TBI Victim vs TBI Survivor. Which one are you?

I use to belong to a Traumatic Brain Injury or TBI survivor's support group on Facebook.  It is a place where people can share their stories, ask and give advice or where you can simply go to cry on someone's shoulder when you need to.

However, I started noticing that most of the posts were negative in nature. People complaining about what their TBI’s took from them, what they could no longer do, how their lives were now terrible.

Finally, a member of the group named Brian, posted an interesting question. He asked (and I am paraphrasing) if  having a survivor mentality holds you back from your full potential and prohibits you from actions, not conducive to being a "survivor."

It caused a lot of debate, even infuriating several members to the point where the post was eventually removed by the group administrator.  

I found myself pondering Brian’s question all day.  I remembered that I had read an article in the Huffington Post by David Wood titled,  When Giving Up 'Wounded Warrior' Status Helps Vets Heal, so I returned to the Huffington Post website, found the article and read it once again.  

In the article, Mr. Wood brings up a similar sort of question to Brian's.  He asks, "When does one stop being a wounded warrior?"  

Mr. Wood interviewed several veterans, including Jason Gladney, an infantry platoon leader in Iraq, who suffered a TBI when an IED exploded near him. Because of the injuries he sustained from the blast, the Army forced him into medical retirement. 

Jason became depressed, angry and insecure.  His fiance' eventually left him.  It wasn't until Jason decided that he no longer wanted to continue to live his life as a "wounded warrior," and took control over his disabilities that his life turned around and he became fulfilled and happy.

That brought me back to Brian's question and I started to think about how I perceived myself as a “TBI survivor.”

TBI was not as widely known back in 1997 as it is today, so really the only concerns that I, as well as those around me had after my traumatic event was how to heal the physical injuries.  My broken bones, nerve damage, double vision, hearing loss, facial paralysis, inability to walk and even talk properly in addition to some cognitive deficiencies such as short term memory problems. The mental and emotional healing took a back seat.

Depression, anger, fear, impulsiveness, Post Traumatic Stress Disorder were all left untreated.  I became stuck in this continuous cycle of emotional instability, going from a manic state one day to being crippled with depression the next.

My way of dealing with this uncontrollable emotional roller coaster was by self-medicating myself with food and alcohol.  I became overweight and even more miserable.  I spent nearly 15 years living this way.

It wasn't until I decided that I no longer wanted to be viewed as a TBI victim any more, but as a TBI survivor that my life completely turned around for the better.

 

Traumatic Brain Injury is a nasty beast.  If you are not willing to fight, it will destroy you.  But no one is going to slay the dragon except for you.  If you sit around wallowing in self-pity, waiting for your hero to rescue you, your life will eventually come to a miserable end.

I am not saying that you cannot mourn your loss.  It is alright to cry, to scream, to be with others who understand and share your suffering, but it is not alright to simply give-up, lay-down and quit.  When all you do is talk about how bad your life is now because of your TBI and focus on what you no longer can do, you are letting your disability dictate how you live your life.

When facing adversity you have two options.  You can become your own hero, pick yourself up and decide that you are not going to let it rule the rest of your life or, you can become the victim, lie down, hand over the controls and let it lead you down a path of misery.

Two of the most common regrets nurses say people express on their deathbed are "I wish I’d had the courage to live a life true to myself, not the life others expected of me," and, "I wish that I had let myself be happier."

So what are you going to do?  Are you going to give your disability control over your life and live it as a victim or are you going to take control and be happy?  It's your call.

Living with a TBI

TBI Life: I thought I was supposed to be someplace tonight, but an hour after I got there I thought I had the wrong date so I left only to realize 4 hours later that I really was supposed to be there tonight. I let the people I was supposed to do work for down and I feel awful.

Travel: I always get travel dates wrong. Even when I have the itinerary in my hands. I often think my flights are on days they aren't and at times they aren't. Even when writing all the information down, my brain tells me I have made a mistake.  It's like there is too much information for my brain to comprehend.  Dates, times, gates, flight numbers etc.  Throw in layovers, plane changes and different time zones and don't count on me making it without at least suffering a nervous breakdown.

