This article from therapist Luann Jacobs is the most concise and comprehensive description of Mild Traumatic Brain Injury that I have read, as a MTBI survivor. MTBI can be caused by strokes, wounds to the brain, tumors, diseases, concussions (whether from explosions, contact sports such as hockey and football, auto accidents, or falls), and anything which compromises the circulatory or neurological functions of the brain.

At the onset of my brain injury due to a stroke, now 14 years ago, I had to learn to walk again, read again, use the telephone again, and do almost all the daily and other tasks of life too.

It is impossible to imagine, no matter how intelligent and creative one might be, just how overwhelming this challenge is. It is impossible to know the constant fatigue, exhaustion, frustration, and pain which must be endured daily still. It is impossible to know of all the obstacles thrown into the path of recovery, the meanness, the isolation and marginalization which far too many impose.

This article by Luann Jacobs is one of the best descriptions of trying to live a life with brain injury that I have read. Its only short coming is not conveying the mean adversity faced by most survivors and the sheer trauma of having a life which no longer fits together or works as it once did.

“MILD BRAIN INJURY: IMPLICATIONS FOR INDEPENDENCE”

Luann Jacobs, MA-CCC/SLP RMT

Mild brain injury is a real misnomer, as it conveys the idea that nothing much is a problem when quite the opposite is more often true. It is called “mild” because, in fact, the mildly brain injured can walk, talk, eat and dress independently, often times drive a car, shop cook, go to school, or even work.

What the term fails to account for is the inherent limits of how often, for how long (endurance), and the all-important, how consistently (e.g., every day, once a week) these activities can be performed. Even more elusive is the concept of how many of these daily activities can be done sequentially in a given day as is normal in the lives of people who are not brain injured.

The mildly brain injured cannot put back-to-back the normal activities of everyday living (dressing, eating, shopping, cooking), work (engaging in gainful employment by meeting deadlines, delivering a product for money, being present a requisite number of hours) and social life (eating with family or friends, participating in parties or holidays, going to movies, etc.). They cannot do all of this on any one day or in any one week. Many mildly brain injured have poorer hygiene than they did prior to injury because if they bathe and wash their hair, that may be all they can accomplish in a given day. So they often must trade off activities. Bathe on alternate days. Cook two days a week. If they engage in work, then someone else must be performing many or all of the other activities.

The mildly brain injured who live alone, but attend family and social functions, are often seen either as lazy (they don’t help out much before in the planning or after in the clean up), or if they do pull it together when in the company of others, they pay for it with severe fatigue, crashing for hours or days afterward. They fatigue they feel defies description, going far beyond and far deeper than anything a non-brain-injured person would consider profound exhaustion.

It is extremely common for the mildly brain injured to become overwhelmed in the attempt to organize a normal or routine life. Normal life is filled with unanticipated changes to the schedule. A routine life is never just so; it is filled with the need to do simultaneous functions, to operate on automatic while engaging the conscious mind in decision-making, planning ahead, responding to changes, and improvising with more than one person’s schedule in mind. The mildly brain injured go into meltdown when faced with normal and routine living. In fact, even when they can engage in a seemingly normal pace, it is frequently because they have not judged carefully enough how much energy they have in store, and the mildly brain injured with overload, crash and burn.

I have worked with clients with mild brain injury for many years. One of the most valuable lessons I have learned is simply to say “it’s time to take a break now,” when a client has been doing well, but starts for no particular reason to express meltdown. Meltdown is frequently not recognized until too late, not only by others, but also by the person experiencing it. Meltdown can be recognized by a shift or change in the outward behavior of the person’s seemingly normal responses. One client’s speech rate increases as she starts not to process those who are speaking to her. Another client breaks into tears for no apparent reason and can’t recall how to do simple mental functions he may have been doing (or organizing) just a moment before. Meltdowns frequently trigger the very real feelings of isolation and loss that come with brain injury that can, in turn, trigger depression.

Mildly brain injured clients who are fortunate enough to live with family or friends can be helped a great deal by timely cueing to conserve their energy. If many of the daily independence functions. which are serious energy eaters for the mildly brain injured, can be handled by others, then they can use their energy to really expand their social and work worlds. When energy does not have to be used just to stay afloat, then it can be used for other creative and productive work. However, in the mildly brain injured, the supply of energy is extremely reduced from whatever the individual was capable of prior to the injury.

