Now you can help me to help others with TBI

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

 

Only the connected survive

On my morning exercise bike ride, I came across a great blog post about rising suicide rates in America and the treatment gaps that may contribute to the sudden rise – http://1boringoldman.com/index.php/2016/04/25/whats-missing-2/. There were some great points made.

There’s a second post following that about how our official approach to mental health problems — develop drug therapies — correlates with less focus on actual treatment beyond a pill. Both of them are good food for thought.

The thing that strikes me is that I’m not surprised.  I have been suicidal a number of times in the course of my life — although I never acted on it. And I know very well the feeling that it’s pointless to go on, because there’s nothing I could ever do to change my circumstances, and nobody really cares, anyway. Personally, I think that if I’d grown up with a mobile device, I probably would have put an end to my suffering many years ago, because even if your device does make you feel connected, it’s doing the exact opposite.

“The one thing we know for sure is that interpersonal isolation is a part of suicidality,” says the author of the blog, and that sounds about right to me. Feeling cut off from your world, unconnected, alienated, adrift, with no direction, no anchor, nothing to give you a sense of where you are in the world… what’s the point of going on? What indeed?

And with traumatic brain injury, that can be a real problem. Because we can lose our sense of our Selves. We can lose all connection with ourselves and who we are. To me, loss of a Sense-Of-Self is a major contributor to suicide risk. Because you’re not just losing your sense of connection to others. You’re losing your sense of connection to yourself. If you can’t feel yourself, how can you feel connected to anyone else?

It’s a problem.

But I didn’t actually start thinking about this post, in terms of suicide. Rather, I was thinking about my work situation, and how isolated I felt myself become in the years after my TBI in 2004. I’ve been thinking a lot about why — after 25+ years in high tech — I feel like an outsider and an amateur at times. It makes no sense. I have a ton of deep experience, and I have the kind of expertise and insights that you can only get from doing what I do for two and a half decades — and longer.

So, why do I have such a skewed vision of myself and my place in my chosen industry?

I believe it’s because of my lack of connection with the larger community. Fatigue is a major challenge for me, as is extreme sensitivity in groups and crowds where a lot of people are talking, and conversations shift and change with the winds. There are a number of tech meetups in a nearby city, but I haven’t got the energy or the inclination to go out and meet people. There was a professional conference just a few weeks ago that I had signed up for, but I was too tired to go.

So, I missed a chance to connect with others and widen my professional circle.

And that’s a real problem. To stay current and “relevant” — as well as find out about decent jobs — I need to get out there, mix and mingle, and get seen.  Talk to people. Connect with my community, my tribe. I’ve been far too isolated for the past 10+ years, and I need to do something about that.

Of course, I’ve been getting myself back on the good foot, and I’ve needed to heal. But now seems like an excellent time to start branching out again, to see what more I can make of my life and my career. That includes branching out in my current job, even though it may not actually be around for much longer. I just need to do more connecting with others. Because like life in general, the more connected you are, the better your chances of survival.

So… onward.

Shared – The Effect of Brain Injury on Caregivers

This is such an important topic — for caregivers, for survivors who rely on them, and for everyone else who interacts with caregivers under stress. It’s also important for employers to know. Or maybe I’m asking too much…?

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

…

Read what Laura says here: The Effect of Brain Injury on Caregivers … and pass it along – share with others

It’s not just women who suffer from isolation after #concussion #TBI

I knew there was a risk of leaning too heavily towards a gendered approach to concussion and TBI treatment with my last piece. It’s very tempting to narrow the focus to one specific group or case, when you’ve got a set of research looking into that. And it’s tempting to focus on subgroups who have been traditionally overlooked.

I do think there’s a lot to be learned from considering special characteristics of people, but that can leave out the needs and circumstances of those who are on the margins of the margins… or those who “don’t belong” in the subgroup, but don’t quite fit in the mainstream.

And so the pendulum swings from one side to the other… Women are marginalized… Let’s put women in the spotlight… And then comes the very human response of folks who feel left out because, well, they are left out, but they also need attention. So, the discussion may end up “pinballing” from one special case and group to another, until everyone feels simultaneously noticed and disregarded.

Funny how that goes.

The thing is — and this is especially true of brain injury — there’s no one silver bullet that’s going to fix it all. Everyone is different, everyone’s experience is different. What works for one, might not work for anyone else. But that way of exception-stymied thinking can stand in our way. I think that’s actually hindered the development of treatment innovations, because the perceived differences and variations between those millions of survivors seem to preclude a consistent, systematized approach to treatment and recovery.

