This isn’t an April Fool’s joke, but I wish it were!I was told this was a new step stool! Take a look at this picture. Unless it was a recent purchase from a thrift store it definitely is not a new step stool. It’s all about perception.It’s at least 15 years old, and the wear and tear is obvious. I’m learning how fortunate I am. I have a date and time when my problems began. Since this has been brought to my attention I now realize it is not me, not my symptoms of TBI, rather I’m learning this is not deliberate at all…but an entirely different neurological process of my spouse. I wonder how long has this been happening? I come to realization, it’s been too long.
This isn’t early onset of anything, it’s been happening a very long time. I can pray, I can laugh, and I can hope! I’m choosing to laugh or chuckle at the things that use to frustrate me and I will hope for answers and a cure for him. It doesn’t matter what happens, because I will always be there.
Actually, it’s helped guide me in a direction to make sure he gets the proper help. I’m finding that I have more patience, laugh instead of becoming frustrated, and talk with others about the situation.
New stool? Old stool? It’s all about perception
TBI is similar and yet very different to those who have memories problems for unknown reasons or aging health related issues. I can’t imagine how disturbing to know you are having problems and yet everyone that interacts with you also recognize problems. You simply don’t know why or how you have these problems!
Most people with TBI appear totally normal and for whatever reason others usually can’t see any problems. People are very superficial! Is it that the average age with TBI is 25 and other brain dysfunctions is much higher? Most people look good at 25, so is it appearance versus cognition?
What is it that they see in other people suffering from brain dysfunction versus those with TBI? Is it appearance? Age? Is it that TBI automatically compensates? Is it that they blame others, so the focus is not on them? Is behavior different from TBI? Or is it simply how the brain is damaged? Youthfulness versus elderly? This poses so many questions.
Brain injury is perceived as an injury that happens once, is done and over instead of the chronic injury that one lives with daily. TBI is being considered as a chronic illness.
Memory problems would truly be frightening without knowing a cause. That’s very different from traumatic brain injury. I’m in it for the long haul to support my spouse regardless of the underlying problem. With brain injury one compensates immediately, at least I did … I was never dependent regardless of how ill I became from massive subarachnoid hemorrhage. I also had formal education, training, and knew rehabilitation techniques in neurology from my nursing career. The brain can be shattered, but you can’t take education out of the brain!
I might say I had a huge advantage to self rehabilitation. I think most nurses have this same advantage! I understand this far more than I ever wanted to, but in the end if this helps just one other person my life has not been in vain. I just hope I make a difference!
So, I’ll go along with the “new stool” and all the other daily things that come up. The most important thing is to laugh daily … and now I know it’s not me!
Of course now, I rate my memory a 10 out of 10 … but it took nearly two decades before treatment and many ways of compensating with self rehabilitation. What about others that have no idea what’s happening and why? Many people have no recall of a specific brain injury or event. Things just seemed to be strange, but eventually it involves every aspect of his life.
Under all this, the spouse may have been providing healthcare professionals inaccurate information pertaining to the TBI survivor. How do you separate this? It just seems impossible until finally someone else points out the obvious. When that happens you realize it’s not all you! Now that is definitely a frightening experience! Who was listening to who?
While expressing my husband’s comment: “this is my new stool” to my sister she said: “If that is a new stool you need to return it and get your money back!” Gee, that was the best laughter I had! Oh, Humor and Laughter play such an important role in life and healing our soul. I’m sure I’ll never find the receipt to return after 15 years! So light heartedly I’ll laugh with my closest friends and family and hug and love my spouse regardless of what is happening.
Smile and Laugh, it’s healing to the soul and helps others along the way!
At least now I know it’s not all me! Actually very little is and I’m proud of that! I’m taking the blame regardless, it’s never worth arguing. I’ve been there … and learned so much! My heart breaks because of this, but it’s just another path in the journey of life.
I’m the best of all four of us! I’m sad he was able to shield himself behind my TBI, placing blame onto myself. It’s all good … we’ll get through this together. Our journey has taken so many different paths, but I’m learning from each experience. Each path gets easier, simply because experience.
On April 2, 1972 I said: “Yes I will marry you!”. No one knows what will unfold in their future, but loving and caring helps to overcome all obstacles.
Have they failed to recognize a problem in a loved one simply because you were the one with the TBI? What suggestions to do you have for anyone that this happens to?
braininjuryselfrehabilitation 
behindthemaskofabuse
April 1, 2013 at 11:28 pm
I’m sorry to hear there’s a realization to this struggle. You amaze me with your strength. 🙂
brain injury self rehabilitation (BISR)
April 5, 2013 at 7:16 pm
I still believe “In sickness and in health” (sometimes people must separate/divorce to save their soul)… in other words, life simply is not perfect! If there were an abundance of imperfections … I’ve found them all! Life is simply a learning process and at this rate I’ll never be uneducated! Take care and stay safe, Edie
behindthemaskofabuse
April 5, 2013 at 7:41 pm
I’m with you on the “In sickness and in health.” Unless there’s abuse, which in our cases there’s not, I stand behind my vows.