Mild brain injury often is accompanied by pain. Frequently the pain and fatigue go hand in hand. But often they do not, further confounding the understanding of what system is working here—what is cause and what is effect? The pain is often felt or expressed as flu-like. Muscle and joint aches. Frequently the pain wanders between two or three loci (head, neck and lower back, for instance). Weather and pressure systems also seem to interact and cause difficulty. Pain and fatigue are often the baseline of what is felt as normal to the mildly brain injured. This is where the day starts—awakening with flu-like symptoms, and having the day go down from there with the press of many activities to do and so little time and energy to do them.

Additionally, rehabilitation and cognitive work help the mildly brain injured to stay focused on what they can do and how to organize and apportion their time and efforts. Psychological therapy helps them deal with the emotional devastation of losing the self they were prior to brain injury. Neurological help in the form of good diagnostic work-ups and supportive treatments can help to control the multiple physical symptoms: blood pressure problems, fatigue, pain, and sleep deprivation, to name a few common sequelae of brain injury. Alternative therapies such a chiropractic, acupuncture, homeopathy, Reiki, meditation, and yoga can be very valuable in treating symptoms and providing self-help and self-healing tools.

……Luann Jacobs

Note that the author has given her permission to share this article attributed to her as a means to raising awareness and understanding of this invisible crippler of people who are the walking wounded.

27 Responses to MILD BRAIN INJURY: IMPLICATIONS FOR INDEPENDENCE

It’s always been difficult trying to explain to friends and family how my daughter’s TBI affects her in her daily life and this article states it so well. It’s been 7 years and her life has been totally altered from that of an active independent working professional woman, to one who can no longer work and who needs my assistance on a daily basis. I sent this article to everyone I know with the hope that they’ll better understand her situation. Thanks for sharing it and bringing it to our attention.

Thank you for sharing this with us….what a great article…..it explains me to a tee…..Now I know how to express what I’m going through and what I need to do to help myself…..I hope it does the same for others.

I feel like that too… suvived a rape at 18 then at 23 lost both legs …then another major reck …never was the same since… but never dignosed with a TBI by any of my referring doctors or my own MD…everyday dealing with just trying to sleep or br on a schedule … I lost home coundnt balance bills deal with realotrs selling home from a fraudlent loan just could not do anything i was trying or thinking i could do everyday ! I dont have a family that understands nor relaly wants to try to understand ! trying to live everyday like this 1 minute at a time ! Sorry typing alwasy was not my skill typo queen is my nick name ! Didnt lose sense of humor thats for sure !

this explains my son as well. he just turned 15. i will be using this article to help many people try and understand his symptoms and difficulties. seems the school and people who know him like his grandma just cant figure out why he cant make it places everyday or make it anywhere on time or at all. some have even called him a lazy spoiled teenager with a mom that doesnt seem to care if he makes it to school or not.(the school actually said that to me by the way!) it is very frustrating to find any sort of help or support in my town who actually know about this type of injury. he has had many falls as an extreme bike skateboard and scooter sport kid. his last fall was october 2010. he hasnt touched any of his sports stuff since or done much else. every day is a challenge.

This is how I feel everyday, but I have never been able to put it in to words. I have to share this with my family and friends. I have been called all the negative terms in this article..And I am trying my hardest to get better.

This is by far the best explanation I have read in ages of what it is like living with MTBI. Thank you so much. I will share this with all my friends and family.
Sincerely,
Mira Bartok, author of THE MEMORY PALACE

Mira, congratulations for your book, THE MEMORY PALACE, winning the National Book Critic Circle Award for Autobiography!
Your incredibly craftted book offers similar insights to cognitive disabilities and our relationships with those in our lives with them, including ourselves. Thanks so much for your diligence and hard work and for touching so many people with your words.
I hope that you will share Louann’s article with others, as TBI survivors and care givers seem to gain great validation of their difficulties they face through her words. She also offers a glimpse to others, broadening their awareness of the challenges we face daily as survivors.
Thanks so much for appreciating the wisdom of this article.

I REALLY WANT TO THANK YOU FOR WRITING THIS.MY 22 YEAR OLD DAUGHTER HAD A TBI ALMOST 2 YEARS AGO.WE KNEW SHE HAD WHAT WE CALL “RESIDUALS” BUT THIS EXPLAINS SOO MUCH.THERE WERE THINGS I WASN’T AWARE OF.I WILL ALSO SHARE WITH MY FAMILY SO THEY CAN BETTER UNDERSTAND HER SITUATION.YOU THINK BECAUSE TIME HAS GONE BY AND THE PHYSICAL WOUNDS HAVE HEALED THAT ALL IS OKAY,BUT THIS HAS REALLY OPENED MY EYES TO HER PLIGHT.THANK YOU AGAIN.

