Soul Keeping - Perspective During Recovery

I am getting ready to move again, hopefully to my "Forever Home". I came across this paper written 7 months after a Traumatic Brain Injury. This was written in September 2005 for a Worship, Theology, and Arts course I took at Andover Newton Theological School. From the initial assault to my brain, it took over 3 1/2 years for me to fully recover from this injury. It is my testimony to faith in crisis.

Welcome to my world. It is nearly 7 months post accident (2/19/2005). According to the neuropsychologist when I got my evaluations results, 80% of survivors would have recuperated by 6 months. He expected that I would do fine, but overall it might take up to a year. My cognitive processing speed went from 87% in 2003 (a bit low for my IQ) to 39% by the end of March. This journey has been one I would not choose, one during which I have felt hopeful, blessed, beaten, sad, and always frustrated.

With the slowness of my recovery process, I have repeatedly had to readjust my expectations – to deal with this adjustment, I have re-entered therapy and see my therapist 1-2 times monthly. With God’s help and some major coping strategies, I have not gotten depressed. Overall, I think I have coped very well under extreme circumstances. I have kept my sanity, continue to be able to laugh, continue to feel connected to God. I need to laugh more and maybe have some fun. But I can at times play with my grandson, make funny faces, teach him to fake cough, and have him light up my heart with his smile or when sleeping on my chest. My son recently said to my daughter, “Grammy’s the Bomb!”

How have I done this? With God’s help for strength, guidance, and discernment. When I realized that I couldn’t process what was being said in class, initially I protested and tried to concentrate harder, but I couldn’t focus on the discussion and my notes were in shambles. The first week back was okay, but by the second week I slept for 3 hours after my 1st morning class. Bob Pazmiño and my MD suggested I take medical incompletes, so I would have wiggle room for assignments. Little did anyone realize how taxing class was for me. The neurologist described my processing speed as so impaired that someone would speak, I would try to encode what was said into short term memory, but couldn’t hold onto it long enough to encode it. When I finally accepted my limits, I figured that I could get the work done during class time at home and might be done by June with all 4 classes. Little did I realize…

What I will describe is a pattern of setting goals for myself, then having to readjust consistently. I think this has been vital in keeping my sanity; keeping some sense of hope. Disappointment was easier than giving up. I tend to be very optimistic generally, and very motivated. I am a survivor and a thriver – with faith and God’s help. I think it is vital in keeping one’s soul. For though the overwhelming exhaustion is disabling and permeates my entire being, it has not infected my soul. I truly believe that every sermon I write, every time I can muster enough energy to accomplish a task, every visit I make is God working through and with me.

Readjusting my goals and coping mechanisms have come naturally to me. Before I ever went to get the results from the neuropsychologist, I had implemented a way of life that maximized my ability to work. I was intentionally very isolated socially – conversation was too taxing, though I dearly missed my friends. I joint emailed, as trying to respond individually was impossible. As soon as I came home from work, I lay down on the couch and stayed there with massive headaches and fatigue, only getting up for necessities like supper etc. Essentially, I listened to my body. Frankly there was not much else I could do.

My initial goal of using Wednesdays and Thursdays for schoolwork went out the window. My headaches were much too invasive and incapacitating, my exhaustion too extreme, my concentration too poor. So when the neuropsychologist described that many head injury patients became concentration avoidant, he cautioned that I didn’t have the avoidance issue. I needed to rest in between periods of concentration. I had to go easier on myself. It made sense to me, as my body had been telling me the same thing – REST! He laughed out loud when I said I was scheduled to teach a trauma class the following month (thankfully with a co-trainer) and had a one-month internship scheduled for 2 weeks in June and 2 weeks in July at a church. I did it all, but it took it out of my hide. At the time I was sole supporter for myself – I couldn’t NOT teach when I would make in 5 hours, nearly 2 weeks pay. I took some vacation to cope with the extra demands of the workweek and church responsibilities. Actually I took Professional Education time to protect my vacation, as this internship was required by my Church and Ministry Committee as part of my education.

This has been another recurring theme sometimes gently communicated, sometimes bluntly. I had planned back in January on switching primary care physicians with my physical set for July. My new MD was the blunt one. After reading the results of my MRI (some of the lesions I had in 2002 got larger and there were some new ones) she emphasized, “Dianne, you BROKE your brain!” This was when she heard that I was working, doing the internship, was in the process of moving, and planned on taking 3 courses in the fall. She cautioned me that, even though I could be articulate, and didn’t have obvious broken bones in a cast, my brain had been broken – and that I might possibly fail class work.