But there is one thing we all have in common after TBI. Brain injury is an assault on your person, as well as your place in society and your community. So, when it happens to you, it happens to everyone. And the folks who are sequestered to heal from their mild TBIs, due to doctors’ orders, drop out of a social circle that depends on their participation to be complete. Unless you live as an island with no social contact at all, that experience is going to be shared with millions of other concussees and TBI survivors.

When a social circle loses a piece of itself, it’s traumatic by its very nature, because the integrity of the group has been compromised. Losing a connection that gave all the members a coherent and durable sense of who they are, represents a loss to all of the members — a group of friends, a clique, a team at work, a sports team, etc. The loss doesn’t just affect the injured party — the whole social circle and all its members have been impacted as well.

When a concussee is a member of a tight-knit team, the sequestration after mild TBI will absolutely contribute to their level of stress. They’ve lost the connections that tell them who they are, that remind them of their identity, which bond them with others who help them through the hard times. You can never, ever overestimate the importance of the team, when it comes to the spirits of everyone who’s a part of it. And you can never, ever underestimate the negative impact of losing that sense of belonging… that sense of self… that happens when you’re suddenly pulled from the center of the group.

So, while their tend-and-befriend impulse may predispose them to affiliating more in times of stress, women aren’t the only ones who take a hit when they lose their connections with others. (And let’s not forget that not all women are equally inclined to bond with others for reassurance and nurturance.) Anyone who relies on the support of a group, who is cut off from that connection, is going to struggle in sequestration.

What does this mean? What does it imply? I’m suggesting that we reconsider the way we respond to concussion / mild TBI in the acute phase (within the first 7-10 days when the brain is righting its impaired metabolism), perhaps exploring ways to actually increase the sense of connectedness and support, rather than limiting it.

One possibility (this occurred to me last night, as I was drifting off to sleep), is the use of therapy dogs (or cats) post-concussion. Therapy animals have been shown to reduce stress and provide companionship to folks who for whatever reason aren’t integrated into the larger community. And service dogs are becoming common with folks after TBI, especially veterans.

For those who can’t take on the care and feeding of an animal full-time — and who may not actually need a service dog — I could see how daily visits from a therapy dog could help reduce the stress and foster a sense of connectedness. I know it’s being done for folks with moderate and severe brain injury, but I think it’s just as valuable for folks with “just” a concussion of “mild” TBI. Especially in those days and weeks immediately after, when everything is so confusing and uncertain…

Animals can offer a special connection that has nothing to do with computers or devices or texting or television or any of the other modern (and medically proscribed) ways we connect with each other. You don’t have to work at a relationship with a therapy animal. But you can interact, get some lovin’, and have the contact you crave with “someone” who isn’t going to judge you or criticize you or make you work at interacting with them.

Another option might be educating members of the social circle about concussion, and fostering regular (limited) contact with real people, in real life. This is going to be more logistically difficult, because everyone is so busy, and with work / game schedules, it can be tough to carve out time. But just having some contact with your social circle is better than nothing at all. One of the big barriers to that happening, is fear and uncertainty and insecurity about brain injury in the wider population. It’s a tough nut to crack, but having some info and guidelines in place might help.

Those are two ideas for maintaining “low-impact” contact with the outside world immediately after concussion. I’m sure there are many more viable options. It’s all an evolving process, and more ideas will emerge over time. There’s lots of opportunity — it’s just a matter of what we’ll do with it.

I certainly hope we do. Because clearly, women aren’t the only ones who suffer after mild TBI and concussion. They may suffer in more specific ways, and the things we do to help may make things worse, but the same could be said for many others.

We’re literally all in this together.

The loneliness of the long-distance TBI survivor

Tonight is a lonely, lonely night for me. I felt it, driving home. I think it’s the change of clocks, the loss of that hour of sunlight, the way my life does not shift along with the time, but I have to adjust myself and my life to fit into that change.

It’s hard.

It feels like everything is dying around me. In truth, the natural world is simply going through its cycles. If I went to Brazil, it would be turning to spring, right now. Maybe, when I am much older, I will migrate south of the Equator, when fall starts to arrive. No more autumns… no more of that. And then I will come back north, when it starts to turn to autumn there.

It’s an idea.

