The loneliness of the long-distance TBI survivor

lonelyTonight 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.

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Helping our troops during the holidays

Our troops helped us, now let’s help them

The food has been eaten, everyone has returned home, and the weekend awaits. For those who thrive on social activity, being alone after being with so many loved ones can be difficult.

Looking for a way to get out of your post-Thanksgiving funk?

Send a card to a service member. The Red Cross is having a Holiday Mail for Heroes campaign – get details at http://www.redcross.org/support/get-involved/holiday-mail-for-heroes – for folks to write cards to service members to wish them all the best for the holidays.

Each year the American Red Cross provides assistance to more than 2 million service members and many of our nation’s 24 million veterans. We support military families, military and veterans hospitals and provide emergency communications across the globe. And once a year, we get the joy of delivering holiday greetings to veterans, military families and active-duty service members at hospitals and installations around the world.

The cards and personal messages, sent by tens of thousands of Americans, provide a welcome “touch of home” for our troops during the holiday season.

Send a Card

Each year we collect cards between October and early December and then distribute them at military installations, veterans hospitals, and in other locations.

There are several ways to be part of the Holiday Mail for Heroes program. In addition to sending cards on your own, you may want to start making plans to host card signing parties or card making parties. Here are a few guidelines to help you on your way:

Card Guidelines:

Every card received will be screened for hazardous materials and then reviewed by Red Cross volunteers working around the country.

Please observe the following guidelines to ensure a quick reviewing process:

  • Ensure that all cards are signed.
  • Use generic salutations such as “Dear Service Member.” Cards addressed to specific individuals can not be delivered through this program.
  • Only cards are being accepted. Do not send or include letters.
  • Do not include email or home addresses on the cards: the program is not meant to foster pen pal relationships.
  • Do not include inserts of any kind, including photos: these items will be removed during the reviewing process.
  • Please refrain from choosing cards with glitter or using loose glitter as it can aggravate health issues of ill and injured warriors.
  • If you are mailing a large quantity of cards, please bundle them and place them in large mailing envelopes or flat rate postal shipping boxes. Each card does not need its own envelope, as envelopes will be removed from all cards before distribution.

All holiday greetings should be addressed and sent to:

Holiday Mail for Heroes
P.O. Box 5456
Capitol Heights, MD 20791-5456

The deadline for having cards to the P.O. Box is December 6th.
Holiday cards received after this date cannot be guaranteed delivery.

I’ve dug up a big box of old Christmas cards that, for one reason or another, I could not use in the past. Some of the messages don’t work for my family and friends, and some of them are extras I couldn’t use. I’m going to start writing out cards this weekend, while I have some extra time. And then I’ll send them all out in a big batch next week.

It’s a start. I can also pick up those big batches of cards that are mixed collections, and send them along as well. I’ve got almost 80 cards I can use right now — I have to pace myself, because my hand cramps up, but I should be able to make good progress by December 6th.

This is a great way for me to get out of my head and think of others during what can be a very difficult time — especially if you’re laid up in the hospital and you’ve had your career cut short by a terrible event.

Being cut off from the ones you care about most — your family, your brothers/sisters in arms, your “tribe” of choice — can feel like the hardest thing in the world during the holidays.

So, reach out and send a card to someone who needs your help and encouragement. Heaven knows, there are many, many folks like that out there.

Okay, enough about me. It’s time to write some cards.

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.

What I’ve left behind

Somewhere, someone cares about your loss

I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.

I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.

In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.

But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.

Am I being vague? Here are some examples of choices by loved-ones that depress me:

  • Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
  • Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
  • Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
  • Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
  • Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.

I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.

Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.

So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.

So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.

But no, it didn’t happen that way. And I am bereft.

This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.

Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.

But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.

When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.

When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).

When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.

And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.

This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.

As I believe I once was.

See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.

I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.

Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.

Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.

Loss. Lonely, lonely loss.

But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.

The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.

The next thing I do, is understand what it is that I am mourning the loss of.

I recently realized that I can group my losses into two different categories:

  • Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
    • false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
    • possessions that other people told me mattered, but I just didn’t care about
    • 100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
    • public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation
  • Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
    • being able to read things and understand them immediately
    • constant abundant energy
    • clear, quick thinking and definite decisions
    • my ability to earn top dollar almost without thinking about it
    • my ability to learn new things quickly and use what I learned quickly
    • confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)

In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.

Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?

But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.

Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.

And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.

Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.

Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.

Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how I once was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.

Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.

I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.

That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.

Onward. To the future.

