Resisting and Accepting...the Merry go 'Round
(note: formatting has screwed up. No time to fix...don't know what happened...arragh...I really wish it were pen and paper...bear with the funky reading.)
(note: formatting has screwed up. No time to fix...don't know what happened...arragh...I really wish it were pen and paper...bear with the funky reading.)
There is a lot of learning going on in my world...that of metering (I am *rotten*), of not blaming self, of developing ways to handle the disappointment in myself and in my circumstances...you know, all the questions that most of us who suffer from chronic illness (= chronic disappointment) are forced to deal with.
The learning has been daunting and wonderful. I realize that even though I have been exaggeratedly ill for well over a decade now, I am *still* adjusting to this person (me) whom for my entire life, I truly had very little to do with the current Joana. Geez! How dull have I been!? My lifelong "Joana" is an unstoppable powerhouse, who can do *anything.* That Joana has no limits, and takes on huge projects. She is the Joana that I still imagine myself to be, and constantly dealing with the sorry contradiction, which slams me mercilessly, has been a war that I still have not won.
Identity- redefinition is crucial in those who suffer a change in abilities and health. It is the hardest work ever, even for people who do it for wonderful reasons apart from illness. However, to be forced into identity re-creation at the hands of illness is a double-whammy. Most of us try not to think about it. Society abounds with platitudes (barf) and tells us to keep our chins up.
And we bumble forward, watching the loss of the person we had always been -- and associated our identities with...watching the identity buckle and become warped...We can NOT be the same people we were, and *that* is where we get into trouble. On a good day, in a good afternoon, we so desperately want to immediately BE that person who we used to be. We clean, we run around, we do things that have gone unattended to. We don’t pace ourselves, we fall back into the old person, the one who existed before the health-hell. And it bites us every time, as we almost always pay for it, and dearly (and when we’re paying for it, we fall into even more self- frustration).
Pour the dose of self-blame atop this painful truncation of effort and efficiency, and we are a population that truly suffers a certain type of heartbreak, more deeply than others --and even we ourselves -- do not accept or understand. To be sure, we are not generally very compassionate with ourselves. We feel like losers, lemons, rejects.
In clinging to our old identities, we insist on attempting to be something that we are NOT anymore, and that is trying and tiring. Naturally, it is also almost always a recipe for disappointment, as on trying to be that old person usually knocks us flat. Then we feel even worse.
But how to create the new identity? Where does one start? And how to accept it with gratitude and grace?
That shift into accepting what is *the truth* is a very hard one. I don't want to admit that I am not longer a powerhouse. I don't want to admit that I can not do the things that I have been able to address with force and energy, all my life. I don't want to admit that the old "Joana" no longer exists. The old Joana is dead.
At worst, somehow it means to me that I have had to accept trading her in for the gimp model.
And interesting side note: I still have a very hard time referring to myself as disabled, and was shocked when Leif recently and casually told me that he'd commented to a colleague that “my wife Joana is disabled.” "Disabled.” That is such a final, and such an unpleasant title. It harkens images of impotence, of weakness, of sniveling, of inadequacy of inconvenience of party-poopdom. I do not want to identify myself with that. Yet it is true, I am disabled. <------ Even to write that costs me dearly. It feels definitive and repressive. I reject it. Yet it is the truth, it is who I am. An ill woman who is disabled. The powerhouse is gone, the high-producing workhorse is dead.
I plan to work on this self-redefinition thoughtfully. I plan to create and accept a new identity, and to make it a realistic one. It is something that I have not thought of in these terms, exactly. I mean, I have thought that adjustment to ill life would simply *come* with time and experience. However, as we all know, we can work to shape the things that happen to us. We have a huge hand in creating what we become, who we are. To leave this crucial and difficult identity-redefinition to fate and time is to allow unbridled influences to pull us here and there, to blow us around like a paper in a windstorm. I had not thought of this with respect to myself personally, even though I have seen and worked with it many times in others.
Now if it is what it is, so be it. I detest whining and complaining and martyrs. Ugh.
Leaving my new identity building to fate and destiny has NOT served me well at all. I have evaded the task, or hoped it was not really necessary.
I believe that I am going to start with some basic lists. I want to SEE, before me and in honesty, who I no longer am, and who I AM. It will start with observation and contemplation.
List #1: Who Joana no longer is. What Joana can no longer do.
List #2 Who Joana IS. What Joana can do.
List #3 That which Joana lost on becoming disabled.
List #4 That which Joana still has, or has gained after becoming disabled.
List #5 Everyday attitudes and actions about my life that don't serve me, get me into trouble, or hurt me.
List #6 Everyday attitudes and activities that serve me, and build me up.
List #7 Practical ways of dealing with metering, pacing, and evaluating what is truly do-able (without collapse).
List #8 How to set forth each day as not not suffer with disappointment in self, and as to feel —within my limitations — productive and useful.
The above lists will create a framework from which to draw a plan, a life plan, for moving forward with dignity, self-respect, and importantly, *clarity,* something that is elusive in our worlds of illness and self-blame.
I would have been much more…infinitely more... productive and efficient if I had been able to deal with these questions from the start. I allowed life to take me in its current, and have suffered from the very common self defeat that we experience on not being able to be that person from before.
I AM going to be who I want to be. It has taken a long, long time to muddle through all of the dynamics and influences that trip me up, that make me stumble and revert to feeling useless and ineffective. But I am DOING IT. I will NOT live my life in this confusion and auto-recrimination. It is a disrespect for the life that I have been given, and even though I didn’t get my way, and even though I am not the person who I had hoped to remain, I DO have a life, and I DO have use.
Now, may I vanquish the self-deception, self-recrimination, and avoidance, and may the progress begin!
Love, Joana
