What Does Your Scar Tissue Look Like?

Kara Swanson, Brain Injury Blog
What Does Your Scar Tissue Look Like?

One of the most ridiculous things about brain injury is that it’s, for all intents and purposes, invisible. I call it the Invisible Monster.

Many of us have no proof that we are injured because so many brain injuries occur without the courtesy of leaving an imprint on a CT or PET Scan. The lack of something to look at, to pour over, to show to friends and loved ones, is often frustrating because people seem to prefer, even need, proof.

Insurance companies, employers, suspicious friends and family…Some start to look at you sideways and whisper behind your back because, as they are so happy to say, “You look great!”

What could possibly be wrong?

Not many of us have props. I use a cane and, sometimes, a wheelchair. But it’s not like I have a big old cast on my head. It’s not all wrapped up in ACE bandages. I don’t have any scars to show on my scalp. Except for the too-frequent bad hair days, my head looks fine.

So, how do we convey to those in our lives we most need to believe, understand and accept us? These people we want so badly, not to understand (that would require their own injury) but simply to try…..

What this is… What this means…What this feels like… In the absence of proof, how do we paint a picture you might get of what it feels like when, in an instant, what we knew of normal will never show its face again?

Brain injury is the first moment you walk into a funeral home and see someone dear to your heart lying in a casket. It is the daughter who gets pregnant at 15. It is the addicted brother who is now homeless. It is the best friend whose doctor calls and tells her she needs to come into the office to discuss her test results. It is the neighbor who walks away from the home they’ve lived in for forty years.

Brain injury is the first time you get your heart broken. It is the spouse who tells you the affair didn’t mean anything. It is the any time you’ve put a beloved pet down. It is the call from a child who has just been arrested. It is the moment a parent starts to forget things.

It’s not so hard to understand the unseen when you have felt those same feelings. The same loss, fear, dread…It’s like any bad news you received over the phone. You didn’t have to see it to believe it and to feel its pain. 

And, for those of us with the pain, how long is it supposed to last? If you can’t even see it, how are you supposed to know when it is over? When are we done being hurt?

Rose Kennedy:

It has been said, "time heals all wounds." I do no agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.

So, what does your scar tissue look like? 

What do you cover your pains with in order to go on? To return to the well, the living, the soaring?

I was talking to a friend of mine yesterday who had burned herself pretty seriously and we were discussing our scars. I was looking at my body, counting them, recalling them, returning to the moments that caused them.

The bike kickstand that split open my shin. The thin line on my face from my cat’s claw. That slide into second base. That fall from the fence. That slip of a carrot peeler…

Each fading from red to pink to white. Each softening over time.

I imagine my brain is scarred. But, in the absence of proof, of some battle-weary badge of honor to display, I know what the scar tissue looks like. I know what I’ve used to cover my wounds.

My scar tissue is a great cup of coffee, a simple perfect brownie, a tender, juicy steak. It is college football and Autumn leaves and cider mills. It is cherry blossom trees in Spring and the smell of rain coming through the window in summer.

My scar tissue is a dozen jobs I’ve done since my injury using abilities new and old. It’s day trips and vacations and long drives along the water in a vehicle specially equipped for me. It is doing the Twist in pajamas and watching movies in the middle of the night. It is friends on-line and a phone call away.

My scar tissue includes all these incredible young people in my life whose futures I can’t wait to witness and share. It is the music friends play, the pictures they take, the stories they tell…

My scar tissue is falling in love. Laughing so hard I’m crying. It’s curling up on a winter’s night with one cat next to my head and the other one pushed against my leg. 

What is your scar tissue? What does it look like? Feel like? Taste like?

What have you chosen to cover your wounds, your pains, your Invisible Monster?

Your answer determines when your pain ends and when your life resumes.

Cheering for you!

Posted on BrainLine March 11, 2011.

From Kara Swanson's Brain Injury Blog. Used with permission. karaswanson.wordpress.com.

