Mark Jones
I have a brain injury!
It took years to accept that and to be comfortable saying that. It took years to accept that I am not the same person I used to be. It took years to realize that the accommodations I have to make aren’t going away, but rather are just part of my new life living with a brain injury.
You probably wouldn’t know I have a brain injury, I appear “normal”. I can speak well, figure things out and can still be clever. All of this sounds pretty “normal”, until you realize that I have about four good hours on most days before I am mentally exhausted and everything slows down in my head. I start to make a lot of mistakes, I can’t pay attention, I don’t notice things right in front of me and it takes longer to interpret what people are saying and for me to respond or to do just about anything. Everything in life becomes an effort and the rest of the day becomes a slow, exhausting task. Toward the later afternoon, finding the right words in my head and just having a conversation is challenging. This is my life on good days! On bad days, I start the day feeling like this. My memory and the ability to pay attention are so compromised that it really makes every day a challenge.
I have mood swings, depression, anxiety and anger issues which are common for people who live with a brain injury. Part of it is probably a by-product of what life is like with a brain injury and part of it from actual changes in the brain, how it processes and what parts of the brain are injured. Regardless of the cause, it is something that I now deal with in life.
In 2018 I got side swiped by another car, my car spun in circles, the air bags went off and I sustained a bad concussion, which was the third of three major concussions in my life, only I didn’t recover from this one. First I thought I was fine and went to work. Then my co-workers kept asking me what was wrong and that I just “wasn’t right” and I should go home. Of course I didn’t know what they were talking about since I was so unaware of myself at the time. Later that afternoon I went to PT for my back and neck and the therapist asked me if I had a concussion just by looking at me. I told her I was diagnosed with a concussion from the accident. She happened to be certified in concussion therapy and did some initial testing. By the end of this, I didn’t really know where I was (only 5 minutes from work) and got in my car, called my wife and told her I was lost and couldn’t drive and that she had to come get me. That was the beginning of my very long journey.
I had a career I loved, in a leadership role in a high end audio video technology business. This role required me to keep many “balls in the air” at one time, all while having to hit goals, and manage clients and employees at the same time. It required good executive skills and dynamic quick thinking and being able to look to the future and make a plan for the team. I could barely get through a ½ day of work, let alone do my existing job. At first I had full support from my employer, but as time went on, I was asked to step down to a sales position. This was a demotion and a large pay cut.
It seemed like I would be able to handle that, but after many mistakes, not showing up for appointments and generally screwing things up I was asked to resign from the company I helped build for 37 years. That’s when real depression set in. It was the reality of realizing I am just not the same person I was and I still had a very long road ahead of me.
I continued with all sorts of therapy, participated in a clinical trial and anything I could to improve, but still,I wasn’t my old self. My relationships suffered, I started to self isolate myself in order to not deal with my new life, it was just easier than trying to deal with it. Not a smart thing to do, I know.
Since my accident in 2018, I have come a really long way. Since I am 62 now, I changed my mindset from being disabled to being retired. It was a positive mental change for me because I stopped reminiscing about my old self and started to enjoy not working and having time to reflect and realize what is really important. Certainly killing myself just to get through a day of work wasn’t one of the important things. I have been given the gift of time at a pretty young age.
I still suffer from depression, anxiety, mood swings and PTSD, memory and attention issues from the accident, but I have more good days as time goes on. I learned to make accommodations just to get through a normal day. I have reminders set on my phone for just about everything I need to do, even the things I do daily.
Some things get better with time, but let’s not sugarcoat it, there are things that won’t and you will find ways to accommodate to get around them. Things do get better, even if everything isn’t better. With time,hard work, acceptance and a little help from your friends and family, things will feel better.
Here are some things I learned along the way:
Most people, including most health professionals, don’t understand brain injury and there seems to be a stigma attached to it. People don’t even know how to react if you tell them you have a brain injury. If you were on crutches or had a cast on, people would ask you what happened, if it hurts or if you had an operation, but a brain injury is invisible, so people expect you to be “normal” or simply don’t believe you have an injury at all.
There are millions of people living with brain injuries just trying to get through the day. If someone is bold enough to tell you they have a brain injury, try to be understanding, have a little patience and don’t tell them they seem fine! More importantly, please don’t try to minimize it by saying that you have memory problems,you forget what you were about to say and feel exhausted a lot of the time too. We understand that everybody does these things, we did it before our brain injury too, but to have that be a constant way of life every minute of everyday is not the same as the occasional word searching, losing your train of thought or getting distracted like a person without a brain injury. It doesn’t help make us feel better! It makes us feel less understood and validated.
What we are looking for is a little patience while we process what you just said and the time it takes to respond. If we forget to do something for you, it is not because it was not important to us. If we tell you that we can’t handle doing something right now because it would take too much mental energy, please be understanding and supportive. If we seem down, frustrated, anxious and have mood swings, please know it is the last thing we want for you and ourselves. If we just need to be alone for a while, don’t take it personally, it has no reflection on our love and affection for you or our relationship in any way.
Most importantly, make sure you learn to give yourself some grace!
Mark Jones
Brain Injury Warrior