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Beautifully Broken

November 17, 2018

 

I always start my story with " I went to sleep as myself and woke up a perfect stranger."

In September 2014 Labor day, I suffered a hemmoragic stroke, an acute dura subdura hematoma, followed by brain surgery to relieve the pressure in my brain. It all started with some routine dental surgery, where I caught a blood disease in my mechanical heart valves. The doctors told my family that if I survived, I would never be the same. After almost 3 months of learning how to walk, talk, eat, chew, read and write, kidney failure due to the antibiotics I was being given throughout IV for the blood disease. The doctors were right about one thing. I will never be the same. 

 

In my Facebook support groups "Beautifully broken" and "Focus on stroke recovery*healing & Rehabilitation" I raised the question "What is something you should never say to someone with a brain injury?" I received three pages of things people say to them that should never be said to someone with a TBI or any other invisible disibilty. Even out of frustration.

I wasn't surprised that this one was at the very top of the list. Its one that I have heard quite frequently. What did surprise me was the article that practically fell in my lap.

" Your lazy.. Your just not trying hard enough"

Lazy is not the same as apathy (lack of interest, motivation, or emotion, in social and physical activities with others.) Apathy is a disorder and fairly common after a brain injury and stroke. Apathy tends to get in the way of rehabilitation and recovery, it very important to recognize it.. And treat it. There are prescription medications available that have shown to reduce apathy. 

 

As not two brain injuries are the same, everybody's experience with apathy is different. You may occasionally(for myself it's every day all day.) It can get in the way of your ability to get a job, physical and occupational therapies, and maintain personal relationships. You may feel unmotivated or have a lack interest in everyday activities.

Gues what!. Were are not lazy!

This type of situational apathy is a normal side effect of a stroke and traumatic brain injury. Apathy becomes more dangerous if you have have a chronic condition and are not motivated to treat it.

For the past four years I have been in a deep, dark place frantically dodging the dark clouds of emotion threatening to burst at any moment. For four years I have not trusted my feelings and emotions. I cannot take a joke. I I have no concept of facial expressions, or body language. I laugh when I should cry, cry when I should be laughing.  

 

Apathy is a lack of interest in life activities and or interacting with others. The guitar My husband bought me for Christmas sits in the corner gathering dust. I want to play it, but have no motivation and definitely not the energy it would take to go get up and get it. It affects your ability to get a job, maintain personal relationships, and it effects your desire to get out and enjoy life.

I have isolated myself for fear of taking something someone says wrong, or may look at me cross-eyed.

Just as No two brain injuries are the same, everybody's experience with apathy is different. Depression and apathy are both symptoms of brain injury. But are not the same. It can be a symptom of depression along with disinterest. You may feel unmotivated or have a lack of interest in daily activities. This type of situational is normal in brain injuries and stroke. It becomes more dangerous if you have a chronic condition and are not motivated to treat it. 

 

 

Even when I am extremely thirsty I have no motivation or energy to go get a drink. Even when I'm standing in the kitchen.It takes motivation I don't have, to open the fridge. For my heart and stroke I am on a very strict clean eating plan. Eating healthy is not fast food. It takes time to chop and prep healthy food. And energy. And motivation. Not to mention, I have no interest in food.

Apathy is the symptom of a number of psychiatric and neurological disorder. This includes Alzheimer's disease, huntingtons disease, Parkinson's disease and stroke.

I felt so much pain until I felt nothing.

The symptoms of Apathy are a lack of passion or emotion. Every summer since my stroke I promise myself " this year I am going to work in my garden." gardening has Always been a passion of mine. My anxiety pill. But each year, no mater how hard I to try muster the motivation and energy to put on my shoes and go outside, but I no longer have the passion for it.  

 

 

The main symptom of apathy is a lack of motivation to do, complete, or accomplishing anything. This may cause feelings of hopelessness and guilt. The guilt I feel when I stopped training my service puppy, something I and my puppy were passionate about, the guilt I feel.

Apathy may cause a disinterest in life, indifference in meeting new people or vetting out and trying new things. You might show no interest in addressing personal problems or concerns. Your facial expression may not appear to change and you nay have a lack of effort, planning and emotional response.

Depression and apathy are both symptoms of brain injury and all to often dismissed by the medical community.

Since my stroke, I am so clumsy! I am always running into something, smashing my toes against the cabinets in my kitchen. Befire, I would fly into a fit of rage. One day I dropped and broke my favorite vase. I kept waiting to feel that rush of anger, but I felt nothing. Not as in.. " its no big deal, it will clean up." As in.. I felt nothing. 

 

I called my doctor immediately after reading the article I found on lazyness and apathy, thanks to that article I got an appointment to see my neurologist and cognitive therapists asap.

Health care practitioners use four criteria to diagnose apathy.

A decrease in motivation

Behavioral, thinking, or emotional changes. Effect on quality of life.

Changes in behavior not caused by other conditions.

Patients must have these symptoms for four weeks or longer.

Treatment for apathy depends really on to underlying cause, medications and psychotherapy can help restore your interest and quality of life.

Medications such as antidepressants can be helpful.

Mendel health professionals cognitive stimulation therapy.. Involves in group activities in order to stimulate brain  

waves, or looking at pictures to assist in recognizing facial expressions.

Brain injury survivors are not easy to care for. We arent, it's easy and understandable that a family member or caregiver may get frustrated and say the wrong thing. Survivors often need "Time outs" to get a hold if their emotions.

As a former caregiver for the mentally disabled I understand. I used to get off from work and go straight to my kickboxing class to blow off some steam before I went home took it out on my daughter's.

We are not lazy. We have been "trying" from the exact moment our injuries, accidents, strokes, fighting for our country, brain surgeries occured, We fighting like crazy in a coma. Family members, friends, Instead if calling us names, help us. Help us find out "why" we are not motivated Or show no interest in anything. Help your survivor find a solution to the problem.

In closing I would like to remind you that no two brain injuries are the same. No two stories are the same. I also want to thank our caregivers support us through This brain injury roller coaster ride. 

 

Thank you for Reading 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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