Dancing in the Rain

href=”https://nogginnotions.files.wordpress.com/2015/06/dancing-in-the-rain.jpg”>Dancing in the rain

My cognitive therapist told me I need to make sure I don’t use too much cognitive energy in a day or I will be tired and unable to function very well the next.   I must schedule my day so that I allow my brain to rest cognitively. This means doing things like listening to music, working in the garden, and swimming, playing around on Facebook or taking a walk with Sparky.

I have a personality that always wants to improve on whatever I do. For example due to my hand injury, I haven’t been able to work in the front yard for two years so it is overgrown and a bit messy. Instead of simply working in the garden by pulling weeds or grooming the plants, yesterday I spent time thinking about how I wanted things to be. While it’s true I need to plan and organize, it doesn’t need to be done on the same day I’m planning other things for this is when cognitive overload overwhelms me.

Today I’ve been tired and not able to think very clearly. Life isn’t about being overloaded and tired all the time especially since the only time limits I have are self-imposed. As I continue working on the book and the garden, I’ll try to remember that life is short. I need to stop and dance in the rain.

Getting Organized (again)

I’m getting involved in organizing a couple of things at church right now. Michael and I share an office and a desk at home which for the most part, works. I’m not good at sharing a computer and he really isn’t either – although he’s better at it than I am! It just doesn’t make sense for us to have two separate offices at home though so we make do

DeskThis picture is of our desk. As you can see, it is strewed with various notebooks, papers and sundry items. Most of the mess is mine for Michael simply puts things in little piles in the corner of the desk. He does have a lot of notebooks around the computer, though but for the most part, this works for us. A few months ago, I purchased some office supplies to help me get organized but I never followed through on it.

One of the ways I deal with memory issues is by leaving papers out so that I’m reminded they are there. This doesn’t work well with both of us sharing the desk. The part of my brain responsible for organizing is damaged. I never liked organizing things anyway and the desk in my office at the church I served was always a mess. However, I knew what I needed and remembered where it was. This is no longer the case so having a messy desk is unbearable for me when I need to get things finished.

My plan was to organize my desk this morning but it didn’t work out that way. It seems I can always find something to do so I can put off organizing! However, if I want to be involved in things I HAVE to be organized or I can’t function. It’s hard to explain but with chaotic surroundings, I feel stressed inside. I can’t find anything and then I get upset because I don’t know where things are.  When I am stressed, I don’t think, making it impossible to function.

Years ago, brain injury specialists told me I was doing too many things so when I moved here to Asheville, I dropped out of everything. This worked for a while but then, I got bored so I began adding things in a careful manner. I’m still trying to find the balance between doing too much and not doing enough.

I must say again that everyone who has a brain injury functions differently. I am able to do more things than other brain injury survivors which doesn’t make me a better person. It only presents some unique challenges.

If you have a brain injury, do you find you have to organize your life better than before? When you don’t do this or try to accomplish too many things, do you get tired as I do? Have you found a way to balance this? If so, how?

iPad Mini

IpadI bought an iPad Mini today. I recently saw a webinar about devices which will help make life easier for someone who has a TBI. It was really for folks who work with brain injury survivors and not for the survivors themselves. It’s funny because while I have many, many challenges now, I still can do quite a bit but  I’ve discovered I need to get better organized to do so, which is why I got this device.

I am not computer literate at all. In fact, I don’t even know how to turn the iPad on which I discovered as I took the picture above. Michael and I went to the store together. He really knows computers which was so helpful for I didn’t even know what questions to ask. I depended on his brain this morning because mine wore out pretty early while we were there.

I also went to an Android training that was offered by U.S. Cellular earlier this morning. I’ve already attended several. In fact at the last one I attended a couple from Grace Covenant Presbyterian Church had just bought one and wanted to learn about it. I think most people go to those classes pretty soon after they buy their device but it takes me so long to learn new information that I’ve attended several.

The man this morning told me to come in any time for help which I’ve been doing. Due to my “worry-wart” personality, I worried the salespeople were bothered by my constant questions as well as having to take the time to write the information down for me. Over the years I’ve learned I must have things written down and go over it over and over again.  I’m developing new pathways for my neurons to travel which makes learning challenging.  It’s possible but it just takes a lot of time now.

