Now you can help me to help others with TBI

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

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

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

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

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

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

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

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

We do know this from multiple studies:

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

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

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

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

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

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

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

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

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

 

Onward! … Together

 

Only the connected survive

board-connectionOn 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

caregiver-stressThis 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

Getting connected again

isolationPeople 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.

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.