February 2007

My Aunt who has lung cancer and COPD moved to Miami last week. First of all, lung cancer and COPD basically mean that she is not only screwed when it comes to her breathing, but she is messed up every which way. A MRI of her brain this week will tell us just how far the cancer spread in its attack on her body, but we already know one of her lymph nodes has ballooned. Time. We just do not know how much time she has left, but we can all feel the breath being choked out of what little time we were counting on when we knew she had the COPD but not the cancer.

Secondly, this whole situation is fucked because she SWORE, circa 1975, that she would never never never ever ever ever live in Miami again. She moved to Ocala leaving the corporate world of Esso behind and worked with horses or on horse farms for the majority of the last thirty years. She also lived in a trailer in the stix and mostly as a private person with little contact beyond her job and family…well, sisters. Until this last weekend, I had not seen her since Christmas 1997. I remember our last meeting very well because of the momentous occasion of beating her for the one and only time at Super Boggle! But I digress. My point is that she has hid away from friends and countrymen for the last thirty years, and she now lives back in the one place she swore she would never set foot in, let alone live.

Last fall she called my aunt who lives here in Miami asking to move in with her due to realizing she could no longer take care of herself. She could hardly breathe just trying to go to the grocery store. Another aunt turned her down–I do not think she realized how serious the situation had become–and out of total desperation called the Miami aunt. At the time I pointed out to Ms. Audrey that I thought she probably could not take care of herself for awhile, given how notoriously stubborn the woman prides herself in being. What it must have taken to make that phone call? She had to admit weakness, need and ask to move in with someone who would have to take responsibility to care for her. She also had to admit to herself that her needs evolved to such a desperate state that living in Miami became the least of her worries.

So this is the woman whom I greeted on Saturday. Let me tell you, she looked like shit. Old. Wrinkled. Pushing a wheelchair with her dried laundry and oxygen tank. Her pulse-ox (O2 level) was 77, aka “Totally Fucked!” even on 100% oxygen. She looked miffed to find my surpise arrival, although I did call my other aunt before stopping by, with puppy in tow as well. I could see my grandmother in her and my eldest aunt. Her colour pale, her lips pursed…I took a deep breath. I told her that I was sad to hear the news about the cancer. Her reply? “You play, you pay.”

I cannot seem to get those words out of my head. “You play, you pay.” She was “playing” all these years of being a heavy smoker? I do not doubt that occasions of mirth existed where she lit up, but I would not be out of line to say that she mostly lit up out of anger, frustration, loneliness, being pissed, bored and full of addictive habit. I remember all of the Christmases where she would storm out angry at some infraction by one of us. There were family gatherings she never came to, and momentous occasions she never phoned or wrote or acknowledged. My first memory of her is out on one of those horse farms, and her telling me to not call her “Aunt” because she was nobody’s aunt. Where was the “play” in her distance, both physical and emotional all these years?

I hope I can take her by the hand and say to her how I feel about this bullshit statement. She is just so damn angry about the cancer and her impending death, but then again, she has always been angry. My work teaches me again and again how most of us die as we lived. Death and life mirror one another. In other words, once a pain in the ass, always a pain in the ass. I want her to know how I continue to think of her not as simply my mother’s sister, but that she is my aunt. I take with me in my heart her quick wit, love of games, staunch loyalty, and fierce independence. I want to tell her that I do not care that she smoked, no one “deserves” to die with their very breath being choked out of them. I want to tell her I understand that all those years of smoking got her through and helped her survive. I want to tell her I believe it totally sucks that the one thing that helped her survive this world, which can be so rotten some times, will kill her in the end. I want her to know how we all have survival methods that kill us in some way or another. As Katherine Hepburn said, “Life is hard, afterall it kills you.” I want to buy her the best damn cigarettes and let her light up as much as she wants until she cannot any longer. What will it hurt now?

Mostly, I dream of her forgiving herself and her family for just being human beings. I want my Mother and her other sisters to forgive her for smoking and offer her compassion. Maybe then we can really say, “I love you,” and she can breathe it deeply into her soul and be comforted.

This time last year I tried to be friends with Plant Geek, took my psychological testing to be Ordained (fooled them!), and had two weeks left to finish my Ordination Papers, plus working full-time as a personal assistant to Realtors and regular life shit. I lived with the Parental Elements in Hell, aka Homestead…the bottom of the world as far as I am concerned, my dog had died. Since then I have moved past Plant Geek, fallen profoundly in love with The Bean, gone through the break-up with The Bean, and been on two dates with Woody Woodpecker (god bless his heart). My friendships with Paparazzo, Harlot, Paulina Ballerina, and Darling deepened. I moved three times, if you count that in the last week I moved from North Lauderdale to Margate on Saturday and my belongings moved down from Chicago on Tuesday. The fact that I m.a.d.e. Paparazzo help me with the two local moves, exactly six months apart, proves what an amazing friend I have in him and that nothing short of serving up a wonderful, fun, laid-back, game, smart brown eyed vixen will do as repayment! (Please email me if you fit the bill.)

