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

 

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

When bad things happen to good people

The road ahead is not always clear
The road ahead is not always clear

Oh, this is upsetting. My neuropsych is having potentially serious health issues, and we won’t be meeting next week.

The upsetting thing is not so much that I won’t get to meet with them. It’s that they are having health issues. Their situation is not certain. You like to hope for the best and stay positive, but with the healthcare system as it is, you never know…

I really got thrown for a loop yesterday. When I first talked to them to cancel our appointment, I was fine. I was feeling very positive and supportive, and I think I helped them feel better. I made them laugh a little, which always helps. Then I took a nap later in the day, and when I woke up, I was very, very sad. Because if something happens to them, so they can’t work anymore, I had the distinct impression that I will go back to being alone.

And that made me so sad, I started to cry. I hate when that happens. I suddenly felt so alone, so small and so vulnerable. I felt like I was five years old again, being left behind as the school bus going home pulled away from the curb, leaving me alone and not able to get back home from my first day of kindergarten. In the past six years that we have worked together, my neuropsych has really been the only reliable person in my life who has not judged me for being different, who has understood the challenges I’m up against, and who has really cheered for my advances, instead of just treating them like something I should have been able to do, all along. If I lose their regular presence in my life, it’s going to be a real blow.

I felt kind of crappy, feeling that way, because it was all about me. I’ve been working on that tendency to always think of myself first and not pay any attention to anyone else’s needs. But I’m also feeling upset that this is happening to them, because they are a really good person who has been on the business end of life’s cattle prod many times too often, and I hate that they have to go through this — especially as they are nearing retirement age, and no one should have to spend their later years in terrible physical condition.

I wish there were something I could do, but my neuropsych is a private citizen, and it would be inappropriate for me to try to contact them outside our clinical relationship. I feel very helpless – life is just doing what it’s doing, and I can’t really do anything to stop it. All I can do is adjust. And take care of myself.

I hate feeling selfish like this. It really bothers me, that my first thought is “What will happen to me?” I know that is not a reflection of my “highest self”. I am better than that.

So, I am doing something about it, and I am searching online for volunteer opportunities, to reach out and help others. I don’t want to be “that person”. I want to be better. I know how good it makes me feel to be reassured and assisted with things I don’t know about. I’m very independent, and having additional help from experts gives me some measure of reassurance I need, in the midst of what can be a very confusing and disorienting world. I have skills I can pass along to others who want to learn, and by offering others what I myself seek to have, that can get me out of my funk and keep the focus off me-me-me.

In all honesty, I need to be thinking this scenario through, anyway. My neuropsych is at the end of their career, and they’re not going to be practicing forever. I’m fortunate/unfortunate enough to have worked with them when they are at the high point of their professional practice, having spent decades refining their approach and having already had tons of experience with what works — and what doesn’t.

I’ve had the good sense to avail myself of their help when I’ve needed it. The thing is, I’ve done so much of my work by myself — and then checked in with them after the fact — that it’s not their guidance I rely on; it’s their assessment and feedback about what I’ve done and whether or not the result is what I was hoping for.

It’s been one big, fantastic science experiment, in all the best senses of the word, and I’ve really benefited. And to be honest, so have they. They’ve never directly told me the details about how my work has helped them, but they once mentioned to my spouse that it’s hugely encouraging for them to work with me, as I’m so intent on getting better and really putting in the work. They said that most of their brain injury survivor patients aren’t willing to do the work to really get better. How depressing that must be…

The working relationship has been mutually beneficial for sure. I know they’ve gotten better, themself, because the difference between how they are now and how they were when I first met them, is significant. When I first met them, they were much more tentative, spacy, and absent-minded. They would forget appointments with me, they seemed more hesitant in so many ways, and they didn’t have their act together with billing and business management details.

In the past six years, they’ve really stepped up their game, and I like to think that working with me has helped. In, fact, I’m sure of it. And the time when I went to meeting with them every other week, instead of every week, they seemed to regret not checking in with me each week.

I guess one of the things that’s kept me motivated over the past years, has been knowing that my progress was helping another person. Knowing that getting better myself was helpful to my neuropsych — which then made it possible for them to help others — has been a driving force behind my recovery. It’s not just about me. It’s about all of us.

This blog, too, has been a big part of my recovery, and hearing from folks that I’ve helped them, or they respond to things I write, has been a real boost for me in so many ways. My TBI recovery doesn’t just belong to me. It really belongs to all of us. I happen to benefit from it — and so do many, many others.

So, that keeps me going.

And I wish I could do more. I really do. There are so many brain-injured people suffering and alone and afraid, because of what’s happening inside their heads — and bodies — that they don’t fully understand. That goes for strokes, acquired brain injuries, and traumatic brain injuries, alike. We’re all a little bit different from each other, yet we have so much in common. And we need to focus on that commonality. The professional community stands to gain from divvying up our issues into different categories and disciplines, so they can mobilize their resources to address each aspect. But for those of us suffering from the symptoms and after-effects and ripple-effects of brain injury, this segmentation just makes things worse.

Those of us who have experienced brain injuries need to be connected with the larger world. We need to be involved in a community. And the way brain injury recovery is set up in this nation, is the worst way to handle things for us. It’s limited by insurance and the abilities and knowledge of people who are not adequately trained in brain injury issues, and who frankly run out of steam, because brain injury does such an unpredictable number on its “recipients”. Also, our loved-ones get the brunt of things, because they’re ultimately our last line of assistance, but nobody out there truly understands

Lord, we are exhausting.

