creative, disability, stress

I had an appointment with Dr LeMauviel, my primary care physician, yesterday for a blood test to make sure the thyroid medication I’m taking is the correct strength. The appointment usually takes all of 10 minutes but this time she wanted to talk to me. To my chagrin, I waited for an hour for she was running late. I couldn’t help asking myself, “Who does she think she is, keeping me waiting like this?”

Migraine Medication

Migraine Medication

However, I gave her the benefit of the doubt because I like her immensely. Years ago in Atlanta I had tried many migraine preventatives for my post-traumatic migraines which are common after brain injury. The side effects were unbearable until my neurologist there suggested an unconventional preventative which worked. A couple of years ago, Dr. LeMauviel pointed out that this preventative medication was raising my heart rate and wasn’t good for my body. She suggested I try alternative therapies which I did and they worked.

So at my appointment yesterday, the first thing she said to me was, “I didn’t get your records from your hospitalization in Canada.” “Oops,” I thought. “She remembered.” I had told her about the hospitalization when I had my physical back in the fall and she asked me to have them send her my records. The truth is, there wasn’t anything in the records since it was a brain injury meltdown although folks there didn’t know that. They ran two cat scans and both were normal.

LeMauviel is a good doctor. In spite of being behind schedule, she took the time to listen to me and then suggested I have some medication on hand in case I ever get into another situation like that. I balked at this but she wrote me a prescription for Alprazolam anyway which I planned not to fill.

However, the person checking me out wanted to set up an appointment in one month so LeMauviel could check to see how the medication worked. She told me I could always cancel it which I had every intention of doing. However, this afternoon I took out my husband Michael’s copy of the DR guide to Prescription Drugs to check it out.. It turns out it is generic for Xanax which is a fairly strong tranquilizer used for short term relief of anxiety.

As much as I dislike taking medication and am very aware we live in a pill popping society, I’m going to try it. If I decide to keep some on hand I will use it very sparingly in the hopes I don’t go through my Canadian experience again. One thing I have learned about this world of brain injury is, I have to try many different things for each person is different and nothing works for everyone. It’s a good thing I’m creative and willing to try new things!


Disability Difficulties

Advent, Choir, disability

I had surgery on my thumb on December 2 in Charlotte, NC.  At first I had to wear a fairly big cast which meant I couldn’t use my left arm at all.  Two weeks later, they put on the purple cast which is the perfect color for Advent. This picture was taken at choir practice last night.IMG_20131218_181536_550

Not having use of this hand has reminded me again how annoying it is to live with a physical disability.  I wasn’t able to take a shower or wash my hair by myself.  I had to make sure Michael had loosened the tops on any bottles I might need to open since my left hand wasn’t strong enough to open them.  I don’t send out many Christmas cards which is a good thing since addressing them is a painfully slow process using my left hand.

After returning home from the Disability Institute in July, I’ve been a bit uninterested in the disability movement.  It was so neat to be there for my experiences as a person with a disability were valued and this felt good.  Here at home, it is different and I haven’t been able to get energized around the issue. However, this experience with my hand reignited my interest.

For example last night at choir practice, I knew I wouldn’t be able to hold the music like everyone else so I made arrangements to have a music stand.   Plus the anthem for Sunday is in a book which I can’t hold so I had to copy it and figure out how to put it together.  This sounds like a small thing but it isn’t.  I’m not able to use the black folder like everyone else so I’ve rigged up a system of using black poster board so that it looks like everyone else’s. I’m not very good with measuring things and putting them together so I cut the pages all different sizes.  It’s a mess but it worked last night.  I’ve asked Michael to help me straighten it out for Sunday morning.

I have no idea how much time I’ve already put into making the anthem look like everyone else’s. We’re singing many anthems on Christmas Eve and it’s going to take me a while to put them together. I really don’t want to do it but it makes some folks uncomfortable in the choir if I don’t use a black folder.

This points to a much larger issue in the disability community: – the time we put in to be like the rest of the world.  It’s a much bigger issue for folks with physical disabilities because often it involves just getting into the room. The event might be on the second floor and there is no elevator.  We in the disability community do not want special favors or special recognition.  We just want to participate which sometimes is difficult for us to do.

Adam’s Way

disability, Henri Nouwen

NouwenWhen I was in Toronto, I went on a field trip to visit the L’Arche community where Henri Nouwen spent the last decade of his life.  He wrote a book called Adam: God’s Beloved about his experience working as Adam’s assistant.   L’Arche communities are all across the world now.

