Blog Post 2 - And so it continues, on and on

 When does this nightmare end? It starts to feel like everything is set on a never-ending loop.

Also, You’re your own source of therapy at some point. It’s terribly difficult to come to this conclusion, especially if you already meet with a therapist. How can someone so inexperienced (you) become the soothsayer to their own troubled mind and damaged brain lobes? Well, what did you do in the past when you were troubled? Did someone you trusted, respected or loved talk you down, or did you handle your mess of emotions yourself?

When everything inevitably starts to feel overwhelming, you realistically only have yourself to turn to, as you’re the one living and functioning in this shell of what you once were.

So, what’s the best next step forward, and who should you trust to instruct you on that? A therapist, the fractured remains of your brain, or the sentiments of a brain you once knew well as as the big, pink organ living upstairs that you somehow battered, bashed and spun into a battered mess of what it once was. Or, should you now default to the confused and biased heart thumping in your chest? I consider it biased now because it always wants to instill false hope within you that everything will be alright, which is a disconnect between what your brain and the experts around you are all saying. After all, it’s not like you can just pick up the pieces around you and restore the glorified image of what your life and abilities once were. Just how much have you lost, or will you lose? It’s now time to hold on tight to this evolving life of yours and find out over the next however many years it’ll take for you to consider the hellish nightmare over. Can you decide that yourself, or do you need an expert’s decision? I guess that depends on how disabled you are.

Each disability has a name and unfortunately begins to define how you function, whether that’s physically, cognitively, mentally, or emotionally. It’s hard to imagine that all of that could be taken from you in the blink of an eye.

One second, you’re living and thriving in whatever version of life you’ve created for yourself up until that point. Was it everything that you ever dreamed of, or is this now an unrealistic opportunity to reset everything and have a second chance at life? You haven’t gotten younger, or went back in time, but how many people get this rare chance to redefine themselves as a new, “improved” adaptation of who they were and now will be?

Is this a blessing or a curse when you look at it that way? Well, I guess that depends on whether you believe that you have what it takes to restore all of the maligned primary functions that you’ll need to rebuild what was and restore yourself into a new and improved you.

So, how do you assess what needs to recover and return? For some, it’ll be as easy as it was for me to determine this. Can you speak clear enough so that every new person clearly understands you? How about chewing and swallowing everything that enters your mouth? Walk, or equally move both sides of your body?

How about doing everything at home that you once did without any doubt in your now troubled mind? Unfortunately, going to the bathroom and toileting may look different now, depending upon the extent of your disabilities. Heck, you might be a brain injury survivor without any!

Still, are the memories of what happened in the aftermath of your injury, and the label that comes with it, a disability? No, you’re a survivor!

In many cases, brain injury survivors literally avoided death, whether that’s during the incident itself, or in the hospital afterwards.

So, how do you break out of this monotonous cycle of therapy, work at home and work on yourself, whether that’s internal, or work on your weakened or disabled limbs?

There’s a lot that can be said about how much you’ll lose by laying in a hospital bed for however long you’re there. Muscle mass, hope, grasp on reality, abilities, and your past, whether that means a career, relationships, or prospects for a better life that you had once dreamed of.

What will you dream of now? How about getting back on your feet for the big reset of the new life that’s now waiting for you to lead it somewhere new and exciting?

New doesn’t sound so exciting anymore, right? This whole brain injury and the aftermath of it is new! What else is new and exciting out there?

Just think about this golden opportunity to meet others just like you, find out more about yourself, and possibly gain new hobbies and valuable insight along the way. How long is “the way?” Try not to get caught up on that!

It’s different for everyone, and all depends on how much work you’re willing to put in, the amounts of determination and motivation you have, and how you treat yourself during all of that.

Will you accept a down-in-the-dumps version of yourself that swaddles through life now, waiting for the big break that’ll never come without lifting your chin and putting your nose to the grindstone?

So much of your recovery from a brain injury comes down to how you treat yourself afterwards. Are you a friend or foe to yourself?

Imagine that you had just met you. In that situation, how would you treat yourself? Constantly aspire to be that friendly person to the bruised and beatdown you that could really use a kind inner dialogue, both from your brain and heart.

