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 keep thinking about what life was like before the Internet. I know, it’s hard to imagine — especially as I’m writing this (and you’re reading this) online.
The Web has so completely altered how we do things, how we think about things, and what we think about, it’s very difficult to remember what it was like before.
But there was a time before the Internet. I can remember it, however faintly. And I remember how quiet my weekends used to be, when I would spend hours just reading, studying books I had, instead of surfing around online.
I feel very ambivalent about this, to be honest. I do love all the expanded access to research and interesting information that the Web makes possible. At the same time, though, it’s so full of distractions, that I’ve missed a lot of insights about much of the information out there, because something (literally) shinier has popped up in my view before I could digest what I was reading. Online advertising has not done us a whole lot of good, in that respect. And I think that fragmented, flashy way of hijacking our attention is a seriously Bad Thing.
Especially for people like me.
Interestingly, my electronic life has taken a new turn. A few months back, I bought a new-to-me computer for an amazing prize. A new version costs over $3,000, but I got mine (used) for just a little over $300. Score! Yes, it was refurbished, and yes, there were some “dings”. But it works great. It’s fast and powerful and has a huge amount of disk space, so I’ve been able to transfer all my various files in all my various external hard drives to a single place. That, in itself, is progress, because I have a lot of files, and I need to be able to find them without sifting through a bunch of different drives.
The only thing is, the PC doesn’t have a wireless card. And it’s on the other side of the house from my router with the wired connection. So, I can’t get online, unless I lug it downstairs and plug it in.
At first, I was pretty upset. I spend a lot of time online, and I need access for a lot of stuff I do. On the other hand, I’ve been increasingly worried about the effects that online life is having on my state of mind, as well as my body. I spend way too much time sitting in front of of social media, clicking links and entertaining myself, when I should really be doing something productive. I can’t even count all the hours I’ve lost to Facebook, Twitter, and other social media. Even Google News tends to be a time-eater for me.
I’ve been wanting to get away from online life for some time. The thing is, I do a lot of my writing while online (especially here), researching and following leads. That puts me at risk for “squirrel!” syndrome — where I can easily be pulled in by the shiny-flashy lure of some clickbait headline or link. It doesn’t take much, at times, to pull me off-course, and that’s been happening, now, for years.
So much so that many things I’ve intended to do have fallen by the wayside. Because I just got distracted.
That’s about to change. Because my new computer isn’t connected to the internet. Not only am I protected from the prying eyes of people who may mean me harm online, but I’m also shielded from the constant distractions of online life. I’ve been needing to make this change — revert back to my old ways of writing, when it was just me, my ideas, and a keyboard (and yes, I used to use a typewriter, back in the day). Clear out the clutter — the uninvited intrusions that suck away my most precious possession : time, as though they’re entitled to it.
Screw all that. Screw them. They’re not invited. I want my space back, I want my thoughts back. I’ll still be able to write things like this without being online. I’ll still be able to draft these posts and the transfer them to another computer that is connected. I just won’t be constantly distracted by other stuff that has no place in my life and shouldn’t even come anywhere near me.
As much as I love the web and all the connections it gives me, there’s a time to say “enough is enough”.
I’m saying that now and doing the right thing. It was an accident… completely unintentional. But my unconnected computer is totally for the best.
I just checked my stats from the past 30 days, and it looks like word has gotten out about this blog. Or people have been finding their way here. The breakdowns of countries are below – this is just the past 30 days, but the range of countries is pretty extensive.
But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.
So, I help out.
I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.
And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.
But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.
I slow things down, too. The fatigue is just crushing, at times, and when I push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.
On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.
I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.
We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.
Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.
On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.
And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.
But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.
And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.
It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.
It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.
This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.
It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that inTBI S.O.S. –Self Matters To Others. Who people know us to be, is also a big part of who they understand themselvesto be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.
Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.
I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.
As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.
Sometimes the wheels come off. And you just have to figure out how to deal.
Memorial Day. Thank you to all the vets (living and passed on) who have sacrificed so much for us. We literally would not be here without you.
I just wish you had a nicer day, instead of all the rain and cold.
Then again, if you’re like me, you welcome the downtime. And you can use a break from the rest of the world. This is your day. You should enjoy it.