Work is very strange, these days. People are getting attitudes about the merger. It is to be expected. They are also having territorial wars. That is to be expected, as well. My position may be shifted to another group. I was expecting that, to be honest, but I really like my current group, so I’m in no hurry.

I stay later than everyone, because I get in the office later than everyone. Plus, I love the work I do, so it is like play for me. Everything works faster at the office, which is why I am there. I’m happy.

But today I felt lonely. Isolated. Irritated. Like I was falling behind.

I left the office an hour earlier than usual. But driving home, the traffic was terrible. That’s why I leave an hour later than most people. I miss the traffic. It’s better that way.

And while driving home, I was overcome by this intense sense of isolation. Like the whole of life was passing me by, and I didn’t have any meaningful connections with anyone I really felt like I could get along with. Even my neuropsych, whom I have been seeing for 5 or 6 years, doesn’t seem like someone I’d get along with outside of the sessions we have. I just talk to them for an hour, once a week. That’s it. One hour out of 24… one day out of 7. That’s not very much at all.

Plus, that hour with them doesn’t seem to make much of a difference, when it comes to the difficult things in my life. In terms of discussing my work, it’s great. They are very helpful with professional subjects. They support me in ways that nobody else I know can, or does. But when it comes to my personal experience of everything just sucking so terribly, the depression, the upsets, the disconnects, the meltdowns, the confusion, the malaise, the sensory issues… they are really no help at all. They’re worse than no help. They actually hold me back from understanding what’s going on inside. They minimize my experience, dismiss my concerns, and tell me I’m just taking the wrong attitude. I’m fine. My faculties are fine. I’m exaggerating. Again.

If I gave it a lot of thought, I’d blow up. But usually when I meet with them, I am so wiped out from a long day’s work, I haven’t got the energy to fight. So, I leave it alone.

I talk about work. And everything gets better.

Tonight on my way home, I took a detour around the traffic jam through a town where a former friend and I used to meet for breakfast. We had an on-again-off-again friendship, and they did not treat me very well, a lot of the time.But we had some things in common, so I overlooked it.

Until I couldn’t anymore. They were just so obnoxious, sometimes, telling me how much smarter and better educated they were, than I was/am. I wrote them an email saying I couldn’t have anything to do with them unless they treated me better. They answered. But I did not have the courage to read their reply. Years passed before we had contact again. Then we were back in touch for a few months. They had a brain injury from surgery that they went through, and maybe that’s why they treated me badly. I could look past that.

Then they disappeared.

I don’t know what happened to them. I think I will email them now, to see if they are still around.

Done.

Anyway, I think I’m just very tired from this week. That always puts me in a funk. And I have been working very hard, so of course my brain is tired. And when my brain is tired, nothing seems very good.

At all.

So, I’m feeling lonely. Isolated. I have no energy to go out and get connected with live people. This is why TBI is so isolating. We barely have energy for ourselves, let alone socializing. Maybe a solution would be to have all the people with TBI live in a community where we could just hang out… and when we’re tired, we just get up and go back to bed.

Wouldn’t that be amazing. To just go back to bed whenever I’m tired. Impossibly amazing.

But I’m not holding my breath.

People at work tell me to go home. Don’t stay so late. I have done contract work for so long, I’m used to putting in my hours, no matter what. Pushing through. Getting my hours in. Topping off the clock. But nobody else seems to care about that.

So, I left early tonight.

And I got stuck in traffic.

And I felt terrible, all the while.

Maybe I’m a workaholic. That would not surprise me. My work, though, is the one thing that makes my life meaningful and pleasant. It’s a pleasure for me to work. Why would I not? I have no kids. No energy for that. Work fills a need that most people fill with socializing or drinking or drugs. Or their families.

Me? I have my work.

Tomorrow I paint some more.

And then it’s Sunday. And I am OFF. I think. I have some things I need to get done, in order for that to be true. No, I’m not off on Sunday. I have chores to do. Yardwork.

So, I guess I’ll do my virtual vacation thing — where I just decide to let the world go pound sand, and I don’t care about anything or anyone. On purpose. I’m not being mean. I’m just going on a mental vacation.

Because it is lonely. And I feel alone.

And I need a break. From people. From everyone. From it all.

My computer is brain-injured, too

I’m not the only one having troubles, these days…

Yesterday, when I tried to work on my computer, it was much slower than I expected it to be. It seemed really sluggish and took forever to respond (“forever” meaning a second longer than I’m accustomed to). And it kept having to stop to download patches and updates from the anti-virus program I have.

