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March 2020

What’s Your Word?

By Blog, Newsletter

A New Year

By Diane D, BIND Member

A few years ago, I was listening to the radio on New Year’s Day when the announcer mentioned that she didn’t make New Year’s resolutions; she instead chose a word for the year.  She didn’t just pick the word out of a hat, but prayerfully contemplated the word. I really liked this idea and prayerfully chose my word: Others.

As a former Activity Director at a nursing home, I did many things for others.  I wanted to give more this year. I wanted to be more attentive to others’ needs.  This would be the year I gave myself away.

My goal was to improve the quality of life of the 20-30 residents for whom I was responsible.  I gave my time, my energy; everything I could, I gave but I forgot one important person this year.  I forgot to give to myself.

In December, my health started to fail.  I began having tremors of my hands and neck.  On Christmas day, I was admitted into the hospital with seizures, where I spent the next couple of weeks.  The next year began with a brain biopsy. There was no word that year.

I had a mysterious illness with many cognitive and neurological impairments.  From my hospital stay in January until my next hospital stay in May, I continued having seizures and the tremors worsened.  I could no longer perform fine motor tasks with my hands. I began to have moments when I couldn’t move or speak and other moments where my body would move involuntarily. I had aphasia, ataxia, stuttering, overstimulation, hypersensitivity to lights and sounds, and spent more hours asleep than awake. 

In August, I got answers.  I found out that the medications I was taking to treat my symptoms were causing my symptoms because of my DNA and how I metabolize medication.  Over the counter allergy meds caused the initial tremors and the symptoms snowballed when other drugs were added.  

Now, I had to contend with the withdrawal effects of the medications that were poisoning me. The movement issues lessened but the cognitive impairments worsened and the common withdrawal symptoms, including pain throughout my body, insomnia, anxiety, and overall malaise came on strong with each reduction.  When I started to feel somewhat normal, I would taper again and subject myself to the pain and discomfort all over again, and so it cycled for almost two years.  

Each taper pummeled my body and brain, breaking and destroying it’s connections. Towards the end, my memory was severely impacted — my short-term, long-term, and working memory were all impaired.  I would forget what I was doing just moments before, all the time, and I couldn’t hold onto a thought. My memories from the past several years were slipping away.  I had problems with slowed processing, simple math, reading, and spelling. I struggled to plan, organize, follow directions, and focus my attention for any length of time.  I also had lots of confusion, headaches, migraines, and brain fog. It wasn’t until I was finally medication free that my healing could really begin.

Healing was certainly a good word for last year, but the word that my prayers led to was “humble.” My brain injury pressed the pause button on my life and gave me the gift of reflection. Reflecting on my past helped me to see that I needed to be humbled.  

I had far too much pride in my work.  With all the knowledge I acquired during the previous ten years working in the activities field, I had become arrogant. When you are passionate and study something to such depth that it becomes your primary focus in life and when you receive much praise for your work, your pride can swell if you don’t keep yourself grounded on the source of these gifts- God. A quote from The Prayer of Jabez Journal, by Bruce Wilkinson, says, “You could call God’s hand on you the touch of greatness.  You do not become great; He becomes great through you.” I was not great at my job; it was always God.

Becoming humble has come naturally with a brain injury.  Not being able to do the things I used to do is humbling. Making mistakes because of my memory, stumbling over my words, and not understanding conversation is humbling. Getting overstimulated in loud and busy environments is humbling. It is also humbling when people don’t believe or don’t understand my symptoms.  

On my recovery journey, I have run into many types of people. They are described below:

The Deserter:  These are the people who don’t know what to say.  So they don’t. They may have been a friend before, but after the injury are not heard from.  Sadly for them it is a missed opportunity. Maybe they weren’t meant for this part of the journey.  

The Mocker:  They laugh at everything, but often at another’s expense.  I have friends that poked fun, especially when I would repeat myself.  I might not have realized I was repeating myself, but I knew enough to know that they were laughing at me.  Actually, it was funny… sometimes.  I had my usual shtick of sharing my injury with others, only the people I saw frequently already knew my story.  I just forgot they knew. I don’t always remember what I did last week, yesterday, or this morning, but my headaches and cognitive

fatigue are a never ending reminder of my condition.  I want to talk about other things, but I don’t remember our last conversations or your children’s names, and sometimes your name eludes me. I may need you to help direct our discussions.