I’m getting much better about asking for what I need. This morning as we looked at the iPad, I could feel my brain getting tired. I felt a bit woozy and I knew I needed to go somewhere, put in my ear plugs and “rest my brain.” I excused myself and went to the car as Michael continued with the salesperson. After fifteen or so minutes sitting in the car with the windows rolled down since it was hot, I returned.

It seems I have come a long way with this.  I’m trying to constantly ask for what I need because I don’t look like I need anything at all.  People haven’t known what to do to help me because I haven’t told them. I’m trying to be better about doing this.

If you have a brain injury, is it hard for you to describe what you need?  I have discovered that so many people just “don’t get it” and I’ve become committed to people “getting it.”  Folks will understand only if I tell them.  However, I am quite aware that unless a person has a TBI, it is very,very difficult to understand. Some folks never understand and I’m learning how to deal with this.

Scars

This past Sunday was the first Sunday after Easter.  When I went to Grace Covenant Presbyterian the picture on the left was on the cover of the bulletin.  I looked at it and thought, ” what does a little girl ready to climb a ladder into heaven have to do with Easter?”  When I read the quote from Pope John Paul II underneath, I was more confused. “Do not abandon yourselves to despair.  We are the Easter people and hallelujahah is our song.”  When I heard Kristy Farber’s sermon on Thomas in John 20:19-31, I understood.

She asks, “One question we may sit with is, how are we to celebrate God’s resurrecting power when the world around us appears so broken?”  She continues, “Even when we spend time, money and energy trying to help those in need, it often leaves us wondering if our feeble attempts have made a difference.”

I can relate to her words.  Sometimes I get frustrated and angry with myself when I see so much need in this world and how little I am able to do.  Right now, I’m involved with organizing two different things that I believe are very important in this world. No one else has agreed to organize them so I’ve decided to do it.   Oorganizing is one of my weaknesses.  It stresses me out and makes me anxious. But I’ve thought it through and made a choice to go forward with them.  

In dealing with this stress, I’ve realized that because I’m a perfectionist, I put more stress on myself than others put on me. This is forcing me to tell myself as a former therapist of mine suggested, to just stop.  It doesn’t matter if either one comes out perfect.  It is not even in my control.  I do like to be in control of things. However, I’m not in control just like none of us is in control.  I had no control of the car when it crashed into me.  I’m also not in control of my double vision or of my current hand difficulties. (I probably will have to have hand surgery again – I’ll write more about this later.)  

In her sermon, Kristy tells the story of a group of undergrads who took mission trips to Haiti. The students were astounded by the joyfulness of the children there.  They just couldn’t understand it.  Kristy writes, “Resurrection is life coming out of death.  New life and new hope.  Thomas looks for joy, hope, peace – not in a clear, unblemished form.  He needs to see and to touch resurrection in the midst of brokenness.” 

Tomorrow I have a Brainstormers support group meeting.  The location is close to me but one of the members is going to pick me up on the way there.  I will walk the block to the main road where she will meet me in a parking lot.  Another member of the group picked me up this way before but she got all confused with the directions so I gave this other person clear directions.  It turns out she knows the location but laughed and said if she wasn’t familiar with it, she would have become confused as well. (spatial orientation)

So like the children in Haiti, we could laugh about our scars together.  I read my favorite passage of scripture again today in Isaiah 43.  I read this passage all the time and am always filled with hope.  “Do not remember the former things, or consider the things of old.  I am about to do a new thing.” 

Living with a traumatic brain injury means constantly finding ” a way in the wilderness and rivers in the desert.”  (Isaiah 43:19) I refuse to abandon myself to despair.  I am one of the Easter people and hallelujah is my song.  

How do you remind yourself that you are one of the Easter people?  How do you refuse to abandon yourself to despair?  I write in my journal, swim laps or work in the garden.  I also give myself days when I don’t get anything done.  Feel free to comment here or email me directly puffer61@gmail.com

        

 

"People-First" Language

You’re probably wondering what a picture of the Y’s pool has to do with “people-first” language.   Absolutely nothing.  I don’t know how to put  pictures throughout my post but I can post them at the beginning so you’ll have to wait until further down  when I talk about the pool!