It was so frustrating. Its processing speed was so much slower than I wanted it to be, and no matter what I did, it couldn’t seem to go faster.

How frustrating! It’s bad enough that I have to deal with my own brain-injured system, which is so much slower to respond than I want it to be. It’s bad enough that I myself have to keep stopping to check in with myself and “download” more information about the world around me, so I can get my act together to take the next step. It’s bad enough that I’m so sensitive to fatigue and excitement and, well, life, and that I can’t seem to participate at the level I want to, except occasionally.

But my computer? Now I can’t depend on it, either?

Arrrrgghhh!

I try to be patient, I try to extend my laptop the same consideration I extend to myself, but it’s pretty frustrating. I’m very careful about what I download and install on my machine, and I do cleanup pretty frequently, removing files and then fixing the disk, compressing, and defragging. All in all, I’ve kept this machine going a lot longer than most people do. I’m very frugal with my resources, and I take care of what I have.

So, when nature takes its course and things start to break down a bit, here and there, and I start to think about spending extra money and time on new (to me) equipment, I get nervous. Because I remember all too vividly what it’s like to be in hock, to be so far in debt that my whole live is an exercise in indentured servitude.

I really don’t want to have to spend any more money than I have to.

But it’s not just the money that gets me. It’s the reminder of how things are sooooo sloooooowwww for me, sometimes. I tried to get some more work done last night, after I made myself some dinner, but I couldn’t get myself in gear to make any progress. It’s just as well. I needed to take a break, do some reading, and let everything just kind of sink in. Plus, the book I’m reading is pretty interesting, and it really held my attention all night, till I couldn’t concentrate anymore. But still. I want to be able to do the things I used to be able to.

Once upon a time, I could spend every waking hour of Saturdays and Sundays working on my research projects, and come away with some really great insights. Once upon a time, I could study for hours, learning new computer skills, and be more proficient on Monday morning than I was on Friday afternoon. Now, I consider myself lucky to get to Monday without being more exhausted than I was Friday afternoon.

I had kind of expected things to get better for me, as my recovery progresses. Things are getting better in some respects:

• I can read again
• I can hold conversations with people
• I can keep from blowing up over little things that don’t matter
• I can recognize when I’m going off the rails and take steps to get myself back in line

But the fatigue and the confusion and the sense of “WTF?!” that has me always wondering, What Just Happened?… that hasn’t really subsided. If anything, it’s worse. Perhaps because I’m more aware of it. Being able to recognize when I’m going off the rails, means I’m more aware of my “deviations” from what I consider the norm for myself. And I have to tell you, it is truly bizarre, to be living life inside my experience, which doesn’t look, sound, or feel anything like what I expect it to.

The one constant through my recovery has been my laptop. My computer, which is now struggling to keep up. Having that go on the fritz is making me all the more aware of my human frailty and vulnerability, and I don’t care for this experience.

I don’t care for it at all.

But here it is. There’s no escaping it, and I suppose the best I can do is just acclimate to the “new me” and get over it. Quit bitching and complaining, suck it up, and just deal with it. People go through losses all the time — friends, family, marriages, homes, jobs, mental and physical abilities, body parts, even their sanity. I’m not unique in this respect. I’ve lost touch with the person I feel like I am, and I miss them. I miss feeling like I know who I am and where I fit. I miss feeling a sense of orientation to life around me. I miss feeling like I know what will happen in my head next. I miss it. Sometimes it’s there, but then when I expect it to be there, it’s nowhere to be found. And I’m adrift again, making it up as I go, doing my best under the circumstances, just happy to be alive and healthy.

I do feel a little foolish, being so bent out of shape about losing my sense of self, but there it is. A lot of us go through it, especially brain-injured folks, but I don’t know about anyone else. Not really. And for me it feels so intense today. Part of the problem was that I really isolated yesterday at home. I didn’t get out much, and although I talked to my parents a couple of times, I didn’t have any live interactions with people. If anything, I avoided them. Because I was tired, and I just wanted to be alone to think.

Someone recently commented here that socialization is a huge piece of TBI recovery, and I totally agree. I didn’t think it was so, but it is. Socializing both challenges us and rewards us. It gives us a chance to interact and acquire new skills. It forces us to think on our feet and make an effort. But when you’re struggling with TBI, socializing can seem like too big a task to undertake.

