Monday, December 10, 2012

Turning a Corner

As more and more people began to find out about my "condition," I started to realize not only how difficult it was for me, but also how difficult it was for the people around me. My husband has been fantastic. There are times when my feelings are hurt because of a look I took the wrong way or because I wanted him to respond a certain way and he didn't. Through all my crying and all my anger, he kept me sane and grounded.

The effect I had on other people was something I had never experienced before. Perhaps those of you who have had to tell people you have cancer, or ms, or some other much more awful disease can relate. When you tell people what you are going through, they just don't know how to react. They don't know what to say. And the truth is, there is no right thing to say. When someone tells you they are going through something painful, do not think you have to find the "right" thing to say. Often, just say what is on your mind. Feel free to ask questions, feel free to say "I'll pray for you." The truth is, we have no expectation of how you may or may not respond. Many times, I was telling people not because I was hoping to receive certain words in response, but because I was trying to explain why I was wearing a hat in the office or why I refused to take my hat off in the water. I didn't need a response, I just wanted people to know so that I didn't have to see the looks of curiosity. 

However, I will recommend that you do not say something along the lines of "It's ok. Everything is going to be fine." Don't say or promise something you don't know as truth. You see, those are words of hope and those words are reserved for those closest to us. When I am at my lowest, and I'm curled up in a ball crying on my husband's shoulder; these are the words I need him to say to lift me out of that dark hole. When strangers use words like that, it sort of dilutes the power of those words and subsequently they lack strength to pull us out of distress. 

When people reacted to my news, I was pleasantly surprised by how many people offered words of help. I had several people offer up possible solutions and treatments they had heard of. One friend even found a local support group to help me through the emotional strain I was under. I was surprisingly shocked by the words of encouragement and support I received. One day, my mother-in-law approached me with some interesting news. It turns out, a cousin of my husband's had been dealing with alopecia and was receiving treatment from a doctor in downtown Dallas. She was seeing improvement and passed the doctor's information on to me. 

I was nervous to visit Dr. Cruz. So often I had been told there were no answers and no solutions. I was scared that another disappointing visit would plummet me into disrepair. I sat in the patient room, waiting for him to walk in. My feet were dangling from the bed and I stared at them with apprehension  What if he told me the same thing as everyone else? This was my last hope. 

I looked up as the door opened and in walked... wait... was that the guy from Hangover? 

No... this man was a bit older. But the silver dragon chain around his neck and the wild, dark hair, certainly had an uncanny resemblance. I was supposed to take this guy seriously? He walked straight up to me, looked down on my head, and then stood back, wrapping his arms around his chest. 

"You have something called alopecia," he said. 

Oh, great. Really? Thanks, genius. Tell me something I didn't know. 

Then, he really did began to explain something to me I had never heard before. "You see, we don't know much about the disease. Many researchers have tried to find out more, but nothing has been definitive  I will tell you what I believe based on my findings and the most credible research I have read. This is an autoimmune disease. Your white blood cells are supposed to attack foreign substances. They are supposed to protect you from illness and things that are attacking you. However, for some reason your white blood cells are attacking your hair follicles. We need to change that behavior, so what we will do is put a chemical on your scalp that will cause your white blood cells to attack it and thus leave your hair follicles alone. I will leave you with some paperwork to read over and come back in a few minutes to find out if this is what you want to do." 

With that, he left the room. I was stunned. Wait a second, someone just actually explained what was going on with me and it made sense. But then, what was that? A chemical on my head? I looked at the two pieces of paper in my hand. I picked up words like "no guarantee" and "redness," "blisters," "itching." My head started to become foggy. Was this for real? Is this a real treatment? Or, are they going to try and milk me for money? What do I do? 

He soon came back in the room and just stood there and looked at me. "Well?" he asked. 

"Umm..." I replied. "Yea. I'll do it. I don't really have a choice. You're my last hope," I said. I guess I expected him to say something reassuring, but he just said ok, turned around and mumbled something like "Jeanette will be in" on his way out the door. 

I once again sat alone in the patient room waiting for something, I don't know what. I don't think I had ever met a doctor with a worse bedside manner. My nervousness began to overtake me. What had I just agreed to? I had just allowed a complete stranger to douse me with a chemical! Had I become that desperate? I realized then that there were no other options. I really wasn't lying to Dr. Cruz when I told him he was my last hope. If this didn't work, I was finished. I would officially begin planning to shave my head. 

But then, in walked Jeanette. She was like a ray of light. She introduced herself with a broad smile on her face. She saw the tears in my eyes as they began to flow down my cheeks. Her hands were filled with chemicals and giant q-tips. For all she knew I was just scared it would hurt. But no, Jeanette understood me. I didn't have to explain why I couldn't stop crying. 

"Now don't you worry one second, sweetie. We have had a lot of patients in here and know what we are doing. We are going to fix you right up." 

"This is my last hope," I said through sobs. "I have nothing left." 

"That isn't true," she said. "You have everything left, even a lot of hair," She laughed as she stroked what hair I had remaining on my head. "We are just going to get the rest of it caught up. It will grow back and it will be so beautiful and soft. Just wait until you see it." 

Of all the people I had met during this journey, no one inspired more hope and encouragement in me than Jeanette just had. She didn't coddle me. She didn't tell me I was beautiful. She just handed me a tissue and told me that she was going to fix me. She told me to have faith. She said it so matter-of-factly, so confident and convicted in those words. It was hard not to believe her.

That day, Jeanette put a chemical on my head that caused my scalp to blister, itch, peel, and all around burn. It was a sensitivity test, the highest concentration possible, just to make sure I was susceptible to the treatment. If the puss coming out of my head was any indication, this might actually work. 

"Really?" She said with encouragement when I explained all the itching and blistering I experienced after the first treatment. "That's great!" I looked at her in disbelief. "That means you are really allergic to this chemical so you have a greater chance of success. We are going to fix you, baby!" 

Jeanette's joy, her hope, her faith, the way she made my pain seem insignificant compared to the larger picture... for the first time in months I had started to see light at the end of the tunnel. I started to realize that it could be worse. 

"Some people that come in here," she said, "they have lost all their hair, even their eyebrows. Your case, honey, that is going to be easy to fix. Just be patient." 

Last week I went into the office for my sixth treatment, 20 weeks after I first met Jeanette. She came into the room and looked at my head. She stopped dead in her tracks and exclaimed, "Is that hair I see?!?!?" I had a small amount of white fuzz on my scalp. She grabbed me instantly and gave me the biggest bear hug. 

The warmth I experience every time I walk into the UT Southwestern Dermatology center is something I haven't experienced at any of the doctor's offices I have tried. I am extremely grateful for Jeanette and her ability to lift me up when I was at my lowest. Every time I leave the office, I feel like it's just a matter of time. I feel like I may actually get my hair back one day. 

Her ability to give me hope when I thought there was none left, that made Jeanette the first person during this journey to change my life. I look forward to introducing you all to the next fantastic woman. Because without the two of them, I would still be in a dark hole today. My next treatment with Jeanette is the day after Christmas. I have just a few weeks to decide what to get the woman, the complete stranger, who lifted my spirits more than she will ever know. 

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