Pemphigus Vulgaris: Part 3

If you’ve missed the first two parts, please click here and read them first: Part 1 or Part 2

pemphigus chair close up
Chair inspired by pemphigus

My doctor put me back into the hospital immediately, so they could reverse the issues caused by the new medication on top of my flare ups. On the days when I couldn’t take the pain and had to take pain medication, my mind became too fuzzy to do my schoolwork, so I started learning to suppress the pain and think of other things. It was a hard process, and it took much of my willpower, but school to me became a driving force like nothing else. In my mind, it was my way of fighting my disease. Because I could still do this one thing.

The nurses at the hospital often saw my struggles and they helped me to prop up my textbooks, set up my laptop and encouraged me to do well and raise my GPA. I wanted to cry from their kindness, or even from the pain, but the salt from my tears would only burn my face (I had learned that the hard way), so that too, I pushed down. They couldn’t get an IV into me during the stay, they kept popping out every couple of hours and this led to me having to receive a PICC line (peripherally inserted central catheter). They talked it over with me and said I would need one to take home with me anyway to continue my treatments. I was frightened, but compared to the rest of my pain, the numbing needle and the installation of the PICC line was nothing. I didn’t even feel it when they cut into my arm and inserted the line through my insides to my chest area, instead I watched it on a computer screen while they gave me hilarious narration to keep my mind off of it.

This time I was hospitalized for a week, and I felt despair grab hold of my soul. You see, at the time I never knew this disease would be long term. In fact, with my diagnosis I was told that it only lasts about 6 months. I had since then switched dermatologists and it began to settle within me that this was long term, that this might always be my life. It was then that the darkness began to consume me, slowly and quietly it whispered to me that I could never live the life I wanted. It was over.

I didn’t feel brave or courageous, I only knew that it hurt me to cry. And I knew it hurt my family to watch me suffer, they were there with me day in and day out in the hospital in shifts. And when I finally got sent home after a week, with my PICC line still attached, my parents learned how to administer my treatments. Including a treatment they would have to wake up for in the middle of the night. I saw how much work they put into my survival, and I realized that I could only do the same and fight as hard as I could to live.

I was eager to return to my sculpture class, but with my PICC line still attached, I was housebound. And I wasn’t sure who I thought I was fooling, I couldn’t even sit up. Every day I pushed myself to try to move my weak body, it was days before I managed to roll over, but in my mind that was a small victory. Each flare up with pemphigus reduced me to the helplessness of a newborn baby. I could do nothing for myself, so I tried very hard to recover what I could immediately. From my first roll over, I worked from there to roll to a footstool on the side of my bed and back to my bed. From there, I worked, strained, to lift myself to my feet. After I worked out this pattern, I could get up by myself.

My parents encouraged me to walk a bit every day, I still remember my dad chanting “You can do all things through Christ!” as I struggled up and down the stairs, one step at a time. Hating my weakness, proud of my progress, but wanting to be better, stronger. I hated this disease, but also it was a part of me now, there was nothing I could do about that.

After so many treatments from the hospital and home, the infection still lingered and I had to do vinegar baths. No matter how much we tried to dilute the vinegar it burned me to no end, I would scream as it went into every open sore but all I wanted was to be free of the infection and I did whatever it took. It did indeed take out the infection once and for all, and my face finally cleared of the green. In the middle of the night, I had wiped my face with tissues crying and I noticed the green came off. Hopeful, I wiped off the rest of it and saw that the infection had finally lost its hold. I wept so hard that night, praising God for this one thing, the infection on my face had made it hard for me to move my mouth to eat because it hurt so badly just to move my face.

Finally, I could have the dreaded PICC line taken out of me. My dad recorded the progress on video when the nurse came to our house to take it out. Surprisingly, it was just as painless as they told me that it would be. I didn’t feel a thing as it came out of me. I asked if I could keep it, and they let me have the IV part of it. I wanted to always remember what it was like, even though I wanted to forget. I wanted to remember, because someone else might be where I was at during that place. Our pain is never wasted, if we can use it to give hope to others.

I struggled with walking still, but at this point I had missed about 6 weeks of school and I was determined to do whatever it took to catch up with my classes. My mother was working from home to take care of me, and though I couldn’t walk all the way I leaned on her and my sister and they half carried me to the classroom and I began to work with a vengeance. I was behind, but the art poured out of me faster than I could control. I was a whirlwind of grief and emotion, and my teacher gave me a very special project, he allowed me to pour my disease into a chair. To make it the embodiment of all of my suffering, to make it pemphigus itself. And I did.

I destroyed the chair, I cut into it, ripped it apart, redefined the outside. As much work as I did on the poor old chair that I used, I noticed that the insides were still the same. Butchered though it was, it hadn’t changed what it was, it was still a chair. As I worked on this project I realized, after a long time, I had pemphigus but it wasn’t who I was. I was still me, I just didn’t know who I was. I had forgotten my life before pemphigus, because it had ceased to be. Even now I can’t remember how it felt to have no pain, to be on no medications.

The project ripped into my soul as I worked, it made me ask so many hard questions of myself that I wanted to stop, but I couldn’t. I could only press on. I finished up my chair by hooking it up to the same IV that had once been hooked up to me, and it was one of my first pieces that made it into the student art show:

chair hooked up to the iv

I titled it Pemphigus Vulgaris and it sparked many conversations about what the name meant, and I saw some people googling it at the show and I was happy. It was the first time I had sparked conversations about it. I had talked about my disease with my art teacher, he had been the first person to actually ask me about it. I was ashamed of my disease, and I tried to hide my scarring by wearing long sleeve shirts all the time.

Even now, every morning when I wake up, I can look down at my arms and see the stretch marks, the remnants of my skin thinning out from the steroids and bleeding. When the doctor told me they would never go away, I felt defeated. But now, looking at my scars, I thank God for how far I’ve come. I acknowledge pemphigus, not as something that has taken over my life, but as an opponent. And really, isn’t that what everything that comes against our life is?

Some people think I’m strong for dealing with pemphigus, I really don’t feel that I am. But the more I think about it, we are all strong. There’s not a one of us that should be called weak. I have pemphigus, depression, things that I have to fight in this life. But so do you, maybe your battles don’t look like mine, or maybe you too have an invisible disease that torments you, either way, you’re strong too. Because you’re still here and you’re still fighting, even if you don’t feel like fighting right now, that’s okay. Gather your strength and fight another day.

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5 thoughts on “Pemphigus Vulgaris: Part 3

    1. It is, even today it’s a struggle for me to get out of bed in the mornings. I’ve learned a lot from it though, sometimes suffering just accelerates growth! Thank you for reading and God bless! 🙂

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  1. “Our pain is never wasted, if we can use it to give hope to others.” So beautiful. Thank you for sharing your pain and your struggle. You are an overcomer. And you will give hope to others.

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  2. Pingback: Pemphigus Vulgaris: Part 4 Where I am now | Rebecca Q. Bryant

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