It is difficult to live alone, work and have a head injury. When my rent was raised, my son and daughter-in-law offered to let me come stay with them this next year while I finished school, thus taking off some of the pressure. I was scared to death that the cognitive energy that it would take for me to pack would delay my recovery. By June, I had started exercising a bit, the headaches were less frequent, and I started walking. I prayed and prayed about this decision as I walked, about whether I could make the move. I kept asking God for help in discernment, and to help me to trust God more. I finally knew that it would be okay to move – but the packing and moving were another incredible stress and drain on my energy reserves. But, over time, I have realized that I could never run a household, work 20 hours, and go to school…never mind stack, move, heat my house with 5 cords of wood again next winter. I now have real heat – thank you, God!

My son’s offer was a gift from God and an expression of his love for me. I knew it. I needed a “soft place to fall” as Dr. Phil would say. But accepting that I am unable to live on my own is another loss – of my independence and sense of self, though admittedly a gain in family and ability to see my grandson change daily as he approaches a year old. But I now have a different relationship with my son. It’s weird when your son says, “Well you provided me a place to live as a child and while I was in college. That’s what family is for.” I am deeply humbled at my family’s graciousness – another theme in this trial that goes hand and hand with realizing that I need help and support. The day of my final move, I guess I must have been “ouching” a lot and Jeff yelled from the living room, “Will you take a vicodin?” The next day he brought me a Thermacare (?) wrap for my back – the thoughtfulness and caring brings tears to my eyes. I’ve known my therapist since 1982 – and seen her on an infrequent basis since 2001. Her comment to me went something like this, “Dianne, you’ve NEVER had anyone take care of you your entire life. It’s about time. It will be a big adjustment. But you’ll also learn what it’s like to live in a caring family.” Hit me over the head with a feather! ;) One of those light bulb moments.

I didn’t want to take medications. The neurologist planned on prescribing Ritalin in July. I put the appointment off until August 18th – as requiring medication might mean that my cognitive changes were permanent. The pastor, under whose mentoring I was doing the church internship this summer, knew of an Occupational Therapist who was highly skilled craniosacral therapy, so I started with her in the beginning of July. I wanted a chance for alternative therapies to medication to work. I am also going to a chiropractor, as he described for me, “I work on the boulders in the sacral system, Susan (Craniosacral OT person) works on moving the gravel.” Initially, I had no idea if this would help at all. The only thing I knew was that I trusted Barbara Black and she said I need a good craniosacral therapist and chiropractor team. So I have also listened to the advice I have been given. God has put good people in my path.

I keep going to 3-4 medical appointments weekly, spending the money in faith. For instance I was speaking with an old friend of my mother’s one morning, updating her on my condition. Her response was that I had had a really bad year. I said that I didn’t see it that way. I am alive! I may still be battered and bruised, but I have survived two ordeals that should have taken my life. I have a loving family who have taken me in. I have daily contact with my grandson, Joshua, who is a beacon in an otherwise bleak existence. I am still suffering with post concussion syndrome, and for the first time since the accident I am feeling real despair over the worsening of my condition. The comment to my mother’s friend was made when I was still struggling with a 3-day headache, a new medicine that didn’t feel like it was working, and an exhaustion that permeated my body on a cellular level that I can’t adequately describe. I have since been to a craniosacral treatment, my headache has lifted a little, and I actually bought a steak, because I had enough energy to cook it. (FYI, I started writing this on August 20th – since so much has occurred I am updating it on September 10th.)

Cognitively, I feel fairly clear right now, but can feel the pressure building back up as I type. I am listening to smooth jazz on the radio, as this is one of my new coping mechanisms and seems the major thing that helps me focus. I cannot look at the computer screen as it is hurting my eyes. (I’ve just figured how to turn my display brightness down from 90% to 50% - a little easier on my eyes.) I am determined to write this paper this weekend if at all possible. As my family is on vacation this weekend, it is quiet and less distracting for writing. Family life is VERY noisy & a difficult distraction for my head injury. I spend much of my time in my room. The “normal” Dianne would be taking care of Joshua, helping with dinner and dishes, but I am physically and cognitively unable.

