Make a List

Hey Gang, it's Larry again.

I'm filling in for Beth this week because she's all hyped up about a business trip she has coming up this week. She leaves in a few days for London, England, and will be teaching classes to different groups of people who don't speak English.

As you might imagine, she's just about to blow a fuse. "I've got to do this. I've got to do that. I've got to remember to ... Don't let me forget to..."

Last night I turned to her and said, "Make a List." After all, that is one of the best strategies for helping a faulty memory following a brain injury. And it's a strategy she knows. And it's a strategy she's written about time and time again.

However, we all get flustered from time to time. Each of us has those moments when our guard is not up like it should be...and life is standing there ready to throw an uppercut and send us reeling. Beth was having such a moment.

First, of course, she's taking an international flight without me. Then she'll need to change some of her money to English pounds. Naturally, the electricity in the hotel is not wired for American gadgets like hair dryers and such. And we haven't even gotten to the classes yet!

Yes, it's a stressful time. However, once she began making her list, things began to fall more into place. At least into a more manageable place.

We received an email this week from a lady whose brain was injured in a car wreck back in the 1980's. She had recently read our book ... and she realized she had been fooling herself and her family about her injury FOR 24 YEARS!

I want to share a part of it with you. "OMG, I loved, loved, loved your book!!!!!!!! I am a TBI survivor from 1986. Upon completing your book I am able (for the first time in 24 years) to admit that I have deficts that make me different from the regular non-brain injured population. I thought I was healed, I kept telling my family, friends and myself that I was 'normal', I have recreated my persona and am a happy person. But in reading your book I am comfortable that I get tired after working for 5 hours as a therapist. Your book has done for me more than I could ever imagine. What your book has done for me I wish to do for others. Thank God for you and your book!"

The point I want to make is this. That lady was writing 24 years after her injury; Beth just had her 31st anniversary. The effects of brain injury can jump up at any time. Just remember, when in doubt -- make a list.

A Funny Story

Hi. Larry here today. I felt like I needed to share a funny email I received from a friend yesterday.

One of the couples in our group are both having problems remembering things. During a checkup, the doctor tells them that they're physically okay, but they might want to start writing things down to help them remember. Later that night, while watching TV, the old man gets up from his chair. "Want anything while I'm in the kitchen?" he asks.

"Will you get me a bowl of ice cream?"

"Sure," he answered.

"Don't you think you should write it down so you can remember it?" she asks.

"No, I can remember it."

"Well, I'd like some strawberries on top, too. Maybe you should write it down, so as not to forget it?"

He says, "I can remember that. You want a bowl of ice cream with strawberries."

"I'd also like whipped cream. I'm certain you'll forget that, write it down?" she says rather emphatically.

Irritated, he says, "I don't need to write it down, I can remember it! Ice cream with strawberries and whipped cream - I got it, for goodness sake!"

Then he toddles into the kitchen. After about 20 minutes, The old man returns from the kitchen and hands his wife a plate of bacon and eggs. She stares at the plate for a moment.

"Where's my toast ?"

Memory problems are very much a part of life for those living with brain injury. But, isn't it fun to laugh at...every once in a while?

Prioritize and Get Organized after Brain Injury

Last week was an especially challenging one for me. It was one of those weeks where things just didn’t fall in line like they should and I was faced with a lot of decision-making and prioritizing. An essential element to living with brain injury is to prioritize and stay organized.

I find it helps to have lists when organizing my thoughts. At work or at home I like to write down all the things that come to mind that I need to get accomplished that day. Then I prioritize that list by importance. I don’t always finish everything I’ve written down, but by organizing it, I get to the most important items first. Then I just transfer the leftovers to the next list I create. There are a lot of references to lists in Brain Injury Survivor’s Guide since I believe they are a necessary tool for living successfully with brain injury.

It helps to remind myself that everything really important will get done and that the urgency I feel at the time will no longer be a concern once they are accomplished. So, when my brain starts to get scrambled, I know it’s time to stop and get organized.

