This is a VERY lengthy response I gave to a lady who is in a common group regarding brain injury on Facebook. This was written 3 years ago…
I do not understand why the group ‘Traumatic Brain Injury Awareness’ is unable to be “tagged” in my post…but I replied to someone’s question (and it is a lengthy response–but what else would you expect from me) in the group. Upon reading back over my answer to make sure I didn’t repeat myself…I decided that the people in my life should read these words, too. If you care about me, PLEASE read this.
Conversation started October 23, 2012
My response to Mary … 1:30pm
“In response to your post on the ‘Traumatic Brain Injury Awareness’ wall…
‘Does anyone here struggle with the anniversaries of their injury or accident? So far my anniversary has been an extremely tough day to make it through and I dread the arrival. I am coming up on my five year anniversary and am hoping to somehow make something more positive out of the day this year, or at least get through the day a little easier. Anyone have any advice?’
MY RESPONSE TO MARY
“My anniversary will be ten years in January. I choose to NOT think of everything I lost due to the injury, and instead think of how fortunate I am to be doing as well as I am.
Prior to my injury, I was on the radio as a DJ…and one effect from the TBI is the speech impediment I have now. Sometimes, I get sad and miss the way I sounded prior, especially if I listen to ‘aircheck tapes/discs’; but, I always pick myself up by saying to myself (and other people) “At least I can still speak, and be understood.”
I also have days when I get so frustrated by the fact that my short-term memory fails me more often than it ever did. I am stubborn, so I have found ways to work around it. I think of the best way for me to recall something even if it is not traditional or silly to others.
As for a person’s name…what helps me is knowing how the name is spelled. I work better with spelling. So, if someone is named “Mary Ann;” I explain to her that I am not good with names, and it helps me to know how they spell their name. So, I ask if the name is 2 words first (Mary Ann), or if it is one word (Mariann)…then I will ask if the name Mary is spelled with a “Y” or maybe if the word “Ann” has an “E” at the end.
This may seem very tiresome, and I am not going to fib; it is quite a hassle (especially for me because my speech impediment causes my voice to become “tired”…but, that, too is something I have learned to overcome…”LIFE AIN’T EASY” is what I tell myself and “If you want it…WORK FOR/AT IT!”). But even if it is a hassle in the beginning, eventually it will become like second nature, and less strenuous.
I have accepted that my brain TIRES OUT a lot easier/quicker. Taking a nap is the best thing for my brain to “re-charge.” My dad would say that my brain/a brain is like a computer, and I would need to “re-boot” it often. The times became less frequent where I would only need to “re-boot” a couple times a day then take ONE nap a day…then a nap every few days…now, I rarely take naps.
I was dating my high-school best friend before my injury, but we broke up a couple of months before my accident. Apparently, the two of us were probably going to get back together around the time of my accident that caused the TBI.
He and I dated after my injury, and he AND his family really helped me by learning to become re-acquainted with the ‘new Brandy.’ You HAVE to tell people that you are the same girl you were, but you have been “upgraded” into a better version of yourself.
As with computers, anytime an “upgrade” happens, you have to have improvements in software. Well, this is where you let the people in your life know that they are “software.” They have to change the way that they interact with you…just as new software has to perform differently with an upgrade…and keep the basic things.
I have also learned that I was BLESSED with this injury to my brain. No, hear me out…for me; I would not have finished my college education without the doctors telling me that it was highly unlikely. I would not have moved to Long Island/New York (I live in the Deep Southern USA) like I always dreamed I would do. I would not have appreciated the SLOW southern life, and been grateful for growing up in Alabama (I have since moved home, and I will NEVER leave again–at least to reside in any other state).
I became engaged (to whom I have nicknamed ‘The Yankee’ for the blog) while living on Long Island. My fiancé, thought by living with me that he would “get” the things with which I deal. I force him to read the information I pulled up online for him. I would say where I related to the things being written…I would give MY examples.
Doing that only made our bond stronger. The fact that he wanted to understand me helped me more than I was able to adequately express to him. I am not married nor am I engaged to that man any longer, and I live back in Alabama, but the reasons for that have nothing to do with my TBI.
I was dating another man, who is very willing to work with my “issues.” I have also done the same thing for him that I did for my former fiancé. I have found articles that explain better what I am dealing with daily that he also must learn to deal with in the best way for me.
