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Tuesday, March 22

On Choice, Loss, Grief and Dying - Part 1

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This is a series of stories that is part of my own healing. I welcome you to read along, or not, but I'm going to write it anyway. I hope you take something good from it, and I hope I do too.

If you have thoughts of suicide, please call 1 (800) 273-8255 to reach the National Suicide Crisis Hotline, or call 911. Please know, admitting help is not a failure. Life can be beautiful, you just have to live it first.
Certainly one of the more difficult parts of having been diagnosed with mental illness is feeling like I can no longer be trusted to make decisions for myself.

I find myself this afternoon thinking of my Mama.

I read Atul Gawande’s Being Mortal while on vacation in the Philippines. In it, he ponders the many studies done on the health and well-being of the elderly, aging and terminally ill. He proposes a philosophical approach to aging and end-of-life care. One of the biggest themes in the book is the power of choice. Through studies, stories and his own experience as a doctor, he finds that emotional well-being of aging and terminally ill patients was tied directly to their ability to make their own choices - their feeling of independence and control over their own life.

It truly is a wonderful book and should be read by any and everyone. I can’t recommend it enough.

At first, the book resonated with me as someone who had lost loved ones to terminal illness. Later it would resonate with me as someone who contemplated my own death.

My aunt was like a second mother to me. In fact, my sister and I never called her Aunt - we called her Mama. My mother tells me a story about how when I was born, my aunt asked my mother if she could adopt me. Whether this story was in jest, or whether it was real, I had heard it enough times in my life that I figured there had to be some truth to it.

My aunt never had children of her own. The cause was never diagnosed as infertility treatment was a fairly new medical endeavor and not around - at least, not popular - in the early 70s and 80s. Anyway, she and her husband divorced not long after I was born.

Rather than having my aunt adopt me, my mother happily shared my sister and I with her. We called her Mama and spent summers at her home in Chicago, with a few snowy winters here and there, too. She would buy us toys and sugary cereal, and when we were budding pre-teens, would let us watch music videos all day.

My aunt was diagnosed with uterine cancer shortly after I graduated high school. She was still living in Chicago and was undergoing treatment which included chemotherapy and a hysterectomy. I visited her in Chicago shortly after her treatment was done. She had lost her hair and was wearing wigs, but she was in good spirits - as she always tended to be - and was dating a new man.

She spent many nights out, continued working and traveled quite a bit after her treatment was finished. She had always been social and had a love for travel. She worked as a Nurse in management at an elderly care facility. My mother said her co-workers always knew that when she was marching down the halls towards their offices, she was going to stir up trouble.

She always had a way to get the things she wanted and needed for her patients. She was resilient, persistent, driven.

She traveled to Florida to visit us the Summer after her chemo was done. I drove down from Tallahassee, where I was living for college, to see her. It only strikes me now how heartbroken I am that I don’t really remember much of that summer or the days we spent together. I don’t know what we did. I don’t know what she said. I just remember seeing her. I’m sure my mind was somewhere else. I regret that now, even in the knowledge that I cannot change it.

Two semesters would go by before news came that she was in the hospital again. This time, the news was not good.

It turned out that the cancer had spread. It either went away and came back or never went away in the first place. The answer is not so clear. You see, during those months (or was it a year?) after my aunt completed her cancer treatment, she led all of us to believe she was in remission. I don’t know - or at least I can’t quite say - whether or not she outright lied, whether or not someone asked her “Are you cancer-free now?” and whether or not she said yes. Or maybe they just asked, we just asked, “How are you? Are you okay?” and she simply said, “Yes.” In that sense, I don’t know and can’t quite say that that was a lie.

Along with being resilient, persistent and driven, my aunt was fiercely independent. After her divorce, she never remarried. She was never interested in remarrying. She worked and lived independently, quite happy to do so, and traveled the world without trepidation.

In her cancer treatment, she chose to take the well-traveled path of independence and resilience. She mustered through chemotherapy and a hysterectomy with outward bravery and humor. In fact, she showed us her different styles of wigs - happy to try a new look after all these years.

At some point, the cancer either came back or remained - we’re not sure which. What was certain was that it had spread to her liver. In secret, and without the knowledge of her brothers and sisters, or me, she chose not to continue treatment.

She was heavily medicated with painkillers and bedridden by the time my mother got to Chicago after hearing she was sick, again. It was only then that my aunt allowed the doctors to share with her siblings that her cancer was not gone and that now, it was terminal.

My mother flew back to Florida, so that she, my sister and I could travel together to Chicago.

I was in Tallahassee studying for a Marketing final. I told myself I couldn’t leave because, well, finals were important - life and death for a 20 year old. My mother comforted me, telling me I shouldn’t worry; to focus on school, finish up my finals and drive home. We could then fly to Chicago together to see my aunt.

