“Hope Arises!”

Last Tuesday there was an Earth Day Celebration called “Hope Arises” at Pritchard Park in downtown Asheville.IMG_20140422_184959_982 Here is a picture of the clergy present who signed a letter to Duke Energy about closing their power plant. I wore my red stole as I did for the Moral Monday protests because we need the Spirit to descend upon us as we work to stop climate change.

Dr. Malory McDuff

Dr. Malory McDuff

I sometimes lose hope around this issue. Many folks in the faith community don’t really understand climate change. Katharine Hayhoe in her chapter of the book Sacred Acts edited by Dr. Mallory McDuff, gives three reasons why this is true. 1) The evidence is not easy to see. 2) Confusion is rampant 3)The truth is frightening. (see p. 77-83 for a thorough discussion)

However, this rally really did give me hope. It began with Dr. Richard Fireman the very first speaker who reminded us that when many people pass in the same place on a piece of land, a road is made. We are making a path as we act together.

Amanda Hendler-Voss also spoke. I use the word “spoke” but she actually preached. She suggested that Tim Moffit and Lynn Good, the CEO of Duke Energy, may have gone to church this past Easter Sunday wearing their Sunday best. She continued, ” The earth has been proclaiming the good news of Easter for billions of years – the good news that death does not have the last word; that new life is always breaking forth; that the dawn always comes riding in, even on the heels of the deepest, longest night.”<a

some of the crowd at the rally

some of the crowd at the rally

On Tuesday, hope did arise in me. It also reminded me how much I need hope in other areas of my life. Hope arises when I see how far I have come since my brain injury in 1996. Hope arises when I see the road ahead and I know each step will be better than the one before.

As Steve Runholt said, “Hope always arises.” Yes it does.

“Always Go to the Funeral”

The sermon on Palm Sunday (April 13, 2014) at Grace Covenant Presbyterian Church was called “Always Go to the Funeral.”   I remember thinking, “Okay Mark (Ramsey), what does going to a funeral have to do with Palm Sunday?” I decided to go with it anyway for he often comes up with thought provoking titles.1538667_719948604693465_2194630115622714483_n[1]

He began by telling a story about the English poet John Milton. Milton tried to write a poem about the suffering of Jesus but all he could talk about was how HE felt about the suffering of Jesus so he gave up. Mark then outlined three reasons why it’s so difficult to be in the presence of anyone who suffers. I related to the first reason.

I can’t count the number of times I’ve told folks who know about my brain injury that I probably won’t remember their name. Often they say “I know how you feel because…” and then they launch into a long story about their own difficulty with remembering names. The problem is, they probably do not forget someone’s name after knowing them for a number of years which happens to me all the time.

It happened just his morning when I took my high intensity water aerobics class at the YMCA. A man whom I know at GCPC came for the first time and I wanted to introduce him to class members. The problem was, I couldn’t remember his name. I’ve learned how to hide my name recall issues but I’ve decided when it is appropriate, to ask their name. The first time I did this, the person was a little taken aback. He wasn’t rude (thank heavens!) and because of my honestly, he learned a little bit about some of the challenges of brain injury.

Mark pointed out that the only people Jesus knew who didn’t abandon him that last week was the women. When Jesus was crucified, his acquaintances, “including women who had followed him from Galilee, stood at a distance, watching these things.” (Luke 23:49) The women were the first people to visit him at the tomb. (Matthew 24:1, 2) I believe the reason for this was the women knew what it was like to suffer. The women knew what it was like to be separated from society. The women knew what it was like to have no power. (Yes, while it is MUCH better in our day, we still have a long way to go!)

The title for the sermon comes from a story told by Deirdre Sullivan and her philosophy to always go to the funeral. She wrote, “…I think a personal philosophy of going to funerals … means I have to do the right thing when I really, really don’t feel like it…I’m talking about those things that represent only inconvenience to me, but the world to the other guy. In going to funerals, I’ve come to believe that while I wait to make a grand, heroic gesture, I should just stick to the small inconveniences that let me share in life’s inevitable occasional calamity.”