Appointments: I screw appointments up on a weekly basis for the same reason. Sometimes it is because I cannot remember what day of the week it is. I may know the day, but I forget it 5 minutes later.  Especially if I then have to remember another number, like time or a street address.

I double book. Because I cannot keep days straight and cannot mentally conceive time, I usually schedule two different appointments simultaneously.  I don't realize what I have done until about an hour before when I get a reminder text from my Cozi app telling me I'm supposed to be in 2 places at the same time.

I mentally cannot conceive time. I cannot determine how long it may take me to get some place. I just cannot figure it out. So I often get to places 30 minutes early because, if I don't, then I will be late. I am never "on-time." People who are continually late are a pet peeve of mine, so I always turn up 30 minutes early. Thank God we have iPhones now because I am able to sit in my car and email for 30 minutes rather than just having to just stare out the window.

Unfortunately, since having kids these problems have gotten significantly worse. My kids have missed birthday parties, play dates, Drs. appointments, have shown up to appointments hours, days, even weeks earlier.  Or we show-up the following day, already having missed whatever it was were scheduled to do.

When we have had to board our dogs, I usually have a tough time figuring out what day and time I need to drop them off and pick them up.  Again, it's too much information to coordinate.  What time is our flight, what time do we need to leave for the airport, how far is the boarding place, do we have enough time to drop the dogs off before we leave for the airport of should I board them the day before.  It is the same with the return flights and pick-up.  So I usually end up boarding them for two extra days, one before and one after our trip to not have to worry about it.  That can add up to $250 to the bill.

My husband has mentioned that this is starting to get significantly worse and that is nothing new to me.  I actually went to see my neurologist to discuss this. I am 60% more likely to get early dementia than a non brain injury adult so I was wondering if that was beginning already at the age of 45.  He told me it's hard enough being a mother, add to that the mother of a special needs child and then top that off with a mother who has a TBI.  It's the perfect storm. 

Today was a particularly bad day and just looking at my calendar for the rest of the week has given me a panic attack.

Moms usually volunteer at the kids' school. Some every day, some every week, some every other week, once a month etc. It stresses me out to volunteer because of everything I mentioned above. But, if I don't sign up to volunteer, my kids get upset and wonder why I don't want to come help out in their classroom.  They know I don't have a paying job that I am required to be at every day so they think I just don't care.  

Living like this sucks, there is no other way to describe it. My kids can't understand yet why I'm like this, they are still a little too young to comprehend the whole "invisible injury" concept. If I had a broken arm and told them I was this way because I broke my arm they would actually be ok with that. When I tell them something is the way it is because of my brain injury, they look at me blankly.

I can't warn every single person I meet that I have a brain injury so they should be prepared for me to screw something up. So people often think I'm really flaky. 

I don't really socialize with the other moms at my kids' school.  I want to be able to do what they do, but I cannot. Mentally, I cannot do it.  Even just starting to talk about holiday parties, field trips, fundraisers make me break out in a sweat.  When I get that email from Sign Up Genius I feel so ashamed when I see all the names of the other moms and their shifts so I will sign-up too and of course, I usually can't do what I signed up for because I have another appointment or just do not have the time to complete whatever it is I agreed to do.

Today was hard. I let my son Nick down but when I apologized he said, "it's ok mom, people make mistakes." I love that kid, he is really sweet. The reality of it though, it wasn't a people mistake, it was a TBI mistake and those mistakes are the most painful one to make.

I run because physical challenges I can do. I am not afraid to do triathlons because when I all I have to worry about getting myself from point A to point B using my physical strength I can handle that. When racing, I only have to worry about what I am doing at that given time.  What I need to do later doesn't even enter my mind. Some say that is what makes someone a good athlete.  Someone who is in the moment.  Someone who can concentrate on what they have to do at that precise moment and who doesn't stress about what they need to do later on. So in that regard, I guess mentally, I am good athlete.