Many people know about the stages of death and dying, the stages one must go through when they are dying. These stages were identified by Kubler-Ross and include: denial, anger, bargaining, depression, and acceptance. It is my belief that these stages are not limited to people who are dying. They affect anyone who experiences a major life change, especially when some form of loss is present.
Getting a trach was a major life changing event. No one "wants" a trach. It is not something that is done electively. It is done when there are no other options . At the same time, there is nothing that could adequately prepare a person for life with a trach.
My life has become defined as - before the trach, and after the trach. It is definitely something that is difficult to adjust to. Doctors make it seem as if you get a trach and everything is all better. You go back to your life. But that isn't how it works. You go into surgery with one life, and you come out with another, and just as with your previous life, you must relearn everything. The hardest thing though is that you must mourn the loss of your old life. I think if you had more time to adjust to it, it might be better. But they came in one day and said they wanted me to think about having a tracheotomy, then I agreed, and I was set up for surgery the next day. From the first it was mentioned to surgery was 3 days. I didn't have time to think or process. I was told, you need this if you want to live. Okay, and then it was done.
My life now is completely different. I do miss my previous life. I mourn the loss of it. I will never carelessly take a shower, not using certain methods to be sure to not end up drowning myself. I will not be able to swim and have to be exceedingly careful around water. I will always have to be extremely vigilant about trach care, always prepared for it to get clogged or fall out, ect. Yes, I can do many of the things I did before. I have a life. I am alive. But not in the same way as before the trach. My life will never be as it was before this. And like the stages of death and dying, I have to mourn the loss of my old life and accept this new one.
This hasn't been easy, and I know that this road isn't close to being over. I know there will be many challenges ahead. There are moments when I have hope and I am okay. I also have moments in which I'm not, that I don't want this life. I want my old life back. But that isn't possible. One thing I wish is that I had had a chance to appreciate my old life and do the some things for the last time. For instance, I would love to go for a swim. You don't fully understand what you're losing when you get the trach. You can't truly comprehend the changes n your life. And you can't appreciate certain things until you no longer have them. Sometimes I am angry, angry because "Why me? Why do I have to deal with this? I don't want to have to deal with this." You have to allow yourself that anger. But in the end, it doesn't matter why. All that matters is that you do and therefore, accept it and move on.
The period after the initial trach, when I was sent home, is what I would call the great depression. It was a period in which I was crushed by what I had expected, what I had been told, and reality. This was augmented by the fact that I was to go home and the services that I needed weren't ready and the services that I needed weren't in place. Every little thing was a huge battle, and a battle that I couldn't fight alone. I couldn't advocate for myself, and I had completely lost my independence. I went into the hospital completely independent. I came out of the hospital relent on people for everything, I couldn't speak. I could only communicate through writing. I didn't have oxygen set up. I didn't have humidification. I didn't have cleaning kits. Every little thing had several hoops to jump through. I was essentially stuck in my room because that was as far as the tubing would allow, It was hell, At that point, I kind of wished I could just go quietly in the night and die peacefully. I was tired of fighting and every little thing was a fight. I wanted to be free of suffering and able to breathe easy. It was the life I had feared and why I had been so adamant about not wanting a trach, no matter what. It was not a quality of life. I wanted to live. If someone had asked me if I had done the right thing by allowing them to put in trach in, I would've said "no". I would've said that dying would be preferable and that I wanted the trach out so that I could be allowed to go peacefully.
At this point, things are better. I have some hope. I am no longer completely incapacitated. I can be independent. I can have my life back, though not in the same capacity as before. In that, I am starting to reach acceptance. I know that this is a process, one that is ever changing and never truly complete. Though my life with the trach is different and though I miss my old life, I am learning that this new life can have be good too. It is different, but it can be different and good. I can experience joy and fun. The trach was meant to give me a chance at life. It has done this. I am alive. It is up to me, however, to make the most of that life. I am the master of my destiny. Life is for the living, and I must choose to live.
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