On July 31,2015, a car going 40 mph collided with the bicycle I was riding. My head shattered the windshield, and I sustained a severe TBI. I was in a coma for almost a month and then began the slow process of recovery. Four years later, I’m able to do many things, including work a little bit, volunteer to help other people with brain injury, and write about my life. I’m always improving. But here are some things I still struggle with.
Pain
I don't feel discomfort or pain evidenced by facts:
- I severely burned my leg from a garden fire pit while cooking burgers. I didn't realise until I saw the burnt and scarred gash (six inches long, a quarter inch wide, and an eighth inch deep) down my calf a week or so later.
- I observed an irregularity in my groin despite feeling no discomfort. I saw a GP and he said without any hesitation that I had a hernia.
- I can be wearing shorts and walking Ronnie (our dog) through fields full of nettles. I may be distracted by throwing Ronnie a stick, and after five minutes my legs are a hive of nettle stings.
- I have received mosquito stings on holiday and wasp stings in Britain, and I only realise when the swelling/spot shows up on my skin.
If I directly inflict pain, I do feel it. I have tried pulling my fingers with pliers. It hurts! When pain happens through "unawareness," I don't get any signals.
Headaches
Before the accident, I used to experience headaches on a perhaps thrice daily basis; I no longer get headaches. In actual fact, I haven't had one since the road traffic accident (RTC). There's some expectation this may be linked to my sensory deprivation.
Short-term memory
I have severe short-term memory deficiency. I take photos of where I've parked the car at supermarkets! It affects me in almost everything I do, though I deal with it really well. Short-term memory anxiety results in me feeling compelled to do everything almost straight away, even when not practically sensible.
Taste
My taste sensation is gone. I ate hot chilies and seeds during a meal with a friend where I was solely concentrating on the conversation and I didn't notice I was eating chilies. I can usually recognise what I am eating from its texture, but the taste is meaningless.
The simple act of eating brings strong discomfort to my lips and to the roof of my mouth. Swallowing food is generally uncomfortable and I need to often use learned strategies such as lowering my chin to my chest to overcome the swallowing difficulties.
Some people ask, "So does nothing taste of anything?" My response is, "Everything tastes of nothing." It's a subtle semantic wordplay that is hard for most people to understand, but it very accurately describes the feeling I have when eating. I could take the negative approach of thinking nothing tastes nice, but I'd rather stick with the outcome that nothing tastes bad!
In 2018 I ate a deep fried Mars bar in Glasgow. I'm glad to say I didn't like it. The truth is that it was the texture/difficulty in swallowing which I struggled with, not the taste.
I always wake up with a seemingly bad taste in my mouth, which I previously combatted with mouthwash. That now relieves none of the bad taste symptoms which leads me to believe it is not purely taste related.
Appetite
I feel 'full up' very quickly. I can go a whole day without eating, then just one bite of a sandwich is enough to make me feel full. Finishing a sandwich or meal becomes a chore, rather than an enjoyable experience.
Smell
My smell sensation is almost zero. I do not recognise toilet smells, perspiration smells, or any perfume fragrance.
Touch
My touch sensation is impaired. I cannot distinguish between wet and dry towels on the washing line. I have reduced left-hand dexterity. Manipulating coins in a purse is almost impossible with my left hand. Cutting fingernails on either hand with clippers is very clumsy. I have significantly impaired ability to write legibly with my right hand (I am indeed right-handed) meaning I cannot sign my name the same way twice.
Anxiety
I get much general anxiety, resulting in predicaments such as paranoia over wallet/phone whereabouts. I check, then re-check, followed by a further check. I try to convince myself that "it's fine," but this doesn't bring me the satisfaction that I get from checking it.
When I review draft emails before sending, I find significant mistakes. Not much in spelling or grammar, which I think is expected. Instead, I'll find things like saying future when I meant past or singular when I meant multiple. Instinct may suggest it's a mistake anyone could make, but I find it time and again on maybe 25% of emails.
I would take photos on my phone of my key in the front door lock to reassure myself that I had locked the door when I went out. Otherwise, I'd have to march back to check it (I did this many times).
Ruth and I had wanted to visit our family in Portugal but were uncertain about how I would cope with flying. The solution was to take a quick and cheap flight from Manchester to Dublin. We didn't even leave Dublin airport, but we had established that I wasn't likely to suffer an anxiety problem when travelling to Portugal.