I also started a new job where my clients die (imagine that), the paperwork is crazy, and the computer system Vintage Microsoft from the days of Bill Gates programming in a garage. I always feel like I am going in the wrong direction, and the bereavement aspect frustrates me on too many levels to mention. Add to this mix that on the job I declare people dead–fortunately they usually have been for at least an hour, which is a big fat “phew!” when going in towards Grandma to check for her vital signs–have been shot at by kids with bee-bee gun (nearly pooped myself with that one), and had to stand firm with a daughter who wanted to have a throw down over the narcotics she was sure her Daddy would want her to have as a parting gift. Thankfully, I love the Team I am on and almost all of my patients and families. Almost!

So, here one year later I am a Real Live Reverend, back in my own home, and trying to survive housebreaking with Emma…a noble task given that she likes to sit and lie down on the grass, but not much else. I painted some of the walls here and cried like a baby thinking of The Bean talking to me before about how he could not wait til I got back into my own home because he would help me paint it to match my soul. I cried too the night I brought Emma home because she is so beautiful and amazing and fills my broken heart with so much love the cracks do not seem so big anymore.

I look back over this last beautiful year so full of change, love, hope, loss, fear, friendship, challenge, heartbreak and opportunity and think, “This is a real life you have here Jacqueline.” Don’t we all. I love the title from one of Maya Angelou’s books: Wouldn’t Take Nothing For My Journey Now. I feel this way about this last year. I would not trade one single precious moment if it meant missing out on the heart break, even if I could go back to this time last year.

The following is a true story told to me by a live-in health-care aide at one of my patient’s homes. “Mary” worked in a large nursing home before starting to work privately, which is the setting for this story. I regret I cannot write in such a way that you could hear the melodic Haitian lilt to her voice. You will just have to use your imagination.

Let me tell it to you as she told it to me:

“Once when I worked in the home, every day they give to me 10-13 patients to clean, help use the bathroom or bedpan, bathe, feed…all the help they needed for daily living. One woman on my floor had THE worst reputation! She had no legs and only one arm left cause the diabetes get to her so very bad. I hurt to look at her, but she was not nice. She was mean. I tell you, she was mean.  Always yelling and cursing at everybody.  People would saw terrible things behind her back about what a horrible person she was.

One day another aide went to bathe her, and she had the most terrible bed sores you ever saw. She messed herself, so the aide had to clean her. Given how ugly she was, always yelling and talking down to people there to care for her, the aide was not gentle when she bathed her. She used a washcloth and scrubbed her clean until her backside was not just raw, but also bleeding. I guess she thought she would teach her a lesson

The next day, they give her to me. I go to her and ask her if she was ready for me to clean her up. I could smell that she had messed herself again. She told me, “Get out of here! Leave me alone! Go away!”

I say to her, “But you are dirty; you need to be clean. Won’t you feel better when I clean you?”

She tells me to go to hell and to leave her alone.

A little while later I go again. “Don’t you want me to clean you? I will make it so you smell nice and feel good.”

She starts yelling at me, “Why don’t you just leave me here and let me die? Go away. I do not want you or anyone else to come near me or to touch me. Get it?!!”

I say to her, “But you will feel better. Please let me clean you.”

She only glared at me, so I left her again. I tend to my other patients and when they are all done, I go back again. Three times Chaplain! Three times I go to that woman, but I just cannot go home knowing that she is lying there in her filth.

I go in again and say, “Please let me help you.”

She looked like she would explode and tells me that she will call my supervisor if I do not leave her alone. She will have me fired!  I tell her to call. I just do not want to leave her like that all the time. I am a good person and just can’t go home and leave her in her own mess.

Somehow she softens a bit and tells me that she was rubbed too hard by the girl the day before and that her backside is raw and bleeding. This is why she does not want anyone to rub her or touch her or bathe her. She would rather sit in her filth and die than have that much pain again.

I say to her, “I will be gentle. I will not use the wash clothes but the wipes. I will get you clean and put lotion on your sores to heal them.”

She say to me, “You promise that you will not hurt me.”  She was almost crying at this point.  So, I promised her that I would be very careful.

So I wash her very gently. I clean all of the mess away. She never cried out, not even once. I rubbed the lotion to help soothe her skin. She smelled so good when I was done with her!

She then says to me, “Only you…I only want you to give me my bath from now on. I will tell them what a good job you did. You were so kind and gentle. It never even hurt.”

The Christian Scriptures teach us that when we care for the least among us, it is as if we were doing it to Jesus or the Holy One.

This is dedicated to my aides: C, P, E, M, F, & L.