The Uncertainty of Life After Brain Injury

The Uncertainty of Life After Brain Injury by David Grant

Brain injury is a serious medical condition, and I am only able to offer a layperson’s opinion. My own experience allows me to understand the challenges that many survivors face better than others who have a veritable alphabet of initials after their names. Living life as a survivor for close to eight years means that I have several thousand days of practical brain injury survivor experience.

Recently, the spouse of a survivor reached out to me in desperation. Her husband had taken a downward turn at the eight-year mark. And in her reaching out to me, my biggest fear was laid out in front of me. What if my most difficult brain injury challenges return with a vengeance? I don’t want to be “that guy” who did well for years, only to sink back into the abyss. It happens to others, and it could happen to me.

Over the years, I’ve done a lot of reading. There are many schools of thought about brain injury recovery. Some say that recovery never ends, that as long as your heart beats you will continue to recover. They extol the wonders of neuroplasticity, and they offer hope.

Another school of thought says that over time, those with brain injuries have a higher risk of dementia and other neurological problems. The hard data shows that once you have one brain injury, your odds for another injury go up exponentially. This means a future of uncertainty for many.

Over the last couple of years, I’ve been riding a bit high. My recovery has continued, and I am back to work on a full-time basis. I still have many challenges, but things have been decidedly on the upswing. It’s been one heck of a journey.

Over the years, I’ve found that I can categorize my days into one of three categories.

1. Great Days:

On these days, I actually forget that I have a brain injury. These are the best days. My day passes by with no “in your face” reminder that I have a brain injury. They are uncommon but wonderful.

2. Good Days:

On good days, I know that I have a brain injury and coexist with it. On these days, I am aware that I am compromised. My reminders might include brain fog, trouble speaking, long processing speed, and my ever-present friend, tinnitus. I do reasonably well as I coexist with my injury on days like this.

3. Struggle Days:

These are bad brain days. These days are the absolute worst. Everything I do is difficult. I second-guess every decision that I make, and my symptoms are close to intolerable. Often, I have internal brain pressure that feels like my head is in a vice. These are the “just get through” days. On these days, I struggle and generally feel miserable.

At the time of this writing, I have had several “bad brain days” in a row. It’s been a tough row to hoe. I am life-weary, frustrated, and pushing back on quite a bit of fear.

In our family, we have a couple of cancer survivors – my dad and my stepson. They both live in the reality that, though in remission, their cancer may come back at some point. In so many ways, I feel the same way. Will I end up sliding backward? Will my past become my future? What if life gets really hard again like it was early on after my accident?

These are tough questions with no meaningful answers. Only time will tell if my current challenges are just a bad spell or the beginning of a trend. Welcome to the uncertainty of life after brain injury.

Always being one to live in solutions, I have developed a practical way of living my life today. Like the familiar axiom say, I live one day at a time. I can only take care of my life today. I also avoid negative thinking like the plague. Self-talk is more powerful than most people realize. What I think can indeed become my reality.

I’m chalking up the last few days as a rough patch. Looking back through the prism of time, every rough patch has passed, so this one should, too.

Only time will tell what the future holds. I do know this: I have one life. This isn’t a dress rehearsal. I am going to make the most of my life - brain injury or not.

Comments (3)

I hear ya'. My son was in a coma for 3 months. Survived that. Now has parts of good days and a lot of difficult days. But through it all, he tells me not to worry. He looks at the positive more than the negative and sleeps when the negative gets tough. Sleep is a great way to re-set the brain. Like you mentioned about cancer, many people have challenges in life, and you have to just keep doing and enjoying whatever it is that makes you happy. Thank you for reminding us.

Dear David,

You describe living with TBI quite well. Its now been 10 months for me. I haven't had the"great days" yet, but maybe they're still to come. I know staying positive is essential, but this is a very scary place to be. All we can do.... is make the best of it, and hope those around us have some idea of what we cope with day to day.

Sherry

Love your blog David.

I'm nearly 18 months on from my TBI - the day when I went for a ride on my horse and didn't make it home for another 5 months (of which I can only remember less than 4!).

I can so relate, as many, many others can, to every word you write. And it gives me hope, as well as the feeling of not being alone in this battle that is the TBI recovery.

Thank you. Just keep on, keeping on.