People wonder what it is like inside the life of someone with traumatic brain injury. Since this injury is invisible, I want to offer you a clear picture of how difficult every week is. Each week is a different problem, but because of the determination to succeed most survivors with brain injuries struggle with these issues. They want to remain independent and push for their best outcome.
People from the outside looking in, believe there is nothing wrong. Or, they want it to be that nothing is wrong. Here is an inside look of just one week. This is like every week, just different problems. Struggles are ongoing in every realm of life from personal activities of daily living to all business relationships.
It’s the sheer determination, motivation and persistence to continue learning techniques to help one through that also lead to high levels of frustration. I don’t give up. I am not alone in this situation. Most survivors don’t give up, and struggle the same. I have decided to write about.
Many people without brain injuries deal with the same thing. The difference is the limited amount of cognitive and physical energy that one has; impatience; distractions; inability to concentrate; overwhelming stimuli; and inability to problem solve (listed were just a few symptoms). One problem can wipe an individual out for days before they can tackle another problem.
The following was one week in July 2012 of my life: I was having difficulty with my new iPhone.
I simply couldn’t figure out why my contacts were not working. My calendar was not syncing. I use both of these features to function at my optimal level. This is how I compensate for memory issues.
It took years to learn techniques, and with technology it’s extremely difficult with the changing features. Here I will focus just on the cell phone technology. Before my cell phone, I used the Palm Pilot.
Before Palm Pilot I used Computer. Before, Computers it was the typewriter. Before my typewriter it was handwritten journals.
Sunday we decided to walk into the Novi, Michigan Apple Store and see someone at the genius bar. They took us quickly, but with about an hour spent with the iPhone and three different people were unable to answer our questions or resolve the problem. I was told I needed to change every contact 400+ on my telephone.
That sounded a bit ridiculous. Who would be there for me if this didn’t work? I risked loosing contacts, thus my memory again. No one suggested backup. No one really understands my issues, besides I look okay. It was excessively noisy and I couldn’t tolerate the noise any longer so I looked forward to resolving the problem at home.
Since I have AT&T enhanced support feature I had another option to try to help resolve the problem. I needed ample time and plenty of cell phone minutes and a land line telephone to make this telephone call. This meant traveling to my son’s house so the calls wouldn’t be dropped, clarity of conversation, and I needed to use the cell phone to help resolve the issues at hand.
After a lengthy conversation and problem solving with the enhanced support individual I felt things would be resolved. The enhanced support individual helped move my google contacts into iPhone. A task I was told could not happen. I spent hours deleting and following through with the changes I was told to make. This was a difficult task because my back-up memory are within the notes in my contacts and calendar. I use this as my brain. I carefully tackled this on Monday.
Tuesday was a day to travel. I spent time working on changes with the computer and iPhone. With much stress and no resolution into the problem my husband and I setup an 8:00 am appointment on Wednesday in Westlake, Ohio.
Wednesday morning we attended a one-to-one session and talked to someone at the Genius bar at Apple Store. It seemed like we weren’t really getting answers to the questions for the problem at hand, but the effort was there. The issues were just too time consuming, but I was desperate to recover my memory. I can’t function without my memory and I’m relying on my coping strategies I’ve developed over the years.
Apple did give me a new iPhone. I think this was a good business practice because it might have solved the issue. We were told that if the problem continued it would definitely be a software problem. Now I needed to change things that were previously set in my other telephone.
I didn’t know what or where to begin. I went home, locked myself in my room, cried and didn’t want to talk with anyone! I was a b**ch! My life was falling apart. Things were being deleted from my notes, calendar and contacts. That’s like deleting your brain!
Thursday and Friday I agonized over the difficulties I still had. I just couldn’t tackle the problems any further. I did some mindless physical work around the house as tolerated. Something that doesn’t use brain power. I knew I needed to make another telephone call to enhanced support. That just couldn’t happen till I recovered cognitively.
Three days later I finally could think again. That’s a fairly quick recovery for cognitive issues as opposed to two decades ago when injury was new. Then it was weeks. I am blessed. Saturday afternoon I spent an entire 3 1/2 hours (three and one-half hours) working with an enhanced support technician at AT&T.