Comments (28)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Chelmsford private hospital survivor do i have a brain left well yes it has scars that look like a coladescope. I function
Best that my brain allows i was 17 now i am 73 and still going strong

This hit very close to home as I have these scars both inside and out. The trauma, the losses; they just never end for me now, twenty-one years later. The damage continues ad infinitum both physically and emotionally. How much longer is this supposed to go on? I don't even remember what it's like to not be brain damaged anymore. I don't remember what normal is anymore.

How do I get over this when I have to live this way for the rest of my life? Every headache, eye pain, episode of dizziness and nausea, and episode of leg weakness and incoordination is a constant reminder of the brain cyst that stole my life from me and tortured me for fifteen years before it was finally correctly diagnosed.

Every new problem so long after my first surgery in 1999, of around a dozen, is a reminder that it will never end - that there will be no end to the torture. Temporary paralyses and falls down my stairs ending with a rotator cuff tear; a muscle spasm that slammed my foot down on the gas pedal on the highway, forcing me to reach speeds of over 120 mph for several miles; and tremors that cause uncontrollable movements of my head and loss of muscle control in my arms. When will this end, now twenty years later? What did I do to earn this life sentence?

How do I get over the anger of doctors not following a diagnostic protocol and allowing me to suffer with severe, debilitating headpain for around fifteen years only to suffer a stroke during surgery to remove a cystic brain tumor that went misdiagnosed all that time?

How do I get over not having the career anymore that I worked so hard for? How do I get over losing almost everything else that mattered to me when the damage could have been prevented if the medical professionals whom I trusted had followed a diagnostic protocol?

How can anyone possibly know what this feels like? When do I get to forget about my losses after working so hard to remember and having to see the all of the scars on my head when I look in the mirror?

Your problems that come from the problem that you had may never go away, much like my traumatic head injury and the damage it caused. It is interesting that some people on this site refer to scar tissue as a release, and therapeutic response of the scarring. But in reality scar tissue is a patch that stops the bleeding. It closes the wound. And much like scar tissue of an injured lung's air sacs, it patches the bleeding injured area, but does not contribute to air exchange. No diffusion takes place through scar tissue in the lungs air sacs, and no electrical or neural activity can be conducted through brain scar tissue. But redirection often occurs to compensate for the loss. I lost neural control of my entire left leg from my crotch to my big toe. I was oblivious to my surroundings for almost three weeks following my injury. Bizarre hallucinations replaced normal thinking. I became aware gradually, but quickly. Through plenty of rehab my leg improved and a year later I was able to walk and swim almost well enough to not think about it. My brain healed four different bleeds of moderation, and I got lucky it could respond to my rehab efforts. But I will never be the same. When I was essentially dead while in early recovery, I had no worries. When I eventually die for real, I will again have no worries. Mean while, I will plug along, and hopefully you will to.

For nearly 30 years, I have suffered daily -- some days worse than others. My nursing career that I worked so hard to build, my son's childhood, every aspect of my life has been affected. Inside and out, every fiber of my being is a constant reminder. No mirrors are necessary. Paralysis, excruciating pain, the knowledge that I could not 'be there' for my son. The last is the worst. My innocent boy suffered along with me. Schoolmates teased him because of his mother's "issues". He constantly felt from a very young age that he needed to take care of his mom. We missed travel soccer tournaments together because I couldn't ride for more than 30 minutes in a car. How could I put on a bathing suit and go down the waterslide with him at Sesame Place? I could not be the involved parent I wanted to be (or should have been) so he struggled in school and, out of frustration, fell into some activities that knocked him out of the game for a few years. It was so painful to be on the sidelines and feel powerless to provide the positive role model he needed. So besides my hard-won career, my physical being, and a lot of money, I lost so much more. But I get up each day, struggle to put one foot in front of the other, and just do it... go forward. You can't look back. If you're dwelling on what you once had or what could have been, you will be eternally miserable. You need to be forward-facing with an eye on what the future will bring. Not the pain and all the other negatives. Rather, keep the focus on the positives. They may seem few and far between at first but they're there. Honest! You can't have a "Why me?!?" mindset. You have to do it one hour at a time at first. Then one day at a time. Don't be overly ambitious because that sets you up for failure out of the gate. Baby steps... find joy in one thing today. Then do it again tomorrow. And the day after. Celebrate small moments. Caring for 2 dogs often puts demands on me physically, mentally, emotionally that I fear I won't be able to manage. But for a fleeting moment, they'll do something silly and I'm able to feel a smile form on my lips , replacing the ever-present grimace due to pain. Making a conscious effort to see those brief successes as something to celebrate has helped me to persevere even though most of the time I don't think I can do it anymore. I still have pain and horrible days, I still experience tremendous guilt about the impact on my son so many years ago. But the more I look to the future, the brighter my spirits, the better I feel physically and emotionally. You seem to be dwelling on all the wrong things. It's all history! You can't go back to "before"! You can only go forward. Instead of doing it reluctantly, become an active, willing participant in your own future. Your fate is not sealed. Yes, you're stuck with your physical maladies. I am too. But you need not succumb to them, let them suck the oxygen out of your life. You don't have your old career. Get over it! Leverage your experience and knowledge to develop a new career. You were great at something you enjoyed so find joy in something new that is more reasonable for someone who has physical challenges. YOU are the master of your universe. Whining about what life used to be is a waste of each precious moment. Wallowing in self pity squanders the time you have on this earth. Cherish it instead. You can let your life shine or you can let it implode. You deserve so much more than you allow yourself. Please stop looking back and try to find even a modicum of joy and contentment in your life. I wish you all the best..