Thank you so much!! This explains who and what I am now that I have TBI since being injured May 13, 2010 by a horse…I struggle daily., divorced mom of teenage son and unable to work, and no family but my son and BFF in this state or involved in my life before or now expect my 97 yr old grandma who is like 1200 miles away, a call away…….and no one even my son my BFF and dear friends local or far seems to understand what or why I am who I am now…I will share with all my friends and family…
I hope I actually got into words and said what I meant to and what I am thinking..proofreading doesnt always help me find “mistakes/problems” saying what I think I have just typed or said… O struggle with my language though I sound good most the time but I can not get words that I am tihinking out or even written or typed…oh I think I was told it is aphasia is why (injury to left temporal lobe), I am slow on memories too….my left frontal lobe was injured too. I am alive and survived surprisingly and happily my hospital docs after many bad days in ICU and slowly recovering day to day…ups and downs… forward and backwards …I have gotten over grieving my losses and changes of who I was and my memories caused by my TBI. I also forgave myself and have gotten to back to peace and love now and going in forward healthy recovering steps each day…
Thank you again!!!!
brita

my sympathy to you,my son will turn 21 in august and he has no life what so ever he sits on couch and watches tv all day!! anything i suggest he says i hte him dont like him ,we have been thru this going on 10 years, no one in my family understands,they think i allow him to be this way,school was very hard and i am proud to say i got an oklahoma school to pay to send my son to him to nerological institute!!! brain injury is so misunderstood, more needs to be done!!!

FINALLY!! I just wish that the rehabilitation providers would read this and then stop thinking that I am a neurotic wife….my husband has care 11 hours a day so i can keep a roof over our head by working and his carers are most definitely going to be advised to read this so they get an understanding where he is at!

What an excellent explanation of Mild Traumatic Brain Injury! Thank you for keeping it simple. It certainly will help as we keep educating others. You have a true understanding as a professional and that’s greatly appreciated.

THANK YOU SOOOO MUCH FOR THIS POST. ALTHOUGH IT HAS TAKEN ME A WIDE TO READ THIS, YOU HAVE DESCRIBED ME TO THE LETTER. I AM GOING THROUGH A HEARING SON & THIS WILL BE GREAT INFORMATION FOR MY LAWYER. PLEASE MAY I USE? THE MEDICAL SYSTEM HEAR DOESNT GET WHAT HAS HAPPENED TO ME. NEITHER DID / DO I SOME WEEKS. I AM SO APPRECIATIVE

This article was well stated. People cannot see into the mind of a MTBI. They can only see that we look normal on the outside. If they only knew what a day was like. My life had been restructured daily as I learned new things from reading, to assist me. I had to retire from teaching after 33 years. I was off 4 1/2 months befor returning part time then to regular schedule for a month or so before that shcool year ended. Then I managed to get through the next year, each day waking up hoping I would be back to normal. That didn’t happen so I eventually admitted that the job was too big for me to handle cognitively and physically. I was extrememly symptomatic each day and worn out to actual sickness by the time I got home from work. So may things I didn’t remember how to do and had to reteach myself before being able to help my students. I couldn’t do anything else. I so hated feeling that way. Retiring was so depressing for me. Giving up something you still love is difficult to do. Now my life is so much easier with nothing I have to do on most days. Doing nothing feels best. I do try to exercise 4 days a week . I’m good with modifying. Grocery shopping is so hard for me. It sometimes changes the rest of my days. I am easily confused and have difficulty with comprehension and reading. Working with numbers sets me off big time. Trying to organize paper work now ends up in total confusion. Workers comp had basically denied me all referrals to specialists that that could help me and validate the extent of my symptoms. They only approved the trigger point injections and medicines the physiatrist requested. This has been such a frustrating 2 1/2 year journey. Hope is still alive!

Great article. I find if I sleep between activities, I can handle two sometimes. It all depends on how stimulating the activity is. Ironically, I can still manage to run, at least a little bit. I just sleep a lot and retreat into dark, quiet rooms.

I add my thanks for this article. I had a “giant” (medical term, not my descriptor) brain tumor removed 90 days ago from my left anterior lobe. The surgeon said I have possibly had the tumor for 20 years, so I realize it will take longer than three months to recover…..but nonetheless, it is hard not to be frustrated by memory lapses, etc. I know “patience is a virtue” but that does not mean it is easy to be patient in the recovery process. Realizing what I am experiencing is typical for MTBI survivors makes me feel so much better!! Thank you for helping me down the path.

