Fully Recovered v. Not
Earlier in the week I sent an e-mail to state brain injury associations across the United States informing members of the Boards of each about My Lost Summer and the hope and understanding it will offer to coma survivors, family, doctors, nurses, therapists, and other caregivers. Yesterday I received an e-reply from the Support Group Coordinator for one state’s BIA thanking me for letting her know about the book.
She continued that she also is a coma survivor and tells me that “upon reading excerpts from those 5 chapters [of My Lost Summer] I personally was not enlightened.” Then she writes, “By you saying that you are ‘fully recovered’ is mis-leading. Gains ARE made; compensatory tactics & strategies are both gleaned as well as developed naturally. The body was/is designed to heal…it just needs to be fostered daily.”
Um, excuse me. You don’t know me, right? Then how can you say I’m not fully recovered? Lady, after three or four years post injury, weeks would pass that I would never even think, “I’m a coma survivor.” I had bigger fish to fry, as they say: college, a job, travel, a marriage eventually. Focus on what you can do rather than on your limitations, for cryin’ out loud.
Fostered daily (said with a slight shake of the head). Please (said with an eye roll). I’ve been in brain injury chat rooms, on forums and bulletin boards, and it seems like the participants, whether two years post injury or twenty, are wallowing in—or fostering— their own—perceived or real—pathetic-ness.
I’ve also, in-person, met survivors of coma who are no longer identified by their status as brain injury survivors, who have no time for nurturing self-pity because they’re busy with life. Not until I began research for My Lost Summer did I know that brain injury chat rooms and such exist. Rather than seeking out validation for my limitations. I strove to overcome them. And now, yes, I consider myself fully recovered. As I wrote in the epilogue of My Lost Summer and several posts back and e-mailed to this lady who thinks my label of fully recovered misleading,
"I am quick to anger and quick to tears, and I lose words all the time, especially when speaking but often when writing too. These are supposed after-effects of Traumatic Brain Injury (TBI). Yet who’s to say that these traits aren’t simply parts of my personality? Those of us who suffered our injuries early in life will never know the difference between what we could have been without the TBI and what we've become. I used to struggle with that, thinking that my life would be fuller and have more meaning and that I would be smarter and moreover a better person had Flash not fallen on that fateful day. But several years ago I accepted that I'll never know what could have been, and, overall, I'm satisfied with what I've become."
While I know that these online groups would not exist were there no need and not everyone was lucky enough to recover as well as I, I also think these groups are somehow enabling many survivors, who sit home in front of their computers looking for company in their misery about their troubles and lost abilities when their time would be better spent working on improving themselves physically, mentally, and socially.
I replied to the woman, thanking her for writing, and then I told her “The first five chapters of the book are not meant to enlighten, they are meant to ‘tease’ or grab the reader. Chapters 10-15 is the enlightening part of the book as it's told from my point of view, from that of a freshly conscious coma patient.”
I admitted to her my hesitancy to call myself fully recovered, but I certainly am not handicapped, or challenged, in any way. I have a breathing difficulty due to damage to my brainstem respiratory centers, but it presents only upon exertion, and I get what look and feel like cold chills at random times throughout the day, at least three a day, every single day, whether hot or cold. But those are the only symptoms, physical or mental, that I can attribute to the coma, and I’m not even sure about the cold chills.
So, to this lady I thumb my nose and say, “Don’t tell me I’m not fully recovered. A lot of it has to do with attitude.”
She continued that she also is a coma survivor and tells me that “upon reading excerpts from those 5 chapters [of My Lost Summer] I personally was not enlightened.” Then she writes, “By you saying that you are ‘fully recovered’ is mis-leading. Gains ARE made; compensatory tactics & strategies are both gleaned as well as developed naturally. The body was/is designed to heal…it just needs to be fostered daily.”
Um, excuse me. You don’t know me, right? Then how can you say I’m not fully recovered? Lady, after three or four years post injury, weeks would pass that I would never even think, “I’m a coma survivor.” I had bigger fish to fry, as they say: college, a job, travel, a marriage eventually. Focus on what you can do rather than on your limitations, for cryin’ out loud.
Fostered daily (said with a slight shake of the head). Please (said with an eye roll). I’ve been in brain injury chat rooms, on forums and bulletin boards, and it seems like the participants, whether two years post injury or twenty, are wallowing in—or fostering— their own—perceived or real—pathetic-ness.
I’ve also, in-person, met survivors of coma who are no longer identified by their status as brain injury survivors, who have no time for nurturing self-pity because they’re busy with life. Not until I began research for My Lost Summer did I know that brain injury chat rooms and such exist. Rather than seeking out validation for my limitations. I strove to overcome them. And now, yes, I consider myself fully recovered. As I wrote in the epilogue of My Lost Summer and several posts back and e-mailed to this lady who thinks my label of fully recovered misleading,
"I am quick to anger and quick to tears, and I lose words all the time, especially when speaking but often when writing too. These are supposed after-effects of Traumatic Brain Injury (TBI). Yet who’s to say that these traits aren’t simply parts of my personality? Those of us who suffered our injuries early in life will never know the difference between what we could have been without the TBI and what we've become. I used to struggle with that, thinking that my life would be fuller and have more meaning and that I would be smarter and moreover a better person had Flash not fallen on that fateful day. But several years ago I accepted that I'll never know what could have been, and, overall, I'm satisfied with what I've become."
While I know that these online groups would not exist were there no need and not everyone was lucky enough to recover as well as I, I also think these groups are somehow enabling many survivors, who sit home in front of their computers looking for company in their misery about their troubles and lost abilities when their time would be better spent working on improving themselves physically, mentally, and socially.
I replied to the woman, thanking her for writing, and then I told her “The first five chapters of the book are not meant to enlighten, they are meant to ‘tease’ or grab the reader. Chapters 10-15 is the enlightening part of the book as it's told from my point of view, from that of a freshly conscious coma patient.”
I admitted to her my hesitancy to call myself fully recovered, but I certainly am not handicapped, or challenged, in any way. I have a breathing difficulty due to damage to my brainstem respiratory centers, but it presents only upon exertion, and I get what look and feel like cold chills at random times throughout the day, at least three a day, every single day, whether hot or cold. But those are the only symptoms, physical or mental, that I can attribute to the coma, and I’m not even sure about the cold chills.
So, to this lady I thumb my nose and say, “Don’t tell me I’m not fully recovered. A lot of it has to do with attitude.”
posted by Elizabeth Evans Fryer at 11:31 AM
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