This just about made me cry, which is an achievement. I came off a motorcycle april last year. The injury left my head almost twice the size on top for a week or so, and slowly went down from there. My head is almost the same shape and size now (apart from 5×5cm lump on my forehead)which is where the contact happened) but the cosmetics dont bother me. There was bruising in the brain and since i have panic attacks (probs coz of frontal lobe area) emotional disturbance, cant think of words, spelling is difficul because i can tell it looks wrong but i cant tell why. My phone Auto corrected for me. Majorly reduced vocabulary. I haven't cried since, despite multiple horrible traumatic experiences. I have trouble making decisions, finnishing task. My days consist of very few tasks as it's all i manage to fit in, however, i do still enjoy cooking, music and being outdoors ( away from people and closer to my hairy friends which for some reason helps). My waking hours have a nightmare like quality. I'm a 19 yr old young man and i feel emotionally, mentally and physically weak. I'm scared.

Scar tissue is not being able to forget that i can't remember. Being cognitively ok but not ok. The little things no one will ever see that ig the heck out of me. The big things people chose to ignore like the elephant in the room. My son not trusting me with my own grandchild.

I understand your frustration with memory. Unfortunately, I can remember not being able to remember. How do I get over hearing that my family and friends suffered my loss every time they saw me. How do I get over seeing my mother weep every time she saw me, remembering her own trauma, after I got my memory back a year and a half later. Ignorance was definitely bliss.

From college athlete and medical student to sitting in a recliner all day and much of the night because i can't sleep I don't even understand what you're asking by what does my scar tissue look like.  Is it all the things i lost before all the brain surgeries or other things?  I'm an invalid now and who understands why I cannot be counted on for anything.  Is he stupid or lazy they wonder because they can't see having had my lobectomy that I am not a whole person.  you look fine says the disability judge, wife, boss, mother, father, brother, sister, neighbor, church leader, teacher.  he must be the laziest person to walk the face of this earth...  

Yes; I can actually remember that and having lost the "initiation" to do things because of my brain damage and I was accused, by my then husband, of being lazy.

Thank you for sharing how it is for you in such a creative way.

It would take several hands and feet to count how many times I have heard "there is nothing wrong with you, you are just trying to get attention, they were only concussions, and much more." All I can say is they are not me nor can they understand what it has been like since I was a teenager when the first concussion occurred. Even doctors brush it off as nothing because nothing can be seen on MRI's or CT scans.

My scar Tissue looks like frustration mixed with hope. The hope comes from knowing many advances have been made in helping people with brain injuries of every degree. That one day a doctor will listen and not brush it off as nothing.


Nicely written. Thank you. My scar tissue, 10 brain lesions, PTSD, balance issues, PTVS (worsens balance issues, wear prism lens), daily headache & pains, loss of independence, social & psych issues

This is beautiful! Thank you for sharing!

