Living with a brain injury is complicated. It is, by far, the hardest thing I have ever had to do in my life. Nothing can prepare you for the complexities of what it’s like to have a traumatic brain injury.
Sometimes we are told to simply “walk through” some of the hardships that come to pass as part of being human. But the concept of walking through something implies that there will be an end – a date or time where you can look back and happily say, “Thank goodness that’s over.”
Not so with a brain injury. It never ends.
Ever.
During a recent radio interview, my wife Sarah called me “courageous.”
Um, I feel anything but courageous. Every day, I suit up and show up for this new life. I don’t always want to. But realistically, what other choice do I have? This is my one shot at life, and I need to keep trying to make the best of what I’ve got – even if what I’ve got sucks on more days than I care to admit.
When I write, I write about what is happening in the moment, about what my reality is today. And today, well today I’m just not feeling the TBI love.
I need look no further back than a few days ago. I had been expecting a delivery from Amazon. That alone makes me pretty much average. It was supposed to be a delivery of some vitamins I take now in my ongoing wellness quest.
“Sarah, we never got our last Amazon order,” I said, a bit frustrated. The tracking information said that UPS left it conveniently in our garage. I trekked out to look for my package to no avail. Sarah, knowing that I miss things more often than I used to, also went looking for our order. Like me, she came back empty-handed.
I sat on the couch and fumed for a few minutes.
“I can’t believe someone came on our property and stole our order,” I said to no one really, just venting frustration. I was ticked off, miffed, fit to be tied. Call it what you will, I was not a happy camper.
A couple of short minutes later, Sarah came out of the other room, our ordered items in hand.
Apparently, I had unpacked the order, placed everything where it should be on a closet shelf, threw away the packaging, and with the packaging, I also threw away any memory of having done so.
I knew it immediately for what it was – one of those TBI memory lapses where my brain is unable to lay down new memories. They don’t happen as often as they used to, but my TBI memory challenges still rear their ugly heads with regularity.
On the outside, I tried to make a joke about it.
“Hey, how did you just do that?” I asked, failing at my attempt to be funny.
No one laughed.
I sat there on the couch and my eyes filled with tears. My self-esteem was gone. In a heartbeat, I felt useless. I felt damaged. I felt stupid.
Sure, logic says that I’m reasonably intelligent and decidedly better than I was a few years ago. But for that moment in time, I wanted to climb under a rock and go away.
Not only is the fact that I have a brain injury not visible to anyone who meets me, but equally as invisible are the feelings of being less than those that are uninjured. Feeling like I belong on the Dented Can Shelf of humanity is not good for me, not good for Sarah, and not good for those around me.
But there are still times, more often than most will ever know, that I can look others in the eye, and feel deeply that I am less-than.
I told you. It’s complicated.
Comments (11)
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Anonymous replied on Permalink
I would love to share a site that I feel would help you tremendously in your recovery. My husband also had a brain injury from cycling and this has helped him and many others with brain injury.
Anonymous replied on Permalink
I have an acquired TBI and now cannot remember what I have been attempting to read.
Will there be any cures?
Anonymous replied on Permalink
Two and a half years later, I've suddenly realized that the main problem for me emotionally is the loss of self esteem, so I really relate to your post. I can work only very little, and have gone from a making a very comfortable living to surviving on disability payments, which isn't easy as a single person. I can no longer do my beloved sports that have defined who I am all of my life. I have severe headaches most days and somehow those go hand in hand with just as severe of a depression. I keep trying to get back to who I was before. At what point do we give that up and start embracing being an entirely different person? A person we can like? I don't have energy like I used to either, so that's another major hit to my self esteem and a barrier to starting over. I am 55, was 52 when a hit and run driver rear ended me on a freeway.
Anonymous replied on Permalink
I'm so sorry you're having to endure this diagnosis and how it can make you feel, especially after sobering reminders like you had. I can't thank you enough for sharing your experience though. My husband has a TBI diagnosis and with his short term memory loss and aphasia, he has lost his ability to express himself as clearly as you are able to, both verbally and in written forms. His hand tremors make writing and typing hard, and his vision makes tracking words on a page difficult. I feel like if he could express himself at times like these, he might have similar things to say and I'd be reminded of how it makes him feel, too. A wise counselor told me to never let these occurrences steal my hope, and I hope you never lose yours either! Thank you again for sharing something so personal with us.
Anonymous replied on Permalink
David- I read that post on Sunday and said something like, "wow, that is awful, I am glad I never did that" The next day I was in Home Depot returning some unused floor tiles, and soon after leaving the counter I didn't remember if I got a refund or not, but found a receipt in my pocket. Saved! When I went to check out, the check out clerk told me the receipt I had was just a receipt and that I was actually given cash earlier by the return clerk. "What" i said? "I can't remember that". I didn't know whether to go back to the return clerk (who was a bit snarly just short of mean), or just leave? I went outside and checked my pockets and found the exact amount of my refund in my pocket. A touch of C'est la vie. Should be my motto. John S.
Anonymous replied on Permalink
You are an amazing writer. I can feel your frustration and stress in dealing with the forgetfulness. My son at age 24 suffered a severe TBI and its been two years and he has daily occurrences of memory lapses like yours with the same out come. I can tell by the way you write that your family and caregivers are aware and are loving and accepting of your challenges even though you might want to hide. One of the other comments mentioned to give yourself permission to take a nap, and I do know that it does often help my son, he wakes up with a much clearer mind and it naturally washes away the stresses of the day. Thank you for sharing your story.
Anonymous replied on Permalink
This happens to me also. My Long Term Memory is good, but my Short Term has suffered. That is why my family does not want me to cook or bake. I will burn things. Also if I am watching a TV show and when the commercial comes on, I can not think what I am watching till it comes back, that's how short term it is. And I really have a problem remembering meeting people, so when I see them the next time it is like I am meeting them, and I get some strange comments, even rude ones. Also I get very flustered with numbers. But how I look at all this is, I'm Alive! A survivor of a Burst Brain Aneurysm, who was given horrible odds to make it...So at the end of the day it's all small stuff. You are right, it never ends, we are different then we used to be.
Anonymous replied on Permalink
I know what having a TBI is like as I have one also but have got really busy now with Dragon Boat, Pilates, Families4Families Support for ABI in SA (helping others get through this maze better than me) My accident was 19 years ago
Anonymous replied on Permalink
It has been one of those weeks for me. After several good weeks of helping others in our brain injury club, I finally felt like I was climbing out of the hole that a brain injury puts you in. I gave it all I had. So today it leaves me quite empty. I've tried resting the past several days, but there is the part of me that wants to jump back into the saddle. I can't find the horse! I can't even find the saddle.
I think giving myself permission to take a nap is in order.
Anonymous replied on Permalink
So true. Your package experience made me laugh as I find myself doing stuff just like that, since my brain injury. Thanks for sharing the realities of the post brain injury life.
Anonymous replied on Permalink
I can relate! I only suffered a "concussion," or "mild TBI" almost 3 years ago. I still do things and then have no memory of it. It is much better, as I am not leaving my car keys in the refrigerator anymore, but it is dehumanizing. I try to be patient with myself, but, as I am sure you know, it can be trying. I appreciate your willingness to share the bad with the good. That is very brave!