A Long Time Coming

6 Comments

I have started to type this blog several times over the past few months.  I have started it and erased it several time.  I always have trepidations about writing a blog.  I like to write freestyle and my grammar and punctuation suffer for it.  It is also intimidating and all such a wonderful blogger such as Casey Coombs with from babble.com.  She always writes such a wonderful literature that is disguising itself as a blog post. For similar reasons, Lotus Carroll makesme nervous posting photographs. Her works is transcendent and moving where mine shows a cat or cloud.  To be honest, Casey is the reason I am finally writing this post.

It all started as a simple demand after I posted about my sister on the anniversary of her death back in February – “Thank you. Tell me about the little girl, she’s lovely.” Which was immediately followed by “If you want, sorry. That was pushy.” So what follows is the post I began typing after our conversation.

 

I asked, well told, to share something today. It was something that I shove to the back of my mind on a regular basis. It is something that truly forms the basis of the person that I am today. For better or worse, my faith, my desire to live and my conscious are tied up in a single event and all that followed in the year after it.

I have seen grief in my life – in myself and in others. I have a maternal grandmother that I never met due to cancer. A grandfather I do not remember. An aunt and a grandmother who were there when that grandfather died of a heart attack and weren’t allowed to go to his body in the field fire he was tending. That same aunt lost a life partner to throat cancer. An aunt who miscarried in her own home bathroom when she wasn’t far enough along to know she was pregnant. Three cousins who lost a mother to kidney disease after she had defeated it years before and gone on to get her GED and teach math to other people seeking theirs.

I have three wonderful friends that have lost their mother to cancer and will be spending Mother’s Day spreading her ashes – the ones not in necklaces around their necks. I have internet friends that only saw their daughter’s face in a 3D ultrasound. Others that never got to see that much. Friends who have went through shots and in vitro fertilization unsuccessfully. I have friends that lost their parents to dementia long before they lost them to death. Not every death is the end of a well-lived life.

I have watched children mourn the death of absentee parents. Seen children wax poetic about the laurels of father’s that were never supportive. We never want to speak ill of the dead. Some people even find praise for Adolf Hitler and Saddam Hussein in the way their dictatorial, murderous ways kept order in their countries. Death and illness, who’s here and who’s not, how we live with this hanging over us. These are the conversations we never want to have. One of the many ways I’ve been a smug idiot in my life was by disparaging the use of euphemisms for death and dying. I thought it was weak. Who would do that? Now I have been rendered barely able to utter the words “death” or “dying” for several years like the thing itself was powerless if I didn’t invoke it. But it wields power whether spoken or not.

By not speaking of my sister’s death, I have not removed the sting of it. By not telling the tale of her final journey I have done a disservice to her wonderful spirit and being. Casey’s simple demand was a much needed prompt.

My sister. Was your basic ginger. Feisty, fun and full of energy. She was dad’s shadow. Our pastor noted that she was just laying down and not running one day. Offhand he said she must not feel good. A week later, after an incident where he vomited all over the floor at school, she went to the pediatrician. He told mom and dad to take her straight to Kosair’s Children’s Hospital in Louisville: a room will be waiting. No hoops, paperwork or anything. They were expected. Her biggest concern was that the principal and teacher would be upset that she threw up.

She had leukemia. “The good kind” if you were going to have it the doctors said. She was outfitted with a port and was fed through it and took her medicine through it. They were able to draw blood through it to keep from sticking her. The local hospital couldn’t use it. So she got stuck here to do blood counts. Finally one of the lab techs from here took his own time to go and learn how to use the port. Angela had that effect on people.

Her muscles atrophied and she went blind in her right eye. The other eye wouldn’t’ open. There was a teacher at the hospital that came with homework for her. When her eyes were so bad and she was drawn up, he came to visit one day and was about to leave. Angela said “aren’t we going to do math today” He said I didn’t bring anything i didn’t think you would be able to do it. She had a dry erase board to write on. He wrote problems and she would raise her eyelid with her withered hand and do them.

Wish upon a Star sent us to Disney. I was technically too old to go so she told them she didn’t want to go if we all didn’t go. They made a way for me to go. We were granted access to all the corporate lounge areas, sent to the front of all the lines and treated like royalty. Regardless of what people might say about my friend Casey’s favorite place in the world. They know how to make terminal children feel like the special people they are.

There are so many stages to a long decline, dips and resurgences and good days. And you know, you know it’s all the same thing. It’s all dying. Dad and Angela had a running joke about looking for “ralph” after her chemo treatments. She had several spinal taps. One day when she was under the covers presumably asleep, the doctor came in and told mom she needed to have another but he wanted to wait to tell my sister and not freak her out. She threw the covers back and said you are already blowing my mind.

Mom said one day she complained of a headache and my sister said some days you hurt like hell and you just deal with it. This was a 9 year old. Mom and dad are the type of people that have never cussed. If mom told us to pick the crap up in our rooms we were afraid she had gone postal.

“Grief is one thing. But watching somebody die is a whole other thing. You know, not everybody can sit beside a dying person and hold their hand. I think sometimes it’s too much. Nobody wants their loved ones to be alone. I get that. But you could wait here for days and days, and when you go to take that one shower is when the person might die.” – Pattie Burnham, inpatient hospice RN on This American Life episode 523: Death and Taxes. But there’s a huge difference between dying and the very last part of dying, what Pattie and the other nurses call actively dying, a process that can take hours or even days. But it’s different from what comes before. And being familiar with one doesn’t mean you’ll recognize the other.