Advice I have NOT taken until recently was from my friend at Voc Rehab to get on disability. The neurologist advised that I get a lawyer when he saw the neuropsych results last May. I had not done so as 1) I don’t believe in lawsuits if treated fairly, 2) I don’t want a sleazy lawyer who might manipulate, 3) I didn’t have the energy to find one, and mainly 4) I don’t want to compromise my integrity by suing unnecessarily. As I said earlier, during my final week at work my exhaustion was overwhelming. I was concerned that I was not doing my job as well as I have. I arrived and, within ½ hour, I had my head on the desk. I was practically comatose by 1:30, I was home by 3:30 – went to my room and lay down until supper – at which time I’d come out play with the baby a bit, say hello, and go back to my room only getting another brief energy spurt around 10pm. I have finally agreed to go on medication – and started a nonaddictive med that helps pilots and narcoleptics as of August 19th.

But I saw my endocrinologist that morning (8/19) for an annual checkup. She took one look at me, the slits I call eyes, the head that just won’t hold itself up but in spurts, and told me, “You need a lawyer! You don’t know how long this will last or what your future holds.” She knew of somebody – I spoke with him and have a meeting set for next week. One other benefit of this process is that I am incredibly patient at appointments – as long as I can hold my head up with my hand, sit down, or have a wall to lean on 2 hours is nothing. This is my reality and maybe a screwed up effort at humor.

So now there are instances of 2 other readjustments – taking medication and getting a lawyer. It is now September 10th. The medication has not worked except maybe to give me the slightest bit of energy – it’s not helping the headaches, nausea, or cognitive fuzziness. Some days I don’t drive because I feel it is unsafe. It’s been 7 months, and I’d only estimate that I am 20% better, if that. I am currently set for 3 classes this Fall & 3 in Spring – I need to graduate! I cannot take another year – financially, emotionally, or mentally. But I am very afraid that medication won’t work – it hasn’t thus far. My final admission – the one that pains me the most. I really am disabled. In my heart-of-hearts I know this to be true. I can’t imagine trying to be at school and working even while living in the support of my family. I am now on Temporary Disability Insurance (TDI). I have not worked since August 17th. So now I have to discern, what now? Maybe I can apply for disability and attend school so I can finish. The Church & Ministry Committee wanted me to finish my Ordination Paper and Profile this summer so I could be ordained as soon as I graduate – there is NO WAY that this is possible at this time.

The amazing thing is that no one at United Methodist Elder Care Center (UMEC) realized that anything is wrong. I told the Executive Director, my boss at The Chaplaincy Center, and a few trusted staff. But when I told someone, they were clueless – a testimony to God’s good work and my ability to pace myself and keep clear boundaries at work and at home. I listened to smooth jazz all day at work – especially when writing sermons or other liturgy. I adapted my ministry style to maximize my competence. I had someone take minutes when I chaired the Ethics Committee, as I could no longer facilitate the meeting and take minutes.

Yet, by August I noticed a huge change in my stamina. I admit I have made a couple of mistakes in details over the summer, but otherwise have maintained at a competent level – not my usual level, but a competent one. One blessing was I had 2 CPE student interns this summer – they helped with getting residents visited and allowed me to take Wednesday mornings for my church work. But having students also required better multitasking skills on my part than I possessed when they started – I have gotten better at multitasking as the weeks went on – but I never did teach them chart notes. Oh well, they didn’t want to learn that task anyway and it wasn’t required. I just used to teach documentation (in my role as Social Worker) so think it is a plus I have to offer students. I didn’t last a week beyond their departure before the job became overwhelming for me and the fatigue skyrocketed. Thus, my decision to try medications and to go on TDI. I refuse to work incompetently.

When I met with the President of The Chaplaincy Center’s (TCC) Board on August 23rd, it was clear to him that I am no longer able to function at my job. I will probably be leaving my position as Chaplain at the United Methodist Elder Care Center, as IF I come back cognitively and can graduate, I would need a full-time job anyway. It will be easier on the residents if they don’t get me back temporarily. But that will mean a lot more grief, a loss of my vocation (at least for now), increased isolation from my colleagues, and a HUGE loss for the residents I serve. I have asked TCC to wait until I met with the neurologist September 13th, before replacing me on a permanent basis. I am praying that a different class of medication will help me cognitively. But I think the writing is on the wall. TCC wants me to finish school and supports that priority. I am afraid that even school will be too much, so I’ve arranged to have the commuter room an extra night if I feel unsafe to drive. I pray that I will be able to graduate this year – I am SO close. I realize there is NO way that I will be ordained in June as both the C&M Committee and I had hoped. I currently am not competent to be ordained – not capable of even part-time work, never mind full-time.

