A Note to Brain Injury Survivors

as posted on Brain Injury Association of America's Facebook page

as posted on Brain Injury Association of America’s Facebook page

March has been named National Brain Injury Awareness Month, and while there is much to say to grow awareness of this acquired condition, I’ll start first with a link to some common facts herehere, here, and here.

While this blog is dedicated primarily to brain injury awareness, this specific post commemorates the plights of fellow sufferers, and as such is written for those actively recovering from brain injury.

To anyone who has sustained a head injury of any magnitude, and most particularly to the newer sufferer who might have similar questions as I had (when I first sustained my blow in September 2007), I congratulate you!  You have come through the hardest trial of your life, and in many cases beaten the odds to earn the unwanted but proud label “Survivor”–as in, surviving life over death. The road ahead may be long. Here is an abbreviated, albeit detailed list of a some of the things my experience revealed that I hope may be helpful to you as you endure the journey:

Tips for Head Injury Survivors

1.  No two head injuries are the same.

This is something I was grateful to learn early on, but something that remains glaringly true for me to this day.  Your injury depends a lot on how you were hit and where on the head, the speed and force of the impact, and specifically the kind of shape you were in at the time, including your age and even your occupation.  It also depends somewhat on the lifestyle you led leading up to the blow, such as whether you smoked cigarettes or marijuana.  In fact, it could be said that the possibility of head injury is the biggest motivation for healthy living, just ahead of lung cancer and alcoholism.  Of course, some people who are considered exceptionally healthy at the time of their injury are still at risk of the effects being fatal.

In my case, I was a non-smoker, athletic and healthy, but also very active intellectually–an avid reader with advanced academic degrees.  In time, I was able to return to teaching and continue to enjoy an active life cognitively, but I have never managed to do the same physically…to get so much accomplished in a day, to golf 18 holes in one day, or sail a boat, or even hike much or for long, all of which I enjoyed regularly before my injury. For me, the effects have been primarily physical and most notable in reduced strength, energy and agility. For a more gifted athlete, the body might return faster than other cognitive abilities return.  It’s difficult to generalize or predict, but I do suspect that all the reading I did in the years prior somehow helped restore me cognitively. While I also recovered lost speech and some of the lost hearing, others may experience longer lasting and more severe deficits in these areas.  Again, the results of your condition are dependent on many factors, and some of these get eclipsed.  The more you pay attention to your symptoms, the better you can help doctors determine a course of treatment.

2.  You may have suffered additional injuries.

Although I took a direct hit to the forehead and face, most of my treatment focused on recovery from brain injury.  Not much attention was given to my vision, nose, teeth and jaw, though several months later these proved also to be adversely affected, as well as my hearing, neck and spine.  Because of the brain injury, my balance was poor for a good long time, and this led to additional injuries from falls.  In fact, I am still accident prone–bumping into door knobs and tripping over chairs–I am able to wipe out getting out of bed; it’s almost like my new sport!  I have gotten so much better though, and my recovery continues.  I am lucky to be able to walk without assistance, though significantly slower than before my injury.  Many people are not as lucky in this area, and they require the aid of a walker or even a wheelchair.

What is important to note is that if you are aware of a discomfort that gets minimized because your brain injury takes precedence, keep reporting it to your physician.  Once additional areas are diagnosed, you can obtain the necessary treatments to get you on a fuller road to recovery.  My experience has been that the more pain and suffering you can eliminate, the faster your brain will actually heal.  You don’t need to be expending a lot of energy overcoming small discomforts, because these detract from the big energy your brain needs to repair itself.  The same, of course, can be said for stress.  The more stress you can eliminate, the more energy your brain gets to use for the ongoing hard job of healing itself.

3.  The length of recovery is unknown.  

When I asked doctors how long I might expect to experience the effects of concussion, I was told 2 weeks–30 days–then 45–then 60–then 90 days–then 3 months–then 6–then 18 months.  When all of these dates came and passed and I had missed every deadline, I was diagnosed with post-concussive syndrome that continued to last even beyond that expectation. The length of disability is probably directly connected to the severity of the injury coupled with one’s age and general condition of overall health.  When they diagnosed me, I suspect that doctors were going with baseline numbers that were outdated or non-specific.  My age of 50 years at onset of injury as well as the intensity of the blow I sustained (which they apparently dismissed or underestimated) seem to me the possible reasons why doctors’ initial predictions failed.