People memory
I cannot remember people's names/roles no matter how many times I am told them. This has become more than an inconvenience. I cannot recall new faces very well anymore.
Spatial awareness
I used to be fantastic at directions. It took me over a week to remember that the toilets in the new office building I was working at are a simple left when exiting the office door.
I first became aware of my spatial awareness issues on a weekend break in York when I went out several times in the day and evening and didn't walk too far, but I had no idea how to return to the hotel. It isn't just a case of not knowing if it's "the second or third left." I couldn't even point in the general direction of my target destination.
Exercise
Exercise, such as running, gives me a mental discomfort. This effectively means I cannot exercise, which I expect will result in a longer term health impact.
Overall, I would say I'm about 80% of where I was before my brain injury and never expect to reach 85%, let alone 90%. To put express matters a little differently... I expect I will never fully recover, but I have about 80% of my old faculties, and some newer, perhaps better ones.
Learn more about David's recovery on his website www.ineededtobeneeded.com
Comments (8)
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.
Anonymous replied on Permalink
Very inspiring though
Demetrios Konto... replied on Permalink
My story started on February 22nd 2004. I don’t have any memory of this event other than what bits and pieces I was told by friends and family. I was a 27 year old ‘Hot shot’ without a care in the world. I say this because I was the type of person who always had a simple solution to a problem weather it was my own or another person’s. I was an active athletic and strong person.
I grew up with very old fashion morals that stemmed from my Greek immigrant parents. My father much more so than my mother probably because he was 17 yrs older than she was. I say was because he is no longer with us physically on this place we call earth. But while I was visiting my family in his home town village in Greece, I was introduced to someone as the son of my father because this individual indicated to me that he had the privilege and not the pleasure of meeting my father who he indicated could only be described as extraordinary if only one word was to be used to describe him. I could go on and on but this is not an obituary but I wanted to take a moment to give praise and gratitude for the genetics of my being.
To continue, I said active above because I was a highly competitive and talented soccer player who would have been a ver successful professional player had I been faster. I was a big and strong defender who was very good in the air as well as on the ground but that is an entirely different story...
Let me just say that I am aware that I tend to trail off but I didn’t want to delete what I had written because it is an example of one of my many struggles.
To continue with the night of February 22nd a Saturday night and the young strapping 27 yr old lad that I was had gone out to a local bar/club in Trenton NJ with two of my buddies at the time who are no longer buddies of mine today. One who passed away from health issues and the other who much like everyone else socially in my life just is no longer in my life. On that Saturday night my two buddies and I were leaving the place where we were and on our way home got into an unfortunate horrific auto accident. I was taken to the location where this happened that I could never get to again on my own with a map or GPS or even a bus because now, Ι get lost in a circular room without without doors. But anyway, as we were on our way home at the end of a street after making a right turn in my 1997 ford thunderbird that I absolutely adored, by the way, got t-boned by a ford explorer driven by someone who had a suspended driver’s license. My buddies by the grace of God had no injuries. I say that because I don’t know what I would have done if something severe or even fatal had happened to either of them. Unfortunate, my friend who was sitting in the back seat is the one who is not longer around physically due to the health reasons.
I who took the impact to my door was not so lucky. I was immediately comatose having suffered from Diffuse Axonal Injury and several others. But before I get to that I want to preface by saying that not having a seatbelt on is why I am still alive because when I was cut out of the car I was found pinned between the door that had collapsed and on top of the center console. All of the injuries I had sustained were from the waist up.
On top of the TBI I had suffered a collapsed lung on my left side, seven broken ribs to the left side, broken left collar bone, broken jaw left side, internal organ damage repaired under routine exploratory surgery, Splenectomy, pneumonia, hypothermia.
I spent 21 days in a coma, level 3 GCS. I spent two years in rehab. Tw left side of my body completely paralyzed. I learned how to walk, talk, brush my teeth and swallow again.
Lucky or unlucky to be alive it depends on who you ask on any given day. The purpose of sharing my story is that after 16 yrs. I have not gotten closure to this event in my life. It is something that will always haunt me. In the back of my mind, I will always wonder if my TBI is responsible for something that I am unhappy about in myself. I will always wonder if a struggle of mine is a result of that, and I will always wonder what if, if it wasn’t for, and, can I change...?
