white that covered my hospital room.
Confession: this post has been several days in the making, as it has been a difficult week. Every day since writing the first paragraph, I have woken up feeling the same. Not as myself who happens to be sick, but as just a package of sick. It’s not the best set up to get through the rest of any day, but it’s what I have been given these last few days, so I am dealing with it as best as possible.
Many people who aren’t like myself don’t understand that once your identity is stripped from your being by illness, hospital gowns and the like, it doesn’t automatically snap back once you’re home and back in your favorite clothes. I have been chronically ill my entire life, and because of that, I’ve never thought much about my life goals, a dream career, or what I’d like my future to look like. I have ideas here and there, but nothing ever really sticks.
For people such as myself the future is irrelevant, because it is so uncertain if we’ll even get that far. We have to use so much energy to get through each day that there isn’t much strength left for a week ahead, let alone an entire year. Just this past week I was asked what my life goals are. My response was, “I really don’t know, but I enjoy writing.” If I were 15 or 16, that wouldn’t be such a terrible answer. But I am 26, and while most of my friends have careers, families, wedding to plan, children, or are at least working towards one of those, I’m sitting here saying, “I don’t know, but I like writing.” I can’t help but feel a little pathetic.
For lack of a more articulate expression, it really fucking sucks having to wrestle my identity from the wicked clutches of my illnesses on a daily basis. I fear that this will never stop, and considering all of my illnesses are incurable, there’s a fairly good chance that it won’t. It is extremely disruptive to my life when I wake up most mornings, look into a mirror, and feel as if I’m looking at nothing more than a plain piece of paper. I suppose the only way to combat this is to literally, every day, fight to push meaning into my identity, yet I am unsure of how to do so. It sounds exhausting.
The one positive message that comes out of this slightly bleak post is this: those people who actively work to return the feeling of being human to those who are overwhelmed by illness are awe-inspiring. This designer who makes these gorgeous hospital gowns, my nurse who simply brushed my hair and treated me like a girl and not just another bar code on a weak wrist, and friends and family who do little things here and there to remind us that we most certainly are more than our diseases, syndromes, and most importantly, more than our pain.Hopefully as I get older, I’ll be able to look in the mirror and see more than a zombie girl.
Well I crossed the river, fell into the sea.
Where the non-believers go beyond belief.
Then I scratched the surface in the mouth of hell,
Running out of service, in the blood I fell.
Well I, I just want to see the light.
And I, I don’t want to lose my sight
Well I, I just want to see the light
And I need to know what’s worth the fight.