In his sermon Mark said, “Sharing in life’s occasional calamity is what the church is supposed to be about. Isn’t that where the promises of God get their strongest test and their most prominent work out?” While this is true, during this Holy Week I want to celebrate all the folks who have brain injuries and how much you mean to me. I also want to celebrate what we mean to each other for unless you have been through it, you can’t really know what it is like.

I’m looking forward to attending the Institute on Theology and Disability this year. It’s a place where folks with disabilities are given a voice. We’re taken seriously whether we have had theological training or not. Many of us have suffered and in suffering, the Holy is found. So I am going to the funeral this week. I hope you’ll join me.

 

Care Partner

I’m making plans to attend the Institute on Theology and Disability in Dallas in June of this year.  Although it is an expensive trip, I really want to go. It’s one of the few places where I feel valued for my insights as a person with a disability. I know I am respected for what I do but sometimes I don’t FEEL valued for what I have to offer. There I felt valued and respected and it felt good.

bookI am reading Living Gently in a Violent World: The Prophetic Witness of Weakness by Stanley Hauerwas and Jean Vanier with an introduction by John Swinton. John spoke at last year’s Institute and he is wonderful. Prior to becoming a University professor, he worked as a psychiatric nurse and then as a mental health chaplain working “alongside people with various forms of mental illness and intellectual disability.” (from his introduction)

I love the way he described his work. He didn’t write, “I helped people who had intellectual disabilities” or “I served folks with various forms of mental illnesses.” Instead, he wrote, he “worked alongside people ” who have them. This is what those of us who have disabilities really want from our community. Sure, we need support but we don’t want to be belittled or “looked down upon.” Our disabilities have allowed us to gain deep wisdom. If folks would stop trying to “help” us but really listen to our actions, words and deeds, we would have much to offer.

As much as I loved the Institute last year, it was rough for me. Dealing with the sounds in the noisy airport, bus and hotel (overstimulation) weakened me. Being in a different environment threw me since change is hard for most brain injury survivors. I need to have my environment exactly the same or I become cognitively overloaded.

By the end of the week, I had pushed too hard and began acting strangely. One night I called the director at 2 AM and he met me in the hall wearing his robe. Who knows what I had on! J I roamed the hallways some nights and then forgot where my room was. The hotel staff wanted the director to hospitalize me which he really didn’t want to do. At one point, I got so tired I simply lay down underneath a table to take a nap. It’s all a blur but it got to the point where he had no choice but to hospitalize me.

It was quite an experience which I may write about later. To make a long story short, the hospital had to call my husband back in Asheville to come to Toronto and get me. I really didn’t know much about what was going on other than I remember being really, really tired. It was actually funny because when I began to be more aware of my surroundings, I wanted to get out of the hospital. However, since it was an involuntary stay, I had no choice but to wait for Michael.

Michael is forever calling folks and then turning off his cell phone. I tried to call him but he never answered. I started to get concerned and called Mark Ramsey, one of the pastors at my church but I couldn’t get him either. It turns out, Michael figured he had 48 hours until I could be released so he decided to turn off his phone and go to a Quaker Meeting in Toronto! When he finally turned it back on, he had quite a few frantic messages – at least mine were frantic.

I must admit to some embarrassment about attending this year especially since Michael will come with me as my “attendant.”   I’m not happy about this but I know deep down I need someone to be there with me so last year’s escapade doesn’t happen again. One note about language. I HATE the term “caregiver” and “attendant” isn’t a whole lot better. The term I prefer is “care partner.” Michael isn’t my “caregiver.” He’s my partner and it seems to me this is a much better word for an adult who needs a little help.

In spite of my embarrassment, I’m going to attend with my head held high. People need to know what can happen when someone with a brain injury (or any disability) pushes too hard. People also need to know that it’s okay. The only way they can learn this is if I accept what happened, make the necessary changes and then move on.