Tuesday, January 13, 2015

Labels

We live in a world of labels. There are certain labels I've learned to accept over the past fifteen years of illness. Some people just label me as sick. Others see me as nothing but a girl with oxygen tubing in her nose. Two years ago, I had my first experience with making a child cry out of fear at the sight of me. It was one of those moments that was almost frozen in time.

I recall smiling at her as I stood near her mom's cart in the grocery store. The precious little girl was staring at me. I smiled and sent her a little wave. Instead of getting a smile in return, I saw her face dissolve into fear and she started crying to her mom as she pointed at me like I was some kind of monster. I can't remember a time when I felt the desire to flea the scene as much as I did at that moment.

I have long gotten used to the 24/7 oxygen I must wear ever since the H1N1 in 2009 that made it a requirement. But that night, it felt like a mask of terror that I couldn't take off,  at least not without slowing losing the ability to breathe. Being oxygen dependent didn't seem so much like a disability until the last few years as my strength has started coming back in phases and my desire to pursue dating and getting back out into the world has been lighting a fire in my heart. The feisty Jessica is coming back, but then another obstacle comes, and she feels like that "real" life is as far away as the moon.     

My most recent hospitalization, I was discharged on Christmas Eve, and a nurse met us at home to teach my mom how to administer the remaining 48 more hours of antibiotics through my PICC line. My pneumonia was pretty serious, so the nurse felt the need to talk FOREVER about what and how things needed to be done. She asked me a million questions, and at the end of our discussion she said, "So you're basically homebound."

As true as that statement may be, it was literally like taking a bullet to the heart. When you spend every weekday alone, it takes a positive attitude in order not to submit to the abyss of depression that comes with the isolation.  It has been years since I have gone out with friends for a coffee or dinner out. Truthfully, many of my friends have gone their own way as I have gone mine, with my way being into the depth of my disease. What's ironic is that I'm healthier now than I've been in a long time, but many relationships have gone beyond the point of mending.  I've been in isolation so long, it's almost like being forgotten.

I never saw myself as "homebound" because it carried for me a very negative connotation. For me, it implied a person who has buried herself so deep into her home that there is no hope of drawing her out. It was something older people do who have lots of cats and are hoarders on some level. It couldn't possibly be me. I'm 38. I still hope to have a life ahead of me. I still hope to be independent someday. And that may be, but this has been the season of harsh realities.

Just a week after be referred to as "homebound", I had an appointment with my PCP. She and I are days apart in age (she's older.) We were going over all the details of my recent hospitalization, and she was talking about how truly sick I was. I, per usual, crumbled into a sea of tears as I almost always do in my appointments with her. I was telling her how frustrated I was that every time I stand back up, something else knocks me back down. My September surgery had gone so well, and I was hoping to end the year on a positive note. This pneumonia had another idea, and it just made it very clear that I need to be on this oxygen for now, despite my goals of getting off of it.

I asked her, "What kind of man is ever going to date a woman, kiss a woman, make love to a woman on oxygen?"

She replied, "You may be able to find someone else with a disability."

Fortunately I was already crying, so she couldn't tell how hurtful her statement was. It certainly knocked me down a few notches on my pride, if nothing else. More than anything, it made me realize that the plastic tubing hanging from my nose doesn't just drive children to tears, but it qualifies as disabled. So I am homebound with a disability. My stock has taken a huge hit these past few weeks. Looking back, I shouldn't have been so upset, because a person with a disability is no less lovable than someone without one. No less lovable than me or the man I may find.

I got home from my appointment feeling more lost than usual. One of the big downfalls of being "homebound" is all the time and isolation to overthink things that probably don't deserve the time.  So yes, I need a little extra help breathing, but things could be SO much worse. Who knows if that little girl in the produce department was crying about my Oxygen tubing. My hair just might have looked like shit that day.

The word "disability" is just a label. It has nothing to do with who I am now or who I will be. Focusing less on my disability and more time on my love of writing, I am taking charge of what I will become. Perhaps one day I will be labeled a New York Times Bestseller. Time will tell.

As for being homebound, I've started to rethink that word. In the midst of this cold, cold winter, every time I even open the door to let my dog out, I feel so fortunate for having a home. Just the wind against the window makes me think of all the homeless children who are growing up on the streets without blankets and roofs. There are whole families who have nowhere to go. It's all heartbreaking to think about. So when I think of it that way, I'm beyond grateful for being homebound. For the other reasons I'm "homebound", they'll work out in time.

As for love, I'll find it. Or it will find me. Perhaps our disabilities will be the thing that links us.  Hopefully we'll find each other as I enter the Spring of my life. I believe love will come, someday soon.