I know it did for me, yesterday. Everything just felt like such a chore, such a drain. I didn’t want to go out, I didn’t want to talk to anyone, I didn’t want to have anything to do with anyone. I was tired. I was feeling overwhelmed. I was not up for the added work that interacting with others brings.

I just wanted my computer to keep me company.

But it’s brain-damaged, and it was struggling almost as much as me, yesterday. So, there we were, the two of us, muddling through.

Today looks like another beautiful day, and I’ll have to get out for a walk. My water softener seems to be on the fritz, so I’ve re-cycled it, and I’ll go out and get more potassium chloride later. Potassium chloride is better for me than sodium chloride, because the treated water is a little harder, it doesn’t get “soapy” and slick, and it also doesn’t create that rotten egg smell that you can get from sodium chloride. It costs a few extra dollars per bag, but so what? Over the long term it’s more expensive, but it’s worth it to me.

I’ll do the few things I need to do today, make sure I rest up, and really take it easy. I’m still wiped out from last weekend. I’m not sure when I’m going to catch up on my sleep and feel truly rested again. But at least I can enjoy myself at some of the things I do. And I’m already looking forward to that nap.

For now… onward.

Getting connected again

People are funny. We’re so social. And when we feel like we’ve been cut off from our social group, it can make us crazy.

I’ve been having that sort of experience this week. My team members have either been traveling, or they’ve been in a lot of meetings, and there is a lot of discussion and politicking going on behind the scenes that affects me, but I don’t know about.

I’ve also been slammed with everyday busy-work that’s been consuming all my time and energy – I’ve been ‘in the weeds’ and it’s been making me nuts.  I’ve been very productive and I’ve gotten a lot done, but it’s been really tiring. And when I get tired, I isolate, which is not good.

Yesterday I managed to reconnect with a coworker who has been a little nuts, lately. They’ve pissed me off, and I have been keeping them at arm’s length. But that’s not making me feel any better, so I put aside my aggravation and I’m not pushing them away anymore.

It’s made things easier at work. And it’s also saved me a ton of time and energy that I was using up being pissed off at them and keeping them at arm’s distance.

Forgiveness and generosity of spirit are so much less work, actually. So, I’m letting those set the tone for my work with people. And that seems to be helping a lot.

I’ve also been taking breaks during my day — first thing in the morning after I get up, I sit and just breathe for a few minutes… during the day I’ll stop and step away to also just sit and breathe… and in the evening before I go to sleep, I’ll spend a few minutes just sitting and breathing. It calms me down and it settles my mind.

Which is exactly what I want and need.

And now the day is waiting.

Onward.

The loneliness of PCS

Recovery can be a lonely experience

I’ve been spending some time over at the Neurotalk – Traumatic Brain Injury and Post Concussion Syndrome forum at PsychCentral, and it never ceases to amaze me, how hard it can be to find help after concussion or TBI. Especially for kids who are concussed in high school sports, this is a tough one. So much of your identity can be wrapped up in being an athlete, being part of a team, playing your role in a specific way that clearly tells you whether you have succeeded or not. Sports are a great way for kids to gain confidence, find a place where they “belong”, and teach them important skills for working with others.

But take that away, thanks to concussion, and you’ve got problems. They can cut so deep that you can end up intensely depressed, even suicidal, and turning to drugs and/or alcohol to numb the pain and dull the confusion.

Here’s what I wrote in response to a parent to talked about their son’s slide into depression:

As a former high school athlete, I experienced a number of concussions, none of which were diagnosed, but in retrospect, they were definite mild traumatic brain injuries. My senior year in high school, after sustaining several concussions over the past years, I was unable to compete as part of the team I had been captain of, for two years running. I just couldn’t do it. Thinking back, it’s clear to me that my PCS had gotten the better of me — I was un-coordinated, I had trouble concentrating, I was emotionally volatile and explosive, and I was getting into trouble at work and at school. So, I took myself out of my favorite and best sport, that fall, and I really suffered as a result.

In retrospect, it was good that I “sat it out”, but it was really painful and depressing, and I spent a lot of time drinking and taking drugs to cover up the pain.