Learning to do it anyway

Sometimes it feels like the weight of the world…

Woke up this morning feeling sick – headache, sick on my stomach, foggy… Going back to work tomorrow probably isn’t helping any, but life goes on. There it is.

I’m pretty much in the Emotions/Moods “section” of those 84 ways TBI can make your life really interesting

Emotions/Moods

8. Agitated, can’t settle down – I’m all wound up and can’t seem to get myself to chill to get to bed at a decent hour each night. I’m way agitated, and fidgety and am having trouble focusing in to get shit done.
9. Angerrrrrr!!! – I’m pissed off. At work. At my spouse. At myself. I’m just angry. It’s driving me — it’s driving me crazy.
10. Anxiety – Feeling vague fear, worry, anticipation of doom – Yeah, when I go back to work tomorrow, I have the feeling that I’m going to be so totally screwed by my workload and the “lost week+” that I’ve had away. Not that it’s any different than it’s been for the past year or so, but now the sense of doom is really coming in.
11. Depression, feeling down – My mood has actually been pretty good… but I have to really fight back the depression. It sets in quickly if I don’t stay on it.
12. Excitability! – I get all worked up over stuff, then I come back to it later and I can’t see what all the excitement was about. The worst thing about the excitability is that it distracts me and takes me off-course, so it takes me longer to get where I’m going.
13. Everything feels like an effort – Yeah, pretty much. It feels like everything is a massive effort, and I can’t figure out where to start.
14. Feeling unsure of yourself – Yeah, pretty much all the time, these days. I know better (rationally) and I fight it back, but that feeling is always there… like I never know what’s going to come out of my mouth or what I’m going to do next. Sometimes I get it right, sometimes I don’t, but I’m never 100% sure what’s going to happen.
15. Feelings of dread – Yeah, that. Dread and anxiety. Like I just can’t deal with sh*t.
16. Feeling like you’re observing yourself from afar – This is a weird one, because it’s really like that. It’s like I’m standing at a distance and watching myself do and say things that don’t make any sense to me.
17. Feelings of well-being – On and off. It’s not all bad, all the time. Sometimes I have these sudden rushes of feeling really good, really solid, really sound. It’s a nice break.
18. Feeling guilty – Guilty over what I’ve done and what I haven’t done… what I should have done, what I forgot to do.
19. Feeling hostile towards others – Yeah, this is a tough one. I’m not feeling that great today, and we have a friend staying over, and I have to watch myself to not come across as hostile and aggressive, because they’re pretty sensitive and have a hard time making and keeping friends, as it is. My hostility has nothing to do with them, but they could easily become a target, if I don’t manage this.
20. Impatience – Yeah – what’s taking everything so long?
21. Irritability – Like the hostility, I’ve gotta keep a handle on this. Others shouldn’t have to pay for my issues. It has nothing to do with them.
22. No desire to talk or  move – This one set in when I woke up, and it’s still there. The antidote? Get the hell up and do something. Anything. Just move, goddammit.
23. Feeling lonely – Yeah. That. The consolation I get is that I’m not alone in feeling lonely. Plenty of people do. I also need to focus on the fact of what I’ve got in common with others, and that helps.
24. Nervousness – Nervous about work, nervous about money, nervous about life. Nervous.
25. Feelings of panic – On and off. This is much less extreme than it was several years ago. I’ve learned how to relax. I’ve learned how to recognize the signs that I’m just panicking, and it has nothing to do with actual reality. Breathing helps.
26. Rapid mood swings – Yeah, gotta watch that. I’m sick and tired today, so I know I’m more susceptible.
27. Restlessness – I want to run, I want to walk, I want to jump in the car and drive away. I want to go out and pick a fight. Not my best ideas… and I know it’s just the fatigue, the fogginess, the feeling of being “off” that’s doing this. Adrenaline and novelty blocks out all the distracting what-not-ness that’s swirling in my head. Surely, doing something extreme will take my mind off it. Well, sure – but at what cost?
28. Tearfulness, crying spells – Not so far, which is good. A few days ago, when I was feeling really sick, I had this. Thankfully it passed. Of all the TBI issues that come up, the tearfulness is the worst for me.
29. Feeling tense – Yeah. That. Like I’m wound so tight, I’m either going to snap, or I’m going to shoot straight to the moon. Tense. Really Tense. Black Flag Tense.
30. Feeling vague longing/yearning – Absolutely – for something I want and need, but can’t quite put my finger on. I used to have an antidote for this: daily meditation and breathing. Then I got sick of it and stopped doing it, because I just wanted to get on with my days with out having a lot of ritual and sh*t to do, first thing in the morning.