This morning I emailed back and forth to a friend about the importance of “people-first” language when talking about people who have a disability.  The issue of children with disabilities came up in my Sunday School class yesterday so I went through my files to review what I have on disability. If you don’t know what “people-first” language is, it’s language that describes what a person HAS, and not what a person is.     

For example how many times have you said or heard someone else say “she’s autistic” or  “she’s confined to a wheelchair.”  What I really hate is when someone calls me “brain damaged.”  Yes, my brain is injured but I’m much more than my damaged brain!  This morning I swam laps at the Y , my dog Sparky is sitting on the sofa next to me and I’m going to help my husband do a presentation on brain injury next week for some folks involved in law enforcement in Haywood county.  Here’s a link to Kathie Snow’s suggestions for using people first language. http://www.disabilityisnatural.com/images/PDF/pflchart09.pdf  On that site you also may read a longer article about “people- first” language.”

I didn’t realize how important using this language is until I began using it myself. My whole concept of people with disabilities changed. I began to see them (or us, since TBI is a disability) totally differently.  No longer were they nameless or faceless because I was too busy focusing on their wheelchairs rather than them.  Yes it is true that people with disabilities often need help but everyone needs help in their lives.  It’s often just magnified when a person has a disability. And the truth is, people with disabilities can often do much more than folks without disabilites think, if they would just be patient and give us the chance!

As usual, I’ve gotten involved in doing too many things.  They aren’t stressful things and it’s really not too much by the world’s standards but my brain can’t take as much now. One of the ways I deal with cognitive overload is by swimming hard laps at the Y.  It felt so good to get away from things and I now feel so much better.

Hunting through my disability files reminded me that I need to organize my papers again.  I used to function just fine when papers were piled on my desk but now it stresses me out.  I HAVE to organize my life better or I won’t be able to function. So a little at a time, I will organize my office.  I really hate organizing things but if I split it up in short segments, it will be okay.

Have you heard of “people-first” language?  Have you tried using it for yourself and for others?  See upper right for commenting instructions or contact me directly at puffer61@gmail.com

Sunday School

I attend a Sunday School class at Grace Covenant Presbyterian called Knowing and Applying the Bible Every Day. We are studying a book on Matthew by Alyce M. McKenzie and different members of the class take two weeks to lead each chapter. I enjoy discussing the Scripture passage and we have some wonderful thinkers and teachers in the class. As a result, sometimes we spend the whole hour “knowing” and not much time “applying.” For this reason, the facilitator suggested we watch the clock and at 10:15 if we haven’t spent time “applying” we need to shift to this.

Since I’ve been pretty vocal about my concerns I thought I’d lead the class myself in order to model my vision. This sounds good , doesn’t it? The problem is, it is difficult for me to lead a class. Since I have trouble thinking on my feet, facilitating is pretty impossible. Before my brain injury, I used to be a good facilitator but this is another loss I must learn to accept. As a result, I spent quite a bit of time planning and worrying!

The passage I have is a long one – Matthew 26:47-56 which leads up to the crucifixion. I used to love spending hours studying the fine points of scripture. I can no longer do this without experiencing “cognitive overload.” When this happens I can’t think of anything at all.

Since I now have difficulty with organizing my thoughts, trying to organize a study session is a bit of a challenge. I started a few weeks ago. I used to do things for long periods of time until it was finished. I can’t do this now so instead, I began working on it a few weeks ago and worked on it in short spurts. I planned when I would work on it so I wouldn’t worry needlessly.

Then I typed out an outline so I would have something to use. Of course this took time since it is difficult for me to organize anything. After a few rough drafts of my outline I settled on something I thought I could use. I knew I would be nervous since doing any sort of leading, speaking or preaching makes me nervous. I decided to see if I could handle this nervousness without losing any sleep. I prayed and even asked a few folks to pray for me.

Yes, I was stressed a bit. Yes, I lost my place a couple of times. But I learned that God can use me even if I’m not perfect. We didn’t spend too much time “knowing” but spent time “applying” and this was my hope. God was there and did use me to allow God to speak to us. For this I am grateful.

So what did I learn? I need to trust God and stop worrying. I have to do much preparation to do anything but sometimes it is worth it. I knew this would stress me out but it was a choice I made because I thought it was important.

If you have a TBI do you have difficulty organizing your thoughts? Do you stress out more now than before? How do you choose what is important for you to do and what you must give up?