So, what worked best for me? I spent a lot of time with other brain injury survivors wherever I could. For you, that might mean seeking out brain injury support groups, volunteering or participating at organizations that specifically support them. I also highly recommend regularly meeting with a therapist (the psychologist kind) to tackle the barriers that your brain injury mounted in your head as a form of self-defense. They’re difficult to break down or penetrate so that you can move ahead with the necessary next step: acceptance. One of the most difficult things I dealt with during my recovery was learning about and conditioning myself for brain injury acceptance, since it’s now vital to accept that everything has changed, most of it will never return to what it once was, and that you’ll really have to dig deeper than you ever have to return to some semblance of what you once were. Welcome to the new you! Who will it be? Someone you and others around you can admire and hopefully respect!

Blog Post 1 - Introduction

So, here we are. We’re bound by a freak occurrence that you’d never have thought possible for yourself. After all, these kinds of things only happen to idiots, or those that are physically or mentally unhealthy! And that’s not us, right? So, how’d this life-changing catastrophe happen? Did I make a mistake along the way, or is this fate catching up to me? Penance of some sorts? I can’t possibly deserve this! Nobody does! The Internet tells me that worldwide, there are millions out there just like us, but I’m guessing that we are all different, depending on our injuries, backgrounds, beliefs and futures. What does the future hold for me now? Is it within, or outside of my control? Just how much work are you and I willing to put in to right this ship of life that now feels like it’s on the verge of sinking?

This is a blog written, edited and created by a man named Will, survivor of a traumatic brain injury sustained in June 2022. I’m writing this as an outlet for my own thoughts, emotions, and yearning to connect and hopefully help other brain injury survivors like me. I’ve been writing a book with a similar idea, but it’s on page 60+, and I wanted to share my writing with all of you well before I eventually finish and publish that. I also want this blog to be a space where you can read, relate and express how you’re feeling about your own brain injury, should you feel comfortable doing so. If you’re not brain injured, thanks for stopping by, reading, and I hope that you learned something insightful about all of us! You never really know what everyone around you is going through, but I hope that this blog teaches you more about what it’s like to suffer and survive a brain injury. I’m by no means seeking your empathy, but mostly hoping to create and spread awareness and discussion, as I had no idea what a brain injury was or meant until I was unlucky enough to have one of my own. Whoops!

Only you know how much you’ve lost at this point. Is there anything left? It sure doesn’t feel like it, does it? Trust me, as sad as this is to type, there’s always a new bottom below the next one you last hit. One of the hardest parts I dealt with while recovering from a brain injury was the disconnect between my brain and heart. I experienced this most when I struggled to think about whether an emotion or belief that I was feeling originated from my brain or heart. Did my brain still know how to process information and feelings that were being sent to it from my heart? In that case, could I trust my heart? Or, had I also injured that vital relationship between my heart and brain? Nobody ever addressed that subject with me besides the psychologist therapist that I spoke with weekly, and I found his insight absolutely critical. Do you, or have you, sought out a therapist’s services? I can’t recommend it more, considering how traumatic and difficult everything was in the years that followed my injury. What’s the most difficult change facing you that you haven’t overcome yet? Try journaling about it and writing down every challenge that you come across and need to work on or improve. That way, you can return to these notes to inspire you, track your progress, and remind yourself why you’re doing all of this every day. Journaling can be done in a notebook, pad of paper, or a journaling app on your smartphone. The most important thing that you can do is place it somewhere that you won’t forget to do it every day, such as by your bed or on a table that you frequently use, or even better, set yourself a reminder or alarm that’ll remind you to do it. Making a simple note like this every day will help you to chart and track your ongoing difficulties, release any built-up emotions, and serve as a personal reminder of how far you’ve come, which is vital whenever motivation starts to fade, which isn’t your fault. Putting in this amount of effort, sticking to a back-breaking schedule and jumping around from place to place will be mentally and physically exhausting. So, don’t be surprised when you find yourself constantly checking your gas tank and finding that it’s nearly empty, even when you feel inspired, or that you’ve reached the next level in your recovery. So, what’s the best way to refuel, and is it different for everyone? Yes, of course it is! I always found that the best way of motivating and pushing myself even further was to communicate with others like me, brain injured individuals that had all been there and done that. This could be accomplished at therapy, or in brain injury support groups, of which I regularly participated in, as I found that listening to and speaking with others like me about a specific topic about brain injuries or the struggles associated with them with a group moderator present immensely helped my processing of what had, or still would happen to me, and how I could stay one step ahead of myself, as there seemed to always be something unexpected and unforgiving around the corner. Therefore, you’ll have to prepare yourself for how defeating and lethargic any kind of setback can be, especially as you feel like you’ve been through and accomplished so much already. So, find something that works best for you and run with it! What works for someone else in your situation might not work the same for you, as defeating as that can feel. I just hope that reading things like this and taking it to heart will help. Please take notes and try your best to remember and make note of the things that stand out most to you. This is best accomplished by reviewing your daily notes, which ideally should  feature highlights of your recovery and notable insight that you have from reading things like this blog, or thinking about your own injury and ongoing recovery in new and different ways. This journey that you’re now on is long, tenuous and even treacherous, but you must remind yourself that you have what it takes, and that it’s worth living for, in order to summon the courage and will to tackle and overcome anything challenging that life throws your way during this part of it. It sure is quite the detour, isn’t it?

