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.