Finding "Home"

I think most people have heard the quote, "Home is where the heart is." Since it's craft fair season, I've been seeing it a lot on homemade items for sale - dish towels, wooden plaques, wall hangings, etc. The emphasis is clearly on home as a place, and it makes me wonder if "home," for most people, is a place. For me, "home" is sometimes a place, but sometimes it isn't. Sometimes, home for me is a person - or a feeling.

This week, October 20th to 26th, makes me dwell on the concept of home. If my Nana was still alive, she would have turned ninety-five this week, and this week also marks the nineteenth anniversary of her death. Nineteen years. How have nineteen years passed since she died? It seems absurd. She still has such an active presence in my life, yet she's been gone nineteen years already. Where did the time go?

My Nana died when I was five years old. She was a huge part of my upbringing from the time I was born; I saw her almost every day, I was constantly sleeping over her house, and in many ways, she felt more like my third parent than my grandmother. All my early memories are of her; I have almost none of my parents. My parents and I lived with her for the first two years of my life, and then while my parents were at work or needed some time for themselves as a couple, she was the one who watched me. When I was an infant, she was one of people who got up at night when I cried. From the day my mother brought me home from the hospital until she went to the hospital days before she died, she soothed me. She fed me, she changed my diapers, she bathed me, and she tucked me in at night. She held me, she played with me, and she helped me learn to walk and talk. She took me everywhere - to the park, to the docks, to my friend's house... had she ever learned to drive, she probably would have taken me to school. She loved me to pieces, as I loved her.

When she died, the one thing I never did was blame her. I felt absolutely shattered, but I knew that if she had the choice, she wouldn't have left me then. I learned, at a very early age, that even when people want to be there for you and say they'll never leave, sometimes they don't have a choice. It doesn't mean they love you any less. It doesn't mean they've abandoned you. And the one thing I've constantly thought since then is that even though in a way she left, she's never really ever left me at all.

My home was her. My home was a person, the person who made me feel safe and protected and loved. It wasn't a building, it was her. When she died, I craved a place to feel close to her. My parents and I used to drive past her house every holiday on the way to or from my aunts' house. It was almost like visiting her grave, since she had chosen to be cremated and have her ashes scattered. For the longest time, I thought it was the place that felt like home, but it isn't so much as the place itself as it is the feelings it allows me to bring forth. It's painful to think about loss, and being in that place helps me get home; home to her and those feelings of being safe and protected and loved.

Over the years, my home has expanded - it's been places, mostly, and sometimes feelings. The feeling of freedom that college provided me with and my dorm room were my home for a few years. My father's house has been my home, on and off - or rather, my bedroom has been, maybe even just my bed, at times. My Nana, to this day, is still a part of my home. When people say you can't go home again, I think they're wrong - sometimes you can. Some homes will always be there for you to go back to.

It took my boyfriend saying that his home wasn't a place, it was a person, for me to finally understand why I didn't feel like my house was my home. It took him telling me that I was his home for me to realize that he has become a huge part of mine. When I was around my Nana, she made me feel like I could do anything; I didn't have to fear the world. I knew she'd be right there to help me back up if I fell, and she'd never love me less for trying. He makes me feel, in many respects, the same way. Around him, I can do things I never believed I would be able to, because I finally have the ability to let myself. He's reminded me that I have a home, that I don't need a place. And all I have to do is look into my heart, because the people and feelings that are my home can always be found there. I can be home anywhere, as long as I remember my heart.

What is "home" for you?

Unhappy Birthday to You

Last Saturday, I turned 24. It didn't feel much like a birthday, in part because for the first time I wasn't around any of my family members, and partially because what was supposed to be a lovely day out was ruined by the ignorance of others about invisible/hidden disabilities.

As I mentioned in my last post, I have Ehlers-Danlos Syndrome. It manifests itself in various ways throughout my body, but currently, my most severe symptoms have to do with my joints. Just about all of my moveable joints sublux and/or dislocate on a regular basis; I sublux almost constantly during the day, and I usually experience dislocations a few times a week. None of my joints are in great condition, but my ankles are significantly worse than my other joints. I wear braces on them daily, which I usually cover with pants.