Also, I do not believe there was (or is) a test for the amount of shearing, bleeding and swelling that takes place–or if there was one, I was not given it or its results.  I did have CAT scans, but never received thorough results of their findings.  Generally speaking, aside from cognitive testing (which is very in depth), it feels like no one wants to tell you anything–or that they themselves don’t really know.  They do a lot of listening, but they don’t generally do a lot of informing.  As a lifelong student and conscientious steward of my own well being, this was a huge frustration to me.  I always wanted to know the names for things and the reasons, but doctors sometimes misread my pre-morbid curiosity as evidence of cognitive healing, when in fact I wasn’t yet able to walk ten feet without tripping or falling, had chronic ringing in my ears, and was still experiencing seizures daily.

Without question, better diagnostic procedures are necessary in order to determine stronger estimates and treatment plans.  At any rate, recovery takes as long as it takes, and sometimes is never fully attained. This is a hard reality, but it doesn’t mean improvement ends. Improvement continues.  Your brain is the most incredible machine ever constructed–and if random injuries can happen through no fault of your own, then so can miracles!

4.  Your life has changed, but you look the same.  Except that you don’t really look the same.

Brain injury is considered one of those invisible illnesses–you can’t see it, so people don’t acknowledge it. You don’t typically get casseroles or pink ribbons or called anyone’s hero–there’s no chemotherapy to take, no race that can be run.  Mostly, people just like to think that you are nuts or stupid or worse…that’s one of the hardest parts, but pretty much a given, because brain injury is full of stigma.  People judge brain injury survivors in ways they never would think to judge other survivors of serious illnesses.  You realize early on how narrow-minded many people are, and you’re just glad that even as they’re calling you “strange,” your own mind is expanding–even though you’re the one with the head injury.

Only certain people will tell you that they cannot tell that you have sustained a brain injury.  Others will be shocked at the changes, which are sometimes subtle but not exclusive to behavior (contrary to popular preconceptions).  You may, as I did, age significantly.  As one person exclaimed in horror to me: “What happened to you?  YOU LOOK LIKE YOUR GRANDMOTHER!”

It’s not a lot of fun.

Your eyes, your face, your countenance–all of that changes significantly with a brain injury.  Add this to any physical scars or wounds you may suffer.  Then add or subtract your weight in any number of pounds. If you need medication, you will likely gain weight–or, at least I did.  If you suffer severe fatigue, as I do, your muscles will atrophy, and everything will drop about a half a foot lower.  This change in appearance is harder on you than on anyone else.  When you look in the mirror, you will see a new person–your new self–and every time you see this new person it triggers a grief for that healthier pre-injury state, for that lost life.

You have to be tough, and you have to be vigilant about recovering and/or rebuilding your self-esteem…but no worries, because surviving a head injury teaches you for once and for all how entirely bad ass you really are.

5.  All your relationships change; you will become the CEO of your own self.

It’s been said that by nature, people don’t like change.  People especially don’t like the change that head injuries bring (whether real or imagined by those who knew you once).  They especially don’t like what they can’t understand.  Of course, there is a lot of denial–a lot of people wishing you would just shut up and not refer to this traumatic event.  After all, if they didn’t see it, they may question whether it really happened. They don’t want you living in a past they don’t realize is truly your present.  Such reactions are another subject all their own, but don’t feel too aghast when you discover this challenge exists.

There is a lot of negativity connected to brain injury, so you need to be the eternal optimist and CEO of your own self.  You alone know what your path has been.

Just know that when a brain-injured individual exhibits the standard changes in personality or behavior associated with the trauma, it compromises relationships…and when they DON’T exhibit such behaviors, people will imagine or project them onto the brain-injured individual.  This is truly a damned-if-you-do, damned-if-you-don’t condition, in that most people do not credit your victories, but exaggerate your deficits.  This may not be true for child survivors of head injury, but it is generally the case for adult survivors.

People will try to inhibit your growth in all sorts of offensive ways.  You will grow a thick skin.  People will also think you can’t discern their rejection or their laughter even when it is right in front of you or right behind your back–or, they’ll simply stop caring that you can.  They don’t know that there are subtleties; that you recognize when they are making fun of or mocking you, and that you will remember these moments–or again, they won’t care.  You become a sort of non-entity to them.  Remember, too, that this is typically not a sympathy-inducing condition.  It’s all unfair, but it is the way it is, and you can’t let yourself be taken down farther by any of this.

brain blog

Many people will enjoy your new (though usually temporary) lowered status.  It gives them power and prominence.  It’s okay–it’s their un-evolved thinking, not yours.  Sometimes, the ignorance can be so profound that it can seem that people practically equate brain injuries with decapitations–as if your whole head fell off.  You have to learn to shake off their primitive inferences.  Survivors of brain injury have a long road ahead educating others.  That is okay, because we are actually more patient than most of the people misjudging us.

All of these negatives can actually be to your advantage.  They keep you constantly adjusting, and they certainly keep your brain firing.