The Samer:  These are the people that have every ailment that you do.  People often try to make your symptoms seem “normal,” to help you fit in.  Sometimes they might say, “it’s not that bad,” or, “we all have that.” Only instead of making me feel included, I feel dismissed and invalidated.  I have learned that people can only reference your feelings through the filter of their own experiences.  

The Judge:  They question my condition, symptoms, or decisions.  They might challenge why I can’t do something or why I have to leave early.  Some people may not realize that each day and each hour with a brain injury can be different, even in a moment my condition can change if I become too fatigued. Others may not understand that different parts of the brain affect different functions. My friends were able to learn about brain injury through my experience.

Even my family doesn’t always understand.  Just the other day, someone said that I lost my determination.  Dear friends and family, every day with a brain injury takes more determination than you know.  I am determined to do what I can, but I am no longer determined to be who I once was. I’m not giving up. I am letting go.

It is only when my friends and family love and accept me and my condition without judgement that I feel accepted.  Seemingly some fell a bit short, but each have been here for me in many ways. My friends and family took care of me, visited me, brought me shopping or to lunch, and they helped take care of my family when I could not.   

Truth is, I have been guilty of all of those shortcomings at one time or another: not talking to someone when I don’t know what to say, making assumptions about someone’s condition, saying that I understood someone’s experience when I couldn’t possibly, laughing when someone makes a funny mistake, and thinking that a person wasn’t doing all they possibly could to get well.  I am blessed to have such caring friends and family. They did the best they knew. The only people that can really understand a brain injury are the ones that have experienced it. This is one of the elements that makes BIND so great! Everyone here understands. 

According to 1 Peter 5:5, “God opposes the proud but gives grace to the humble.”  I am finding this grace in my life. I am still learning to be humble in 2019 and I still find ways to give myself to others, making sure to also give to myself.  These words continue to have meaning long after the year is through. They’ve become a part of who I am.

My word this year is “simplify.”  Choosing this year’s word was easy.  The wake of Christmas chaos inspired this word.  I was busier this Christmas. I started BIND, I had doctors appointments each week, and I was finally able to attend parties this year.  Last Christmas I felt poorly and didn’t go out much so I had a lot to make up for.  

When my activities increased, so did my cognitive impairments.  I bought someone a gift, then another day bought them a gift. Sometimes it was the very same gift.  I lost hundreds of dollars in gift certificates (I am still missing $120.00), and I forgot about other friends and family all together.  Everything was a mess! By Christmas week, I just had to let it all go. I still have Christmas gifts sitting on my counter that I never had the energy to deliver.  I love Christmas and I love to give, but now it is time to reign things in and make things easier on myself. I can no longer keep pace with the former me.  

Evaluating my schedule has been number one in my simplification process.  Organizing my appointments and limiting them helps with my fatigue. I use UBER, buy most things online, and have my groceries delivered. 

In addition, I am getting rid of excess things.  My days are shorter and I have many projects that have piled on my plate over the last few years.  It is time to walk away from some of them. Planning and organizing are skills that I had once lost, so organizing my life is not only helpful, but it is therapy!

I have also decided to discontinue my volunteer work.  This is a hard decision that I haven’t quite committed to yet.  I had accepted a job as a teacher at a day center when I was doing better but my cognition declined and I was no longer able to supervise anyone, let alone a group of people.  Overstimulation and fatigue make it near impossible for me to visit the center for very long. I stayed on the board of directors with the hope of getting back to teaching, but it has been a year and a half and I am still unable to teach. This decision breaks my heart.  It is a decision based on the acceptance of my condition and it means leaving behind a life that no longer fits.  

As I heal, I am changing.  I will probably never be an activity director or a teacher again, even though I miss it dearly.  That was a different time, a different me. By simplifying this year, I hope to discover new goals, new projects, and a new me.  By year end, I will create space in my life for my next word.