Thank you for writing thia article it helps me to understand why,after a severe TBI when a tweenager, while my mom was alive (she passed away 2yrs ago) & i lived with her all my life, I was able to work do well but now the simple daily activites take forever, & a few multiple MTBIs since aren’t helping me to function very well on a daily basis & work is exhusting. sorry for spelling issues – today is a whole brain-freeze kinda day! 😦

this is one of the best descriptions ever. thank you for posting it! i have been deemed a neglectful parent due to the entire child welfare and juvenile court system believing two doctors (one who just gave a prescription of prozac due to my 16 yr old being exhausted after some neuropsychological testing and he wouldnt talk to her, seem to have a flat affect. the doctor we were required to see read that and added the same for the court who also seen my son had no happy expression. why would he anyways with threats of being taken from his very world where he knows what to expect. We had currently been attending occupational therapy for sensory therapy at the time of the charge. and now he has regressed (seems to happen after any major change to his safe routine) to sleeping 12 hours at a time instead of 10 as he was down to on a daily schedule which is thrown off to sometimes night schedules after any changes as well…all due to no prozac which a doctor whom had not even read the results of his testing that said his scores were consistent with mild head injury, had considered that it could be due to this injury and not a mood disorder or depression or anxiety after all. I am angry as many of you are about doctors whom are practicing medicine, and that is all they do, practice, which means guessing till you may get it right. we are not lab experiments. it is difficult to watch people with no education or experience first hand treat those with brain injury as if it couldnt possibly be real since nothing shows on a ct scan that says normal. normal for a concussion is what the report means i believe. normal with swelling of a contusion simply means that no broken bones or fractures. but the injury did exist! and so did the symptoms. we have appealed the neglect case due to not enough factual evidence. they based the report on neglect of not enough medical care. how is learning all i can about many things such as your article and studying for hours, providing in home counseling, testing for new scores for the past two years, daily encouragement and patience of and with my son occupational therapy and on and on and on…I made a facebook page called autism etc. simply to help others as i found research including this page as one of my very first posts. as i looked back i realized this is a perfect article to prove that misdiagnosis can and does exist and that my son is very normal for all he has been through since october 2010. thank you so much to all who continue to support us with encouraging thoughts, suggestions and prayers.

In July we will celebrate the 25th anniversary of the Americans With Disabilities Act, yet equality for people with disabilities is in reality still a generation away in the future, especially for those of us with brain injury and other cognitive disabilities such as developmental and mental disabilities, and autism. I hope this article will continue to broaden public awareness and to give validation to those struggling to live life with brain injury.

I experienced numerous blows to the head as a child, had a whopper of a head injury received as the result of a bicycle accident, and then underwent 17 sessions of electroconvulsive therapy 6 years ago. As time progresses, so do my meltdowns. My ability to take care of myself is failing. I have the constant pain and lack of energy. I cannot learn new things anymore, or as easily as I used to in many cases. I can’t remember things for more than a few minutes most of the time. And I have to be watched 24/7 by my husband. All of this is so hard for me to bear because I was always very smart and quick to adapt. I held a number of high profile and technically challenging jobs and was a major breadwinner for our family. Now I have to be reminded to shower, I cannot cook for myself.

But people will look at me and figure that there is nothing wrong because I can walk, talk and communicate. No one can really understand the horror unless they have been there themselves. And for that I thank you with all of my heart for this wonderful article. You expressed something that I cannot always do.

As one reads this and digests it all,,sometimes only in short bursts for very obvious reasons.In my case its almost like both you and the person your supporting,[in my case my son].are looking into a larger than life size mirror and it is staring straight back at you.Isnt it such a real shame that in NZ,the very social agencies charged with the responsibility of helping assist you in your hours of need go out of their way to do the exact opposite.Despite articles such as the above,and well documented evidence supporting the same,our agencies ignore its credibility,and take every opportunity to make the lifes of those affected even more difficult.Our only hope of changing this culture and attitude is via our politicians.If our experience personally is anything to go by,they lack the courage and the will to do so,in my veiw for 2 reasons.[1] it could have a detrimental outcome on their political future as a large proportion of the public are not sympathetic towards those of us who are unwell,[2]the bottom line is its all about the allmighty dollar..And if you need proof of that ask to see the list of investments and the amounts that ACC are currently holding.Also look at the type of people who are on the board of ACC,and their backgrounds and track records.Maybe in hindsight you shouldnt,it is frankly sickening.