Is it better to have had it for awhile than never to have had it at all?

I know on my last post of April 3, I said I had much to tell and would be writing about it all very soon. Given that it is now the 22nd of May, I realize I better have a pretty good reason for my absence if I want to gain my readers back. Actually, in a lot of ways I do but in some ways, I realize that I should have, and probably could have, been writing all along.

Lest I write a mini novel, let me simply say this: it has been a trying couple of months. For all those out there with head injuries, you will know exactly what I mean when I say that I have been feeling utterly exhausted by the constant vigilance, weary of the cotton batting that takes up so much space in my head;frustrated beyond description with the constant challenge of simple things being difficult and simply...worn out with and by the struggles. Not to sound whiny or pathetic or anything...but really, this is where I have been residing in my absence. Surely I didn't need to expose you to all that sniveling!

For all of you out there who live with and/or love someone with a brain injury, trust me when I say that no matter how empathetic you might be (and I know for a fact that so many of you are), it is impossible for you to know the absolute depth of devastation and loss that is experienced by anyone who once was in possession of a well oiled and reasonably intact working machine that now functions like a rusty, ill-functioning, undependable and unreliable imitation. Think, giving up your new laptop for the first desktop computer you ever used.

When I last wrote on April 3rd it was with the excitement of an unbelievable experience that I absolutely could not wait to share. In fact, I was in such a state of bliss that I had just about committed myself to doing whatever it would take to create a nonprofit that would ensure that every single individual with a mild/moderate head injury had access to what I was experiencing. What was it?

I had my old brain back. For five remarkable, incredible, indescribable days...I was the me I used to be. It was an experience almost impossible to put into words...one that had me thinking about each of you and how I could get you access to what I was experiencing. I don't know if I have ever felt such pure joy and such complete gratitude to the ones making this experience possible for me as I was feeling when I last posted on here. I felt, truly, as if I had been given my life back.

Under the guidance of medical and professional people,I underwent daily treatments--cortical electrical stimulation treatments, 45 minutes a day.What transpired was simply surreal, and the effects were not just my wishful, hopeful thinking. The changes in me were noticeable by people close to me who did not know what I was doing; who I hadn't told of my decision to undergo the treatments. It was in fact, immediately noticed by my dog, Teek...and that is a story in itself, but one I will save for another time. Just trust that he knew something had shifted and that I was the me of "old."

Almost immediately after the initial treatment and certainly after the second one,it was as if the chaos and the chatter in my head was suddenly gone...had just disappeared. Sensations and sensory awareness were present that I hadn't even realized had been missing until they suddenly returned(like, for example, my appestat registering fullness--something I didn't even know wasn't happening until suddenly it was happening).

And then, just as quickly as the dendrites and neurons fired up and showed us they had been dormant, not destroyed...they stopped firing and connecting. At 11:30p.m. on night five, the headache set in and when I woke up the next morning it was as if I was the me-not that I had been the week before treatment began--but the me of those first few months post accident.

I have never felt such devastation or despair as in those next couple of weeks of battling the return of those white hot headaches and the need to sleep 18, 20 hours a day. Frankly, folks...it was touch and go there for a little bit.I mean, I had been feeling so REAL. I had been feeling so PRESENT in the moment, so clear and calm and....capable.

And then, just like Charly in Flowers for Algernon, I was horrifyingly aware that it was but a brief reprieve. For those of you not old enough to remember (or too old to remember), Flowers for Algernon is a play about a man with cognitive impairment--mental retardation--who was given experimental treatment and who become a genius, only to have the treatments stop working, leaving him aware that he was returning to his prior, impaired self.

My journal throughout those days is a bit heartbreaking, ending one day with the question and musing, "I wonder...did the velveteen rabbit stay real? I can't remember. I will have to go back and read the story to find out."

Charly and the velveteen rabbit came up frequently in my journal over the last couple of months.

Because I don't want to write a book in one posting, I am going to close here. I don't want to leave you with my angst and despair,however, so let me close by saying that this is a journey, like all of it is a journey and I am not residing in that bleak place of despondency that initially set in. Tune in tomorrow and I will tell you more of this story and more about where it has taken me. And when I am through, I have a few questions I would like to toss out to all or any of you out there, and I hope you will write in your thoughts and your responses.

Until then...be safe out there and wear your helmets if you are skating and riding your bikes. In fact, wear your helmets if you are just stepping in the shower. A little caution is not a bad thing....you know what I mean?

Okay, maybe not in the shower.

Remember to treat yourself and others with grace and patience...until tomorrow (for real this time!),

Debra

PS weird fact for today: A cockroach can live several weeks with its head cut off - it dies from starvation. hmm....O-kayyyy.