I just published Top 10 Things I Wish Someone Told Me After My Concussions in print. You can buy a copy here
My hope is that the word will get out via Amazon – it will eventually be available there, after I get my proof copy and sign off on it. Because TBI/concussion is not only survivable, but there are things we can do that can help our recovery process.
I’ve slightly revised and updated my work 10 Things I Wish They’d Told Me After My Concussion. I’ve also changed the title from “Concussion! Now what?” I think the new title is more clear. Click here to get the free full-size PDF.
I also created an eBook for Kindle and other eReaders (Windows PC/PocketPC, Mac OS, Linux OS, Apple iPhone / iPod Touch, etc.) – it’s $2.99, and if you’d like to support this site, you can download it here.
Additionally, I’ve got a longer book in the works, which has more background and discussion of scientific research and personal experiences behind what I discuss. We’ll see which version is more useful for people 😉 I’ll admit, I’m an anatomy-and-neuro-geek, so the things that fascinate me may not light others’ fires. And since I’m not an official academic, some of my conclusions and discussions might not sound ideal to the advance degree experts who do this stuff for a living.
It’s something, though. And for me, it’s the kind of book I wish I’d had access to, 8 years ago, when I started to realize how much TBI had affected my life. I’m really writing the longer book for myself — the person I once was, who needed help… but couldn’t find it anywhere.
I’ve also been looking for ways that people can support this site. Some have asked what they can do to contribute, but I’m not actually comfortable taking donations. I need to give people something in return for $$$ they contribute, rather than just take their money.
I blog just about every day, and I’ve got nearly 800 followers on WordPress, 111 followers via email, and 955 followers on Twitter, so I’m putting something out there. But even if no one were paying any attention, I’d do it anyway. Because this is my daily “ritual” that helps me check in with myself and keep myself honest. Accepting money for it seems a little wrong to me.
So, I’m starting to publish some of my posts as eBooks (and probably print books, too). I’ll be publishing individual articles, as well as collections — with themes, like anger and memory and sensory issues, as well as most popular posts that people continuously come back to.
It’s also my hope that this publishing can spread more information around about TBI recovery, to show people that it CAN be done — even after years of difficulty and suffering. Even persistent TBI issues can become manageable. They may not disappear 100%, but they can be managed.
I have been looking at my WordPress stats, following up on who has recently followed this blog.
In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.
I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:
Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.
There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself 😉
Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.
I’m not afraid to fail. I just get a little tired of getting back up all the time.
But then, don’t we all…?
I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.
The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.
That happens all too seldom. But I hope it won’t happen here.
So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.
So, I’m downloading the new iTunes so I can update my music on my iPhone (it’s company-issued, and I’d probably not even bother with it if I didn’t have it for work – these things add way more complication to my life than I care to add, myself).
I spent a fair amount of time yesterday collecting music I’ve got scattered in different places into one location on my computer, so I can get to it more easily. I had planned to take care of some work-work tasks, but I used up the time I was intending to spend on getting work-work done, so I didn’t get those handful of little tasks done yesterday. Then I ended up sleeping all afternoon after I got back from my social excursion and errands, which is exactly what I needed. I didn’t reach the goal I’d set for myself, but I don’t care. I needed to sleep. And I needed to take care of myself. So no, I didn’t get those tasks done. Today is another day, and I’ve got another 24 hours till I need to be in the office again.
I got together with my old friends yesterday — the folks I used to hang out with now and then before I fell in 2004. I must admit, I didn’t do a very good job of keeping up with them when I knew them — they were more acquaintances to me — friends of friends who would get together for coffee and just hang out every week or so… in a kind of rolling group. You never knew who was going to be there, or what you were going to talk about. And sometimes the antics got a little obnoxious, so I didn’t get really invested in that “gang”. Ironically, they always thought of me as “one of them”, which I found out yesterday.
After I fell and smacked my head in 2004, I really had no use for anyone, and I withdrew into a cocoon of trying to figure stuff out. Nothing made sense to me, and I couldn’t seem to find any answers. So I isolated. When I started reaching out for help, I stopped isolating so much. I started talking to doctors and then to friends about my situation. Then, when I found out how hard it was to talk to people about TBI, I withdrew again and just tried to keep my act together and figuring things out for myself.
When I found my NP, I found someone I could talk to about my situation, but I still didn’t reach out much to friends. Dealing with my TBI was such a big part of my life, that if someone wasn’t actively involved in some sort of recovery, I didn’t have much to say to them or much reason to interact with them.