And as a result of these things, I’m also grappling with the follwing:

Day-to-Day Activities
31. Being overly busy (more than usual) – I’ve got all this stuff I want to do, and it’s piling up. I’m making myself crazy with it.
32. Feeling like you can’t get moving, you’re stuck – And under this pile of stuff, there I am, pinned down and feeling like I can’t move.
33. Feeling like you can’t get anything done – It’s just a feeling, I know, but that’s how I feel right now — nothing is moving, I can’t get anything accomplished.

Geeze. Enough of this. Yeah, things aren’t great right now, but once I get moving, I’m sure they’ll loosen up. That’s the thing that I’ve had to learn, over and over again. I can’t start from where I want to be (feeling great and having a lot of stuff done). I need to start from where I am — even if it’s sick and tired and foggy and aggressive and a bit ragged around the edges.

Gotta get out of my head and find something to really focus on. Just gotta. I’ve got to get my mind off this headache, this nausea, this fogginess, and all the above-mentioned crap. I’ve got to just get moving and do what needs to be done today. I do have things I need to take care of, and I just need to do them. I’ve had two days to recover and recoup, and that’s been good. Now I need to kick it again and get a move on. No matter how I feel, just do what needs to be done, and then enjoy having done it.

Yeah, it’s turning out to be a beautiful day, so I can get some work done in the yard and hang out with this friend. I will need to watch myself today, to make sure I’m not all edgy around them, so I don’t chase them off the way I have chased off many other people. I just need to keep cool, keep focused on what needs to get done, and do it.

And then sleep this afternoon. Get some rest. And get ready to go back to everyday normal life. Things will take care of themselves, if I’m just honest with myself and keep an eye on myself. This is not rocket science, it’s just life. Everybody has to contend with this, TBI or no. So deal with it, I shall.

After all, it is a beautiful day.

Overcoming loneliness

So lonely...

I’ve been away for a few days, visiting an old friend several states away by myself. This is a “first” for me, in many ways.

I actually traveled by myself, which I rarely do – Over the past 20 years, I have always had someone with me, partly because I tend to get turned around in my directions and wander off and get lost… I tend to get fatigued and start making poor behavioral decisions (like with interactions with police officers)… and I usually don’t have the money or the time to travel alone — I usually take two-for-one trips that cram in as much activity as possible, while we’re on the road. Also, it’s much more fun to travel with someone else. They can share the driving or the luggage-hauling. And they can help with logistics.

This past weekend, however, I took the opportunity to drive across a couple of states to visit a good friend I haven’t seen in years. I used to see them every year or so, over holidays, but that hasn’t happened in since 2008, so I figured it was time. My spouse was away on a business trip, the weather was nice, and I was in the mood for a change of pace.

So, I hopped in the car and headed out. I got 3/4 of the way there, then I got turned around and ended up stuck in traffic for a few hours. I got completely bass-ackwards, and ended up in god-knows-where… then had to figure a way out. So, I did. I consulted the map, I took some chances, and I ended up arriving 9 hours after I’d left. The trip should have taken 7 hours, and it could have, but I lost my bearings, and that was that.

At least I got there in one piece.

And I had a great weekend.

On my way back, I got turned around again, and added another hour to my drive — this was an 8-hour drive, which is an hour better than I did going down. I missed a turn on a back road and had driven west for 20 minutes, before I realized I needed to be driving east. Oh, well. I saw some beautiful country in the process.

On my drive, I had a lot of time to think. I listened to a lot of music, and I thought about my life. The friend I went to see lives alone, with friends and relatives nearby who drop by all the time, just to hang out and say “Hi”. It’s always interesting to me, to see who comes to visit. It’s always something different. And this friend of mine really handles everyone well. They live a solitary life, without much connection to any one particular person. They travel a lot, and they spend a lot of time alone. And yet, they never seem lonely.

This is a real contrast to what I’ve seen with other people I know. One friend of mine, in particular, is very social. They are the life of the party, popular, sought-out by others who look to them for advice and support. They are well-known in their own circles, and they have no lack of people who want them to spend time with them. And yet, they tell me frequently that they are so lonely. They can’t seem to really connect with anyone. They are alone, and they are lonely.

I don’t know what to say to them. I watch them interact with others, and I see how others respond to them, yet they cannot seem to let it in. They are surrounded by people, they have people constantly asking for their company, and yet they are consumed by loneliness.