Just like organizing and prioritizing my thoughts is essential to getting things accomplished, doing some physical organization is also very helpful to me. As Larry knows, I hate clutter! After a while it starts to cloud my ability to think. Suddenly all I can see is clutter, clutter, clutter. I get obsessed with it. Then it’s time to take some time to do some organizing, prioritizing and just plain old throwing some things out. It’s like my brain won’t go beyond how disturbed I am by the clutter. I guess it’s sort of like spring cleaning – only it happens more than once a year.

I’m hoping this week at the office will be less hectic, but if it’s not – I’m prepared to prioritize and get organized so I can insure all will go as smoothly as possible. One thing is for sure – this too shall pass and everything will work out.

Traveling with a Brain Injury

Traveling with a brain injury is not too much of a big deal as long as you have someone with you that you can trust. However, traveling with a brain injury alone is an entirely different story. It surely can be done, but requires the use of compensatory strategies (such as those describe in Brain Injury Survivor's Guide), some confidence, and a bit of patience.

I was recently asked by my employer if I would consider making a trip to Europe to share information with some of our coworkers there. I agreed, but at this point, it has not been confirmed that I will be going. Nevertheless, it is on my mind pretty much daily because I know I will need to make use of my travel planning guidelines I wrote about back in June. To complicate things just a bit – I would leave two days after I am to return from a week’s vacation in New Orleans.

Several departments within the company have people going on the trip to Europe. So – you say – I wouldn’t be going alone. That depends on how you look at it. None, with the possible exception of one of those going, have any idea I live with a brain injury. That one person who may be going too; and who I’ve told about my brain injury, really doesn’t know the extent of how it controls my life. This situation is not as bad as traveling alone, but it’s pretty close to it.

I’ve tried not to think about it for now since I don’t even know for sure I’m going, but that’s hard to do since I need to be preparing as soon as possible. I know I will be fine if I plan ahead both for the travel and for what I am to do when I get there. It’s been a while since I’ve traveled alone and have not done it at all outside the country. I did threaten to go to Saint Martin ahead of Larry one year when he thought he was only going to be able to be gone for a week rather than the two we had planned. He couldn’t believe I would go without him. But, to me, it was doable – especially since he would be joining me later. Turns out he could make the two weeks after all, so it became a non issue.

The whole point of this article is that, yes, those of us with a brain injury can travel as long as we prepare ahead of time – realizing that plans can change in a heartbeat along the way. That’s when I rely on my compensatory strategies to get me though the rough spots. Then I can sit back, enjoy, and feel relief and a sense of accomplishment that only I can see as a big deal.

JUST BREATHE

Do you ever think about how great it is to be able to just breathe? I think about that a lot – especially this time of year.

Twenty-one years ago yesterday, I entered the hospital for routine major surgery – a hysterectomy. Thirty days later I left that hospital with only partial lung capacity. That was a miracle in itself considering the various obstacles I managed to overcome during that month. More about that in Brain Injury Survivor's Guide.

My anoxic brain injury occurred as a result of ARDS which was believed by most to have been brought on by the many blood transfusions I received following a mistake by the surgeon during the first surgery. A second surgery was “finally” performed to correct the problem – too late to prevent my brain injury.

Needless to say, over the years I have faced numerous stressful situations brought on as a result of having a brain injury. As a brain injury survivor or caregiver, I’m sure you can relate to that statement. I am always looking for ways to combat the daily stress in my life – whether it’s good stress or bad. Excitement can be stressful to someone who lives with brain injury. Sometimes when I am excited about a situation or event, I can’t really enjoy the moment as I should because I am constantly reminding myself of all the things that could go wrong and how I need to “be careful”. You know what I’m talking about don’t you? “This is great! – but what if, what if, what if?”

So – back to the subject – “Just Breathe”. That is one of my best compensatory strategies. After quite a while, I was finally able to take a deep breath. I realized what a blessing it is just to be able to do that. So, when I start to get frantic, or even a little frustrated, I take a deep breath to remind myself to put things into perspective. I can take a deep breath – I can walk around without being tethered to a machine that helps me breathe – how great is that!

I decided several years ago to concentrate on what is really important in my life. That would be my family and my independence. When I get super stressed or when I’m just feeling sorry for myself, I just breathe.

Try it if you start to feel overwhelmed. Just breathe and think about how great it is to be able to take a deep breath.

MISSING MYSELF AFTER BRAIN INJURY

Brain injury recovery is often a misused term because it makes people think they may be able to return to the way things were before the head trauma.


