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.


Advent, perfectionist, stress

Michael and I bought a Christmas tree yesterday from a lot close to our house.  After seeing the picture on the left, I realize I need to trim some of its branches.  On second thought, I’ll probably leave it as is to work on my perfectionism a bit!

I’ve always hated the Christmas season.  This year a couple of local stores opened on Thanksgiving night so that folks could begin there Christmas shopping! I hate shopping for anything and Christmas is the worst.  This year I’ve decided to get all the adults presents from an Alternative Gift market at my church.  I haven’t decided exactly what I’m going to get yet but I’m going to choose from Homeward Bound of Asheville, Veteran’s Restoration Quarters, Mark Hare, PCUSA Missionary as well as several others.

I have worried about my bare tree as well.  My husband, Michael, is really really swamped at work now so decorating it falls on me.  However as I was doing my Advent devotional this morning, I thought about waiting for a bit and leaving it bear.  After all, Advent is all about waiting. 

The devotional I’m using this year is Preparing for Christmas by Richard Rohr. He writes in his introduction, “Jesus identified his own message with what he called the coming of the ‘reign of God’ or the ‘kingdom of God,’ whereas we had often settled for the sweet coming of a baby who asked little of us in terms of surrender, encounter, mutuality or any studying of the Scriptures or the actual teaching of Jesus.  Sentimentality, defined as trumped-up emotions, can be an avoiding of and substitute for an actual relationship, as we see in our human relationships, too.”

Yesterday when we went to the Christmas tree lot, I saw the shining eyes of two little children as they took in the surprising and wonderful sights around them.  This is what Advent and Christmas is about.  As Mark Ramsey said in his sermon yesterday, “Advent is a yearly reminder that God is able to surprise us.  Perhaps we ought to think of church as training in the skills required for following this living, surprising, interrupting God!”

So with Richard Rohr’s devotional in hand, I look forward to being surprised this Advent season.



I have a subscription to The Sun magazine. (http://www.thesunmagazine.org/) It contains no advertisements and the stories and photography are wonderful. The magazine always contains a section called “Readers Write” where people submit a short writing about a certain topic. Often the stories affect me greatly and this month was no different. I’ve included one by Thom Kilts from the November issue below.

“Growing up in the projects, I saw two kinds of authority in the neighborhood. There was the authority of the gangs maintained through violence and intimidation. And there was the quiet authority of the monks at a little Tibetan Buddhist monastery down the street. The monks lived with the same poverty that I did and (I learned later) had witnessed more violence and experienced more injustice than I could dream of, but they had a stillness, a calm, an inner authority that told you not to mess with them.

Wanting the same authority for myself, I stayed out of gangs and became the first person in my family to attend college. I traveled to India, Nepal, and Tibet and was fortunate enough to have an audience with the Dalai Lama himself. After I returned to the States, I went to graduate school in Buddhist studies and then, through residency programs in clinical pastoral education (CPE), to becoming one of the first Buddhist CPE supervisors. Eventually I landed a job as director of spiritual care at a hospital,but I still felt as though I lacked true authority, the kind I’d seen in the monks in my neighborhood.

One day I began to have severe back trouble. It progressed until my entire body would give out and I was semi-paralyzed. There were times when I would vomit blood or lose the feeling in my feet. I might go from teaching a class to staring up at my students as they stood over me on the floor. I went in for surgery, but it didn’t help. I had to take prescription narcotics for the chronic pain and suffered the indignity of suspicious looks as I filled prescriptions for massive amounts of painkillers. All the while my condition continued to get worse.I descended into depression and hopelessness and was no longer able to work. I went on long-term disability and gave up my job. The insurance company turned my claim into a drawn-out lawsuit.

So here I am, just an unemployed sick person wondering how the bills will get paid, tasting the bitterness of poverty once again. My mind returns to those monks who lived down the street when I was a kid. They had an inner authority that shone through, a dignity that allowed them to face hardship with a smile. I wonder if I will ever find that source of authority myself.”

The issue of authority is a fairly large one in CPE. Chaplains learn about their own authority and what it means to have this authority as a minister. Although I haven’t lost as much as Kilts has, I could relate to his story. What kind of authority do I now have? I can no longer work as hard or remember things as I used to. I want to try and obtain “the inner authority that shone through” the monks as they did their work. This kind of inner authority only comes from above. As I wait this Advent, I will wait for this inner dignity that comes only from God.



The first day of Advent was this past Sunday. I guess I’m a scrooge because I don’t like this season. There’s too much fake happiness and high expectations. There is too much tinsel and Holiday madness. It’s difficult for me to find God in December which is why I don’t like this month at all. To top it off, I don’t even like snow!

But this Christmas season is going to be different. Worship at Grace Covenant Presbyterian Church put me in the right mood. We didn’t sing bright, catchy Christmas carols but rather the Advent hymns of expectation. I pondered a quote by Dietrich Bonhoeffer printed on the worship bulletin. “A prison cell, in which one waits, hopes…and is completely dependent on the fact that the door of freedom has to be opened from the outside, is not a bad picture of Advent.” I read it over and over again trying to understand for it seemed rather odd.

Pictures of the wise men, Mary and Joseph or the baby Jesus are often on bulletin covers this time of year. Instead, this order of worship had the picture of the clock printed above. What does a clock have to do with this season, I thought?

In Mark Ramsey’s sermon that morning he mentioned several questions that Jesus answered: questions about the resurrection and paying taxes being among them. “But when they asked him the Advent question – ‘When is God coming? What time is it really?’ Jesus said, ‘I don’t know.'” He continued, “When is the justice? When is the fairness? When is the peace? When is the food that fills every stomach? When is the water that quenches every thirst? When…is the joy? How do we tell time in God’s world? And Jesus said: ‘I don’t know.'”

However, we do know that God will come in surprising and strange ways. Mark said, “There is hope. There is tomorrow. There is good coming from the hand and the will and the heart of God! There will be justice. There will be acceptance and love. Prejudice will be washed downstream. There will be food on every table and children will live in safety and delight! God will come!”

So when is Advent? How do we tell time in God’s world? Jesus has said, “I can’t tell you how…God is full of surprises.” This gives me hope. I can’t do all I did before my TBI but God will come in unexpected ways. So this Advent, I’m going to be watchful and wait for my prison cell to be opened. And it will. Who knows what the future holds? This Advent, I will watch with great expectation.