I’m staying off Facebook today. Twitter is another thing, but Facebook has gotten too volatile for me, of late. I need to rest. I need to sleep. Nap. Take it easy. And let my frazzled sympathetic nervous system chill from all the fight-flight. Just chill.
I worked out more strenuously, over the weekend. So, now I’m sore. And that’s good. It means my body needs to rest, and I’m more than happy to do that. I did some balance exercises this morning after riding the exercise bike, just to get myself woken up. I was going to ride a long time on the bike (I had extra dessert last night). But I got tired.
Yeah, I need to rest.
So, that’s what I’m doing. I have a bunch of reading I want to do, and a bit of writing I need to do, as well. Ideas I’ve got going, which I need to continue to develop. The nice thing is, I can just let them develop and not make myself nuts over it all. This is a big change for me, and it hasn’t been an easy one.
For years before I fell in 2004, I had a number of my own businesses going in addition to my 9-to-5 job. I was quite prodigious, I have to say. Always on the go, always cooking something up. And I created some pretty cool products and services that other people really got some use out of. I was part of some pretty exciting ventures over the years, and even though I had a ton of fatigue and sensory issues all the time, I was able to power through them and keep going on the adrenaline alone. It was so exciting, and it was very satisfying to be part of teams working “on the sly” towards common goals.
After I fell in 2004, I couldn’t keep up the pace. I tried. For years, I tried. I really pushed myself to continue to code and be involved in events and ventures. I hatched all kinds of startup plans, and I went so far as to start a formal business for one of them. I had project plans for about 20 different ventures, most of them around selling information and spinning books off into videos and online courses.
But I couldn’t get any traction on them, I’d get confused and discombobulated and turned around… and then frustrated and angry and difficult to live with. So, about 4 years ago, I started backing off on a lot of those things. And I started culling the list of ventures I had planned and waiting in the wings.
It was a hard change, because DOING BIG THINGS was always such a part of my identity and my sense-of-self. And no longer having a full roster made me feel lost and disoriented and un-moored. Like I’d been cut loose from my anchor and set adrift in the big, wide sea.
But you know what? After a while, I realized that it was a huge relief for me to not have all those things constantly “cooking” in the background. And I realized I could actually start to relax. I became less and less reliant on Super-MEGA-PRODUCTIVITY for my sense of well-being and direction, and I actually gave myself a chance to catch up with myself.
It’s taken years for me to feel more comfortable with this — and I have to admit there are times when I revert back to my old over-doing ways. But nowadays, it comes more naturally for me to plan less, rather than more. And in the end, whatever needs to get done, gets done.
Today, though, not much really needs to get done. I’m chilling out. Relaxing. Giving my body and mind time to catch up with themselves. Without pressure. Without agenda. Just so.
My hands have been giving me a lot of trouble, lately. I’ve been writing a lot – typing a lot – on the computer most of my waking hours. And it’s taking a toll.
The only problem is, I have a lot of writing I want to do. I’ve got a handful of projects that are just itching to get done – my Chronic Blogging project being the most pressing, right now. Maybe I’m just being spoiled, or maybe I’m finally getting to a place in my life — and my writing — where I’m really hitting my stride.
The latter, I think. I’ve been struggling with keeping things together for so very long, that just carving out time to write has been rough. And I’ve been foggy and fuzzy for so long, that it’s been a challenge to get the words together in decent order.
Blogging counts… but not exactly. It’s much more stream-of-consciousness, and it doesn’t require me to create a huge amount of structure around my thoughts. I can just get up, do my morning workout, get my breakfast, and then spend an hour writing about whatever comes to mind. It’s not the sort of activity that I have to plan out, structure, and then keep steady with.
Writing extended pieces takes a lot out of me. I tend to get distracted and lose my train of thought / resolve before I’ve completed the extended thought. That’s why I favor blogging – it’s “low-impact” for me, and it lets me mentally ramble more than I can in a structured work. I can also break down individual ideas into bite-sized chunks that are easier for me to digest.
But every now and then, I get a hankerin’ to write something more involved than my daily blog posts — something that demands real commitment, and which will have to do with more than the passing moments of my life.
Which brings me to my Chronic Blogging book-in-progress, and all the stuff that goes along with it. I have to figure out a way to elaborate on some really key points, without blowing out my hands and wrists.
Thus, the speech-to-text functionality of my devices.
