I walked into the doctor’s office, my knees ached and my joints stiff. My neck hurt when I turned it and even though I had taken a hot bath to help ease the stiffness in my body, I felt like a board walking. But I went anyway. I hadn’t seen a primary physician in over a year and I knew I needed to get my thyroid levels checked since I have hypothyroidism. As I stared down at the tiles in the room, I thought about my blog and writing about the past and how far I had come, even so I still had such a long way to go. All of the encouragement that I had received from others, now that I was being obedient to my calling and writing, had supported me thus far in getting out of the house. My body was in more pain than ever and there still isn’t a lot that I can do. Writing and doing art and music were starting to make me feel alive again, if I could just write something every single day, I felt so accomplished.
When the doctor came in the room, he rushed straight to my arms, like they always do. He poked and prodded at my arm. “You lose a lot of weight?” he asked, examining my stretch marks.
“I lost 100 pounds, but the stretch marks were from the steroids,” I replied, used to being handled randomly by doctors in awe of a disease they had never heard about.
He apologized and introduced himself and sat down in a chair spinning it around and facing me. He asked me what I wanted to do with my life and I was immediately thrown off. I was used to doctors quizzing me for at least a half an hour about the pemphigus. I told him I had lost a lot of jobs, and my plans for what I thought to be a successful life hadn’t worked out, but I was writing now, which I loved. Fiction, and about the pemphigus.
“That must really mess with your Id and Ego, losing jobs a lot like that.”
I looked down and away, I felt the tears pricking my eyes. Even though I had already decided that I wasn’t the job, that I was so much more than doing things like “normal” people. That I was still me. It still hurts me to think of losing my culinary career before it could even begin. And it was such a rare event when, instead of suggesting other jobs for me to do, people simply acknowledge that it was hard. It was just hard losing so many jobs like that to pemphigus.
He stared at me silent until I looked up, and then into my eyes. For some reason, I couldn’t break the connection between us. He told me his sister’s story about her struggle with Lupus and how it had ruined her life too, how the pain had kept her from having a normal life and destroyed everything she held dear. He told me how he understand how I could feel like this would be the rest of my life, but it wasn’t. His sister was now the healthiest person that he knew and the lupus was gone entirely, now she had held a job for 20 years straight after losing jobs back to back like I had. She was just like me, but now, though she still didn’t have her immune system, she was living a normal pain free life.
“Right now, you might think this is the rest of your life,” he said. “But it’s not going to be.”
I held back so many tears that burned my eyes and I blinked really fast, because I know that once I open the floodgate of tears it doesn’t stop for a long time. But later on, I cried. Hearing such an inspirational story of someone else who dealt with such a rough autoimmune disease, who was now healthy? On no medication and living her life to the fullest? I could only cry because I knew that one day, that was going to be my story. One day, I’m going to be so healthy that people will be in such shock that I had ever dealt with an ugly disease like pemphigus. One day, I will be able to leap out of bed instead of lying there stiff and in pain for hours before I could get up. One day, I will be able to walk around all day with no pain, I will be able to run freely. Maybe even a marathon!
One day, I’m going to be healthier then I have ever been. That simple story from what I thought would be another getting to know a new doctor while they learned about a disease they had never heard of, turned into a doctor who was kind enough to not only see my pain and acknowledge it, but to give me encouragement for a brighter day.
And so I pass it on to you, you may feel like it, but this will not always be your life. Maybe you’re going through pain and struggles and you can’t figure out how it’s going to work out, that’s okay, that’s absolutely fine. I don’t know how mine is going to work out either, but I know that it will work out. My everyday life is gratefulness, even when the negativity creeps into my mind and tells me that I am not enough. It tells me to be silent, but I will speak. And eventually, I will fly.