Enhanced support worked on my computer with remote functions so I can see what they are doing. This is a way everyone can continue to learn when they use technology devices to compensate or simply on a daily basis. I encourage everyone that needs extra help to purchase enhanced support. Why have something you don’t know how to use?
You can only learn with repetition. It’s easier to find help outside your family and friends as time goes on and your need for more complicated tasks increase. Otherwise, expect that relationships will be stressed and fall apart for various reasons. This can be costly, but the Enhanced Support by AT&T I refer to in this post is merely $10.00 per month and iPhone assistance at Apple Store is free. These I’ve never been aware of until this past year.
- Brainline.org, TBI, Brain injury, brain damage, Marcus Rosenberger. 8/2/12, if only we had known all this information when Marcus had a brain injury. We felt so all alone… (realestatesavant.wordpress.com)
- Traumatic Brain Injury Infographic Released – Shulman DuBois LLC Reviews the Basics of TBI Causes, Symptoms, and Treatment (prweb.com)
- Understanding the Trauma in Traumatic Brain Injury (brokenbrilliant.wordpress.com)
- TBI Recovery – Please speak my language (brokenbrilliant.wordpress.com)
- How a single brain trauma may lead to Alzheimer’s disease (sciencedaily.com)
August 13, 2012 at 12:44 am
Edie, try this one, use your best swagger and some good clothing, something the geeks behind the counters will recognize as wealth and power (wealth and power, wasn’t that something I was supposed to have?) Open a bag with your elec gadget while mentioning (making big time eye contact) “Hi, I have a brain injury, CAN YOU help me with this? Not please help me, or will you kindly assist me, but I AM SCREWED FOR GOOD AND STILL I WANT YOUR PRODUCTS. CAN you help really gets to them, They really want to believe they CAN.
Oh, the final hour of the “goodbye Olympics” just ended. Needed that choreographer from AChorus Line, or a line to John Lennon for THAT flop.
brain injury self rehabilitation (BISR)
August 14, 2012 at 10:06 am
This is great! Most often the way we ask for help is the only way you get it. CAN YOU is a great point! I love you ideas for clothing and am going to do a post on the best clothing so we can help others. I will be recruiting everyone’s ideas and I’ll put it together. We all have favorite things that work best, and hopefully others don’t have to recreate what works, rather skip that…use what others find helpful and expend their energies on improving quality of life. Thank you so much for all you help out.
August 13, 2012 at 7:01 am
Ugh – so much for the geniuses at the Genius Bar… Well, I suppose if there are all kinds of issues, they’ll have job security 😉
Thanks for writing about this – it’s important. It’s funny — so many of these things are a regular part of my everyday, I’ve kind of gotten used to them. The confusion, the exhaustion, the struggle to find help and get the right answers (not always us – sometimes it’s someone else, obviously). But it’s a good reminder for me, so that I don’t fall back into thinking that that’s just how it is, and I can’t change anything. I need to remember that things can be dealt with – even if it is through a whole slew of coping strategies and a ton of persistence.
So long as I rest, “it” can get done.
Thanks again for sharing this.
brain injury self rehabilitation (BISR)
August 14, 2012 at 10:10 am
It’s no wonder we are exhausted trying to fix others mistakes and daily life is complicated enough. We share many like struggles and it’s good to see how others are working through all this.
Last year I wasn’t even reading or researching anything on the computer. I was just existing until I finally got treatment and have improved drastically. I love finding out what’s working and what’s not!
August 13, 2012 at 8:11 am
Reblogged this on Broken Brain – Brilliant Mind and commented:
Some great thoughts describing some common TBI issues
Joseph Martin Sr.
August 14, 2012 at 7:43 pm
I understand what you have gone through, because I have been there also. My iPhone 4S and Google did not work right plus I had one persons name 30 times. Speaking to Apple for several hours in different days plus traveling to the Apple store I finally had it fixed. Using the iCloud drove me crazy plus I have iPod, iPads and my MacBook Pro which has all of my contacts and appointments which was duplicating itself which drove my crazy. I must have made 6 separate calls and 3 trips all about the same issue. The genius bar was surprised also what was going on. I brought all of my gadgets so they can see what was going on. Finally deleting contacts out of all except 1 and deleting duplicate contacts reduced it from 1000+ down to 87 contacts. I spent several hours there.