Yesterday was quite eye-opening for me, and I think it’s brought a lot of things to light with me. Namely, that before I started seeing the neuropsych, I was pretty insular to begin with, and there were a lot of things that kept me from really interacting with others. I’ve gotten hit on the head so many times over the years that I guess I just got used to keeping to myself and staying quiet so people wouldn’t realize how clueless I was and how long it takes me to catch up. It’s that “Better to keep silent and have people think you a fool, than open your mouth and confirm it” strategy. Which tends to work, because when you’re quiet, people think you know something they don’t. They rarely guess the opposite.
Anyway, yesterday when I got to the meet-up place, there were a bunch of folks there who really welcomed me warmly. It didn’t seem to matter to them that I had been under a rock for all those years. They were still happy to see me. I have definitely changed, since I last saw these folks and I could tell that they could see it also — I have changed for the better, because I’m a hell of a lot more interactive than I ever was before, and I’m a lot more open and involved in discussions than I ever thought I could be. And in the process of being more interactive, I discovered that folks in this loosely affiliated group have been going through all kinds of crap that makes a person wonder if they’re a magnet for hardship.
One has been having food allergy issues and has been having cognitive issues, like forgetting words and losing track of sentences and being wiped out all the time with fatigue.
Another went through a bunch of job changes and is still reeling from the roller-coaster.
Another quit drinking and has been going to AA.
Others have had deaths in their families and are struggling to deal with all sorts of family stuff.
Another is going through a nasty divorce, with their soon-to-be-ex threatening to have them arrested over “any old thing.”
Others are either going through menopause or have gone, and they’re “all over the map” as they describe it.
Interesting bunch of folks, to say the least. So clearly I’m not alone when it comes to having to struggle with a lot of stuff.
I would think, from reading the list of “adventures” above, that this would be a pretty maudlin group who sit around and feel sorry for themselves. On the contrary, it was a pretty good time. We had some good laughs. I said nothing about my TBI, but I did mention the job situation, and a lot of folks could relate. In the process of talking to folks, I realized — even more clearly — that many of my troubles from the past month have been somewhat self-inflicted, coming as much from my wounded pride and frustrations with management and the stress of the short timeframe for such a high profile project, as from any circumstances outside of me. I haven’t made things any easier for myself, and I really got that loud and clear, hearing folks talk about their own situations in passing, and listening to me grouse about mine.
The nice thing was, nobody seemed to judge me for my frustration, and they just kind of nodded when I realized – out loud – that I was just feeling sorry for myself, and I needed to get a grip. And they talked about their own difficulties with a humanity that we could all relate to.
The consensus at the end of our little gathering was that we’re all just human, and that we often don’t make things any easier for ourselves… but we’re works in progress, so we’ll just keep trying. I was really surprised at how together everyone seemed in the face of some pretty heavy stuff. But maybe it was the heaviness that forced everyone to put things in perspective. And maybe it was the extra 8 years or so, since I’d last seen them, that basically grew us up.
What I took away, for myself, was the realization that I’m really not alone, and that I can actually get together with people whose lives are different from mine, but who have the same kinds of challenges and the same degrees of difficulty to deal with. I also saw – right in front of me – that everyone is dealing with something, but that something doesn’t have to be the ONLY thing in your life. And no matter how screwed up things may be, you can often find something redeeming in your experience to share with others. The individual details may not even matter all that much, when it comes down to it. The important thing is to find the common ground we all share — and just be human with each other.
In retrospect, we didn’t really go into a lot of personal detail about things, and the rough patches we tended to gloss over. But we didn’t cover them up. They were just background information behind our conversations about sports and music and our families and our jobs and our pastimes, and what we’d been doing with ourselves lately.
So, it looks like I’ve found a real-life group of folks I can relate to, which is huge. I may get together with them again next week, or I may not. It depends on my schedule, but the important thing is — I know they’re there if I need them. They may turn out to be totally different next week, or the week after, but at least I had a good experience yesterday. It takes the pressure off my working relationship with my NP, because they’re no longer the ONLY real-live person I can talk to about my life and what’s going on in it. I can’t have my NP be my only in-person source of support and feedback. They’re good for some things, but not all things, and I’ve been needing to reach out for years, now. Even before my last TBI, I needed to reach out — on my own — to others, but I just never really did.
Now I have. And it feels pretty damn’ good.
Now, let me restart my computer and resynch my music.
I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.
The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.
All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.
And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…
So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.
Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.
But doesn’t anyone have any attention to spare for TBI folks?
Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.
Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.
An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!