These communities began when Jean Vanier started the movement and communites are all across the world now.  They are places where core members – people who have mental disabilities – live with their assistants sharing life together.  It’s very different from a group home because, to quote Nouwen, “L’Arche is all about placing the weakest and most vulnerable persons in the center and looking for their unique gifts.”  As Nouwen discovered, doing this allows people to look inside themselves and see their own vulnerabilities which folks often hide.

This Institute has pushed me to look at the term “disability” again.  The Americans with Disabilities Act defines disability as “a physical or mental impairment that substantially limits one or more life activities….”  I must say, I’ve been pretty ridged about this definition and have argued against the idea that everyone has a disability.

In fact I felt a jolt inside when Jeremy Schipper, one of the presenters at the Institute, made a similar comment. Schipper is Associate Professor of Hebrew Bible at Temple University, Pennsylvania, and an affiliated faculty member of the Institute on Disabilities there, made a statement implying all of us have disabilities  “Wait a minute!  Don’t try to co-opt the term!”  However, I learned later he has a disability himself.  Whenever I discover someone who has a disability who seems to be doing greater things than I, I feel inadequate.  There is so much I can’t do and want to do, because of my TBI.

I realize this is the dilemma for many of us who value what we can do rather than who we are.  I was confronted with this back in the 90’s by one of my neuropsychologists.  It is still a growing edge for me and probably always will be.

For Nouwen, living at Daybreak pushed him to see himself as “God’s beloved son.”  He wrote that even though he had left the university with its prestige, he still had satisfaction and admiration knowing that he was “helping the poor.”  However this was taken away from him when he had to leave Daybreak to struggle internally with his demons.

From the little he wrote about the experience, it sounds like it was a mighty struggle.  He didn’t want to be like Adam.  He didn’t want to be vulnerable and needy.  Somewhere, though, he “recognized that Adam’s way, the way of radical vulnerability, was also the way of Jesus.”

I think the word “vulnerability” can sometimes be used interchangeability with “honesty.” Many folks have said to me they appreciate my vulnerability but the truth is, I’m just being honest.  People tend to think, perhaps rightly at times, that being honest about what we can or cannot do will cause us to lose our jobs or our loved ones. Most people who have a disability do not have this luxury.

This is one thing I believe folks with disabilities can teach others.  We all have our vulnerabilities – some might call them disabilities – and the way of Jesus (Adam’s way) is to be radically vulnerable.  All of us need to strive to follow this way.


Think about your own disabilities.  Where are you vulnerable?  How can you strive for Jesus’ way?  I encourage you to share your thoughts here in the comment section.



“On Our Way”

awareness, disability, Dr. Martin Luther King, journey, memory, mental fatigue, resting brain, survivor, Uncategorized
Funeral Procession of the Rev. Dr. Martin Luther King, April 9, 1968

Funeral Procession of the Rev. Dr. Martin Luther King, April 9, 1968

Mark Ramsey and Kristy Farber, the two pastors at Grace Covenant Presbyterian Church here in Asheville, NC are doing a sermon series on communion, baptisim, funerals and marriages. Last Sunday the day before Dr. Martin Luther King Day, Mark preached about funerals. I couldn’t help thinking, “Now how in the world is he going to preach about Dr. King and funerals in the same sermon?” Somehow, he managed to do so and I must say I was impressed with his thoughts.

Sermons are funny things. Mark preached this neat sermon about Dr. King and funerals and somehow I connected it to my own personal issues. I think this happens a lot which is what is great about sermons and worship services. God speaks to each of us through them often in ways the worship leaders do not even imagine. To hear his sermon, click the following link:
(There’s a real good chance I put this in wrong so in case I did, go to the web side http://www.gcpcusa.org then click on sermons on the right side. Next click on “On Our Way.”)

In it, Mark said that funerals call us to do three things. 1) Tell the truth about our lives 2) Lift up the promises of God 3) Due to this opportunity to look back, we are propelled forward. As I thought about his words, I realized that having a brain injury calls us to do these very same things. In the beginning, I would never share that I had a brain injury. In fact, I was advised by folks to keep it quiet. Since you wouldn’t know I have a TBI by looking at me, this was pretty easy. .

