10 Things I Wish Someone Told Me After My TBI(s)

This piece is still as important today as it was when I wrote it earlier this year. It’s absolutely critical that people get the right information right away after a concussion or mild TBI. Understanding the nature of the injury and taking appropriate steps can mean the difference between healing well and prolonging your recovery. I messed everything up, so I paid the price for years, afterwards. In some ways, I still am.

Broken Brain - Brilliant Mind

Top-10 If only I’d known…

Follow the links with each topic to see a extended discussion of each.

These things took me years to learn. Actually, people knew them, but nobody thought to tell me. And the people who knew them, either didn’t tell me right away, or were not within reach of me.

Now, thanks to the interwebs, I’m passing them along. And I’m writing a short guide for people who also need to know this. It’s not long. It will have pictures. It will be basic and (hopefully) easily digestible, so even a “freshly” concussed person can use it.

Here they are:

  1. You’ve had a brain injury. Not once, when I was concussed, did anyone ever tell me that I had a brain injury. Not when I fell, or got hit, or got tackled, or was in a car accident. The idea that my brain was injured — and…

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Sharing: Survivors SPEAK OUT! . . . . . . Rogan Grant – from Surviving Traumatic Brain Injury

Rogan Grant – Brain Injury Survivor

 

1. What is your name? (last name optional)

Rogan Grant

2. Where do you live? (cityand/or state and/or country)

Edinburgh, Scotland

3. On what date did you have your brain injury? At what age?

I acquired my brain injury in 2006. I was 35.

4. How did your brain injury occur?

I was attacked outside a nightclub by some customers I had thrown out of my pub the previous week.

5. When did you (or someone) first realize you had a problem?

I knew something was wrong when I woke up the next day. I was admitted to the hospital and then released the next morning. A friend found me unconscious and in a pool of blood and vomit. I was rushed back to the hospital. A few weeks later when I was released, I thought I was OK, but I kept forgetting things. I set the kitchen on fire three times in one week because I forgot I was cooking. Once I even went to bed and left a full meal cooking. I knew then I needed to be around family “for a week or two, until I cleared my head.”

Read the rest of Rogan’s story at: Survivors SPEAK OUT! . . . . . . Rogan Grant | Surviving Traumatic Brain Injury

Forgetting the Former Things

Such a powerful story – we can draw strength from many, many places. Whether it’s religion or a personal philosophy or just being too stubborn to give up, somehow the human spirit can prevail.

Joyce Hollyday

Twenty years ago today, my friend Tamara Puffer and her husband Michael were driving home from an after-dinner outing for frozen yogurt. When another car slammed into theirs, their lives were profoundly and permanently altered. Tamara spent two weeks in an induced coma, followed by months of rehabilitation, relearning how to walk and speak, read and dress and eat.Tamara

Tamara had recently left her career as a professional violinist and was serving her first church as an ordained Presbyterian pastor. Her theology was deeply shaped by the homeless people she worked with as a volunteer at the Open Door Community in Atlanta. She embraced the Gospel as good news for people on the margins. After her accident, she reflected, “In one life-shattering moment I went from feeling like someone in control—with a clear career path, the privilege of choice, and a measure of power—to being an invisible person on the…

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Que? What? The brain injury is not an excuse

This is a great perspective. I can relate to a lot of things said here. I have to stop and deliberately focus my attention on what people are saying to me, before it makes sense. Sometimes that means I ask them to repeat what they said a number of times. I can get away with it by telling others that I’m busy thinking about other things and I need to change gears. That way, it doesn’t look as much like a deficit.

Most of us have a lot going on inside our heads, to begin with, so people tend to understand that.

Still, I’ve had to “retrain” my spouse to slow down and also not get angry at me when I seem like I’m not listening. I need time to shift my attention and really understand what’s going on. That’s preferable to not bothering to understand at all, and saying “Mmm-hmmm” without even trying.

First of all, the storm never came.

Second, today I read a very interesting article written by another brain injury survivor. In the article she talks about how she was caught off guard when a friend told her to “Quit using your brain injury as an excuse”.  Her friend told her this after she asked her to repeat something.

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Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

Would you $upport this blog?

coins in a canOver the past years, some of my readers have asked if there is a way to support this blog and the work I do here.

I’m committed to sharing the details of my recovery after multiple mild TBIs with those who need hope, inspiration, and basic information about what it’s like to be concussed — and recover successfully afterwords.

It’s something I’m committed to. Is this something you’d be willing to support? I’m looking for ways to do that, but before I start, I want to see if there’s any interest among my 900+ followers.

Would you be willing to contribute something one-time? Monthly? Yearly? How much would you be willing to contribute? This is important work, and support from readers can help me do even more. I’m just not sure what a reasonable amount might be. I’m hoping you can help me out with this.

Whaddaya think? Let me know your thoughts.