And then there’s this other friend of mine, who lives alone, who spends hours and hours just by themself, who has intermittent company, and they are not at all lonely. They are fine with it, they are fine with never having anyone around, and they actually prefer to be alone.

I was watching closely this weekend, observing how this alone-but-not-lonely person lives their life. And it occurred to me that whatever situation they were in, they were 100% there. If someone was talking to them, they were there, 100% involved in the conversation. If they were all by themself, they were 100% present with that experience. If they were annoyed, they were 100% annoyed. If they were happy, they were nothing except happy. For them, there was no long-term projection drama, no looking-back-in-regret pain. They had their memories and they had their recollections, and they had their plans, but that wasn’t all that was there for them. In fact, those were like “background music” for their life, which was all about the NOW.

And while I was there with them, I wasn’t lonely, either. I have often felt that terrible pang of isolation, of being cut off from what I wanted and desired. I have felt that sense of separation from the life I wanted to lead, the separation from the people I wanted near me. And now when I think about it, I realize that the thing I was really separated from, the thing I was really missing, was me… well, not so much ME, as my experience of the moment, as it is/was at that point in time.

Looking closer at my life, I see the times when I have felt the most distant and separated from others, have been the times when I have been distant and separated from myself — distracted by things other than my present moment, consumed by regret about my past, or worry about my future… thinking about everything but what was right in front of me, absorbed by things past and future, but not the present… so absorbed in the stuff that I thought I was supposed to be doing, that I couldn’t pay attention to the stuff I was doing.

And I was lonely.

When I was caught up in myself and my own insecurities… when I was consumed by worry and dread about what I thought was wrong with me… when I was literally working overtime, trying to keep up with what was going on around me, unable to follow what people were saying and being so terribly distracted by everything around me, because my slow brain wasn’t able to fully engage with the present as it happened… I was so, so lonely, so separated, so apart…

It was truly awful. There was nothing I could seem to do about this. And in a way, there wasn’t. My brain had gotten rearranged, and I literally had to pay attention to so many more things than usual, that I was scattered and distracted and tired. And being tired made me more scattered and distracted. So, it was a vicious, self-fulfilling cycle I was stuck in. And I could not see it changing anytime soon. I didn’t have anyone to talk to, in the early days, so I didn’t know that my situation was temporary, and I didn’t understand how it could change — or that it would change. I was so isolated and alone in my own mind, and I didn’t know how to get out.

Fortunately, things have improved tremendously. I think that just talking to people in person made a huge difference. That started with my neuropsych, who has been a regular source of help — just by being able to talk to me in a way that is respectful and decent and direct. Perhaps more than any other way, having that person there to talk to me as a regular person, not laughing at me or making fun of me or making me feel bad about how I was thinking about things, made a huge difference in my life. And it gave me a relief from my loneliness — not because they were able to connect with me better than anyone else, but because they gave me the space to be myself and connect with myself more than practially anyone else in my life, to that day.

We all need that, really. We all need to connect with others and be ourselves. We need someone in our lives that lets us not constantly pay attention to the things we might be saying or doing wrong. I grew up in a world that was obsessed with doing everything “right” — or in a certain specific way. And believe me, that was a terrible place to live, with a traumatic brain injury (or several). All the time I spent, trying to figure out what I was doing wrong now… again and again and again… What a lonely, lonely way to live. Isolated in my own head, surrounded by people who were constantly trying to get me do things “right” – or else, always scrambling, always wondering what the hell I was supposed to do, to get it right…

Terrible.

And the harder I tried to get it all right, the more distant and lost and lonely I felt.

But with this one person in my life who not only lets me just be how I am and understands the ways my brain works — and helps me constructively with suggestions and asking the right questions, rather than hurting me with criticism and demands — I have come so far. By being allowed the space to just be, and being allowed to explore different options, rather than being punished for needing to find new ways of thinking and living, I’ve come so far and managed to accomplish so much.

I haven’t been 100% perfect and I haven’t been 100% correct all the time… but then, who is? Like my 9-hour drive to see my friend, the road can be a lot longer at times, than it “should” be… but at the same time, I can enjoy the parts of it that I find interesting, and taking a little longer to do some things isn’t the worst thing in the world.

The worst thing in the world, for me, is sometimes to be 100% right… but to be so wrapped up in getting it right, that I can’t really experience what’s going on around me, in all its variety and difference and texture.

That’s really lonely.

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.