There is another side of, A Letter From a ME Survivor to Everyone Else.
Posted Apr 07 2011 1:11am
I had planned to segue into something different today, but the response to my letter was so huge that it just doesn’t feel right to move on yet.
First, I want to thank each and every person who took the time to comment and share their perspective and stories on my letter ( Tuesday Post ). I found myself being taken through a gamut of emotions while reading all of your comments – from understanding, to crying, to embracing, and even to smiling. It was absolutely amazing.
I obviously tapped into a major issue within the ME community.
The funny thing is I actually thought about not posting the letter because I thought I was the only one, or perhaps one of a few that was struggling with how to convey my feelings about this difficult situation. In addition, I really did not want to offend anyone.
You may be surprised to learn, but when I have tried to vocalize this in the past, it just kept coming out all wrong. I couldn’t remember what I was going to say. Or, I started struggling with the stuttering (from the accident) which only embarrasses me and then I find myself stumbling around even more, while struggling with the self-confidence to come out with how I feel.
Fortunately, for me, I have been given the gift of a wordsmith, so when you give me a pen (or my laptop) what I cannot formulate in my head because of cognitive/speech issues or because of heart issues, I am able to put pen to paper and express. Go figure!
Despite that, if truth be told, however, I realized something else last night.
Although I do think that others need to try to understand that this illness is counter-intuitive and to accept that I know what is best for me, I also realized that I am partly to blame for the ensuing misunderstanding.
I have now been living with ME for over 20 years. While I have not hidden the fact that I have this illness, it is not one that I have discussed in depth, or really tried to explain to very many people. I have basically remained hidden, especially in my actions.
Furthermore, I have done the push and crash routine for so long that people naturally assume that I will continue to do that no matter how ill I become, or that, that is the par for the course when dealing with this illness. I mean, if Dominique pushes and crashes, then why don’t you? I was not only setting myself up but other ME sufferers as well!
Granted, doctors (and societal mores) have prescribed this treatment, if you will, but how confusing is it for me to say I can’t, and yet, I plow right through and do it anyway?
So, in the end I have come to understand that I have to take some responsibility for the confusion because my actions have not re-enforced the truth of my words.
And that leads me to why? Well, you all now know one reason was fear. But there is another issue at play for me here too. And I started to see it rear its ugly head while I was in college.
I was nick-named pit-bull in college by my professors because I would crash and then I would get back up and give a 150%. Then I would crash and pick myself up again and go at it one more time. As a society we accept that as heroic, noble, and even inspiring.
Despite that, my professors often asked me why I was rushing to do my assignments and would repeatedly tell me if I would just slow down, you wouldn’t make so many mistakes.
Of course, I always went on the defense and tried to explain that is was because of the ME, but that defense was never accepted.
When I thought about my rushing, I couldn’t figure out why I was doing that. I have always been one to do my best at whatever I put my hand too.
It was after reading all the comments over the past two days, that it suddenly hit me.
I was rushing, or hurrying to finish up my projects, because !
In all these years I have been ill with ME, I never realized that I had somehow learned to try to cram everything I had to get done within the allotted energy time period my body would provide on any given day, because God forbid, if I didn’t, I wouldn’t get it done on time, or worse yet, I would have to add that project to my already growing list of projects for the next day. In addition, since I never knew how long my energy reserves would last, when I had them, I went to town getting everything caught up and even done ahead! I innately had learned that this ME energy clock has an alarm that would go off without warning, leaving me in the middle of projects or tasks, deprived of the energy to complete them.
Okay, just writing that last paragraph makes me feel completely over-whelmed!
I have to wonder how much of what I have done in these past years has always been accomplished through the lens of this ME energy clock – this abominable clock that is always ticking away inside of me, reminding me that the energy I have at this moment can dissipate at any moment.
All it takes is for this thing inside of me called ME to rear its ugly head, and I am out of energy. And then the five things I wanted to get done today, get to be added to another day. I then awake tomorrow confronted with what I didn’t get done yesterday and what I have to do today. Can anyone say OVER WHELMED? And … energy wipe out!
And that takes me back to conversing. Many times I have caught myself not responding, not clarifying, not self-advocating because it just takes too much darn energy. I often tell myself that it is a minor thing so just let it go. It’s not worth rocking the boat.
I even had some well-meaning friends (they truly were) point out to me that when I talk, I get louder and louder. They were assuming that I was angry. No matter how many times I would tell them I was not angry, the response was but you sound angry.
I have only recently realized that my voice gets louder the more energy I have to expend to explain something. And if I have to repeatedly explain it … well … I either get louder … or I shut down.
I am coming to a point in my life, and in my journey with ME, that I am convinced that if the ME community is going to receive the respect, treatment, research and cure we deserve, that we have to stop hiding, we have to stop accepting inappropriate responses and we have to start finding ways to become self-advocates in a way that people will want to listen to us.
Even more importantly, however, in order to bring this full circle, this also solidifies why I have to make choices to do less even when I desperately want to do more. The less energy I have, the less able I am to self-advocate, to set appropriate boundaries and to engage in a conversation that is not just words but is followed by action.
You see I am discovering that I am my own worse advocate. I want others to understand, to treat me with respect, to believe that I am truly as ill as I say, but if my life doesn’t back up what I am saying, what does that say to other’s about me?
To me, it tells others that I don’t have enough self-respect to do what I need to do, while at the same time, giving them permission to misunderstand my situation – whether on purpose or through confusion.
I am really, really humbled that my letter spoke to so many of you. I always say that what we give away always has this boomerang affect and comes back to us. In this case, it most certainly did for me.
I now understand that I need to handle my illness in a way that garners understanding, kindness and acceptance not only from others, but from me.