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Photo of Patrick Leo Jones taken 14 Nov 2010 by Martha Bryson
When I posted this photo to my FaceBook page in November 2010, I couldn't know it'd be the last day my Patrick would be pain-free. And, I couldn't know that the next 14-days would be my undoing mentally, as I watched him suffer night and day, despite the Morphine drip then, Dilaudid. He lost the use of one arm then the other, and his ability to speak or open his eyes. He took his last pained breath at 10:31 P.M. on 28 November.
He hadn't wanted to die in a hospital, but at home, and I THOUGHT I was strong enough to give him that, but I was to find out later I wasn't. Being right there with him as he was dying changed me profoundly forever, in ways I still struggle to find the words to describe. There is still so much more to the story of his dying than I was able to convey in the three posts to this blog in November, 2010 (see links in right side column.)
I feel compelled to write more because now I think I've stitched up my broken heart enough to get back to the task. The story of his dying is a tragedy from which I feel strongly Life-lessons can be gleaned that could benefit others.
The biggest tragedy is that he didn't have to die at all. If he'd had health insurance. In Texas Medicaid is denied to poor people, and he was a low-wage earner in a job with no benefits. If the "charitable" Catholic hospital, Seton, had scoped his throat sooner, before the cancer had bored a hole in his esophagus and planted a fist-sized tumor in his chest that was crushing his windpipe against the back of his sternum. He'd been to the same ER nine times in the previous 18-months with the same symptoms: pain in his chest while swallowing food or even water!
There are so many "ifs" that are connected to his death about which I still feel so much anger. Activities of my daily life now allow me to put my rage on a shelf in the closet of my mind. Most days. And then, there are days when I'm blind-sided and some event, something normally insignificant occurs that transforms me into someone wholly unfamiliar. No matter how many times it happens, I'm always taken by surprise because there are no warnings beforehand.
An "episode" can last a few hours or days. I struggle with the smallest of daily tasks, I ramble and over-explain things and forget familiar tasks. I feel as if I'm imprisoned in a strange dimension some call Post Traumatic Stress Disorder (PTSD.) I'm never privy to how long an episode will last, and I usually can't explain to those around me what is happening and why I am behaving strangely. Mostly, I become highly annoying to those around me.
I'm aware that strangers think I'm weird even on my "good" days, so how friends and family perceive me is a source of great consternation when I'm having a bad day. And here's the thing, Patrick's dying and the affect on me spotlights how PTSD changes a person and everything in their world.
Maybe my personal trauma triggered by the injustices of Patrick's death is an opportunity to have an inside look at a mental illness, PTSD, which is becoming more and more common, but that most people do not understand at all. I feel all the shame that comes with living with mental illness, which is a subject still very much considered taboo, even within families.
What I really believe is that it doesn't matter what the source of the PTSD is, because military combat, street violence, personal tragedy and all other triggers produce the same destruction to the human psyche, just with different details and degrees of suffering. There is just so many compelling reasons to share his story, and mine.
Patrick was a good man and many people agree. I am certainly a better person for having known him He was always the helper dude, taking young ones under his wing and expecting them to learn respect, teaching them by example, stressing the value of good deeds and building strong character. He was always special in various rather curious ways.
I am told at age four, his four older sisters would sit him up on a clothes dresser, a perch from where he would mete out somber, yet hilarious advice while they fixed their hair and put on make-up to go out in the frenzied state in which all teenagers operate. He earned the nickname, "The Professor," because his demeanor warranted it, and they would give him the eye when he would spout some adult truism with his very serious tone of voice, which he mimicked from their parents.
He was the youngest of seven children and grew to be the man all looked to for guidance and support. He was humble in the way all good men are. A man short in stature with the sturdy gait of a born leader with followers. He never aspired to be a leader and insisted on walking and sitting alongside others, never positioned in front. He had a presence he never flaunted. I receive many calls after he died from folks I never met who hadn't seen him in decades, that wanted to tell me all the ways he changed their lives, or that of their family, and would always be remembered. He was a giant of a man in so many ways because he touched people.
The grief all who knew him have isn't something one "gets over" but something one learns to live with. And, he made it easy to remember his infectious laugh and guiding voice, which helps ease our grief. No one can forget how much he loved to dance, and that music was a part of his very being. He knew every word of every song written or co-written by Stevie Wonder (over 200 songs!) At the end of his life he asked me to write about his life so his 27 nieces and nephews (he included the ones he knew in my family in that number!) could know him better after he'd gone. I argued with him I was not a good enough writer to do that, but he insisted I was.
So, one kind of needs to know about this extraordinary man to understand why his death left the impact that it did on me, and so many others: friends, family, and strangers alike.
Today, I began writing again after several dry years while getting my life in some kind of manageable order. It was painful to see this picture again, six years after I took it, and I shed some good buckets of tears. But now, all I care to think about is the comforting sound of his deep voice, remembering his beautiful smile and wonderful laugh, and I feel grateful for his love and devotion to me the short ten years I'd known him.
There'll be another day to write about his death, and the resulting tsunami of pain and anguish that altered the universe for me and countless others.
