So, yesterday I posted a video of a little Palestinian girl in Jerusalem - one who appeared at first glance to be spiritedly reprimanding Israeli soldiers who stood guarding access (from Muslims) to the Temple Mount - a site that is holy to both Jews and Muslims. The move on the part of Israel was an ugly and cruel one: too reminiscent of the underlying treatment of and attitude toward Palestinian people in general. However, due to my illness, I failed to properly ascertain all of what the little girl was saying. (I have probably watched 10 videos in two years - watching videos online is simply not an option for me most of the time, as it crashes my brain quite quickly.) A couple people gently pointed out my error, and one reacted quite angrily, and wrote me off, then and there. I understand the anger, however, not the total leap to (what is a profoundly erroneous) conclusion, after two years of my work and writing online. I dont approve of the indoctrination into hated of ANY children anywhere, and I certainly do not condone violence of any kind. I realize that it is profoundly difficult to understand a traumatic brain injury (unless you actually live with one), but trust me when I say that I literally missed key parts of this video - much to my mortification. Im not mortified because I mistakenly posted and seemed to condone something I normally wouldnt. Im mortified because I cannot access the diagnostics or care I need, over 2.5 years into this nightmare, and sometimes my brain functions ok and most often it is (for me, internally) a precipitous and terrifying drop from the person I used to be. I prized my intellect prior to my disease, and took great pleasure in intellectual pursuits, though those things were not more important to me than integrity. I am writing this post for two distinct reasons: first, my apologies to anyone who was dismayed by my support of something I of course do not support. Thankfully, I think more people who know my general stance on things were prepared to give me the benefit of the doubt than were not - and for that, I thank you. Truly. The second reason I write this is to go a little deeper into what it is to live with an invisible disease - one that causes TBI symptoms (or excruciating pain, for that matter - neither one is preferable really.) My hope in sharing my journey with this disease publicly has been to enlighten others about the trials and tribulations of not only living with chronic disease and all that that entails, but doing so in the United States, where social justice issues come into play, and can literally mean the difference between life and death for patients. I have endeavored, through this profound journey, to provide some hope to the hopeless, to restore dignity in places where shame has been wrongfully laden, to fight the good fight when I cannot be in the trenches myself, to remain connected to the outside world, and to, somehow, keep doing something good, despite being sidelined. Upon realizing my error yesterday, I was mortified. Mortified not because I made a mistake (obviously Im strong enough and courageous enough a person to admit such - my ego is not the problem here), but rather, that Ive slipped even further, brain-wise, and I dont feel I can trust myself right now. I CANT assess things properly at times, and thus my policy has to be (while I face these worse periods), no posting. Thats ok. What is not ok with me is just how upsetting it all is - that I am this sick. And not only that, but its invisible, and it is very, very hard for people to understand what I and so many others go through, every minute of every day. My instinct is to fight for us. It is to stand up and call out and tell people truths that are critical. It is to go to bat for the sick and the suffering, the lonely and the misunderstood, as much as it is to stand up for our human rights and civil liberties. I cannot. Not yet, and I dont know when that time will come. So, until then, I want to thank those who, despite being near-strangers, know my work and integrity and give me the benefit of the doubt, not jumping to awful conclusions but rather gently saying something instead. I cannot tell you how much those small acts of graciousness mean to a person who formerly was quite clearly able to rely on herself, and her ability to perceive and present things. Those small acts of kindness make a great difference in the lives of those who are separated by a great divide: the ill from the well, and the million unobservable losses that attend the journey of making it in a world that is not remotely prepared to understand what it is to lose ones health. To conclude: of course I dont condone the indoctrination of children, unless it is an indoctrination into kindness and compassion, tolerance and social justice, conscience, love, and great hope for all of us. And I will continue to fight for what is good, as I can, while being so effectively sidelined. Dont be afraid to gently tell me things along the way. And do try to continue to assume the best in people, yes, even here, where the worst is so often what seems to prevail.
Posted on: Sat, 01 Nov 2014 20:42:48 +0000
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