I recently submitted an essay to a newspaper for Brain Injury Awareness Month - which is June, in Canada.
I haven't heard yet whether or not it will be published (still hoping), but I wanted to include an excerpt from it (a letter) in my blog nonetheless, because it addresses something that many survivors must deal with in recovery...the sense that they've become someone completely different.
Perhaps the greatest example of my struggle with this involves my now ex-husband, who, in the fallout of my brain injury, could not reconcile the woman I became with the woman he initially married.
I don't know if my personality issues are a result of the organic trauma my brain sustained, or are simply the result of the experiences, hardships, emotions, and revelations that came with having to face a life-threatening - and chronic - medical condition.
Whatever the cause, whatever the changes, I guess I've just always wanted people to know this, and so:
Dear doctors, employers, friends, family...everybody,
The first thing I want everybody to know is that I am still here.
No, I am not the same. I have lost pieces of myself. I may never again be exactly who I was and who you knew...but I am still here.
I am still me.
I am, I have to admit, a little slower than I was. My processing speed is seriously messed up. I will no longer be the nurse you knew who can juggle multiple patients, or the mother who could hike and bike and keep up with her two busy sons...but I will always have that deep need to help others that all nurses inherently have, and I will always love my sons and family.
Those parts of me remain.
So have patience with the slower me, please.
Also, have patience with the tired me.
Of all of the things that has proven unbeatable and intractable on this long journey towards who I am going to be is the fatigue. It is pathological, and relentless and well...embarrassing. If you catch me napping in the afternoon (and I now must do so almost every afternoon), please do not go out of your way to make me feel lazy or indulgent. My brain – energy suck that it is - is simply working overtime, rewiring, and re-routing signals; doing whatever a brain must do when its normal pathways have been obliterated.
I also ask that you forgive the new unpredictable me.
I will have good days, and I will have bad days. There are days when I won’t answer the phone, and days that an unexpected headache will send me into hiding. I will inevitably cancel plans with any and all of you at some point...I will skip an appointment, or bail on lunch, or refuse an invitation.
Please...don’t take it personally.
I now have a hair trigger head issue, you see. Sometimes it seems that any little thing can set it off. The weather can be my enemy...a certain type of food, too much activity.
With all that my poor brain went through, I now have to deal with this thing called 'flooding' – which I've since learned is a common brain injury outcome for those like me. It seems that my normal brain filters, now all but fried, can no longer muffle or regulate incoming (or outgoing, unfortunately) information as handily as it once did. So now, too much noise - too many lights, too many people, too much anything - is all amplified in my head. Too much unregulated input can all too quickly turn into a roar, a buzz in my head that will shut me down, make me stutter...and become so overwhelming that I can't find words, I mess up, and I lose things.
I can also be a little blunt, a little awkward and bitchy.
So please, don't rush me.
If I could ask any of you to do anything for me, it would be to sit down with me and join me in my quiet, now slower world. I am good in the quiet – deserted beaches are my happy places - and still quite social when there are only one or a few people to interact with.
No, I may not always be able to join you in your world, but I do hope that you will choose to join me in mine every once in a while.
For, while it may not be as exciting or as busy as yours, this world is where you will find me...a little broken, perhaps, and with a few pieces missing...but you will find me.
I’m still here.