A while back while having lunch with friends, I said something like, “The misery and struggle part of this story is optional.” We were discussing my difficulty “wasting” energy wondering what each reduction in dose of baclofen would bring, along with my various attempts to change that. I had only had a couple of reductions at the time, but I heard what I said and have repeated it to myself often.
When I made the difficult decision to remove the intrathecal baclofen pump, I wanted it to be on my terms. I made the decision in the absence of fear, but knew the process of slowly reducing the dose would be a challenge. I am also very aware that not having the pump itself will be a challenge.
I made several other decisions along with the major decision as well. I decided that I would handle this change in mobility with more grace than I did when the illness first caused the rapid decline.
I decided that no matter how much I felt the need to resist what was necessary in this process, I would do everything I could to surrender instead. I decided to cooperate with my fears and anxieties while not allowing them to limit me.
Misery and the perception of a struggle as I experience all this are optional. I can choose those, just as easily as I can choose to surrender to the is-ness of the experience.
Perceiving the struggle has been my modus operandi most of my life, so changing that is taking a lot of work on my part. I am making great progress because I am continuing to remind myself—and you—that we have a choice in the matter.
I find that being miserable or appearing miserable serves no purpose in this or any other process. I am allowing myself to grieve the losses each week, but that doesn’t mean I have to be miserable about those losses. I am allowing myself to be sad and anxious, while moving through it without letting it limit me.
Early in the pump drama, I made a statement that I could affect more change and make a greater impact in the world with the pump. I don’t believe that now. I think those limitations were perceived and not real. I could let the absence of the pump limit me. I certainly have that option. I do not intend to choose that, however.
Since proclaiming that misery is optional at lunch that day, I have not misused as much energy each week on what ifs. So far, I think I am balancing the need to surrender to what is necessary for safe mobility pretty well with the need to continue to try to rehabilitate each week. I am quite proud of my efforts so far.
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