The dichotomy of May

Day in and day out, words of encouragement and compassion make their way from my heart and flow like warm sugar from my mouth. People who have endured the worst that mankind can mete out sit with me and tell me about their odyssey of loss and survival. They are discouraged by the enormity presented in the task of starting life over.

I reassure them that although their path is arduous, it is not insurmountable. Things will get better. Have faith, feel what you feel, lean on the people who want to help you. Take your time. Take care of yourself. Sit and catch your breath when you are weary from the effort of rebuilding yourself. Understand that you won't make sense of the confusion for a long time; just be open to considering a different cultural point of view.

Today I stood in front of 20 social workers and interns for two hours leading a discussion on cultural considerations in the family dynamic. We talked about the refugee experience and the effects of trauma, relocation, and biculturalism on school-aged children. I explained how our expectations are deeply rooted in culture and personal experience, but through compassion, patience, and a setting aside of judgment, these social workers could facilitate a smoother transition for refugee and immigrant kids and their parents. "If you are not passionate about learning about the human experience," I said, "you cannot be effective in your work."

The presentation was well-received and many participants told me I had inspired them, struck an emotional chord in them, and reminded them of the value of their work and the gifts they possess and need to share. Several people thanked me profusely for sharing my knowledge, but more thanked me for being honest and soulful in talking about my own struggle to make sense of an often senseless world.

You have no idea how little I've shared. None at all.

Their words sounded like the dull, echoing thud of lead coins dropping into an empty vessel. I can talk the talk, but I am having some difficulty walking the walk when it comes to believing in hope. I am not sure that persistence and the belief in possibilities yields any return on investment. I am especially unsure that feeling one's feelings leads to anything worthwhile.

I got in my car and drove across town to the hospital for a status check with Dr. G and her nurse practitioner, Mary. Twenty minutes into the conversation, they told me they wanted to put me on a daily regimen of Acyclovir. "Herpes medication? Um, I don't have herpes." Are you kidding me? I can't tell anyone, ever, that I take lithium. I hide the medication in the back of a kitchen cabinet. I certainly will have to hide the Acyclovir, too. I don't want anyone to stumble upon it and come to any judgmental conclusions. Shit. Herpes medication??

Dr. G explained that this treatment was being proposed based on a theory that my shingles virus was still resident in a subclinical state causing nervous system inflammation and neural windup. All I heard was "...based on a theory. Some people think...anecdotal evidence suggests..." Where were my concrete answers? Why was I being burdened with illnesses that nobody could even prove existed? Why can't you fix me? Why can't anyone fix me?

As the conversation went on, it soon became evident that I had nearly exhausted my options for managing the multiple nervous-system maladies afflicting me. I expressed my frustration and dismay in not being a successful patient. I told Dr. G and Mary that I knew they were trying everything they could think of and I wanted them to see their efforts result in some measure of success.

Mary looked surprised. "May, we don't need the validation of you getting better. You haven't failed us--we've failed you. Medical science is failing you. We have so many patients who are so bereft of hope that they won't even try any of the therapies we suggest. You had 77 medical appointments last year. You are the research queen. You brought us articles and asked us to consider different ideas. You are doing your part. We couldn't ask you to be more on board as a patient." My psychiatrist had said almost the exact same thing, but he didn't have any answers, either.

I want to be cured.

The tears started rolling down my cheeks. "I hate this. I hate being in pain. I hate being told to have hope when nothing works. I hate being in constant, chronic, inexplicable pain that doesn't seem to have any definable cause. I hate that you're telling me that at this point, the best we can do is lidocaine suppositories on a daily basis. Is this it? Is this what my life is going to be? Didn't I go through this already with another illness?"

Mary asked me, "You take other medication every day; how do you feel about taking lithium?" I narrowed my eyes and spoke slowly. "I resent choking down every one of those pills. I will never get over it. I hate the illness. It embarrasses me. The medications remind me that I am mentally defective. Generally defective. I don't work right. It's not just the supposed bipolar; it's the whole damn body. The added insult is that I don't even have a condition I can discuss in polite company. It's all on me to carry my feelings about all of this."

My afflictions can be treated, but they will never go away.

Mary told me that feeling bad about feeling bad doesn't help me in any way. Still, I always feel like I must have done something wrong somewhere along the line to bring on these health issues. I'm sad. I'm frustrated. I've hit a dead-end and I have no idea how to feel OK about that. The well is empty. If my well of optimism and hope is tapped out, I am a hypocrite for suggesting to other people that perseverance and self-love will see them through impossibly difficult days.

I just want mine to be over. One way or another.