I can also relate with you for having a Palm Pilot, because I still have mine from way back then. Thank God for Smart Phones and now we who have a TBI (24 years) have a back up brain and can function all most back to “normal”.
brain injury self rehabilitation (BISR)
August 17, 2012 at 7:41 pm
Sounds like you are there with us with all the hassles, but also compensating well. I have so much more on my palm pilot, but unable to figure out how to get a back up on that device. Have you figured out how to back up your information on your palm pilot? I would love to figure out how to back up the old address book because I have notes I would love to save.
Madelyn Griffith-Haynie, MCC, SCAC
August 26, 2012 at 2:13 am
Oh BABY! Do I feel your pain! – I have gone through this over and over and over (redux) for my ENTIRE life.
Except for “retrieval on demand,” I don’t struggle as much as you seem to with memory (although having to re-input all my phone numbers might prompt thoughts about razors and wrists — I am TOTALLY dyscalculate, so *anything* with numbers is a horror — Sanskrit squiggles I *will* to make sense).
My computer/technology/systems/etc. stand in for my BRAIN. I am *so* distractible that I must use every focus-trick at my disposal to accomplish much of anything EVER. As long as I can utilize kinesthetic memory to systematize, I’m good to go (for the most part).
• I have taught myself how to set things up to compensate, and how to develop “habits” that can go on auto-pilot, freeing my PFC for tasks of intellect vs. logistics.
• I have purged my life of anyone and everyone who tries to “logic” me out of what I “should” need (or makes me wrong or makes fun, etc), ditto those who undo my systems through their lack of attention to life. (Lonely beats crazy, hands down!)
• I have accepted the fact that I must work twice as hard for half as much (and never on the items NTs – aka “vanilla-brains” – think is the difficult-to-do stuff.)
I do OK. I live a life of service that is satisfying. When I can get what I need, I even have time and cash for fun.
But when items I depend on must be “upgraded,” everything falls apart again. Each little thing must be managed consciously (EVEN if the “upgrade” goes smoothly – god forbid it does not!), so functioning slows to a crawl, and there is simply not enough time in the day to do much beyond spinning my wheels attempting to work AROUND vs. working. “For want of a nail”
Then I fall behind and the pressure of THAT makes everything harder to accomplish still (even if I’m the only one who’s pressuring me). Like you, it seems, I must recenter before I can move on (I might be able to help you with that somewhat, btw).
Geez Louise – it’s a wonder we function AT ALL, much less at the levels a great many of us manage!
• We must all make friends with the fact that dead and dying hardware must be replaced – and we can set all KINDS of systems in place to make sure we don’t hasten it’s demise or (horrors!) leave an essential piece of our brains at a diner or something.
• We can sort of adjust (through forced smiles and gritted teeth) to the reality that software continues to advance in lockstep with every new kid’s bright idea.
But why do they have to change the user interface when they “upgrade?” And how come *everything* isn’t designed to be backwardly compatible, with data migration tech the standard?
My analogy is that all those latest-and-greatest technology upgrades are about as “helpful” as having someone come in and rearrange the keys on my keyboard at whim – or make me go on a scavenger hunt to find the toilet every time I need it. They never get it. Better for the way THEY function = “better.”
TRULY, I can relate to your phone drams — and my heart goes out to you. (my current hatefulness is WordPress related — again! We’re debugging a bizarre conflict/bug/hacker inflicted weirdness that has kept me from posting efficiently – ongoingly. Random and intermittent, with few consistencies – gets better, gets worse – “Now try THIS”)
The tech-team’s been very responsive, and I DO understand they need to know about the problem to find and fix — and they DO need to make sure it’s not something dumb on my end — but my techie penpals truly have NO idea what they’re asking of me, and what it costs in time and completions (especially since it now takes HOURS to get a post up).
Whatever happened to PHONE support? We could cut through SO much back and forth in less than a half an hour LIVE.
But I digress. AND I’m preaching to the choir. It *is* nice to know it’s not just YOU, though, huh?
“Courage, Camille” – this too shall pass.
Madelyn Griffith-Haynie, CMC, SCAC, MCC
– cofounder of the ADD Coaching field –
(blogging at ADDandSoMuchMore and ADDerWorld – dot com!)