While your communication skills might be encumbered, you know that you still perceive a great deal. Some, if not most of your perceptions are accurate. Don’t dismiss your thoughts because others do. Don’t undermine your recovery because others don’t care about it. Don’t fear you cannot improve because others tell you that you can’t, or treat you as if you won’t. Putting you down makes those sorts of people feel big, superior. It enables them to dismiss what they don’t know how to address. Or maybe they just feel helpless. If they care, you will know it.

6.  Solitude is not a bad thing; embrace it.

After brain injury, you have to and will become your own best friend.  You will spend a lot of time home and in bed, unable to socialize–and this will make you fall out of favor with some people–and that’s okay. It’s all okay.  The rest is necessary, and it will restore you.

The greatest gift you will receive from your brain injury is learning to live by yourself–alone in your own perseverance.  Notice how your mind still serves you. Do not focus on what you cannot do, but rather focus on what you have re-learned and on what you are doing in this very moment.  Perhaps your wounds have healed.  Perhaps you are seizure-free.  Perhaps you have an awesome physical or speech or occupational therapist.  Even with your disabilities, you can still think, still imagine, still invent, still meditate, still pray–and if you are really lucky, maybe you can even remember to look at your planner to see where you are supposed to be and when…and maybe you will even show up on time.

One thing for certain, you don’t need anyone who doesn’t give you the respect you are due.  You have survived a life-threatening blow to the head, and you have so much still left ahead (no pun intended). Feel sorry for those who do not have a shred of the empathy you have developed.  Be proud to stand on your own and say, “I lost the one organ that controls every single thing including the breath in my body, and I am here to tell the story”…and then, tell it.

Never be ashamed to admit you have suffered a closed head injury.  It is nothing to be ashamed of, but in fact an accomplishment of the highest order.  Remember those who were not fortunate enough to survive. Endure for them.  Endure for all the millions yet to experience this harrowing affliction.

That is how you celebrate Brain Injury Awareness Month.

That is how you celebrate yourself.

I am amazed by your stories.  I am amazed by you.

Thank you for celebrating with me.

Here is some of the best news we have heard lately.

Here is a video worth watching, if you are interested in understanding TBI.

Namaste.

© Debra Valentino, all rights reserved

3 thoughts on “A Note to Brain Injury Survivors

  1. You have perfectly described every facet of the person receiving the brain injury, how they feel, how others treat them, and truthful advice on what to do! This was excellent information!

    Several years ago, I fell, and also received a brain injury. My injury was not to the extent of your traumatic brain injury. However, to this day, I am still suffering the results of it! I still cannot spell and this was a strong point in my life, since elementary school. I have a college degree and graduate hours in teaching Remedial Reading. This was additional education, on how to teach a student to spell, who has problems with this part of their brain. I also had a minor in Speech in college, in which I learned the International Phonetic Alphabet. However, all this has been lost. I don’t realize a word is not spelled correctly, until my computer underlines the word in red. I have to view the choices: as to the correct spelling of the word, to guide me. At times, I have to look up these examples in the dictionary, to determine which is the correct spelling! I no longer am able to look at a word and see it is spelled incorrectly. This spelling ability has been lost. I will continue to try to retain some of this “gift,” I used to have in writing. Time will tell, if progress is made. So far, there has been none, after over 5 years of trying.

    I also have problems thinking of words and names which continues to be even more of a problem! This is very embarrassing, as speaking to college students every semester was one of my jobs. I would not be able to do that job, at this time! At times, just talking to my husband, I will have these word lapses and have to stop, to think of the word. He understands! When I speak with others and this happens, I feel very negative feelings about myself. The person to whom I am speaking usually does not have any idea of my brain injury of the past or how it is affecting me unpleasantly, at the time! This is the most uncomfortable time of all, for me!

    This has been my experience. The reason I wrote you is: you are not alone, in the change this is in your life! The good thing is: we are survivors! It is through your dedicated effort, others will be educated: to understand people like us and also help them understand if they would have the same unfortunate thing, happen to them! Thank you for your writing on this very worthwhile topic! Thank you for allowing me, to tell my own story. It makes me feel better-to be able to reinforce positively- what you have so admirably, truthfully written! Thank you from the bottom of my and my husband’s hearts!

    • Thank you so much for being a dedicated reader of this blog, Stumbler. So much of what you say is true, and it often does feel like the effects are more noticeable to ourselves than to others. That is because we remember how we were, and we feel the changes that seem startling, when they may seem minor to others who may have challenges of their own.

  2. I can’t begin to imagine what you have gone through. All the pain and suffering I can see causes not only physical pain but so much emotional pain. Your story and having the ability to share is a true gift and a great contribution to others. Thank you for sharing and heightening my awareness and may each day bring you greater strength and wellness.

Please share your thoughts.