Perhaps because I have never experienced the death of a loved one up until recently I am delving into deep corridors. I’ve been reviewing and evaluating the his-story of Jim by hitting rewind on the tape cassette over and over. My conclusions are not popular and may cause some to consider me a little crazy. But, I am determined to empower myself and others so that each of us has a clear mind in crisis situations.
I find myself stuck in the program of things past. Jim and I got stuck inside a monster and then entered another experience of a monster. Yes, Jim and I did speak about his possible passing and he desired to pass at home and as peacefully of possible. I feel that choice was taken from us rudely and unnecessarily. I will die and so will you. Do you want to have any say in what that is going to look like?
I’ve been reviewing Jim’s history intensely with a microscope. I guess that happens when you sort out the “what nows”. I wonder about his hidden hurts and closed self. I remember the good times. I see the hard times through a different mirror. I now realize he did not want anyone to know his suffering. He would rather push another away than have another see his struggles. I also am grateful for the Jim I met when he was near his end. He was tender, gentle, loving. He was open to receiving love and he was open to conversing about deeper queries of life and living. That memory and experience I will hold tenderly for the rest of my life.
I am reviewing Jim’s cancer battle over and over. It is like I can pinpoint the moment it appeared in our world. It is like I am saying “oh, that was what was happening”. I am a very sensitive one and, yes, I knew. But, intuition was not acceptable and definitely not proof for Jim. He knew something was up (or down). But he wrapped it in tough guy clothes. I remember someone telling me he watched Jim welding a roof and hot molten steel dripped onto his arm. Most would cringe in absolute pain. Jim brushed it off and continued. His tolerance and avoidance was rocket fuel gone hard.
I am going to share more about the final hospital experience as this is another side to the story that I think needs consideration for us left here and “us” who might need emergency care. Although Jim had a rare cancer, his death was due to “sepsis” and organ (heart) failure. Re-read that! That was the cause of his passing. Jim and I found ourselves trapped in some ways. We did not have the knowledge to perform the emergency care. For example, when his bladder was blocked, we didn’t know how to insert a catheter. We both learned and learned fast, but the learning process was in a time when “practice towards perfection” was not good….and that caused some harm (adhesions, irritations, bacterial homes).
When we entered the hospital the last time, I actually knew exactly what needed to be done. A flush! As we were consulting with the head ER doctor she disagreed. The doctor in training agreed with me, so I went out into the city night to find the correct size and type of catheter for this procedure. This was on a Saturday and the specialist was not in until Monday morning. With the tools I presented, they did not do the task. We had to wait. This cause Jim great discomfort. He was in pain. His system was backing up. Urine and blood swarming with bacteria was floating into his body . It was causing the dis-ease to multiply. I was powerless. All I could do was keep asking the emergency station for more pain medications to help Jimi. Just help him! I changed his pads, his diapers. I emptied his catheter bag. I massaged him. I brought him clean water. I was apparently “in the way”.
Rewind! Where did we go wrong? It is not so much “wrong” as in we were in total disempowered. We were at the mercy of the system.
How do we prevent this? I have a plan forming! I have an idea that might cause a collective self-empowerment. In our little valley there is a gathering of some pretty cool humans all seeking a way out of the system’s clutches. We have gifts, talents, background and knowledge. Our stories are familiar… we all were studying within the different systems of our world and we opted out..got out…ran away. We all know there is something wrong. So, no we do not have “letters” behind our names, but we have a base knowledge. We need this knowledge at the ground level needs to be shared. We need to gather and share this knowledge. I am not talking about surgery. i am talking about the ER procedures that can save lives. I am talking about getting advice, coming together as a group and helping each other. Sharing our wisdom and assisting each other to make choices that might otherwise be available or realized.
I want to return here a bit and have you consider something about our experience. Jim’s death certificate said “sepsis and organ failure”. It did list bladder cancer too…but in third position and listed, I think, because he did have cancer (and I know it was NOT just in his bladder). During the surgery in January, Jim had two and half tumors removed. The half left is concerning, very concerning. I can see the cells of this tumor floating out..flying free and enjoying the freedom to go anywhere they wanted and could. The medical community doesn’t agree with me. Jimi wasn’t able to recover. His surgery incision wound burst open and they said, just clean it twice a day. I could see his innards. Do you see how fucked up this was?
Sepsis took Jimi. The sepsis caused the organ failure. How did he get Sepsis? Think! Just think about this!
What if….what if we elevated our empowerment with our own care. What if we had neighbors and community to depend upon in crisis situations. What if we could pull on these resource to assist us with making decisions. I can not reverse things and perhaps even with this community safety net, we still might of hospitalized Jim but there is also a chance we could have prevented some of the shitty story. In the end, Jim passed due to hospitalization complications. I am not blaming…I am just giving the facts.
Our world tells us that unless we have the credentials, we can not do things, perform or be active in our own care. The system can be like a monster that takes us…literally. Just like cancer! When we entered the doors of the medical world, we had little options. Fear sets in. Worry sets in. Sure, we researched every IV, drug and performance the “system” did on Jimi, but we were disempowered.
In hindsight, Jimi knew this would happen in the beginning. This is why he resisted the first visit. He knew it would take away some of his soul. Every time we had to go back both of us were “oh shit!”. I am glad though that we were a team, Jim and I. I was always with him I never left him. He was not alone in this dark walk.
The system is NOT god. Yes, it helps people, but so many are caught in the maze of unknowns and worry about health and death and that it actually very dangerous to ourselves.
It is a problem. And, rather than harping on that problem, I have been considering solutions. I want to empower me and others to not get caught in the trap of fear and watch their loved ones pass in pain and anguish. We have the God-given right to choose, yes? I know I have knowledge and gifts that I want to share with others so that they have options, choices and feel good about the course of action they choose.
In fairness, the system has saved many lives. I don’t dismiss that. And, it has failed. I wish they had of listened to me at the hospital that last time we entered. I wish I could have been more effective at convincing them of the course of action required. I wish I was able to do that procedure myself. I realize, now, I could have! Yes, I would have been gulping with fear, but I could have done it. i am not a colleague in their club. Two days later on Monday morning, when the specialist arrive, he did ask for the type and size of catheter I recommended I just pulled it out of my pocket and gave it to him with a sigh of “oh man!?” That was literally when the “head staff” asked to leave the hospital due to COVID restrictions. That, my friends, is sad.
Maybe we could have done it ourselves…and given more time to treat the cancer. Now, that “maybe” is gone. In hindsight, we did have that option..and we also had the option to ask our neighbors to help us make the decision and guide is with their knowledge.
So, my intention now is too gather the neighbors and combine our knowledge into a pool of reflective empowerment. It is called taking care of ourselves. It is not just about the medical, this gathering is to share ALL our knowledge. We have the plumber, the baker, the healers, the lawyers, the gardeners, the electricians. We have the potential for food, water and power. Why not gather and find a way to help each other in a small circle or that none of us needs to get caught in a system that takes us.
For me, now, I am having blips of moments of forgetting….. forgetting he is gone. This relapse has taken me like a wave a few times. It hurts. I can be cooking dinner and realize there is two of everything prepped. I can be turning a corner and expecting Jim to be there. I can hear a vehicle drive by and think “he is home”. When it hits, it hits hard. I question my own momentary sanity.
This will pass.