Saturday, September 4, 2010

Edited - My Brother's Keeper - for real

(Sorry about this posting and reposting. Something about blogger autosave and my sloppiness combined to produce versions with lots left out or in weird order. But this is the version I intended to post. I hope. Please dump all others.) You may listen above at "Listen" page

My big brother does not live nearby but he is in the same metropolitan area. Even so, not many people who know me now, have met Keith ( not his real name). The voices do not let him go out much. The voices, the evil wizards and the voodoo have been messing up his life for nearly 40 years. Just today, after banking, shopping and stopping in a Dunkin' for a celebratory coffee near his group home Keith said, " Let's make it quick. I am getting hit by voodoo pretty bad."

I have never seen Keith's wizards but I have seen their work and I am a believer. When you have a brother who looks like Charles Manson on a bender, it is easy to believe in the power of his 'evil wizards'. You may know the wizards by a different name  -  Schizophrenia?  It is an awful disease. In the wake of its ongoing devastation, it has become harder and harder for me to see the human being in the shell that Keith inhabits with all those jokers.

Do wizards like iced coffee? Keith ordered 4.
Today was different.
First of all, Keith was calling to say he didn't want help. That was flat out weird. He only calls when he wants help. But it was lucky because I was tired and not into being the good daughter who promised her dying mother she'd take care of her brother. Secondly, Keith needed a ride to the bank. Usually the staff takes everyone in a van, but they couldn't because of the holiday weekend and vacation schedules.  Keith had wanted me to come on Friday and now Saturday morning instead. He called to say he couldn't leave the house because the 'voodoo' wouldn't let him. I wanted to be far away by Saturday so I cajoled and reasoned. But Keith was adamant about the voodoo and I hung up thinking about all I could do with my morning instead of driving to Dedham and back. The phone rang just as I sat down to the computer. Keith had decided he could go out after all. He used to do all his banking at a branch downtown where every one knows him and I was dreading the 25+ mile round trip. But, Keith had worked out that the Shaw's, less than a mile from his house had a branch of his bank in it. And then, if I would wait, he could shop a bit, too. So I picked him up at about 10 AM.

So much cheese, so little time.
He had remembered that I missed the entrance last time we shopped and pointed it out to me. I would have driven by and missed it again. "Can you park a little closer to the store?" he said as we pulled into the lot.  "I feel a bit unsteady on my feet." I worry about all the meds they give him but, he was fine. He gets an SSI check and most people in his situation would have the group home be the 'rep payee'. But Keith and we, have been suspicious of the bureaucracy and traded convenience for autonomy and control. 'We 'are my my younger sister and I. We are Keith's  legal guardians.  Between the wizards,  the voodoo, the house rules, his treatment plan and the 12 medications he takes daily, there is damn little Keith controls, so we let him handle his money.

Usually Keith smells bad. Today he didn't. That was different. Sometimes he is overcome by all the medications he takes and falls so deeply asleep that he pees himself.  On bad days the voodoo or wizards insist he take "dry showers" - an invention of Keith's, which allow him to be in compliance with his hygiene plan, keep the voices happy and not get wet.  I know, Mother Theresa wouldn't trash talk my brother this way but then, I am no saint. Nor am I shy, or easily embarrassed,  but I will admit that shopping with Keith is anxiety provoking. When we are out together, I am always afraid someone will be freaked out by his appearance and either ridicule him or, out of fear, be openly hostile and attack.

Keith has a vocal tic which sounds like he is growling or revving an engine. Every 3 minutes or so,  he growls, then he shakes out his left arm and pulls his shoulder length hair from his face to back behind his ears. He has a very deep voice and lost all his teeth but rarely wears his dentures. Sometimes he talks back to the voices, and converses softly but audibly. Without his glasses he is legally blind but he doesn't wear them anymore. So he stares and blinks and then leans in to see. People are visibly shocked when they see him. Some people like to laugh about my brother's food habits. I grant you, one person with a cart full of 40 pounds of cheeses, 3 gallons of ice cream and 6 bags of Dorito's is curious. The thought of one person eating it all ? Astounding. But I am sure no one wants to have the hole inside their life* that Keith is trying to fill with all that junk. Or his chronic constipation. Perhaps some are a bit jealous because, even with his high calorie, heart stopping cholesterol laden diet, Keith is not overweight.

But this is all old hat. What I wanted to tell you, is what I saw today....

Keith was waiting in line to get a cashiers check to pay his rent when a woman in her early sixties rolled up and proceeded to steal the "who is the craziest person in this line " title right from under our noses. Even with his 6 foot tall frame, scary tics and full beard, this little lady with a small shopping cart and a huge voice was giving Keith a run for his $$$. She did not or could not modulate her voice. She was loud and whiny and getting very agitated about the wait. The line was long and not moving. She huffed and sighed. She stuck out her little hair covered chin and wagged it. She slapped at her cart with her bank book.  She complained that the line was too long! Why was the line so slow? She just needed her check cashed! Nobody cared! and she had medications to get!  She just needed her check cashed! And there was "A hurricane is coming! We gotta hurry."  She just needed her check cashed so she could shop and get home! Before the storm killed us all !

People in line shifted uneasily. They all looked away; some in disgust, some were embarrassed for her, some in fear. But Keith turned to her and said, "Don't worry, the storm is going to miss us. It 's not supposed to be so bad."  This only ramped up her anxiety and she started in on me after I seconded Keith's report. Keith didn't notice her reaction. He had gone to ask a teller if he could sit down and wait.  I stepped out of the line, and the line of fire. Sheeesh, she was not letting up!

I also needed a moment, because that kind gesture of Keith's, had made me tear up. Given all that he struggles with, he had heard her distress and reached out to help. All the normal people were taking cover yet, he responded.  It was such an "Adelaide" thing to do. Our mother, Adelaide taught us that everyone was, in fact, our brother. And we were all our brother's keepers.

Today was different.

Deep down, struggling with the wizards and the voodoo, the essential and genuine Keith is still here.

Yo' bro' - it's nice to hear from you.

* For Real by Bob Franke
There's a hole in the middle of the prettiest life
So the lawyers and the prophets say
Not your father nor your mother
Nor you lover's gonna ever make it go away
And there's too much darkness in an endless night
To be afraid of the way we feel
Let's be kind to each other
Not forever but for real

7 comments:

Tony Toledo said...

Wow, Norah, what a wonderful tribute to your brother, warts and all. Actually the accepting of the warts is the key to finding what ever peace we can. OK for me to read this at Speak UP? Ciao, Tony T

Linda Goodman said...

Norah, thank you for this intimate and very accurate peek into your life with your brother. My maternal grandfather and his mother both were schizophrenics. Now I have two young nieces with it. Watching them try to find some semblence of a "normal" life is heartbreaking. Bless you for being there. I know it is not easy.

Carolyn Stearns said...

As always said just walk in some one else's shoes. You are walking in a tough pair of shoes with grace!

Carolyn Stearns said...

If you think you have it tough just walk in someone else's shoes it's said,and how true! You walk in a very hard to wear pair of shoes with such grace! A shining example of brotherly love and of compasion. Thank you for sharing!

storyspace said...

wonderfully eloquent tribute!

Robin said...

I love the story and photos. I'm inspired to be more patient and kind and get my own blog going! You are a wonderful sister!

Robin said...

I love this story. I'm inspired to be more patient and kind. You are great sister!