The Inner Voice

I have a voice that speaks whenever I suffer extreme stress or sorrow. She is a tiny voice that whispers in the back of my mind. She lists options that are available and the rationality behind each point. What will the outcome be if one option is chosen over the other? What are the outside factors that could have an effect? What would be the easiest and least painful solution to the problem at hand? Her voice talks me through. Sometimes the time that it takes for that voice to finish talking is what saves us from unspeakable acts.

I was sitting on the couch when the call came at four o'clock on April 12, 1998. The sun was peeking though the slits of the living room blinds. The dust motes danced in the rays that were able to sneak past their guard. Baby Justin would be four months old in six days. A week had passed since the blood had been taken for the genetic testing I had requested.

"We should have the results in two weeks," Dr. Arlen said.

"But you think he looks strong?" I said hopefully.

"He really is too young right now to be able to tell by watching him but I think he looks normal."

So the waiting game began.

In the bright stillness of that afternoon, the phone began to shriek. I picked up the receiver and placed it lightly to my ear, excited at the prospect of adult conversation.

"Hello?" I said brightly.

"Yes, may I please speak with Joan Smart?" replied the voice on the other end.

"I'm Joan."

"This is Amanda, Dr. Arlen's assistant. I was there for your appointment." Why was she calling after only one week? Could this be a good sign? My stomach clenched into a hard knot as I fearfully listened to her voice. This was the call that was going to change my whole family's life. Did she really think that I would forget who she was?

"We have gotten Justin's test results back. Are you alone?"

I knew in that moment my life had changed forever but not the way I had wanted it to. I could not find my voice for a moment and struggled to catch my breath.

"Yes. Yes I am." Why did she need to know that?

"I'm sorry but Justin and you both have the deletion on your dystrophin gene."

No. She was wrong. Justin's gene was not defective. I refused to believe that his muscles were being destroyed every day, every moment.

"Are they sure? Can they check again? Maybe they were wrong or it was someone else's test." I was babbling and every word that came out of my mouth seemed incoherent.

"Yes, they did the test twice. I'm sorry." She is sorry. Well, isn't that just what I need?

A low moan started somewhere down in the primordial part of myself and escaped from my lips. It could not be stopped. I did not want it to stop. I was foggily aware that I was still holding the phone in my clenched hand. I raised it to my ear and listened without any interest to the disembodied voice.

"Is there anyone that you can call to be with you right now?" Amanda said. Did she really care?

"Yes, I have someone." But did I really? I did not want anyone around me telling me how sorry they were and how it was God's will and test.

"If you need anything, please call us." Sure I would.

"Thank you. Bye." And that was all. My new life as a mother with a disabled child had begun and it did not seem to be going in a good direction.

My eyes rested on the baby on the floor, his eyes wide and clear. His sweet giggle and coo drifted up into my ears. Tiny arms and hands stretched out to me but my eyes were blind to them. Could this child really be mine? What had I done to him? I ruined his life and passed on a defective gene that would put an end to his physical independence. Those tiny arms would weaken until one day they could no longer hold a pen to write or a fork to feed their owner. Those tiny legs would soon be imprisoned in cruel braces, finally banished to a wheelchair, useless and dead. I was a monster.

I am not sure how long I sat there before I heard the sound of crunching of the gravel under tires. I stood up and walked over to the door and touched the handle. In a moment, I was going to change my husband's life and it was my fault. Frightened, I turned the handle and stepped into the evening light.

"He has IT." That was all. Each word was like a dead weight falling between us. What else was there to say?

I fled back into the house and into my room in a wild and fearful panic and shut the door behind me. It was dark, like a tomb. The gloom pressed down on me as I sat on the bed. There was a screaming roar in my head that drowned out any other sound. The very roots of my being were torn asunder and replanted in the garden of suffering. Pain stabbed at me with its dull and horrific knife, leaving my heart a gouged and bleeding mess.

Suddenly, unbidden, a soft voice broke through the chaos and began speaking to me. She did not sound happy or sad, just patient.

"So he has IT," she said.

"Yes, he does," I replied.

"What do you plan on doing?" she asked.

"I don't know. What am I supposed to do? I can't make him better. If I could, I would," I said.

"I know that. But that's not an option. So what can you do?"

There was silence for a moment and I waited to see what she would offer. After a few minutes she began to speak again. I was relieved.

"Ok, let's think about this. You could go to the doctor and get a prescription for just about anything. You could go and talk to a psychiatrist and he would give you valium or maybe something stronger. Then you would feel better." I thought about this for a moment. This idea did not seem too bad. I pondered over it for another moment.

"No, I don't want to do that. I'll end up addicted. What am I supposed to do? Take them all the time? When the feeling wears off, I'll still feel bad. No, that isn't for me." Silence. Was I going to be difficult about this?

"You could just leave. Just leave Dan with the baby and go." I was baffled. What was she talking about?

"I can't leave! What would Justin do without me? He needs me. What would my parents think of me? I would never be able to face them again. No, No, I can't leave." That was the end of that option. It was put up on the shelf of unused plans that were either too crazy or frightening to try.

It was quiet again as she contemplated other ideas. I waited on the bed in the prison of my room. I heard faint noises in the living room as my husband moved around. I did not care what was going on or if he needed me. I was not going back in there.

"How about if you just ended it? You know. Find a gun, maybe some pills, something like that. Then you wouldn't have to deal with IT," she stated matter of factly.

My breath stopped. What comes after death? Did I want to find out? I was afraid of pain. I never welcomed it.

"That shouldn't even be an option. I cant' do that. I don't want to even hear about it again." This Pandora's Box was too frightening to open or even peed into. Up on the shelf it went to collect dust for the rest of my life.

"You are not giving me much to work with. All that's left is for you to deal with the situation, with IT. Can you do that?" she questioned.

I thought about that for a minute. My aunt had dealt with the same situation I was given. She lost her beautiful son two days before he turned seventeen. My mother was still dealing with the same unfair hand I was dealt. At twenty-five, her son was completely dependent on her for any physical need that he had. There was the respirator, manually pumping phlegm out of a congested chest, feeding, bathing, and dressing to contend with. Could I do it? Would I do it? I had to choose. I was looking at years of suffering and pain ahead of me. There would be emotions that would remain raw for the rest of my life. I would watch the monster eat away at the strength of my son and there would be nothing that I could do to stop IT. She was asking me if I could do the impossible.

There was a soft knock at the door. It was barely above a whisper. I ignored it for a moment. There was no more time. I had to decide what I was going to do.

"Joan, honey?" the sad voice beyond the door said. I did not answer.

"Justin is hungry. He needs you." Of course he did. I was breastfeeding. I was the only one who could provide the nourishment the Justin needed at that moment.

I did not want to leave the dark of that room. I did not want to feed a baby or be a wife, or deal with IT, but I had to decide what I was going to do. That voice gave me the options that I had to choose from. But the voice also gave me one more thing that I desperately needed. Time. It was the time I needed to gather my senses around me, time to try and think about the others involved besides myself and time to begin the grieving process for the loss my family experienced. I needed those two hours to think. People need to listen to that voice, listen to its reasoning and not give in to the first emotion that springs up from the well of pain and despair. I stood up, pulling my body slowly and stiffly off the bed, swaying slightly before finding my balance.

"I'm coming," I said.