I’ve got an iPhone for work, and an Android tablet of my own. The iPhone seems to do a much faster job of transcribing, although the Android tablet seems to be more accurate.
Speed vs. accuracy — the eternal quandary!
Anyway, I’ve been testing both of them out, and this weekend I’ll do some more work on my Chronic Blogging project, dictating rather than typing. I dictated about 1/3 of the book yesterday p.m., and it’ll be good to just plug it all in and edit it, rather than tap-tap-tapping away at the keyboard.
I need to break things up, anyway, and this will be a great way to do it.
The first order of the day is to get your blog properly setup and configured. This is not nearly as difficult as it sounds, and what you do here, can really help you in the long run.
The first I’ll discuss is the basics of setting up your blog to make your life easier. With technology, it’s easier than ever to complicate everything — to the point where you just don’t want to do it, anymore. I’ll keep things simple here. I also won’t cover every single topic I can think of — just the basics you should consider.
There are a lot of great books and websites out there that can offer you in-depth tips and tricks. Use them as much as you can. There are lots of smart people who share really useful info with the world.
In this guide, I’ll talk about using WordPress, because after years of blogging and using different systems like Blogger and Typepad (and some others I can’t recall the names of), WordPress is my favorite for a number of reasons.
It’s stable and well-supported. It’s not just a side project of some folks who needed to do something fun and fulfilling on the weekends (that happens more often than you think). It’s managed by real people who do it for a living. And it’s actively supported. Sometimes they make changes to the interface that drive me nuts, but overall, it’s worth the hassle. There’s a ton of help and documentation about how to different things, but you can do a lot with just a little bit of information. There are many, many themes (designs) that give you a lot of different options, and they are also well supported.
You can do a lot with a little — for free. You can sign up for a free blog and be publishing your work in a matter of minutes. There are a lot of different customizations you can do, but you don’t have to do many at all, to get a functioning blog that looks good. Simplicity is important, if you just want to focus on your writing, instead of configuring your “technical platform”. And it doesn’t need to cost you anything other than your time and attention.
It has a lot of SEO stuff already built in – like “human-readable” urls, correct html, consistent page designs, and the ability to optimize your images so search engines love you. That is so important — I think one of the reasons I rank pretty high in Google, is precisely because I am on WordPress.
You’re automatically connected with a wider community. WordPress has a ton of bloggers on it, and they’re all connected via the Reader feature. You can easily find others on WP who write about the stuff you’re interested in, and they will show you the tags that people are using, so you not only find out who’s writing, but what they’re writing about the most.
They make it really, really easy. Signing up is easy. Setting up is easy. Blogging is easy – and you can also password protect and schedule your posts, if you like. Promoting is easy, too. For example, if you want to tell the world whenever you post to your blog, you can hook up Publicize to post to FB and tweet automatically whenever you publish. That’s important for your wider community.
I could list many, many more reasons why WordPress is my blog platform of choice, but the five above should be enough to convince you to give them a try.
In this section, I’ll talk in some detail about the basic things you want to do for proper setup.
Picking the right theme (design)
Setting up your blog with the most important elements – sidebars, widgets, sharing, and pages
Making your blog readable
Managing publishing, comments, and ongoing discussions
Making sure search engines can find you
You can read the tips and tricks in order, or you can take them piece by piece in whatever order you like. You can skip around and do what you please, and any one of these changes can make a positive difference. We don’t need to “boil the ocean” here – dealing with chronic health conditions is a big enough challenge, let alone adding a regular writing practice to the mix. You can make it as simple or as complicated as you like, but even in its simplest form, a blog can make a positive difference in others’ lives.
Dear blogger – I want to help you become better at what you do.
Especially if you blog about chronic health conditions (spanning mental health to physical conditions), you’re in a great position to help others who share your same situation and concerns. Many folks with chronic health issues are housebound and don’t have a lot of contact with the outside world. Some are isolated by their conditions, and many have lost their social support network because their one-time friends just couldn’t deal with their problems.
You know first-hand what it’s like to be hampered by chronic conditions, so your voice can help others to better understand their world, as well as feel less isolated.
