Archive for January, 2014

Soapbox Time

January 31, 2014

After reading complaints from fellow stroke survivors, I thought I would write this as a reaction to thoughtless and insensitive comments from so-called caring persons. I have not experienced any of these myself, but wonder what goes on in the mind of those who make such hurtful statements.

experience is the best (or worst) teacher

Brain damage – something I wouldn’t wish on my worst enemy (if I had one). Live and learn.
Recovery can be long, difficult, painful and expensive, and can ruin relationships.

walk a mile in my shoes

Some stroke survivors are unable to walk at all. Before you judge me, try living my life for one day.

judge not, lest ye be judged

I was just as clueless and ignorant before my stroke; thought they happen only to the old and infirm. I lived, and learned.

random comments (ignorance is bliss)

“But, you don’t look sick…”
Looks can be deceiving.

“Why, you’ll recover and be back to your old self in no time!”
I wish. Not that simple.

“I’m jealous; I wish I could sit at home all day and do nothing.”
Ugh. No comment. Try experiencing Locked-in Syndrome.

“You may never fully recover.”
Seriously? Just watch me. You may learn a thing or two about adaptability, something even “normal” people resort to when necessary.

“You are always cracking jokes. How can you possibly be sick?”
Humor is therapy. Laugh, and the world laughs with you. Cry, and you cry alone. Staying positive helps me heal more quickly.

“You make unreasonable statements at the most inopportune times. Your reaction is very inappropriate.”
Emotional lability: no control, no filters. Reclaimed after intense therapy, medication and healing over time, or not at all. Sensory overload can lead to emotional outbursts beyond my control.

“I don’t understand what you’re trying to say.”
Aphasia: loss of communication skills. Another side-effect of brain damage. Can be temporary or permanent. Frustrating for me as well.

“Are you even listening to me? You seem to be staring off into space.”
Another issue with brain damage – hearing and sight also may be affected. I am listening, but process things differently now. I may take longer to understand what was said, and must choose my words carefully in response. I am easily distracted; have difficulty filtering out other conversations or sounds.

“You don’t love me any more.”
Brain damage can lead to changes in mood. Trauma. Loss of personality. Confusion. Frustration. Discouragement. Failure. All contributing to Depression. Counseling and medication can reverse this condition. Yes, I still love you, though I am not capable of expressing that love like I once was.

“You stroke survivors are the reason health insurance is so expensive.”
Like, I had a choice in this. Do you smoke, drink alcohol or take recreational drugs? Those are choices.

“How could you do this to me?” (from spouse, child, family, friend, employer)
The stroke was beyond my control. Recovery is my top priority; this is my new reality. Sorry if that makes me appear selfish. I still care for you.

“Our company is not ADA compliant; you can’t work or shop here.”
Legal actions are costly, time-consuming and often are not successful. Bummer.

“We all have crosses to bear.”
True enough. Life is not without challenges for all of humanity.

Off my soapbox now, but this needed to be shared. Apologies for any hurt feelings.


Adapt or Die

January 9, 2014

The brain is a marvelous thing. It never takes a day off. It allows us to do things without thinking, so to speak. Built-in, automatic, repetitive actions – like walking or talking. Things that may be lost because of a stroke’s damage to the brain.

Because of neuroplasticity, the brain heals itself eventually, and some things lost due to stroke damage may be regained over time, but not without significant challenges.

During recovery, stroke survivors must do things differently, due to weakness or loss of movement in a limb (or loss of memory of how to accomplish such a goal). Could be a simple thing, such as opening a door or flipping a light switch, made difficult or impossible after stroke damage. A very frustrating situation for us. So we adapt out of necessity.

Some adaptations come easily, others must be learned with the assistance of therapists and caregivers. Special tools must be used to do otherwise simple tasks, like opening a jar or carrying an object. Or writing: losing the use of one arm/hand may require the other to write, something not easily accomplished. This may sound strange to most folks – how can a person fail to do such ordinary things, having done them countless times before? Because we lost that ability when we had the stroke that damaged our brains, and must adapt accordingly.

We employ devices such as wheelchairs, quad canes, joint braces, AFOs or subluxation slings to assist us in movements. Handrails help us climb stairs and use the bathroom. Aids for hearing or vision changes. Notepads for memory issues. Sometimes we must lean on things just to keep our balance. Some survivors don’t have the option to walk. Or talk.

Ingenuity helps. Many survivors come up with clever devices or routines to assist them in accomplishing ordinary tasks. Some specialized items must be purchased, and may be cost prohibitive. Again, adaptation is necessary.

My recommendation to those in need is to find and join a stroke survivor support group. Could be a lifesaver – literally. These groups (both online and in person) offer ideas and resources for everyone, including caregivers, family and friends.

Sometimes it takes me longer to do a simple task. I tire easily, and fatigue may have lasting consequences. A chore that once was accomplished in a couple of hours now may take me a day or two. My personal motto on those occasions is “slow and steady wins the race.” It may take me longer to do something, but I will get it done. Again, adaptation comes in play to deal with weakness in my left side. Necessity is the mother of invention. That is in my nature, to be inventive.

So the title “adapt or die” is not necessarily accurate for most survivors, but could be a life-or-death proposition in certain situations, and may be exacerbated by confusion, frustration and panic attacks (unfortunate side-effects of damaged brains). Cruel, but true.

Bear with us, we are doing the best we can. Please adapt to our ways – a humbly requested show of patience, understanding and kindness – as we strive to recover a sense of “normalcy.”

Lost & Found: What Brain Injury Survivors Want You to Know

January 6, 2014

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

(copied from

I Get It Now

January 2, 2014

Someone complained the other day about difficulties interacting with relatives. People being afraid of a stroke survivor, not knowing what to do or say, and ultimately avoiding the issue.

I now understand the point of view of those relatives. They fear the unknown, plain and simple. Before my stroke, I knew nothing of the results it would have on the body and mind. Now that I do understand, I want to explain to everyone that I am still here, still the same person, although I may look and behave differently.

Different is the operative word here. The stroke changed me and my ability to communicate effectively.

Thus, I am unable to get across my thoughts and feelings, which frustrates me, causing me to act irrationally sometimes – as a child might. Even healthy adults throw childish tantrums occasionally. It’s different for stroke survivors, however. We do it without realizing it, unintentionally hurting feelings or angering those we care about. We, too, are frustrated and saddened by our inability to control these emotional outbursts.

Many times lately I behave like a child – without knowing, unfortunately. I’m pretty sure this applies to other stroke survivors. Something called emotional lability, one of many unfortunate effects of stroke, changes or inhibits our ability to process emotions and social cues. We may react to things that “normal” persons would not, often in unusual and disturbing ways, which would cause distress to those with whom we interact. And by the time we realize it, the damage has been done, and the relationship sours.

All we ask is your patience and understanding. We will improve, just give us time. We are still the same inside, only having difficulty understanding and communicating our feelings.

I get it now.