For me, the life of a severe TBI survivor is forever disabling for that the personality, character and traits that made me who I was up until February 22, 2004 died that day. Because: 1) The thinking attitude personality and behavior that made me who I was is no more. But more importantly 2) The thinking attitude and personality that made me who I was not only to me but to everyone who knew me. It is very difficult for someone to have loyalty to a Person who they know of a certain way one day to then be a very different person the next. That alone is very isolating but most of all troubling. Socially, when people know of you to be someone of a certain way and then suddenly you are no longer the way they knew you it seems that they feel deceived or cheated. Μy experience has shown me that people begin to withdraw themselves and shut you out of their lives. Because it is because you are different and they are now uncomfortable with the unfamiliarity of the new you. Perhaps it is that they find less in common. I don’t know but that is fine with me because I too have found myself as now different and perhaps they have less in common with me and so I choose to withdraw. Perhaps it is maturity and the changes that come with aging such as different priorities. The things that were important to you become unimportant in favor of other things important to you.
Maybe I have become more sensitive to things or more on tune to things. Which changes are as a result of maturity and aging and which are a result of the TBI or both?
Bottom line is that there are many changes and some of which I choose and some of which I have no impact on them. The disabling part is that along with the difficulties of having a severe TBI are the difficulties of identity. Because some differences I’m unaware of and some that Ι’m aware of. Of the ones that I am aware of some I am happy about and some I am unhappy about. But whatever the reason choice or not positive or not. Self inflicted or not. There are some that are not positive and not self inflicted not chosen and not what we know of ourselves. We are very very unhappy because we at the same time are aware of limitations.
reuven replied on Permalink
Hey there Demetrios,
My name is Reuven and I am new to this site. I sense empathy after reading your personal story/history, because I too am a TBI Survivor.
My TBI story --as similar to yours, involved the collision of 2 vehicles. Immediately following my collision I became comatose and I was flown to UMD, or for a Trauma 1 hospital in Newark, NJ.
That all happened in 1991, and currently I am 48 years old. Since my fateful day in 1991, I have been rehabilitating both physically and cognitively. I know that rehabilitation is a very slow and arduous process, and is one that I believe will not only continue, but will progress throughout each day that I am alive. Best wishes!
Alan replied on Permalink
I admire that you have come a long way. I saw someone else used the powerful word “Hope” that will keep you moving forward. This process is building your strong and resilient new you! I understand your aloneness and isolation since the majority of the people don’t understand and cannot relate to your situation. Be strong and patient my friend. Thank you for sharing your touching story. I can relate since my story is similar to yours. Take care and trust yourself.
Anonymous replied on Permalink
May God continue to bless and protect you. I enjoyed reading your article. It really motivated me to accept my new life with a TBI and share how to share it with others. ;-)
Jessica replied on Permalink
I’m seven years out from having my car get hit - head on at me in my car by a sleeping 80 year old driver. I have a TBI and PBA among other problems. I have lost almost all my friends who also withdrew from me after the accident. I’m working with my therapist to accept my injury but that is hard because every time I turn around I’m being yelled at. Hurry up lady”. “Here let me do that it will be faster (my motor skills and my pride get hurt by that. Some people think I’m making it up to get sympathy. I see no path for myself. I’m afraid to see people, meet people, be with more than a couple people when two people are talking at once I can’t filter either. If I have a comment to add I’ve been asked/told not to interrupt. Then the comment/thought is gone. I’m hopeless
Anonymous replied on Permalink
I feel that. I am a couple decades out from my TBI, I barely remember what life was like before it happened and still struggle with dexterity issues. One thing that keeps me going is that there is always hope. It can be hard to find at times and the callousness of people to TBI survivors can make life tough, but there are understanding people in this world too. Accepting an injury and giving into despair are two very different things. The injury may make your life different in a number of ways, but that doesn't mean there isn't hope (even if you face limitations and/or discrimination). Life still has value and meaning.
David Wozny replied on Permalink
Acceptance, which you articulated, seems to be key for most TBI survivors, including myself. I have heard the phrase "It is what it is, get on with it" expressed in relation to TBI - it sounds brutal, but I think it speaks the truth.