by Ginnie Horst Burkholder
I took a four-day reprieve from seeing Nelson recently. I did nothing out of the ordinary – just the things that get shoved to the bottom of the list on ordinary days.
I carry a small notebook in which I write what I need to remember for each day: where I need to go; what I need to pick up, take along, or deposit; the time of my appointments; and the time to take my antihistamines, if needed. Everything I need to remember is in my notebook.
Toward the end of the Saturday during this four-day stretch away from the nursing home, I looked at my notebook and saw nothing written in it, yet I had been in motion all day. I wrote in big scrawly letters, “Clean everything. Don’t go anywhere.” It’s what I’d done, and it felt good.
On Day Five I went back to see Nelson and experienced something quite familiar by now: a wave of disbelief at what has happened to him. Nothing had changed from the last time I’d seen him. But over the years, I’ve discovered that part of this journey is feeling loss wash over me again and again. Those moments come unpredictably and periodically, triggered when a flashback of memory from years ago hits me, or when I observe someone else’s life looking like I thought ours would, or when I’ve been absorbed in a focus away from Nelson.
In the early years when Lewy body symptoms began to reorder our lives, there was so much grief and confusion. In the summer of 1995, Nelson had finished his twenty-first year of teaching in the same elementary school building. Floundering for some direction, I called the principal to see what she had observed. Nelson was always well liked, but the principal began to relate her conviction that something was wrong. “He goes through the lunch line every day and to the teacher’s lounge, and then every day he has to go back and get his fork,” she told me. “Don’t let him come back until he gets help.” I asked if she would meet with us so that she could be the one to tell him this. She agreed and tactfully but clearly told him he needed to find out what was going on and get help before he returned to teaching.
A few weeks later, we sat under our maple tree husking an abundant supply of sweet corn from our garden when he casually said, “I think I’ll go back to teaching in the fall.”
What should I do? Is God hearing me? Who is this confusing person I’m living with? I was caught in a spin cycle of fear, disbelief, and anger at my circumstances and at the position I was put into in our marriage relationship. I had to repeatedly tell him he couldn’t go back, and this scenario played out at intervals over the years. In those times I felt like I had become parent to my spouse.
In 1997, with the finality of the LBD diagnosis, the waves of grief became brutal and overwhelming. More questions erupted. I had gradually begun to take on responsibilities I did not want for everything that did or did not happen in his life and mine. These waves took me out for days and weeks at a time. I functioned, but I was crumbling inside. My toolbox for dealing with what was happening was not well equipped. I hid the fears, swallowed the sadness, displaced the anger, and became stuck in disbelief and shock.
The grief was complex, complicated by a tangle of confusing emotions and questions. How can this be happening? How can I accept this? Who am I – parent or spouse? What happened to “do right and everything will be all right”? This isn’t right by any definition I know. I need him. I need him to be capable. He wanted more than anything else to believe he was capable. I didn’t want the job thrust upon me of taking away what he resisted giving up – such as driving, teaching, and even communication.
We took a mower part to the parts store, and as we stood at the counter the male attendant kept looking at Nelson and talking to him. I had removed the part. I had the part in my hands. I didn’t want this job. But I had it. I knew what was needed. Nelson didn’t, but he needed to think he did. He inaccurately explained our problem to the Parts Guy. I wrestled the conversation away from Nelson and eventually made my point without actually saying, “You have to talk to me.” It hurt me for Nelson. It made me angry for me. It wasn’t fair.
I’d lived a good part of my life avoiding encounters with disability. Disability made me uncomfortable. I was afraid of it. It didn’t look nice. It made people move away. It was something I kept as far from me as possible. Now I was living with it and couldn’t find any way to turn it around. I had loved Nelson’s capability. How could God let this happen? How do I weave this turn of events into my faith? Give me back my husband. The confusion was massive and all encompassing, and the shock and grief matched.
Acceptance evolved slowly with assistance from counselors, friends, and mentors who helped me to look at my beliefs. Being “good” doesn’t mean “bad” things will never happen. People with illness or disability are of no less value than healthy people. I’m capable of a lot more than I think. I don’t have to do it alone.
Acceptance grew as I added new and improved tools of coping. I’ve learned to ask for help. I’ve learned to speak my needs. I’ve learned to be more truthful to myself and others. I’ve learned to pay attention to what I tell myself about things. Most days, I’ve stopped telling myself that I don’t have choices, and I can now tell myself I have choices I haven’t even thought of yet.
Today the grief is cleaner, not as encumbered by the beliefs that are root to resistance. Now waves of sadness wash over me and are often quickly gone. The grief colors my life but doesn’t overwhelm or confuse me as often.
Acceptance doesn’t mean I never feel sad. It just means I don’t resist the sadness when it comes. Acceptance is hard won. It has to be worked at and nurtured. It is sadness for a loss without the encumbering denial, anger, fear, bargains, and resentment.
Acceptance is like a bath. It feels all clean and invigorating, but as sure as you are living you will run into some dirty stuff again; you will fall back into an old pattern of coping or into an old belief.
Sometimes we need to go through the washer of life, through the agitating pain, and through the soggy grief. If we can let life clean us up, change old ways of thinking, adjust expectations, clean everything, not go anywhere every so often, not run from the process, then we can experience a cleaner grief – we can experience acceptance.
© 2011 Ginnie Horst Burkholder
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