A Long Time Coming

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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.

Size of God

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There are times when we feel as if we are simply living from day to day, driven by the wind of fate. Or worse, we feel as if our lives are controlled by evil people. Although we are able to sing about about an omnipotent God in the worship of our congregations, life is not lived behind stained glass. In our homes or workplaces, our faith is challenged by the circumstances of the mundane. We must ask if our faith and perspective of God is large enough to carry us through the mundane.

The times our faith is tested by the mundane routines of life are when we begin to question if there is any purpose to our lives. If we question the purpose of our lives, we are also questioning the one who gave us life. In Isaiah 40:21-24 asks us the rhetorical question, “Have you not heard of the power of God?” He knows that we have heard of the power and strength of God, but that we were caught up in the difficulties of their activities and must have forgotten that YHWH is still the Sovereign Lord.

The prophet begins to describe this awesome God who seems to be too easily forgotten. He is viewed as enthroned by all people, who are like grasshoppers. This reminds the reader that even their greatest enemy is still under the domain of the Almighty God. Nature is also under God’s divine sovereignty. Rulers are placed in and taken out of positions not by their sole ability or fate, but by God. The issue at stake here is to determine what issue causing anxiety is larger than God? We should view God’s lordship in comparison to the triviality of our “giants” of anxiety. We must not proclaim God as Lord in praise on Sunday only to let to let that proclamation pale in light of adversity on Tuesday. God is the Lord on Tuesday as well as Sunday.

In verse 25, the voice of the Lord is heard asking, “Who is comparable or equal to me?” God is a jealous God who desires all the worship of followers and is not willing to share any of that worship with any object or idea. The prophet joins in to argue that, in observing creation one sees the power and strength of God. In fact, the prophet is urging us to look in a different direction to view God in a different light.

Apparently the problem rests with the words and the complaints of the people who feel that God has abandoned them (v27). But again they are reminded that the Lord does not grow weary or tired, and is in actuality the giver of strength and power. Those who learn to trust in the Almighty God will find their strength renewed. During the mundane, when our language betrays our faith, we should take another look at the sovereign God and replace our faltering hope. The natural result will be a refreshing and renewing of our strength of the day.