Posts Tagged ‘stroke survivors’

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.”