Theologically, I have wrestled with many issues over the past six months. First, why am I alive when I could have died twice in 3 weeks (see journal 3/1)? And especially since my 33-year-old nephew and his 5-year-old daughter died in a car accident 2/22/99. Three days less than six years to the day of my accident. I am no one special – and certainly no better than they. I can kind of understand the burning log incident because, though dearly wanting to sleep, I did get up with the persistent God nudging – and probably saved my life. Do I believe in angels that “protected me” as one person suggested. Do I believe in the angel in white that one unusually perceptive person has seen accompanying me? Why would an angel protect me and not another? I can’t stand the saying, “There but for the grace of God go I.” Inadvertently, it declares that the other that one is comparing one’s fortune to hasn’t got God’s grace! I’ve had a tough year, does that mean God has abandoned me? NO!

On April 6th I described my extreme anxiety during my EEG in my journal. We had to stop twice, and the technician told me I had the option of coming back. I asked for a cup of water. While she was out of the room, I “prayed for the strength to finish the test – visualized hands – knew them to be my mother’s hands – looked from the hands for her face – looked into the face of black woman with beautiful eyes. I calmed and was able to sit through the last 10 minutes of the test…she was a deeply mothering figure with whom I felt at ease…God is working at the fringes of my consciousness, I will harvest in time.” God? The black Madonna…who knows? But I know that one minute I was antsy and panicky, the next I was calm and quiet. I have no answers – I probably never will, but if I do, it’ll probably be some inner knowing that evolves. The answers are elusive and too cognitively exhausting/impossible to force.

Do I believe that God sent me these ordeals? Absolutely not. Have I felt like Job? Yes. Have I felt assailed over the past months? Absolutely! Do I believe in the Devil? No! Do I believe in evil forces that exist – yes. Do I ascribe to the maxim that, “the closer you get to God, i.e. the more you are doing God’s work, the more you are assailed.”? I don’t know. On April 7th I wrote, “I certainly do feel ‘assailed’. I am also feeling held by God and community – it’s so much harder to feel this when I feel so lousy. I don’t believe God sends tests. I don’t ascribe to the devil theory either. My flash of clarity is evaporating. My head hurts with trying to grasp the insight, which effervesces before I catch it.”

On April 17th I wrote, “In all my recent theological questioning the following passage jumped out at me…To dig/search/excavate when you realize TRUTH is beyond your grasp = PARADOX! “So my advice is this – don’t look for proofs. Don’t bother with them at all. They are never sufficient to the question, and they’re always a little impertinent, I think, because they claim for God a place within our perceptual grasp.”[1]

Belief I can Find Answers STOP BEWARE Impertinence I end with a final quote from Gilead: “Theologians talk about a prevenient grace that precedes grace itself and allows us to accept it. I think there must also be a prevenient courage that allows us to be brave – that is, to acknowledge that there is more beauty than our eyes can bear, that precious things have been put into our hands and to do nothing to honor them is to do great harm.”[2]

I think this sums up my perseverance. I am afraid for my future, but I trust that I have been called by God to some purpose. I have no idea if the C&M will allow me to continue with the ordination process. I can understand this if I don’t recoup cognitively. I believe God will always use me and guide me in whatever journey, whatever abilities or disabilities that I may face. I have no idea where my path will lead, but I believe God will guide me if I am open. With God, I can face anything. As long as I can continue to cognitively function, I will try to acknowledge the beautiful, the awesomeness of God’s creation (including me) and to minister to God’s people. Asking for help and allowing people to minister to me and to receive with grace is God’s gracious gift to all concerned. I am but a cog in the wheel of God’s loving imagination. I pray that I will continue to listen for God’s voice and guidance, that I will obey as well as I can, and that I will continue to try to bring love and beauty to this world. Whatever happens after that, only God knows!

[1] Marilyn Robinson. Gilead. 179. [2] Marilyn Robinson. Gilead. 246.