When they first started picking up steam, about 15 years ago, blogs were a novelty. They were something only egomaniacs bothered writing, and only voyeurs bothered reading. They were dismissed by “serious readers”, partly because the medium had not had a chance to mature. But over time, the depth and breadth of blogs written by genuinely good writers, has won over countless readers. And some bloggers share the same regard and influence as well-known journalists – some of them enjoy even more.
I’ve been “chronic blogging” about my ongoing recovery from repeat mild traumatic brain injury (mTBI/concussion) since around 2008, and it has been a long, slow process developing both the blog and a readership. I started out wanting to just help others with information I gathered, as well as sharing my experiences. And there were times when I just didn’t write very much at all. Also, at the start, I was very verbose… rambling… overly emotional… kind of a mess. But some of my readers complained, and I stopped whining constantly.
I wanted to do something really useful, not just vent all the time. And so I changed things up, tried different approaches, and I learned from my mistakes and successes alike. As of this reading, my blog Broken Brain – Brilliant Mind (brokenbrilliant.wordpress.com) has had 433,743 views from 192 different countries. That’s a result of posting nearly every day for the past several years – 2,615 different posts since 2007.
By far, though, the most gratifying thing has been the feedback I’ve received from others. There are a lot of people like me out there, who feel isolated and alone and without access to support. Their feedback has been so welcome, so fantastic, so heart-warming. It’s not always easy to hear people’s accounts of their own difficulties, but knowing I’ve helped ease their pain – even just a little – makes all the effort worthwhile.
It’s still an occasional challenge to keep from whining – and sometimes I don’t manage to suppress it very well. But I’ve found a lot of satisfaction from researching my own health issues and sharing what I find with others, as well as publicizing the work of other brain injury and chronic health challenge bloggers. There really are a lot of great folks doing fantastic work out there – and we can always use another strong voice.
If you’ve ever thought about starting your own blog, or you’ve got one going and you’re looking for ways to increase your exposure and grow your readership, I may be able to help. I have been working with this “web stuff” for 20 years, now, so it’s second nature to me. But it’s not obvious to most folks. SEO, in particular, is shrouded in unnecessary mystery (probably to keep consultants employed), however you’ll probably find that common sense trumps gimmicks every day.
Ultimately, it’s really about building community – reaching out to others who need your help or could use a friendly voice – and making us all stronger in the process. I’ll do my best to provide truly useful tips and tricks, without overwhelming you.
Try doing some of this a little bit at a time, and really give a lot of thought to each piece of the puzzle. It’s a discovery process, and it may take months for things to turn around for you, but I believe that these changes can really help you a lot in your blogging.
If you’ve got something to say about managing a chronic health condition, and you want to help others, by all means, join us with your blog. It’s a lot of work and it takes a lot of dedication and discipline, but it’s also incredibly rewarding.
Yesterday was a low-key day. I had to do a bunch of things at home in the morning, so I was late getting to the office. And then I was up to my eyeballs in crunching data all day long.
One of my coworkers didn’t even know I was there, till they were leaving and walked past my cube. Then we chatted for half an hour about home repairs and the best way to store lawnmowers over the winter. I picked up some good tips that I’ll have to try.
I need a new lawnmower. My current one is 10 years old, and it’s on its last legs. And the next time around, I will do a better job of taking care of the equipment I have, so it lasts more than 10 years.
So, now it’s Tuesday. My week is pretty open, which is nice. It will give me plenty of time to focus on some projects I’ve got going, which need many hours of thought and consideration.
The merger situation is progressing. Still, nobody knows what will be happening. I got a message from one of my old coworkers, asking if I’m still interested in coming back. They are hiring for the position I seek. I told them “perhaps”. And gave them my phone number. We have been missing each other — I didn’t see their message from last week, until yesterday. I hope the situation is still viable.
Then again, maybe I don’t… I left that old job for a reason. It wasn’t the best reason, but it was a reason.
Anyway, we’ll see what happens. I’m in a holding pattern, and it’s annoying me. Then again, it is giving me freedom and leeway to focus on some of my other projects… I’m writing up a short guide for “chronic blogging” – to help other health bloggers reach more people and help folks who are in need of information and support. A few other brain injury bloggers have contacted me for tips, as I’ve enjoyed a bit of success in the space. I’m happy to help — we need all the strong voices we can get. And we need to hear from real people, not just companies selling products.
So, that’s what’s happening this week. I’m looking forward to seeing what happens.