A friend of my mother’s came to my work and told me we needed to go to Louisville. I was going to tell the manager, a man named Roger Davis, and he met me and said, “Go. It is taken care of.”

We went to the hospital and my sister was breathing laboriously. After a few hours, her breathing calmed and I went to the Ronald McDonald House to sleep. (Again, I can’t say much good about the health quality of their food, but God bless the people who clog their arteries and allow Ronald to give a place to families of ill children). Four or five in the morning, the phone rang my mom’s friend said get ready that she would be right there to get us.

When we arrived my sister was breathing in raspy fits. “There’s a huge difference between dying and the very last part of dying, what Pattie and the other nurses call actively dying, a process that can take hours or even days. But it’s different from what comes before. And being familiar with one doesn’t mean you’ll recognize the other.” (American Life). As the bedside monitor’s beeps slowed, the nurse unplugged it. There was no need for it at this point. No need for mom and dad to hear its long drone announcing that her heart was beating no more.

My faith told me that I could grab God by the collar and tell him what he was going to do. So I held my sister with a prayer on my lips and continued to hold her as she turned cold and my faith left me as her soul left her mortal shell. I am perhaps like Bill Nye: and agnostic. Simply for lack of being 100 percent able to disprove the existence of God. I hold on to a thread of faith through science and its patterns and order. Every circle has a circumference that is 3.14159265358979323846 times its diameter. And its area is 3.14159265358979323846 times its radius squared. The earth fits in its orbit never popping out of the sun’s gravity well to float into space or crash into the sun. So please forgive me if I tell you that I am sending a hug and positive thoughts and energy instead of a hug and a prayer.

 

 

Angela Gayle Williamson passed about a year to the day after the diagnosis. The nursing staff from the oncology floor at Kosair’s came to the funeral. They had become friends with mom and dad, talking baseball cards with dad and watching mom’s progress on her needlepoint portraits. My brother’s ROTC class came from High School. Hell my brother was a junior and I had already graduated and the whole junior class was there along with principals and teachers. We had a standing room only funeral for a nine year old in a church that holds 250 in seats. She went to school as long as shge was able. Her classmates saw her bald and emaciated. When I go somewhere that I have to give my name, people still say I was in school with your sister. I remember her.

My sister put herself through college as a single working teen mom and is an Oncology nurse. She works geriatrics.. She said peds was too close to home. My cousin is a pediatrician: she was nine when my sister died. That cousin’s oldest sister’s first girl is named Angela. A month does not pass that I do not have a conversation with someone that knew my sister or went to school with her. Without fail they say I remember her and how that experience affected me.

I know others have similar tales to tell of their loved ones. I have spoken at and presided over the funerals of people that have made impressions on me and inspired me. But I can honestly say that laying on a hospital bed in Louisville, KY feeling my sister turn cold in my arms has had the greatest effect on me. An effect no amount of tequila, survivor’s groups or therapy has diminished.

I am 45. Single. No children. No chance that I have any that I don’t know of. My biography line on social media will always read that way. I have met people that have moved me. A young waitress at Chi-Chi’s before my sister’s death, a young lady I said hi to in a Burger King by chance and a fellow photographer that has heard more of the above than any other human and has heard and endured me through so much ignorance and angry lashing out on my part. She in many ways has saved my life.

My niece has also saved my life. Literally in ways. She took walks and pictures with me. Our first trip back to Disney was with her. She gave my dad a replacement for his shadow. And although she is blonde, she is every bit the angry redhead (said respectfully) that my sister was.

My friend Casey probably wishes that she had told me to share with her. Like I said to her though. Not pushy at all. Thanks for asking. Been a very cathartic experience and may have inspired a blog post… even if it was three months later.

And as I told her. I needed a good cry.

Advertisements

Forrest’s Mom

3 Comments

When My sister passed away of leukemia at the age of 9, I was under the impression that losing someone older would be easier. There would be the comfort that they had lived a full life. But with my grandmother given 3 months to live, I am finding that I was wrong. Cancer sucks regardless of the age o the victim. Any death that is bought about prematurely is a great loss. I think of the self-inflicted cancers: throat, lung and gum. Brought on by smoking and chewing tobacco products. Now I am aware that asbestos and other elements unknown to the victim also cause these cancers, but smoking still remains the number one preventable cause of death in America. Or perhaps it is obesity. Either way, it is something that we do to ourselves. But some cancers aren’t so predictable.

Persons can eat healthy and exercise and still become sick. Whether it is a toxin or a genetic cause, there is some outside factor. There is something beyond us that causes our own body to turn against itself and begin unregulated cell growth. In a rather simplistic definition. The cells divide, grow wildly and invade nearby parts of the body. It is a reminder to us of our smallness in the face of disease. We have made progress  against polio, malaria and even AIDS, but cancer continues to stymie us. We have learned correlations and causalities but still we for the most part we simply treat symptoms and ease pain in too many instances. There are some places that we made progress. Remission rates are high for some cancers. We have tamed some cancers to treatable, minor events in people’s lives. But for the most part, it is winning. Advancing and continuing to taunt us.

That’s why I think Forrest’s mom wasn’t completely honest. Life is really like a box of chocolates, half of it isn’t worth experiencing, But it is that nugget of chocolate covered cashew that makes digging through the slimy-centered lumps. Over the next few months, I will hope to share a few of those cashews clusters about my grandmother.