The main reason I choose to cover my braces is to avoid drawing attention to myself. I'm the type of person who likes to try and fly under the radar; I HATE it when I get attention called to me. It makes me really uncomfortable. Most of that stems from growing up undiagnosed. As a child and a teenager, I was constantly injured. My injuries never healed in the normal amount of time, and that caused people to notice me - negatively. Doctors, teachers, classmates, and even friends and family members constantly questioned me. Doctors wrote me off as a hypochondriac when I insisted I still had a ton of pain and that physical therapy wasn't doing anything for me. Teachers gave me a hard time about affording me the accomodations I'd been approved for, giving me a hard time about things like getting me photocopies of the notes because I couldn't write. I found out later they discussed me openly in the staff room, insisting I was just, "Being a pain in the ass." Classmates made no secret about their disbelief - even though I wasn't allowed to carry things, almost no one was willing to volunteer to carry my bag to my next class. A couple people went as far, in the early days of AIM, as making a fake username and harassing me, telling me I wanted attention, that I was a faker and a liar, that no one would ever love me, that no one liked me, that I was good for nothing. My friends had a hard time believing me, as did my family. They never knew me to be a liar, but the sort of things happening to me were things they believed didn't happen to people - or only happened to people with a known genetic condition.

In some ways, other people treating me the way they did was more disabling than any of my injuries. I learned to hide myself away, hide the pain, hide the suffering. It was very unhealthy, but that's how I coped.

For my birthday, my boyfriend wanted to do something he thought would make me really happy, and he searched for months to find us tickets for a Broadway show I wanted to see. I was so excited, and on the day of my birthday, we headed into NYC set on having a lovely day. We got up to the theater, got our seats (second row!), and everything was going wonderfully... until I was harassed three different times, by three different ushers, because my disability is hidden. I was on line for the handicapped restroom, since the other bathrooms are up or down several stairs, and with my ankles, I can't do stairs. I got stared at. I got glared at. I got told this restroom was not for my use. I was told the bathrooms for my use were upstairs or downstairs. I was treated with disbelief. I was targeted, because I look young and vital, and I choose to cover my braces so that people don't stare at me everywhere I go.

After the third usher approached me, she tried to explain that the policy of questioning people on line like me was to preserve my use of the restroom, that the policy was in place for my own good. I responded, through tears, that when a policy unfairly targets and harasses the people it's trying to protect, it's obviously not working, and it harms people that are already dealing with enough. No one has the right to judge me - or anyone - based on my outward appearance.

Many, many disabilities are hidden or invisible. People who are disabled don't like being stared at, and those of us who can mask our disabilities often choose to, because we'd rather be seen as people before we're seen as disabled people. This is something that people need to realize. People with hidden or invisible disabilities are already suffering enough, the last thing we need is someone harassing us "for our own good." What we need is people that are compassionate and understanding, who are educated enough to know that just because a person isn't in a wheelchair doesn't mean they're not disabled. Disabilities, like people, come in all shapes and sizes, and appearances can be deceiving.

My experiences - and ruined birthday - could have easily been prevented, had the staff members not been so quick to judge, so uneducated about disabilities, and so arrogant. I told as much to the house manager, who encouraged me to write to the organization that owns the theater, offered me free tickets to come back, and said she'd speak to the staff. It was a nice offer, to be sure, but in order to take it, because I am disabled, there are so many complications:

1. I'd have to take a train into the city again. Trains cost money, to the tune of $50 for two round-trip tickets. Aside from the fact I'm a law student with no money, trains are difficult for me to travel on because of my joints. The jostling causes they to sublux and/or dislocate the whole ride there, and the whole ride back.
2. I'd have to come up with the money to take cabs up and back to the theater again. Like I said, I'm a broke law student. Subways and walking, which are great options for most people, aren't an option for me.
3. I'd have to find the time to actually GO to another show. I'm in class Monday through Thursday, from the morning through the evening every day but Thursday. If there are even shows on Thursdays, I'd have to try to take a train in during rush hour, which usually means there's zero seating left by the time I'd board. I can't stand for an hour train ride, because of my disability. On Friday, I work the entire day. On Saturdays, I usually have some time, provided I'm not cleaning, doing laundry, or running errands, i.e. doing all the things I don't have time for during the week. On Sundays, I spend the entire day doing homework to get ready for my next marathon week.

You would think, at a show that prominently features a disabled character with a not-so-obvious physical disability, that the staff would be more sensitive to the fact that people have hidden and invisible disabilities. The irony was not lost on me.