Thanks.

Saved from conference call hell… at the very last minute

red vintage phone with rotary dialI just got a notification that my conference call in 15 minutes is cancelled. Glory Be! I really hate conference calls. Especially at 8:00 on a Friday morning. It’s hard for me to hear, sometimes, and I hate having to pay such close attention at the end of the week. I’m wiped out, just running on fumes… and trying to be functional on a phone, this early in the morning is a real task.

But now I don’t have to do it, because the person I’m supposed to talk to has a conflict and can’t find another time till Monday.

Fine with me. Now I can relax and just settle into my work for the day. I have a couple other unavoidable conference calls later today I need to prepare for, and I also have some critical stuff I need to get done by the end of the day today.

I’m so glad it’s Friday. I’ve had a very long week, and I need a break big-time. Last weekend was chock-full of socializing and interacting, and I didn’t have a chance to catch up with myself — or my sleep. I’ve been struggling to keep up with my sleep, getting less than I need. I’ve really been feeling it, so I need to catch up this weekend. Cancel my plans. Just settle in to doing the basics. And give myself some breathing room.

It’s a simple plan with a simple mission. And it works for me.

… onward …

Breakfast with my old friend went well, but now we’ve “gone dark” again

So, breakfast last Friday was good. I enjoyed the talk I had with my old friend, and it didn’t last forever — just an hour. That was enough.

We traded a couple of emails, since then, but they’re definitely off in their own world, again. And I’m in mine.

I suppose that’s fine. The two of us tend to grate on each other’s nerves, if we’re around each other too much. Plus, I like my alone-time.

I haven’t had much of that, lately, though. I’ve been unusually social, with a lot of people checking in with me, and people at work really warming up to me. I’m not sure how I feel about it. I kind of like being by myself, alone with my own thoughts. Being around other people can be very demanding, especially when they’re very different from me, and I have to work hard to keep myself from saying critical things about things that are important to them.

I really have to watch myself, at times.

But it’s worth it in the end, because I don’t alienate everyone in a 10-mile radius. That’s a plus.

I’m really sore this morning, and I didn’t work out. I had an especially vigorous workout yesterday morning, then I changed up my afternoon workout to focus on my core. Now my back and hips and stomach and sides are all crazy-sore, and making any movement reminds me that — hey, there are actual muscles there.

And that’s cool. It’s just not very comfortable, right now.

Work is strange. Everything is heating up with the impending merger, and we’re all scrambling to explain what we do. I think a re-org is imminent. Maybe? Who knows? They keep moving the date for when the thing’s going to be a done deal, so I’ve given up guessing when that will be. It seems like every time I mark it on my calendar, they move it. So, maybe if I don’t mark it on my calendar, the date will stick? Who knows? It’s all such a mystery to me, it might as well be guided by magic and superstition. I’m too far down in the food chain to know much of anything, anyway.

So, whatever. Whenever. However… Onward.

Catching up with an old friend.

picture of neurons with flashes of synapses connectingI’m having breakfast with a friend in a little bit. We’ve been on-and-off friends for close to 20 years, and we come from similar backgrounds. Our families are very similar, and we might even be remotely related, because parts of our families come from the same area. We also have histories of TBI, which makes things interesting.

We first met at a job where we were both contracting. Actually, I was contracting – doing technical work that was on par with my skill level – and they were temping – doing clerical work, which was several grades beneath their ability and education level. They just needed a job to pay the bills. I was the job – it was my life.

There’s always been a disconnect between the two of us. In many ways, we get along, but in other ways, we conflict and grate against each other. Or rather, they grate against me. They strike me at times as being incredibly arrogant and self-satisfied, because of their multiple degrees and their “station” in life as an intellectual and an educator. They have said a number of things to me that I found dismissive of me and my abilities — as though they could see my TBI issues as clear as day, and they judged me for it… while they were blind to their own issues, and they never thought for a moment that they were “off” in some way.

But they clearly are “off” — to an extent that puts off people around them. Like the time when they were recovering from surgery and they needed some help taking their dog to the vet to get checked out. I gave them and their dog a ride, and when I showed up at their condo, they were a disheveled mess. They looked more than a little unwell, but I wasn’t sure what to say to them about it. At times, I’m not great about coming up with commentary, especially when I’m “locked on target” to get a job done. In my mind, I was there to give them a ride and get them to the vet safely, not figure out how they should make themself more presentable. So, off we went, with my friend looking like they were living out of a cardboard box under an overpass.

We went to the vet, and everybody in the waiting room was pretty uncomfortable. It occurred to me that it might be a good idea for them to comb their hair, but then the vet called us in. We got in, got out, and I dropped them back at their place, safe and sound.

The whole time, they seemed to have no idea of anyone else around them having a problem with them.