So, those of us who can, need to do something about it. I have posted the Give Back training I downloaded to my site here https://brokenbrilliant.wordpress.com/brain-injury-association-resources/give-back-tbi-education-for-survivors-and-families/ I hope people will make use of it. The information has helped me so much, and I do need to go back to it… and I shall. With a fresh look, years after the first time I downloaded it and started to read it.

I have some other ideas about how to help… including more ideas for this blog. I’m getting a bit long-winded here, so I need to wrap it up… and also get on with my day visiting my family. I don’t get to see them that often, so I need to take advantage, and get on with my morning.

I’ll be driving back home later today — and it’s another gorgeous day — so I need to get my act together, get off my damn’ pity-pot, and make the most of what I have. Each and every day.

Onward.

There is no shame in asking for help

I was watching an old episode of “Northern Exposure” last night — remember that? the show about the New York doctor who has to work off his tuition in the wilds of Alaska? I watched it religiously when it was on, in the early 1990s, and thankfully it’s now available on DVD through my local library. (Have I mentioned yet, today, how much I love my library — indeed, the whole system they belong to, which lets me request books from all over, even colleges that would normally be off-limits to me?)

Anyway, the show was about knowing how to ask for help. Swallowing your pride and accepting the help that others offer. It was a great episode, I believe from the fifth season. A bunch of people in town were in situations where they needed a little (or a lot) outside help, and they were eventually able to see past their own pride to either ask for or accept assistance from others.

Having a brain injury (even a “mild” one) that leaves traces of impairment can be devastating, in and of itself. All of a sudden, things don’t work the way they really should (I’m not going to pretend that I think my memory issues and emotional volatility and mood problems and cognitive issues are absolutely okay — they’re really problematic, at times, and a lot of the time, my life would very likely be a lot less complicated, if I had all the functionality available to me, had I not been hit on the head so many times). All of a sudden, the world gets turned upside-down, and very little seems to work like it once did. It can really lay a person low, losing faculties and abilities that you used to once take for granted. And it can really do a job on you, when your difficulties are not immediately apparent to others, but you’re dealing with them, all the same.

Things like slower cognitive processing — figuring out what someone just said to you and how you should respond… constant crazy-making ringing in your ears… wild mood swings and sudden temper outbursts… sleep disturbances… the whole raft of issues and challenges that can accompany mTBI, may be well-hidden from the outside world, but that doesn’t make them any less real or any less difficult to deal with.

Things get even more complicated by the fact that it’s your brain that’s been affected. It makes it harder to figure out just WHAT is going wrong, and how, and when, and what you’d like to do/see/feel/experience instead of what’s going on inside and around you. It can make it harder to even see that there IS something wrong, and you can spend a lot of time (like I did, for several years after my last fall) walking through the world in a kind of daze, wondering what they hell is wrong with you and why you’re having so many problems with such simple things.

That’s where help from other people comes in. That’s where assistance offered from others really comes in handy. I’ve had years and years of experience dealing with my head injuries, and much of that time has been spent trying to go it alone and do things myself. I’ll do it myself! was my battle cry for most of my life, especially during childhood. It was so hard for me to figure out what was going wrong, what the cause was, and what should be done about things, that conceptualizing it in a way I could explain to others — and then effectively communicating it to others — was an almost insurmountable task. So, I ended up taking on a lot by myself, and I really muddled through my life, one day after another… for decades.

But when I finally started to put two and two together, and I realized that many, many of my difficulties could be traced back to my head injuries — my behavior and my life experience changed dramatically either immediately after the injuries, or they went downhill very precipitously within months — it became all the more clear to me that I did need help. That I had limitations. That there are parts of me that don’t function the way I want/need them to. And that I couldn’t go it alone anymore.

So, I started asking for help. In small ways, then building up to larger and larger ones. I have to admit, I still have a lot of trouble at times asking for help, in part because of my pride, in part because I sometimes have a really difficult time knowing whom to ask and what to ask for. But I am learning that if someone offers me help, it’s often best to accept. And not only for my sake — for the sake of others, as well.

Asking for and accepting help isn’t just for you. It’s not just for me. It’s not just for the benefit of the person who needs assistance. It’s for the person who wants to help, too. It’s for the person who sees another human being in need, and wants to reach out and lighten their burden. It’s for the person who longs to make a valuable contribution to life, who longs to pitch in, who longs to be of use. I’m one such person — I love to help other people, and I love to contribute to their well-being. It’s been that way all my life, and I’ve actually gotten in trouble for being “too helpful”.

Helping others is a need I have. It’s a need I feel compelled to fill. And I know for a fact that others share that same need. We want to be valued. We want to be included. We want to be part of the solution and help overcome others’ problems. We want to pitch in. We want to be part of something bigger than ourselves. We want to be the best people we can be, by helping others to do the same.

So, accepting help from others doesn’t just help me — it helps them, too. It includes them in my life. It makes them part of something good. We all need that.

So, the next time someone offers you help, whether you’ve had a TBI or not, please accept their offer (within reason of course). The next time you’re struggling, and someone offers to help you out, let them. Let them carry something for you. Let them help you complete something you started. Let them come to your assistance. Let them hold the door open for you. Let them be of use to another human being. When you accept help from another person, you don’t make yourself weaker. You make yourself stronger.

And that’s how it should be.