Love and War – My Journey With MS

"A lie is still a lie, no matter the reason for telling it," Erick said to himself, staring at the beige and white building he prepared to enter. The January air was cool, especially for a South Louisiana day. The sun was bright, the air was fresh, and the sky was clear. The day should have been perfect.

The office wasn't bright, considering it was a doctor's office. The clerical girl was took down his name couldn't have much more than a teenager. He wonder to himself how he appeared to someone with so much life ahead of them. The world was her's to take. He hoped she would take advantage of it.  The waiting area was lit by sky-lights from the architectural dream of a building. There wasn't any music playing and only one wheel chair bound patient before him. He sat, but didn't bother with any of the reading materials that ranged from Sports Illustrated to Neurology Now. They have never made him wait more than five minutes for his appointments. Due to being in a medical trial, they make him feel like a V.I.P. As if on cue, Michelle opens the doors and said, "Come on back."

She is a tall brunette with big hair and big smile. Erick feels relief and apprehension. Though it's good to see her, he is unsure of how she is going to react to his upcoming explosion of truth. She greeted him with a hug.

"How are you?", she asked.

"I'm okay," he lied. The slight twinge of guilt he'd felt before had turned into a dull knife stabbing him in his heart. "We need to talk."

She smile morphed into a look of concern; he followed her into her office. She asked him to forgive the mess and invited him to take a seat.

"What's going on?"

"Michelle, I haven't been entirely honest with you about everything."

By that time, her reassuring smile had returned. Somehow, that made his guilt even worse. He turned away and stared out  of the office door and watched the young hopeful reception go about her daily duties.

"The truth is," she started. "I am completely miserable. You know my situation. I'm a single parent and everyone depends on me. I feel so overwhelmed by life and everything else. I feel like I'm at my breaking point, but I'm the rock that keep everyone else together. It takes everything I have to get out of bed in the morning to get my kids off to school. I'm depressed beyond description and I have no energy. So, I guess what I'm saying is that I'm not alright."

Erick wasn't sure what he expected her to say.  She was the first person he had been completing honest with in a long time. In his mind, he was a liar and a fraud. He placed walls around his heart and his life and no matter the circumstance, he made a point to let everyone know he was alright.

"I'll be fine," he thought.  Sometimes he even believed it, but those days had become few and far between. He couldn't blame the numbness in his heart on the multiple sclerosis. No, losing his father, wife and grandfather in the span of eight months took that credit. Being a husband, father and caregiver stretched him so thin, he couldn't be real with anyone. He had people who depended on him so he had to be alright.

"I thought you were going to tell me something bad." she answered.

"What?"

"Depression is very common in people with MS. In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness. You have no reason to feel bad."

He sat there totally vulnerable and transparent and heard the words he needed to hear.

"You are okay. We are going to get you through this."

Maybe for the first time since his diagnosis two years ago, he felt like things were really going to be ok.

"Are to taking an antidepressant now?" she asked.

"Celexa."

"Ok, we'll talk to the doctor about that."

"I know that I have so much going on, but I should be happy.  I'm finally writing full-time and although I have two books coming out this year, I don't feel like I'm capable of being happy."

"And that makes you feel guilt too."

"Exactly! I know I have it better than so many other people with MS. No one can look at me and tell I'm sick. I'm so thankful for that, but I feel like I'm dying inside."

"Are you still on the Rebif?"

"Yes."

"You only have three more months before you can try the Gilenya."

His main MS medicine is Rebif. Whenever he opens his closet door, there are two tackle boxes of meds and vitamins he takes. But then, there is the needle. He administers himself painful shots three times per week. The beta interferon is used to prevent episodes of symptoms and slow the development of disability in patients with relapsing-remitting multiple sclerosis. It is not known how these interferons work to treat MS. That's a scary thought by itself, but the main side effect of the drug is depression. After six months on this medicine, he'll be allowed to try Gilenya.  It's an oral medicine that blocks potentially damaging T cells from leaving lymph nodes, lowering their number in the blood and tissues. It may also reduce damage to the central nervous system and enhance the repair of damaged neurons. At the very least, he know what this medicine will do to his body and there's no prepping to take a pill.

"Let's see if the doctor is ready for you," she said as she walked by and patted him on the shoulder. "Just tell him everything you told me."

"I'll be fine," he thought.

Filed under: Writing