Are there any other lacking connections in your body that you now feel after your brain injury, similar to the brain and heart? Perhaps you feel a disconnect with your past self, which is normal and to be expected. Do you often find yourself missing them? Now, the best thing that you can start working on is accepting that you had a brain injury, and that you now must live with the side effects and trauma resulting from that. A major part of this is letting go of that past version of yourself, as they’re now likely gone forever. Accepting that cruel fact’s going to be the most difficult part of the tiresome journey ahead of you. Still, it’s crucial to find it within yourself to muster up the courage, patience and wisdom necessary to accept that whatever happened to you did happen, is irreversible, and changed the path of your life for good. Dreams and aspirations that you had before will need to be shifted, modified and forgotten, as your abilities and surroundings have likely changed.

Thinking of and planning new goals can be exciting though, even as bleak as that sounds! Will they be oriented around recovery or reshaping your future? After all, this brain injury can be considered as a second chance at life that most don’t get or even try to put upon themselves to pursue! Imagine that perspective on it! This is rebirth is a solid chance to do it all over again, even though you’re still the same age, with the same friends, family and possessions. What will, or can you, do better or different this time around? Depending on your cognition, you may be able to remember what you should and shouldn’t do. Life has a vast series of pitfalls, and this time, you can ensure that you don’t fall into the same ones!

So, what other advice, as a brain injury survivor myself, can I provide about what to expect? Well, this is only my first blog post about this, so please stay tuned and expect plenty more from me in the future about specific topics!

In a way, most of it depends on the extent of your limitations that you’re now facing as a result of your injury. Me? I have a laundry list of disabilities, including physical ones like the inability to walk, difficulty standing up, sitting without slumping over, swallowing food and drink, a communication disability, and visual neglect/deficit/inattention in my left eye, and hemiplegia/hemiparesis on the left side of my body. The reason that the left side of my body was so affected is that my brain injury happened when I hit the right side of my head against the street when I lost my balance and fell off of my electric motorized scooter. The various lobes of my brain that I damaged doing so impacted different parts and abilities of my body that I had grown so used to utilizing in a normal fashion, just like every able-bodied person out there.

I had always dismissed the lack of function on my affected left side as meaningless, as I was naturally a righty, and didn’t remember using my left arm, hand or leg for much before my brain injury. Afterwards, my various physical and occupational therapists were quick to refute this, because it was as goofy as it sounded!

All in all, how are your abilities now compared to what they once were before your own injury?

Can you think of this off the top of your head, or do you need some paper to write this down for comparison?

Speaking of therapists, what kind of therapy do you take now, or require to regain any physical or mental skills that you’ve lost since your brain injury? Did therapy start in the hospital like it did for me? For over three years after my injury, I participated in physical, occupational, speech, and psychological therapy to regain some semblance of who and what I wanted to be. My main driving factor was standing up from my wheelchair and walking away from it for the last time, as I now required it to get around, besides my daily use of a walker, which I was taught to properly use by various physical therapists over the years after my injury.