To accept where we are in life requires an acceptance of what has gotten us here. It is hard to reach hope if you are stuck in the 'it is not real', or 'it is temporary' mode despite proof to the contrary.
In thinking about this I realized that the 5 stages of grief, as set forth by Dr. Elizabeth Kubler Ross, commonly thought about in relation to the dying process, was just as relevant for us.
I am still stuck in stage 1 - denial.
I am also stuck in phase 2, anger, and stage 3, bargaining. Depression, stage 4, is a conundrum for me.
Depression is often defined as feeling hopeless and helpless. Each time the doctors say "Sorry, nothing else to be done for you." I am angry, there must be something someone can do. That belief also goes by the name of Hope. My helplessness is dependent on their offer to do something. The 'fixing' is out of my hands, only the professionals can 'repair' me. I am afraid of stage 5, acceptance. What if I accept the reality of my life, the one that has to be only temporary, because really, how can such a pain be permanent? How can the disability be undoable?
What if I turned it around, changed it from making my body, in my case 'only' my eye, the offender, to creating the life that allows for the pain?
Acceptance requires a new philosophy. It means saying "Okay, I know the pain worsens when I ( ) so I will stop before it gets to the unstoppable level no matter what I am in the middle of doing. I will stop the habit of waiting until the pain becomes overwhelming". For me the changes are many: I will need to accept having to take more codeine, to change the way I take it even though that means taking more, and more often. It means taking control, saying outloud and to myself, as many times as necessary "This is the way it is, the longer the path to acceptance, the harder it is to make the changes I need to have a better life". By fighting the truth, I make my life harder.
I wrote all of the above yesterday afternoon. I went to choir rehearsal last night. I took extra codeine, my mouth becoming so dry I had trouble singing, my mind 'clouding', my attention wandering. The pain rose as we went from page to page, song to song. It's time to go home. I was at the level where I felt I could do no more eye work. The pain was not going to get better by using my eye more: hopeless. Unless I left I was refusing to help myself: helpless.
I wanted to be there, I wanted to sing. I wanted to be with the people, the learning, and yes, the fun. To do that, to fight the pain, to stay, meant refusing to accept the pain, to accept the limitations. I thought about what I had written earlier. Is this the way to acceptance? Or a do as I suggest, not as I do?
Each time I write a post I am writing about my experience but hopefully also yours, raising questions and ideas for all of us to consider. I keep thinking it will also force me to work at making the changes I need to make. And yet, what happens if I make the changes? The main thing I have in my life is the choir. If I do as I say above I have to go home early, I have to cut down on the thing that I most look forward to. Fear, not acceptance, stands in my way.
The more willing we are to accept that the pain, and what has done to our lives, is a loss, something that we need to accept and grieve the sooner we can get to the point where we control our life and the pain, and not vice versa. Hopefully, at some point, I can take these words to heart.
These are important steps to take. Remember, they don't have to be in order!
ReplyDeleteVery good point, Tesseract. Thanks for the reminder.
DeleteI think also it depends on the day...some days I can handle what I have to give up and other days it's more upsetting. I'm coming up on 19 years of chronic pain and I have to give my struggle for control over to God. It's not something I can win. That I know for sure.
ReplyDeleteI know that well, today is an okay day, yesterday maybe not so good for thinking and feeling. Knowing you can't win it is a good path to accepting.
DeleteCarol,
ReplyDeleteI have had to change my life so much. I used to be a trail runner, swimmer, indoor climber, any sport. Now, I get on my indoor recumbent bike when I can. It's not the same at all. I have been through many of the stages several times, and for now I have found acceptance and joy by blogging and writing. But I am afraid that my MS will get worse as well as my facial nerve pain, and I will have to find something else to do. I will probably go through the stages again. I've had to be open to different options that I never thought I would do.
I feel your struggle and frustration and it's hard to know what to do. 5 yrs ago, I had 3 different people tell me to write, but I didn't want to. The time was not right. Try to be open Carol and at some point something will make sense
Monique, Having to give up that part of your life I think is even harder when you used to be so active.
DeleteI am very glad that the writing and blogging is giving you joy and comfort. It is so hard to know with these diseases and disorders how they will go, and needing to be prepared for the worst, and hoping for the best.
We always know best what and when is the right thing and time for us. I am glad the time for you for your writiing is now.
I think I reached the acceptance part a long time ago. But I do still get a lot of other emotions from time to time. I mean, I get on with my life, knowing my limitations, most of the time with a smile on my face. But then I get the odd day here and there when it is hard to smile, when I just wish for a different life.
ReplyDeleteI know that feeling, I think for almost everything in our life when we have a loss, or big change, despite hopefully getting to the acceptance stage there are and will be times when something triggers the feeling of loss or hope or wanting it to change. I know well what you are saying.
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