I even scheduled an interview for an internship in Chicago. I planned to spend my summer there, at my aunt’s house, while interning. I told the HR department that I would be there in a few weeks, and could interview in person.

I was fully entrenched in my own life, 100 things on my mind, and just trying to function.

The summer my aunt came to visit us after her chemotherapy was done remains a blur to me. One particular day, a late afternoon some time in April, is too vivid. I think of it reluctantly, though it persists in my mind whenever I think of my Mama.

I left my Marketing class - having confidently aced the final, and walked to my car less than a few yards away, parked by the campus Starbucks. I called my mom and said I was on my way home. We would leave for Chicago the next day or the day after, to visit my aunt in the hospital.

She told me to drive safe - be careful, and see you soon.

The drive from Tallahassee to my house is about five hours, if you go the speed limit. Four if you go 95 mph, like I routinely did.

Somewhere after exiting the turnpike, 4 or 5 hours after leaving my final, my mother called my phone.

I answered.

She said, “She’s gone.”

We were still on the phone when I rolled up to my house. My mother was standing in the front yard watering the grass. I parked, got out, walked up to her, hugged her, and we cried.

The next time I would see my aunt, she would be in a casket.

I didn’t cry at her funeral. I couldn’t. I just stood there. I didn’t believe that was really her. The color was drained from her cheeks. The light in her eyes hid behind closed lids.

I wrote the following things after her death. I will share them here now, as they are still relevant.



Loss
April 28, 2008

Death is a funny thing.
I have already grown accustomed to these motions.

First, the jarring, numbing shock.
Not so much disbelief as it is the inability to wrap your mind around how fast something so complex as life can simply cease to exist.

Then, reality strikes; cold and ruthless.

Then comes something you cannot begin to call acceptance because the word cannot begin to describe a grief so palpable, it falls to the pit of your stomach.

R.I.P.

I do not know how many more times I can feel this way.



Thoughts as they come
May 4, 2008

I suppose that I am selfish in my grief, convinced that another could not have loved - there it is, past tense - her the way I did. I am pouring over old pictures hoping to catch a glimpse of her face, hoping to remember the sound of her laugh or the feel of her skin when it was warm, pulsing, supple & alive.

I keep searching for something I might have missed about her hidden in these photos.

There are moments, surely, that I want to fall to the floor in a fit of weeping but I do not. I have not yet given in to this urge to mourn and only mourn. I'm not entirely sure why.

Somehow I don't want to. Somehow when the grieving ends, all of this will too and I will have to say a different kind of goodbye; one I won't say, if only for the unbearable finality of it.

[+]

As I watched you, I could not help but think that life cannot end here. In a box, in a room, surrounded by people whose names you have likely forgotten & faces whose familiarity you can no longer place. Life cannot end this way.

& all I could do was stand & stare at you & take pieces of lint from your shirt or hair. I could not touch you. I did not want to. I'm sorry.

I did not want to know what this felt like, this form in a box that looks like you.

That wasn't you.
Just some empty shell of what you were.
She looks like you but you are somewhere else.

A place I cannot get to,
one I cannot find.



Counting
June 21, 2008

i found myself counting the days but from what i am not sure.
somehow, i am here - is it forty-seven, 47 days? or am i mistaken. -
either way, here i am counting.

beginnings are blurring with endings, though i am not even sure either has occurred.

i am only sure that i am in the midst of grief;
neither met with its arrival
nor relieved (or otherwise)
by its retreat.

just being.
just grieving.

because this has not happened yet.

yet.

yet, i am in this place
here:
where grieving exists in response to events that i have refused to confront
in hopes that refusal might entice the earth to move backwards
might coerce the clocks
to rewind in sympathy for my losses.

but it does not.

instead the second hand continues to tic.
tic, tic, tic.
& the days keep moving.
sunrise, sunset.

taunting, meticulously executed reminders
that everything is moving, but me.
& that i can do nothing

but count.



My mother tells me that before she left my aunt's bedside, while my aunt was in a deep, medicated sleep, floating somewhere between the here and there, she said to her, “I know you are waiting to see Joanna and Kristine. I know you are in pain. It's okay to let go. They will understand.”

My mom left to meet us in Florida so we could fly together. My Mama passed peacefully into the eternal night while I was somewhere on a highway, racing to see her. I regret so many of my own choices in the years and months leading up to her death. But I find comfort in knowing she made a choice, too. In life, in health, in sickness, in death. The choices were always hers. There is no greater way to live than that.

I miss you Mama. Our love still remains. In that way, you live on forever, in the stars, in my dreams, in my heart. I love you.



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