Wednesday, July 10, 2019

Talking to Bellybuttons

I am writing this post to honor the memory of my sister, Terry Bittker, who throughout her life advocated on behalf of people with disabilities.

My sister had disabilities that were hard to put neatly into one diagnostic category. She had some health problems from birth, some she acquired along the way, and some were long standing but unrecognized.

Terry's constellation of problems didn't have a diagnosis, didn't fit into an identifiable group, didn't have a name. She wasn't like anyone else. Terry understood the difficulty of living with advancing Parkinson's Disease in a world where very few people understand what that means, more than anyone I know who doesn't have the disease themselves.

Terry's medical and health problems were not the greatest challenge in her life. They should have been, but they were not.

Her biggest challenge was finding a place she fit in, finding people like her. She wasn't completely normal, and she wasn't completely abnormal, something I now identify with as my disease advances.

Over the past few years she had mobility impairments that kept her housebound, for the most part.  She used an electric scooter to go out. The physical world if full of barriers when you can't stand up, walk, or go up a stair. It's nearly impossible to negotiate someone else's house. If you could enter, very rarely is there a home bathroom that can accommodate the needs of a disabled person. I have similar limitations from PD. Unlike Terry, I can still maneuver through a home, but can be uncomfortable, embarrassing, fatiguing, and sometimes unsafe.

We are/were loved by lots of people, but when you are homebound, single and live on your own, it can be a very lonely life. Nothing takes away your quality of life more than loneliness.

Terry longed for ways to reengage her life, to socialize more, to go out more, to  be with friends more. I have been more homebound and more lonely over the years, but because I have Parkinson's Disease, I am part of a community. I have support groups. The symptoms of PD are massive, diverse and affect every part of my mind and body, but they are all contained in one named diseased, shared by one million people in the United States alone. Parkinson's Disease has expanded my connections to others. I am not alone in my disease. Terry was.

Terry had a stubborn determination which served her well. She overcame developmental and educational obstacles. No one caught that she was hearing impaired unit the 4th grade. She missed 2/3 of every sound, word, conversation and lesson in her life. My sister graduated from Gallaudet College. She received her Master's Degree in Social Work from the University of Maryland, acquiring the skill set she needed to help disabled people get the accommodations they are entitled to by law, and to get them at no cost.

Still, those accomplishments often did not give her the acceptance and inclusion she deserved. The world can be very unkind to people they don't understand. There are people who don't even try to understand someone different from themselves or someone they cannot put into a category they already know.

Many are impatient, frustrated, and even angry when such folks get in their way or interfere in the pace of their day. Some reject, ridicule or feel repulsed. Many with great compassion and the kindest of intentions, give a smile. But it's not a peer-driven, "Hey, how ya doin" while you're passing by kind of smile. It's a smile that comes from pity.

From those who gave her automatic disapproval and withdrew to those who gave her unconditional approval and attached, my sister was often not seen for who she was. And that's their loss.

The people who saw Terry for who she was, developed lifelong friendships. Terry had the longest and strongest friendships of anyone I've ever known.

Growing up, we didn't know there was anything wrong with Terry. We wanted her to do what we, her two older sisters, did. Often she couldn't and we would be frustrated. We didn't always defend her or protect her from others who would humiliate her, belittle her or shame her.

As a young adult I could be impatient with her. She was time consuming. She often did not get top priority in my life-listening-time. I didn't always appreciate the significance of her accomplishments.

As a new mother, I didn't trust anyone to hold my babies or care for my kids, but trusted some others more than Terry. She knew the score, and for the past 36 years, at least once a month, I heard about it!

It wasn't that Terry carried a grudge. It's that she knew right from wrong. Terry had boundaries. Limits. When you crossed her boundary, you knew about it. Our family used to say "Terry tells it like it is," when she would blurt out what everyone was thinking but no one was saying.

To "Tell it like it is" you have to "See it like it is." Terry developed a keen eye for discrimination, intolerance and unfairness. She also developed thick skin, was tough, and didn't hesitate to speak her mind. She would call anyone out when they were not doing right by the disabled.

Parkinson's disease is not a disease for the self conscious. My sister was not self conscious. She demanded to be recognized with dignity. I remain self conscious, often trying to hide the indignities of my disease.

I no longer feel comfortable in groups of normal people. I have panic attacks when my movement freezes up and I have to walk in front of people I don't know. I only feel comfortable with other people/ patients With Parkinsons, with family and close friends.

Terry understood what it's like to walk into a store and have everyone look at you, wondering what is wrong with you. She understood what it's like to have people avoid you, like when I am breathless, dyskinetic, thrashing about, walking like a drunk person with words spilling out of my mouth faster than the thoughts they represent. I can't do what I used to be able to do. I over promise and under deliver. I'm not who I was, in many ways.

It embarrasses me that often, I have to sit and cannot stand. I avoid parties and group meetings where there is a cocktail hour and people stand, mulling about the room.

I absolutely hate when I am sitting down and someone comes over to talk to me and STANDS in front of me. They don't know that I am unable to lift my head to look far up enough to see their face.

Thus, I get stuck talking to bellybuttons.

I wish everybody would sit down whenever they talk to a person who is sitting down because they are unable to stand. No one wants to talk to bellybuttons.

When talking to a bellybutton, I should speak up. Terry would.

She would not have made whispered requests, like I do - embarrassed, apologetic, as though I'm asking for a favor.

She would have said it like it is. "I do not want to talk to your belly button. If you want to talk to me, sit down!"

You would have gotten that right, sister! And now, I will too.

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