disease – aliciajoseph

I have a condition that requires infusion treatments called IVIG (Intravenous immunogobulin) treatments. No big deal. I sit in a chair for four hours with an IV stuck in my arm as a clear, gunky-like liquid substance slowly drips from a bag, through a tube and into my body. And for the next four weeks I get my life back (thanks to the healthy individuals who donate their plasma so people like me can enjoy some semblance of their old life).

Developing a life-changing illness (and there are many) can happen so quickly you feel you were teleported into this new life of constant blood work, invasive medical examinations, tests, doctor appointments, surgeries, hospital stays, pills (lots of pills), because you can’t remember how you got here. “Wasn’t it just yesterday that I hadn’t been to a doctor in over five years.” Um. No. Those days are over. And it doesn’t matter how young you are. If your body no longer works the way it’s supposed to, you see a doctor and you see them often.

Being diagnosed with a disease (any disease) takes you to a scary and lonely place. I was never alone, but I was often lonely even though I had no shortage of family and friends calling me and offering their help, support, their love and their time. But still I felt a profound disconnect to the healthy people around me when I was the only sick person in the room.

A person with health can only empathize so much. Though my family makes me feel safe when I am at my sickest, they can’t look in my eyes and know, really know, how I feel the way another sick person can. The condition may not be the same, but the doubts and fears are.

I had no idea how much I would rely on other sick people to make me feel better because the first time I walked into the Infusion center I almost cried. It was a room set up in the back of a doctor’s office. There wasn’t anything spectacular about this room. It was a slightly-larger than regular sized room – emphasis on “slightly.” About eight or nine reclining chairs lined the walls in a circle. We sat next to each other with just enough space between us for a small table and maybe a handbag. There was no privacy. I could see each person and they could see me.

I almost cried and not just because of the lack of private space, but because the room was filled with sick people. Though I’d been sick for a while, denial allowed me to believe I was really a healthy person suffering from temporary set-backs. But I was there that day because my condition was getting worse, and yet I was still lying to myself. “What am I doing in the same place with all these sick people? I don’t belong here.”

But I did, and soon I realized how much I needed that place. Needed those (sick) people. After almost four years I have developed close relationships with my nurses and other patients who have become familiar faces with names and shared stories.

That place makes me laugh even when I want to cry. Like the time a woman (now known between my nurses and me as “The Screamer”) walked in. I barely noticed her… until she started to scream. Whatever her condition is, it doesn’t affect her lungs. That woman can scream. I couldn’t see her face because two nurses were sitting on either side of her, holding her down, but her feet were flailing. And those screams.

I turned to my nurse. “What are they doing to her?”

My nurse sighed deeply and said, “The same thing we do to you. They’re starting an IV.”

An IV? A simple needle? But those were “Michael Myers is in my room and he’s trying to kill me!” screams.

From then on whenever my nurse says to me, “Hey Alicia, ‘The Screamer’s’ coming in today.” I smile because no matter how sick I may feel, there’s always something to look forward to. More screams, please.