Each of us has trials and tribulations. I lived with a woman for three years who had a case of spina bifida manifesta, which left her paralyzed from the waist down , and she occasionally lost control of bowel and bladder function. She was still a relatively young woman, and I, an ablebodied person with two legs, saw how hard it was for a chaired person just to go through the journey of a normal day. When you can walk well, you don’t realize how hard something as simple as a parking lot strewn with rocks can be…and as an ablebodied person, you have to learn the tricks like taking a person in a chair down stairs essentially walking backward…and learn the best way to hoist an older wheelchair like an EJ, into a trunk or put it behind the seats. I never once saw her give up. She tried to remain cheerful, but I did see her cry once when she was watching a girl and boy, holding hands, walking down a sidewalk. I drew immense strength just from knowing her and being beside her for three years. I remember once the wheel of her chair snapped off and she had to call me to the house to help. She worked full time, and she tried to get as much fun out of life as possible. She smiled when I knew she felt like crying. Her bravery, courage, strength of spirit in the face of adversity, was amazing. She had hand controls on her car to drive herself to work, and one time, on the freeway, her hand controls came loose, but she managed to get on the shoulder. One of her friends driving by, saw her broke down, and came to get me. I had to repair her controls and also, learned how to drive using hand controls only…not easy on a major city freeway during rush hour. So, in spite of it all, she kept up her spirits, though, I knew that the smile outside, often hid the crying inside. As a little girl, she was on arm braces, but discovered she couldn’t carry books or do a lot with her upper extremities, and so she opted to use a wheelchair, and as she got older, her legs became so weak, she would have to use her hands to move one of her legs, so there was no “going back” to the braces/ crutches.
She never talked about suicide…even when her younger brother, who had a worse case of spina bifida manifesta, died.
I talk about her because each of us has our own burdens. I have been honored that so many here on Twitter have had as much confidence in me to tell me their personal problems, trials, and challenges.
So, I know both first, and secondhand, that many people are carrying immense physical, emotional, and psychological burdens, and that they sometimes, come close to…giving up, for wont of a better word. I’ve talked to people who were suicidal, and none that I got the chance to talk with, as far as I know, ended their lives by their own hands.
This morning, I opened the urn with my Mother’s ashes. It is a double urn, one that already contained my stepfather’s ashes. The crematorium that did HIS, made a nice, elegant looking certificate with his name on it that they place inside. This place just put a silvery tag, with a number, nothing to give Mom’s ashes identity (but the gentleman last night showed me a tracking sheet where all cremains have an ID number so they can match it up). We had asked them to seal the urn,and were assured they would, but they hadn’t. It was getting late, they had a funeral going on at the time we were there, and I just wanted to get my Mom’s ashes home. So today, I am going to create a nice, parchment paper certificate for Mom’s ashes before I seal the lid of the urn.
As many of you know, this has been a long nightmare for me and my wife. We’ve had to fight too many doctors and administrators to mention. I’ve been insulted, was initially threatened with having my “ribs broken” by the ER doctor because I insisted my 89 year old Mother be on full code status. I’ve been before two “Ethics Committee” ambushes with 15-20 doctors (and one “priest / lawyer” in Chicago in telephonic attendance), and I never wavered. One of my friends, near the end, suggested I meditate and get in touch with Mom. It’s been a long time since I did formal meditation, and it was hard to clear my mind given the totality of what has been going on…Mom’s health being only a part, albeit, the most important part to me.
But, finally, I was able to clear my mind…and the words I got in my mind from Mom was “I’m tired”. I didn’t want to think that. After all, the doctors had kept her sedated a lot, so it was hard to know exactly to what extent she was uncomfortable, but I realized later, she had stage 4 decubitus ulcers, had all the hoses keeping her mouth open, and it was then I realized this was not living, not even surviving, it was torture, and I could allow it no longer. My whole life, I’ve feared the date the 23rd, because something told me that one of my loved ones would die on that date. So, ever since I was a very small child, every 23rd of the month, I would get extremely apprehensive and anxious. On the 23rd, Mom’s urine output in the bag, had stopped…and finally, I knew I had no choice.
All through this, I had people trying to force me to do what they wanted me to do, but my charge, as her only son, as her legal guardian, was to try to keep her alive in case there was a last minute miracle…but those two words in my mind let me know, the door was closing. So, late on the 23rd of September, I finally agreed and checked the box, to let her “die a natural death”. I’ve signed many documents in life, taken lots of tests and passed them, but that document…that one box, was literally the hardest check mark I’ve ever made. And, in just a few hours, on the 24th, Mom died.
If I had done it on the 23rd, that lifelong fear that it was predetermined someone very close to me would die on the 23rd, would have come true, and again, that decision would have been taken from me and Mom.
This morning, I opened her urn, saw a plastic bag with a shiny, small, metal tag with a number on it, and immediately flashed on all the Christmases, all the Thanksgivings, all the birthdays, all the scraped knees, all the things Mom had done for me in 62 years. I can’t tell you how many times when people would ask her something, she would say “It’s whatever my son thinks is right”.
Each of us has a breaking point. Some find it early in life, some find it late in life. Each of us finds a time when we feel like giving up. Perhaps the one thing that my friends and associates in real life would tell you about me is “He never gives up”. But, I would lie to you if I told you I didn’t feel like it today. But, I’m not giving up. My heart is battered, bruised, and broken, but there must be an accounting for what was done to my Mother at the first hospital. She came in with a simple case of pneumonia, no decubitus ulcers, in fact, was feeding herself, responding to questions, knew my wife and others, initiating conversations, even walking with double assist. But, since I hold giving you truth as important, that first hospital all but killed her. The second hospital did their best, but she had four stage four ulcers they had allowed to happen, did nothing to prevent. She was so thin, there was no skin to place over the places they would have to debride, so they would not debride these four stage four ulcers. The official reason for death on the death certificate we got last night was “sepsis”.
In essence, that first hospital took the human who meant more to me than my own life, a beautiful 89 year old woman, and turned her into a bag of ashes.
I’ve talked to many other people who have lost loved ones lately, or are in the process of losing them. If I could, I would personally hug each and every one of you, as well as hug each person on Twitter that has supported and loved us, and been with us through this journey / fight.
So, I’m not giving up. I won’t go away. I won’t give the “doctors” and “hospital” the satisfaction that they won. I will do everything legally I can to create problems for them. And, I will, as long as I can continue, be here for you as well…to listen if that’s what you need, to sympathize, to try to support you through your trials and tribulations.
Because, this is what family is about. My role model in this was my Mother. She never, ever abandoned me, never failed to give me everything she had. She was MY example of what a good person is, what a good person does. So, if I have helped any of you, please understand that was only the reflection of my Mom in me that was helping.
I am nothing really. I’m a loudmouthed Viking Anon Pyrate, but, I have Brothers and Sisters in Anonymous, in Occupy, and those unaffiliated with either group, but whom I call “Brother” or “Sister”, because, we ARE family. Maybe not closely related, but we are in the Family of Humankind.
So, that’s my thoughts for this Saturday. I’m tired, and stressed, but I fight on.
#MuchLuv to You All, from my Heart…