No you sure won’t be uneducated! I wish for you both that you didn’t have to go through it though xo
brain injury self rehabilitation (BISR)
April 6, 2013 at 7:03 pm
It doesn’t make things better by worrying, it only gets better by helping and making the best of whatever comes our way!
behindthemaskofabuse
April 6, 2013 at 7:49 pm
true 🙂
kflickinger73
April 2, 2013 at 9:00 pm
Happy “Engagement Anniversary”!
brain injury self rehabilitation (BISR)
April 5, 2013 at 7:21 pm
Thank you! Al calls it “Anniversary of the Anniversary” and he never forgets this day so it must have been a great day for him too! Easter Sunday and I wore a lavender polyester mini dress (about 6-8 inches above knee!). Al had a lavender long sleeve dress shirt, paisley tie, and pin striped suit. We went to church at St. Peter’s in Lakewood, Ohio. Amazing how we remember the details. Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
April 5, 2013 at 5:41 pm
Edie, I could probably write an article expanding on every point you make above from a neurological perspective – this is so spot-on!
Your point about appearance (they look good, therefore I expect them to “work good”) is something I have never considered before in the functional arenas I work with.
I have long observed that “expectations set by appearance” dynamic with the greater number of frustrated comments from others toward kids who are much bigger/taller than same aged children — because people subconsciously expect a particular “big” kid to be able to do/learn/know what they would expect of a child several years older. (see – size DOES matter lol)
“Little” kids (especially if they are female), seem to get a “pass” on functional or behavioral issues more frequently than their “standard” age buddies — same dynamic from the other end of the see-saw.
But I’ll bet you are absolutely correct that many of our expectations of what a person “should” be able to do are set by appearance standards, regardless of age. After all, we do “dress for success!!”
WOW!!!!
After some thought about this — and when I get back from the ACO Conference in Atlanta (leaving *next* week (yiikes!) — I’m going to explore this idea in an article on ADDasmm – I’ll credit YOU for the genesis, and will link back to this post whenever that happens.
THANKS!
xx,
mgh
brain injury self rehabilitation (BISR)
April 5, 2013 at 7:32 pm
Madelyn,
You are right … size does matter. I was always taller than all the girls and more mature so expectations seemed much higher than the average. We do dress for success, so as long as we look good we should work good! Wish that were the case.
I notice that I always come across as confident and I’m not sure if that’s good or bad. Part of this confidence is based on posture, gait-walk, eye-contact, and maybe ability to listen. Even when I’m not able to follow conversations now, I seem to know to use eye-contact and nod with all the right cues!LOL Habits aren’t always bad. I think these habits become so engrained that one doesn’t even know that aren’t processing the message.
I can see that children are at a huge disadvantage with ADD/ADHD, yet so many aren’t diagnosed and treated until they are having difficulty in the adult world. How many of these adults actually get treatment remains a mystery? or the struggle just continues on to fit the “mold” of “normal”.
Be safe and enjoy your conference. Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
April 6, 2013 at 4:24 pm
Just a quickie before I shut down the computer to keep hyperfocus temptations out of my consciousness.
You DO come across as confident, etc. – and I have no idea where that is a good thing and where it doesn’t really serve, but I’m sure it does both, in different arenas.
I mainly want to say how grateful I am for the manner in which you embrace the difficulties of ADDers. Like the TBI crowd experiences as well, most people attempt to “fix” ADDers in various ways, but few tend to empathize very often (if at all).
I know YOU know what I mean by that – and how far we can travel on the wind beneath our wings provided by a little bit of empathy, support and acknowledgment.
Thanks for providing wind beneath MY wings.
xx,
mgh
back on-line Wed. 5/17/13 (or whatever the number is that attaches itself to that Wed. —
xx,
mgh
Madelyn Griffith-Haynie, MCC, SCAC
April 30, 2013 at 4:15 am
Well, I DID write that article – but I decided to skip the neurology and concentrate on the human factor, expanding on my comment above – and I DID credit you, as promised (along with a few links over to your blog). Go take a look. (There’s an interesting comment below the post, too.)
xx,
mgh
brain injury self rehabilitation (BISR)
May 7, 2013 at 12:38 am
This was terrific article. I reblogged it as you offer ideas to help one get past the “appearance” and “expectation” issues. I also left a long comment. Thank you again for all the “credit”. I’m behind as usual … but that’s life! Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
May 7, 2013 at 2:11 am
Behind? There’s some OTHER way to be? My entire life could be framed as one long attempt to catch up!!!! lol
Thanks so much for the reblog.
xx,
mgh