My anoxic brain injury happened while I was in the hospital for routine surgery where I required a second surgery to correct a mistake which caused me to bleed internally. For about 30 hours the hospital staff gave me blood transfusion after blood transfusion trying to elevate my count. But it was like pouring water into a hula hoop; it was just going right through. Little did I know at the time that portions of my brain were dying as the doctors tried to determine the cause. And so would begin the reason I would be missing myself after brain injury.

I developed ARDS (acute respiratory distress syndrome) commonly caused by massive blood transfusions. My lungs filled with fluid, leaving no room for air, and I stopped breathing. No one knows how long I lay in bed in that condition, but I was discovered by a nurse. A Code Blue was sounded and emergency procedures were initiated to save my life.

I was put into a medically-induced coma to allow my body to fight the ARDS. My kidneys quit working, so another specialist joined the team. Then my fingers and toes turned blue due to the lack of oxygen and a specialist was called in to discuss amputations. Larry was on alert and stopped that drastic measure.

I guess it's kind of silly to say I woke up. Otherwise, I wouldn't be writing this. But I woke up to a strange world. I didn't know who Larry was, even though we'd been married 20 years. I didn't even know I was married and had two children. Another reason I would be missing myself after brain injury.

I couldn't see very well, I couldn’t remember things, I couldn’t’ think, I was emotional – the symptoms of brain injury continued to grow. My personality was flat and I had no initiative, so I really didn't care about any of those chores I'd forgotten how to perform. Total confusion ruled my life and I began to miss myself even more.

Months later my ophthalmologist sent me for an MRI and, finally, it was discovered my brain had been injured. Yes, I'd had MRI's in the hospital but I think they were looking at my abdomen lungs and kidneys and not my brain.

Fifteen months after my injury I was finally admitted for brain injury rehabilitation but as good as some of the therapists were, the program was only about 4 months in duration and new problems still came at me every day.

Larry and I had already begun developing strategies that would help me perform without a short term memory and without some of the cognitive skills I'd had previously. Lists, lists and more lists became a way of life ... and still are.

Like most brain injury victims, I was told I would probably never work again. With the strategies Larry and I developed I was able to return to work and even was eventually promoted. I was even able to move into a position I probably would not have reached for prior to my brain injury.

Myself- that is - I never returned completely, but I learned how to live in my new world. Not just live, but to live successfully. If there is any one word of advice I would give, it would be this: Never Give Up! Learn as much as you can, and keep on trying!!! There just might be a better life out there than the one before.

It’s your life; LIVE IT!

No one can live your life but you—that’s why I chose the title – It’s your life; Live IT! There are others in your life who have influence over how you choose to live your life, but ultimately you are in control (or out of control).

I was inspired to write this article after a visit to the nail salon yesterday. I am often inspired by this young Vietnamese couple who run the shop I have been going to for years. As citizens, they have embraced a lot of our American culture over the years (some good – some not so good), but they seem to have a very basic philosophy when it comes to living and appreciating life.

As the young woman was working on my nails, we were having a discussion about how important it is to live life and enjoy our families while we’re here on earth - to go out and spend a little of that money we work so hard to get day after day. Their salon is open 6 days a week from early to late with an occasional extra day off for popular holidays. They have three small children and she’s always talking about how much she enjoys spending time with them. In addition, she somehow finds time to go shopping which is just about her favorite pastime – thus, the topic of our conversation yesterday.

I think we should surround ourselves with encouragement and humor. No good comes from being down and sad all the time. Sometimes we have to have a talk with ourselves to get back on track. In less than a month it will have been 21 years since my anoxic brain injury occurred. Nonetheless, in many ways it seems like yesterday.

Our goal is to help all those affected by brain injury: victims, family members, friends and co-workers by showing the way to a prosperous and happy Life After Brain Injury. I still have the same brain injury I had 21 years ago. What has made the difference is learning to live with my brain injury by constantly using compensatory strategies practiced over and over again. Check out this page on Brain Injury Guide which contains some uplifting items available for purchase that offer encouragement. All purchases in this store help support the mission of braininjuryguide.org.


Keep it simple. Look at what’s “really” important in life. It’s your life; live it!