One of the things that makes concussion recovery so hard for high school athletes is that so much of their/our identity comes from being part of a team and playing with the team. The isolation of losing that and needing to recover (as well as the judgment from other kids that you’re “faking it” or making more of it than need be), can be extremely difficult and depressing in itself. Add to that the loss of identity that comes when you are no longer a team member, and that’s a double-whammy. With all the talk about recovery from concussion, it surprises me there is not more talk about the loss that comes from being cut out of sports just like that.

It really can be a crippling loss. It’s not just the PCS, it’s like losing a limb. You lose one of the biggest and most important parts of your identity.

… Unless you can replace that sense of belonging to a team with something that’s safer and has actual meaning, that will continue to be a dark void in his life. For players of team sports, especially, being able to transcend your individuality for the sake of the greater good, is critical, so focusing all your attention on your own recovery goes directly against that deeply felt value system — and that’s a problem.

I really wish this were talked about more. Concussion management isn’t just about managing the conditions that come with a mild traumatic brain injury – it’s also about managing expectations and working with the identity of the individual involved. In one fell swoop, the things that made your life worth living — a clearly defined role in a group of kindred spirits, regular exercise (which is good for the mood anyway), structure, direction from coaches and the rules of the game, and the ability to publicly achieve something and gain recognition — that’s all taken away.

And nobody seems to think that’s a problem that needs to be addressed… at least, not from what I’ve seen in the sports concussion literature.

Concussion can be a tough one, especially with youth, because so much is changing with them all the time, and it’s hard to know if they’re suffering from PCS, or if they’re just being teenagers. It’s hard to know what the deal really is, and so much can be amplified, just because they are teenagers. They don’t have the long-term view to put things into larger perspective, they don’t have the life experience to tell them there IS life after sports, and everything feels so intense.

In many ways, I think the situation with concussed athletes also relates to that of veterans with TBI, who are also removed from their respective teams and have the things that made their lives worth living, simply taken away because of brain injury.

Recovering from TBI can be a terribly lonely thing, even if you do have a regular job and friends and family around you. But remove all those things, and it can really turn into hell.

So, what do we do and were do we go from there?

I’m not sure. I think that connecting with people online can be a huge help, especially for folks who don’t have a lot of mobility and can’t be up and around. There’s really nothing like face-to-face contact to help, but for many of us — including me — that tends to be limited due to fatigue, sensitivities to light and noise (and sometimes touch), and difficulties with hearing and speaking and other communication, which isolate us in the midst of others. For me, the effort required to interact with people at my day job pretty much exhausts me, so I don’t have much left for extra-curricular activities. On the weekends, I just want to hide myself away and be left alone.

In any case, it’s lonely. It’s tiring. It’s frustrating. And these things add stress to our systems, which actually makes it harder for us to recover. It can become a vicious circle that turns our deepest fears into a self-fulfilling prophecy.

But at the very core of it all, we need to find ways to make peace with where we are at — and also learn to self-regulate. Knowing that concussion recovery can be isolating and lonely, allows us to take steps to avoid that becoming a problem in itself. And actually, having some time to yourself can be a really valuable opportunity to get to know yourself and learn skills at self-regulation that you wouldn’t normally get, were you in the midst of all your friends and teammates, 18 hours a day.

The world we live in right now is an extremely social one. Social media. Social sharing. Social this, social that… I worry that today’s young people are not learning how to think and act independently, and they’re missing that important piece of becoming a whole human being, in the process.

Taking time away from all of the social interaction to recover from concussion need not be a bad thing. Being alone doesn’t have to mean you’re lonely. It can mean you’ve got time and space to listen to what’s going on inside you, and get clear on what you want for your life… not just the latest distractions from the crowd.

Far from being the worst thing that ever happened to you, taking a break from the crowd might turn out to be a good thing, after all.

Onward.

Getting my music together

Get up... get down.

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.

Onward.

Doing to be

I got home late last night. “Late” being nearly 10 p.m. on a work night. Greeted like a returning hero of sorts.

I was back.

I did it.

Part of me thinks this shouldn’t be such a big deal, and a week-long business trip to an industry conference shouldn’t elicit praise and celebration. But part of me also knows that I did good work on this trip, I made good connections, and I made a positive difference in the world, in however small a way.

I was courteous to my colleagues in the convention center. I was kind to the poor on the streets. I was considerate of the hospitality staff, wherever I went. And I actually convinced professional peers who have been afraid of the folks in my department, that we are here to help, and their opinion matters.

I met with wary almost-strangers, and parted ways with new friends.