The problem? I was miserable. I didn’t like hiding the fact that I couldn’t remember someone’s name or I got lost all the time. I hated having to find a place by myself where I could “rest my brain” by putting in my ear plugs for a few minutes and closing my eyes. I do know that our world is set up for us to hide our true selves in order to “make it” and be successful. I’m fortunate that I receive disability benefits so I don’t have to fake it and boy did I ever fake it. I so wanted to be like everyone else by earning my own way in this world.

However, now that I’ve stopped “faking it,” I’m much happier. I recently had an expereince when I was talking to a man about his wife. I know both of them fairly well but I couldn’t remember her name and had to ask him what it was. Five years ago I would have faked it but then I just blurted out “Tell me your wife’s name?” He looked at me a little funny but I suspect he figured out it was an example of my TBI challenges.

I’ve also had many opportunites to tell folks what God has done in my life. Oh I may not do so directly but it is clear that God has been with me all throughout this journey and God is not going to leave me now! When I look back and see what God has done in my life, I am driven to serve God in the future.

Along with the picture printed above in the bulletin was a quote from one of Dr. King’s prayers. “O God, we thank thee for this golden privilege to worship thee. We come to thee today, grateful that thou hast kept us through the long night of the past and ushered us into the challenge of the present and the bright hope of the future. We thank thee for thy Church founded upon thy Word, that challenges us to do more than sing and pray, but go out and work as though the very answer to our prayers depended on us and not upon thee. Then, finally, help us to realize that we were created to shine like stars. Keep us, we pray, in perfect peace, help us to walk together, pray together, sing together, and live together until that day whan all God’s children, Black, White, Red and Yellow will rejoice in one common band of humanity in the kingdom of our Lord and our God, we pray, Amen.”

God has called those of us who have brain injuries to walk together and work so that others will not have to experience this same trauma. And if we meet someone who is a survivor, we are called to walk together with them for this is not an easy journey. However they,nor are we, ever alone.

What do you think about Mark’s three things we do in funerals? Telling the truth about our lives, lifting up the promises of God and being propelled forward? Can you relate to any of these in your life? I think this applies specifically to folks who have a disability or other challenges but it could also apply to anyone.

A New Year

Choir, cognitive overload;, cognitive overload; overstimulation, creative, disability, over stimulation, Uncategorized

WordPress for Dummies

I finally made the switch to WordPress. It is much easier to comment now so I do hope folks will take advantage of this. One doesn’t need to have a brain injury to comment but I really see this blog as a place where brain injury survivors can share their struggles as well as their joys and get support from each other.  I’m having difficulty figuring out how to add a picture correctly though.  I think this will get better with time.

For this first post on WordPress, I want to share a poem by Jan Richardson from Night Visions: Searching the Shadows of Advent and Christmas.

In the center of ourselves
You placed the power of choosing.
Forgive us the times
We have given that power away,
When we have sold our birthright
For that which does not
Satisfy our souls.
And so in your wisdom
May our yes be truly yes
And our no be truly no,
That we may touch with dignity
And love with integrity
And know the freedom of our choosing all our days.

When I first read this, I thought about how when I lived in Atlanta, I pushed myself way too hard. I chose to do things because I thought that’s what was expected of me. As a result, I often spent days simply laying on the couch “resting my brain.” I didn’t even need to use ear plugs for this because I was so tired, I simply slept. I always bounced back after resting but I did the same thing over and over again.

When I moved to Asheville, NC I decided to not become involved in anything. What happened when I did this? I got bored. “Why am I even bothering to stay here in this world?” I asked myself. “I’m not doing others or God any good at all so I should just leave and do everyone a favor!” However when I was having my better days, I realized doing this would hurt too many folks. Plus it wouldn’t be a good reflection on God for a minister to just check out of life!

So I made the choice to be as involved in my life as I can while being honest with what I’m able to do. I don’t believe God wants me to spend my days exhausted because I pushed myself too hard and got over stimulated. Nor do I believe God wants me to have to rest all the time due to cognitive overload.

You know what? I’m much happier now than I was before. I’m trying new things like singing in the choir at Grace Covenant Presbyterian and I’m taping into my creative side again. I’m taking an intense water aerobics class and I’m trying to write again. So who knows what this New Year will bring. I must say, it is rather exciting.

What sort of things are you looking forward to this year? If you have a brain injury, write about some of your struggles. Let’s see if the commenting part on this system is easier. It really is true that those of us who have brain injuries and other disabilities, need to share our joys and struggles with each other.

"People-First" Language

cognitive overload;, disability, organization, stress

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