Wednesday, February 10, 2010

Unspoken Words

Dear Lois,

Last night another church here in East Texas was burned down. This makes the tenth church on the past month. On the way to get breakfast before I headed up to the Hospice center, I passed by one of the churches that was torched last week. It doesn’t make any sense. Right now, in this phase of my life, I’m mad at God. I’m mad at life. I’m mad at the horrible disease Amyotrophic Lateral Sclerosis and the fact that it takes its victims one piece at a time. I’m mad that Mazha will never see my little girl grow up and jealous that Simone had that opportunity. While I have this anger in me, I would never demolish the faith that others have. I wouldn’t take their feelings of peace and comfort away from them. Watching the news, I saw one of the local pastors recite 2 Corinthians. "We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed.” I envy him - for someone who has gone through such heartache to have so much optimism. For me… I am crushed. I am in despair. I feel abandoned and destroyed.

Walking up and down the halls of the center, it’s nothing but silence. You pass people and you glance at them, you may nod, but you don’t say anything. No 'hello.' No 'hi.' No 'how are you?' All cordial greetings. You know how they’re doing. The same as you are. You see them in the kitchen or the soda shop and again, a nod. You see them on a couch in the hallway. Exhausted. Worn out. Emotionally shattered. They look up and again, it’s a nod as you’re biting your lower lip. This says, “I know. I’m sorry.” When they see Kensington trotting down the hallway, they finally smile. An older couple stopped me in the playroom today and they wanted to hug her. Her mother was in here and she said she needed some brightness in her day before she left in so much pain. It tore me up inside.

Dr. Ferguson came in to check on Mazha. She moves her lips to talk, but we can only make out every other word, if we’re lucky. I’ve started to hold her hand and ask her to squeeze it when I get to the letter of the word she’s trying to say, and then I go through the alphabet. I finally figured out what she was asking.

“How long do I have?” Again, I feel crushed, in despair, abandoned and destroyed.

“Do you mean in here? Or do you mean in general?”


“Short months”

“Short months?”

“It could be a month. It could be two. It’s not going to be a year, or even six months. It will be short months. But that is going to depend on you. If you give up, it will be sooner. If you fight, it will be longer. But I will tell you what… I’ve only seen you for two days and you haven’t given me much to go on. Why don’t you ask me in two weeks and I can give you a better answer. You’re going to have good days and you’re going to have bad days. Don’t focus on the bad days. Don’t take things one day at a time. Focus on a five-day span. You mave have a bad day or two, but focus on trying to have a good day at the end of that time. Or focus on the good day that you just had. I have bad days… I sleep in late, I call in sick to work, I move slower than normal. I know it’s a bad day, but I don’t let ruin my entire outlook. I focus on what I’m going to do in the days ahead.”

She was then given some additional meds through her feeding tube to help with the pain. She quickly feel asleep. I later found out that Dr. Ferguson lost her grandfather to ALS, so she has taken a special interest to mom because of her diagnosis. “This is the fastest progression of the disease that I’ve ever seen or heard of. I hope I didn’t lie to her when I said short months… but she doesn’t look good." And she doesn’t.

In the early afternoon, I bring Kensington back to Simone’s house. I ran to McDonalds to grab dinner for Fazha and Me. When I entered through the front door, a young man, about my age, was sitting on the floor. I’ve seen him since Sunday. We’ve both wandered into the kitchen in the wee hours of the night in our PJ’s to get something to drink and in the early morning hours to get coffee. It seemed like we were on the same time schedule. Again, each time we’d just nod. It was the unspoken words that we all shared in common. He was on the phone holding back his tears. I overheard him say that ‘she passed twenty minutes ago’. As I turned the corner to go into Mazha’s room, I can see the entire family, and what looked to be the entire congregation of their church, standing in the hallway. One-by-one they were going into room 106 to say their goodbyes. She was finally at peace, with so many left behind in pain. It’s funny… one of the churches I passed on the way back here (we call it Church Boulevard because you have 15 churches in a two mile stretch, and a total of 200+ in town), had the following on their marquee. “Heaven: No Tears. No Pain. No Death” and yet, in one room tonight, all three were present.

I stayed the night on the cot, again, you kept reassuring me that everything would be okay. The sweet smell that was vacating you, comforted me. Mazha tossed and turned all night. She was in so much pain. Even though the wonderful nurses would come in every two hours, it seemed like every other hour I was standing at the nurse’s station asking for something else. Help moving her. Help adding pillows under her. More muscle relaxers. More pain meds. I didn’t, and haven’t, cared how I’ve looked. Tonight was my UVA shorts, slogan t-shirt and socks. Hair in a hot mess. Unshaven for the past week. They’ve seen it all before, I’m sure. Every time I would come out, they’ve gone to get another nurse or nursing assistant to read my shirt: Fiscally Republican, Socially Democrat, Sexually Liberal. One of them gave me a high-five. Something I wasn’t expecting, or desired, at 3am. I would have changed it, but the only other thing I had was covered in cheese ravioli from a little chickpea who wanted to share her lunch with me.

The room has been set to freezing, by Mazha’s request. Around 5am, she said her legs were cold, but she still wanted the fan on and the temperature at stay set at the level it was at. So I shared you with her. I wrapped you around her legs hoping you would give her the same compassion as you’ve given me.

Lois, who were you? How did you pass? Why did you choose me? Us? I don’t know these answers, yet, but I can only say thank you.

1 comment:

Getrealmommy said...

I don't know you, but I have started following your blog. I am so sorry for what you are going through. Your writing is beautiful. Thank you for sharing such personal thoughts across cyberspace. Puts everything in perspective.

My thoughts are with you, a total stranger going through something that at some point we all have to face in some way or another. I have not been there yet. I am lucky.

Be as strong as you can, and love as you do.