I have survived two separate TBIs from auto accidents. I have written a poem entitled "My Identity", which addresses the "Who am I now?" issue. www.AMosaicOfTheHeart.com tells of my heart to art journey after TBI and TIA. That is my scar tissue...
I was hit head on in my car in 2005,3 cars were totaled. I went through procedures,surgeries , and therapy for neck and shoulder injuries. Now the pills , shots,and treatments to control migraines. The 2 failed tries at killing myself. Just last night someone said " remember,I told you that a couple hours ago" I explained that the use of the word "remember" he answered his own question ! Steve

I can remember a friend asking me, "You remember...... ; don't you?" If I did, we would be having a different conversation right now, I would think to myself.

Beautifully written. Little things sure become treasures, and all the other "stuff" is just that. With limited brain capacity only the treasures have room to stay. The bad stuff gets buried, and the beauty of life shines thru once more. Rest in this and know that it is truth. Thank you for sharing your scarring with us.
As someone who is told repeatedly that there is no way I could have a Brain Injury because I act and speak so normally. As someone for the past 6 years who has struggled with losing part of his frontal lobe, 5 other stroke injuries and the numerous side effects from the meds, I can guarantee you that I will never be anywhere close to who I used to be in many ways. I now volunteer with the disabled community when I am able because they are my new family and are really the only ones who truly understands what the struggles of a TBI survivor are. God is gracious but I just wish more people were too.
My son's scars are all over his body from the many times he has fallen from passing out, seizures, not being steady on his feet...not to mention the ones that will be found on his brain after he dies and BU studies his brain tissue. I see the scars (visible and not) every single day. I don't need proof and shame on anyone close to him that does!

I have gone thru the same with my son ......much love & aloha

I know that it is invisible. I have completed 8 years of this invisible journey. And as I read this story, I was confused. Confused because it was eloquently written and I can't seem to get the point. It seems as though I just continue making scar tissue if that makes any sense. I can walk and talk and many other normal things, but I can't be out in public. My brain goes to mush, I can't handle the multiple inputs of noise and I have to get out of anywhere that has multiple points of sound. No restaurants, no movies, no gatherings, etc. etc. etc. So all of the above events are impossible to me. I couldn't go to my grandmother's funeral, or my daughter's graduation from high school, or, or, or. So instead of these things you mention helping to ease the scars, they just keep making new ones. I think I finally get the point of the article.
Kara...beautifully written and an encouragement to anyone living with brain injury. I live in ND and specialize in work with mild TBI. I shared your article on our business Facebook Page. www.facebook.com/onwordtherapy Thank you for encouraging others! Nan Kennelly MS CCC Onword Therapy Fargo, ND
Thank you - I am a teacher who last October a student tripped me (it was an accident). I fell hit my head on the corner of a desk and then the hard tile floor. I have been diagnosis with Post Concussion Syndrome. I have Chronic Migraines. The comments I received are - A concussion only lasts a couple of days, you should be find now. I was also diagnosis with memory loss. I am still teaching and as long as I make list and no longer multi-task I am okay. However, I told someone let me right that done or I will forget their response \"You are still milking that\". My lastest MRI is showing more scar tissure, we have some room for concern. I usually have to miss one or two days a week of work begins the Migraines put me to bed. Its the snide comments that get to me the most. I almost want to carry my MRI results to show everyone. Thank you.
Kara........you are a godsend for us TBI Survivors. My Scar Tissue has left me with a big open heart
I hang around people who aren't real smart and that makes me feel better about myself. That is my scar tissue.
This is fabulous. Thank you for pointing these things out. I also look normal. I cannot "perform" my injury. A second MRI seven years after my stroke shocked some people (including my ex)because they thought a stroke "went away". Brain damage is forever. Thank heavens we now know and can take advantage of the brain's plasticity. Now I know some of the other ways of healing the scar tissue. Thank you--my tears are gratitude for you. :)
How poignantly written....thank you.
When i was at the first of my "nursing home" after my getting shot in my head, many of the visitors and staff wondered why i was in the facility because i was so "normal" looking and acting