“It takes a village to educate a world!”
brain injury self rehabilitation (BISR)
August 27, 2012 at 6:44 am
Oh my! When I was reading this you identified so much that those with TBI go through. It sounds like me!
PHONE support is necessary for nearly everything. It’s harder to follow through with written instructions or questions. I’ve never been able to IM (instant message) because I can’t follow an entire conversation in that manner. Do you find that to hold true with you? It was easier when you called someone and you got a person on the other end. Now, you call people and it’s “press 1, then press 6, then press 2, then press 4, then press 5″…and all you get is computer responses. I usually press “0” to get a person, but it doesn’t always work and takes several attempts and hours to get a human on the phone.
I am also struggling with the WordPress issues, and still learning the basics. My posts are not as complex as yours, but just the same it’s not easy. Just the same, we are getting the message out even if it’s just a few.
I’ve also focused my life on helping others, and that brings great satisfaction. I can’t fit the “mold” or “expectations” of others, neither do I want to! I’ve been exhausted by “users”.
I too “smile” and appear like everyone is “okay”. I think that’s my best coping mechanism. It takes less muscle to smile then frown. I love people, but not people “users”. “Users” were brought to my attention many times over by my children, and I just didn’t see it. I thought it was “love”. Guess not! They were right. Sorry I wasted my much valued energy in the recovery process trying to help the people “users”. What a waste of energy! It doesn’t form relationships, it devalues one as a person. It’s just another real life experience that makes us stronger.
You are so articulate and I hope everyone reads this comment. I love your website. I’m just a bit slow and far behind. A little every day when I can. I haven’t been consistent in my reading and updates….let alone my posts, but I’m trying.
It is amazing that so many of us (millions I’m sure) are functioning at such a high level, but not without significant struggles. Our society makes the expectations, sets the bar so high, and we are all overachievers and succeed with great effort, and WE NEVER GIVE UP! I will accept help and tips to get through this and learn different ways of compensating. We can all help one another. I hope others with TBI are visiting your site.
Smiles, Blessings, Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
August 27, 2012 at 7:08 am
I won’t IM, I wont text (type with my thumbs squinting at a teensy-tiny screen – RU NUTS?!) So far, I’ve held the line on tweeting too – and I’m so far behind on FaceBook and LinkedIn and Pinterest I’m sure they think I’m DEAD — and probably more that I don’t even recall joining.
As for those “press 5 to . . .” voice messages — they send right me over the edge.
The list of things I struggle with ALL seem to be the things others take in stride. My areas of brilliance merely serve to set the bar ever higher in the minds of the many. My stock response anymore is, “What part of ‘ADD Poster Girl’ don’t you GET?” (sometimes I even manage to say it with a genuine smile)
The more I’m learning about what I call the “acquired ADD syndromes” the more I am convinced of the brain basics behind all of them. Still, neuroplasticity research gives me hope.
AND, as you said, we ARE getting the word out, and the more we band together, the farther our reach. I still hold the vision of Optimal Functioning that I started with, and I still want to see a world that works for EVERYONE in my lifetime (I just hope I’m still mobile enough to jump up and down when that happens!!)
Hope your phone stuff is resolving – and I am off to BED!
September 2, 2012 at 9:29 pm
I identified with your conversation so much! Newly diagnosed at 47 and in middle management, I’m learning that the feeling of overwhelness is a result of a lifetime of fighting ADD symtoms and not my intellect. I’m creating new systems and have become very aware of the issue of compatability of my technology. I am bulding my “apple empire” as we speak….Thanks again for the insights.
brain injury self rehabilitation (BISR)
September 4, 2012 at 5:55 pm
You are exactly correct. ADD, brain injuries and other medical problems are not a problem with intellect. The struggles “within” are difficult but others can’t even seem to understand. Some are finally trying to get a grasp on this, so we’re here to help out. It’s a personal issue that affects millions and families. Thanks for joining us! I highly recommend reading ADDandSoMuchMore as well as Broken-Brilliant site. There are other sites that can be helpful as well in my blogroll on the right side of the page near the bottom. There are so many wonderful people visiting here and I’m always open to suggestions and ideas. What is it that is helping you most to compensate with ADD?