For example, my former fiancé learned what would set me off. He paid attention to the things that caused me to react negatively or in a particular way. He also learned to recognize the facial expressions / body language that I would get and diffuse the situation as quickly as he could. Now, he did not do this alone; he and I would discuss what catalysts would cause me to react a certain way, thus discussing how to help me help myself in those situations.
As I am sure you are well aware, a Traumatic Brain Injury often brings anger out in a person (either immediately or years later). A person who is RARELY violent or able to be “set off” may be much more easily angered (as I was pre-injury).
My former fiancé learned the things that would “set me off,” and he and I had a “code” word and if that was not able to be used…we had a “code” look. He would use the word &/or the look, and I would know to “count to ten,” remove myself from the situation for at least 5 minutes, or whatever else he and I discussed prior as the better thing to do for ME.
What is better for you may differ drastically, or it could be the same things. My former fiancé is an alcohol & substance abuse counselor, so he had went to school, was trained, and learned how to “deal” with situations similar to mine and his.
TBI’s are not a sole injury affecting only the victim of the TBI. ANYONE in a victim’s life is affected. I mean, if you are a TBI patient, you must learn to deal with the differences in your personality…but what we (the TBI victim) are not always so willing to understand is that the TBI did not affect only OUR live’s; but the lives of those around you us well.
You are different (accepting that was perhaps the most difficult and hard-pressed thing for me to do…I did not ever want this injury to define me. I was bound and determined to FORGET about this injury and be the person I was before my brain damage. I have now learned that it does not DEFINE the person I am today, but it is a part of the definition of me that cannot be left out when describing me…it is a scar that I am thankful for and proud of having).
I realize that these issues I have overcome are ones that are not experienced by all TBI survivors; therefore, I do not think that you have dealt or are dealing with the same things I did / that I do. I am simply hoping that my experiences are ones that can help you better cope with your own.
Also, it helps GREATLY to have a strong support system. My family (namely my Mom, Tammy and the man I claim as my Dad, Jeff) have been strong through my recovery…without the two of them; I am CERTAIN that I would be living in a group home like the doctors prepared them to accept.
I am 33 (34 years old in November) and I still live at home…BUT, I am a lot more independent because of being of being able to be dependent on my Mom. I also had WONDERFUL therapists that helped both me and my parents learn the better ways with which to handle these differences. One of those therapists is Perry Liles–he helped me get my speech back to where I am able to be understood and I don’t sound like a character from the Teletubbies or Sesame Street.
Now, my advice to you as you dread the day of your injury approaching is to do what I do…I choose to think of it as my “New birth-day”…I clinically died 2-3 times the day of my injury (January 13, 2004). I was also re-born that same day (thanks to the dedicated un-trained and trained rescuers, doctors, surgeons, prayers [even if you don’t believe in God; there IS a power to prayer, I know that for certain]…and also to my STUBBORN side. Lol).
Instead of remembering it as a “sad” day…think of how fortunate you are to be alive on the anniversary of the day you SHOULD HAVE died. Again, my anniversary is 10 years this January and I AM going to have a party. I don’t care if I have to throw it myself…I may even do something I never would have done before my injury (like get a tattoo-Joseph Welch/jump out of an airplane/scuba dive…etc.).
Now, 5 years is a little recent for the injury for you to have a party…if you feel better hanging out with a select few friends/family members…or if you would rather be alone and reflect on your day; I say do it. You should focus on what is best for YOU and your coping mechanisms. The way I choose to deal with the things this brain damage has left me with is I say “Well, I may not be able to (speak/remember) as well as I did BEFORE this ‘brain injury crud;’ but, at least I am able to (talk and be understood/buy post-it notes).”
I’m interested in knowing how you choose to deal with what is supposed to be a TRAGIC day…the thing I say/remember that has helped me the most is: “I may not be able to do things the same way I could, but AT LEAST I’M ALIVE AND ABLE TO COMPLAIN (and understand what it is that I am complaining about-LOL)!”
I am not a member of this Traumatic Brain Injury Group…but I have requested it. So if you do not see this in your “other” folder, I will send it to you on the FB wall when (if) I am accepted into the group.
(PS: I LOVE the movie ’50 First Dates’ because it is so “spot on” in like 98% of it…watch that movie on your ‘I’m not dead Day’…I’m a huge Harry Potter fan…and instead of a “deathday”; I refer to it as a “I’m not dead Day” or something.) — feeling blessed