I learned a while later that they’d sustained a brain injury during their surgery, which would explain a lot. And if I’d been more aware and more on the ball, I might have helped. But I didn’t. They weren’t. And that was that.

I’ve tried to connect with this individual a number of times, but they’re extremely self-absorbed. And I found out a number of years ago, that they sustained a moderate/severe TBI when they were in high school. They got hit by a car while riding their bike, and they ended up in the hospital with a pretty intense brain situation and a part of their life missing.

In many ways, they are a classic brain injury survivor. Rigid, self-absorbed, unaware of themself in how they relate to others, clueless about dressing properly (even when they’re dressed up, they still look a bit bedraggled, as though they don’t know how their body is shaped, so they choose clothes that don’t fit them at all), and they definitely have a slower (sometimes plodding) processing speed.

It can be very uncomfortable for me to interact with them, at times. I think it’s a combination of both of our difficulties intersecting and heightening each others’ shortcomings, as well as them mirroring my own tendencies to be rigid and self-absorbed. It’s hard dealing with someone who’s caught up in themself, when you really want them to pay attention to you😉 And the slower processing speed can be challenging, because I’m slow enough, as it is, so interacting with someone who’s also slow, sometimes drags our conversations to a near-halt.

But I really do appreciate what friendship they do have to offer. And to be quite honest, they’re so clueless about how grating they are, they’re happy and chipper, even when they’re insulting and annoying the crap out of me, so I know it doesn’t happen because they’re mean-spirited or intending to be hurtful. They’re just a little blind to things, that’s all.

And I’m no picnic, myself, to be quite honest. I’m sure they feel the same ways about me at times. So, turnabout is fair play, I suppose.

Anyway, we’re meeting for breakfast in a couple of hours, before I go in to the office. I’m looking forward to it, I have to say. I don’t have a lot of friends whom I’ve known for more than a few years. Not many people know my history – especially about the mild TBIs. And they haven’t seen me go through all the problems with my spouse. This is one person I’ve known since the very beginning of 1997, who I actually have wanted to keep in touch with. We’ve dropped out of each other’s lives for months, even years at a time, and we always come back.

I guess that’s how it is with real friends. I sometimes drift away out of frustration… or they get too busy to bother with me… but then I get over myself… and they remember I’m still around.

And we have breakfast. Talk about this and that. And we take it from there.

The Busy-Not-Busy Balancing Act

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

It’s been a little while since I last blogged here. I’ve actually been increasingly busy at work. No sooner do I start to think, “I’m out of here…” than I get a handful of projects handed to me that are actually really good for my resume. So, I’ll be around long enough to finish them up. Possibly longer. As long as the job is serving my purposes with keeping my skills sharp and my record clean, I’ll keep it.

No need to bolt. Not just yet. Of course, with the merger happening before year-end, anything could happen, but I’m not racing off… not quite yet.

It’s eerie, though, how the more I intended to leave, the more my boss started to “loop me in” to more projects with high visibility. Some days it seems like they’re reading my mind. How do they do that, anyway?

Well, whatever. I’ve been more busy at work, and I’ve been organizing at home. So, I’ve had less time to blog here.

The whole pace of my past six months has been a little strange. It’s either feast or famine. I’m either slammed with a million different things to do, or I’m in a lull, feeling like I’m twiddling my thumbs (sometimes I literally am). Of course, then I feel the need to jump into action and come up with more things to do, so I get myself busy again… and then when the normal incoming tide of to-do items starts to rise again, I have twice as much to handle.

Funny, how that goes.

Well, it’s better than not having anything going on, I suppose. I’m not sure I could have nothing going on, anyway.

It’s really about balance. And also doing a better job of tracking what I’m really working on. Sometimes, when I am “not busy”, I really should be — I’m just forgetting that I’ve got stuff simmering on the back-burner. Or I’ve flat-out forgotten that I’m supposed to be doing something important. Then I scramble to get it together, and I don’t always do a great job of it.

I can’t beat myself up over it, though. I just have to keep steady, and also do a better job of tracking my activities. I’ve started keeping weekly logs of what needs to be done, what I did in the past week, what I need to do next week. I’ve tried a bunch of different systems, but for some reason, they have all bugged the crap out of me. I think this one is good, though. So far, so good.

And I’m reviewing my lists with my neuropsych, which is helpful. I haven’t done this before, because I was embarrassed that I was really struggling. I didn’t feel like I should be, and my old neuropsych was very intent on making sure I didn’t get bogged down in a lot of negative self-talk. So, rather than admit when I was having trouble, I just didn’t talk about it. And I let a lot of stuff slip through the cracks.

No more, though. No more of that. I want to do well. I want to do my best. Even if that means getting over my self-consciousness and sense of impending failure.

It’s all a balancing act — an act of balance. A deliberate choice to balance things out, and a conscious act to do just that.

Yep. For me, it’s a choice.

Onward… together with the help I can find.