Actually, come to think of it, I think this should elicit praise and celebration.

Gandhi and Mother Teresa might have done more. Albert Schweitzer and Dorothy Day probably would have done more. But for where I was, and what I did, I did alright.

Best of all, I did no harm. Which is a far sight more than many people do. And I looked people in the eye when they talked to me. Unless, of course, they were culturally uncomfortable with that. In that case, I looked away. Didn’t intrude. Either way, it was fine.

Thinking back, I will say that I had some very dark hours, on that trip. There I was, 2000 miles from home, sleeping in a very uncomfortable bed, off my daily routine, surrounded by people who all seemed to know each other, some of whom couldn’t be bothered to give me the time of day and actually ditched me several times. Assholes. And they sit right across the hall from me at work.

What the hell was I doing there? I asked myself more than once, at the end of long days, when the fatigue caught up with me and I couldn’t muster enough mojo to feel much of anything about anything other than dread and depression. Start of the day –> mucho moxie. End of the day –> zip, nada, zilch. It’s a rough, rough ride, going from way-way up to way-way down in the space of 18 hours, with your joints aching and screaming, your lower back in knots, your neck and shoulders a mass of tender ropes, your head pounding non-stop… And doing it four nights running.

So, I did the only thing I could — I went out for long walks after convention hours, then went back to my room and drew a hot bath and soaked till the pain was eased, and I could sleep.

In those minutes, as I was debating whether to numb my pain with Advil or get my mind off it with a walk… fighting off that gut-wrenching loneliness that comes from talking to your Beloved (or a good friend) and hearing their voice and knowing they are a looooong plane ride away, and as good as their voice sounds, it’s nothing like having them There Beside You… god, that hurts.

But then the thought came to me that this was a valuable experience to have. For as painful and as awkward as things were for me, I was probably not alone. I was at a conference filled with thousands of people who were also far from home, and many of them may have felt exactly the same way — all by their lonesome in a strange place, without the ones they loved nearby. And there were the ones from other countries and other cultures, speaking a different language and eating different foods and interacting in ways other than what they were used to… for them it must have been even harder.

And so I used it. I used that feeling, that pain, that anguish. I “sat in it” as my therapist friends like to describe it. I marinated in it. I didn’t turn on the television, I didn’t listen to my iPod. I just sat with it and felt it and knew it was real… and knew that there were countless other people in the world around me who were feeling very much like me, right at that same moment.

And I took that feeling, that sense, that experience, and I did something with it. I carried it with me, as I went out into the world, attending sessions at this conference, meeting people and talking with them — both officially and just by-the-by. I took that sense of loneliness, that isolation, and I acted as though each person I ran into felt exactly that same way. And when I caught their eye – or they caught mine – my suspicions were confirmed. And they appreciated the smile. Or the handshake. Or the nod.

See, here’s the thing for me… I’ve got my issues. Who doesn’t? But when I take those issues, those pains, those sorrows, and I do something with them, they completely transform my experience. They turn me from a lonely heart looking for love in all the wrong places, to a human being offering other lonely hearts the kind of compassion and human connection you can’t often get in this techno-virtual world, where the most contact some people have with the rest of the world comes from a few hours spent on Facebook.

And as I simply went through the motions of being courteous and kind and considerate to everyone I met, doing the same sorts of things over and over — holding a door open, nodding hello, smiling and giving someone’s hand a firm shake — I felt like I was coming back to myself. Instead of staying lost in the malaise of my own isolation, when I put the focus on someone and something other than my own insecurity and loneliness, I found the isolation lifting, dissipating, fading to the background. It was always there, but it almost didn’t matter — except for the fact that it made me more aware of the isolation that others were probably feeling, every bit as much as myself.

And in that doing, I became something other than what I was in the silence of my hotel room. In that doing, I found a sort of redemption — not only for me, but for those others, as well. Perhaps even for the others whom those others encountered later on each day. Doing my part to not let my insecurity and self-consciousness get the better of me, turned me into a ‘pebble ambassador’ of sorts — toss me in the human pond and see what happens to the ripples.

The more I did it, the better I felt. And by the time I left, the anxiety and fear and self-conscious insecurity and loneliness had all but gone away. They were always there in the background, sure, but it almost didn’t matter… except to remind me how the rest of the world just might have been feeling — and perhaps even moreso than me.

 

I’m fading, now. Fading fast. Time to sleep. I’ve earned it.