By Alyssa Rosengard
Picture a zombie apocalypse: you and your loved ones running away from mass terror, afraid of contracting a terrible virus. This fictional horror can be compared with dealing with a primary immune disorder. For patients, the fear is not based on some scary movie, but on the daily reality of being exposed to infection, illness and possible mortality. Case in point: While in a department store, a woman coughs near me, not bothering to cover her mouth. A nearby fellow shopper is irritated by the impoliteness. To me, it translates into possible months of illness, doctor appointments, antibiotics and pain.
For most of my life, I have been a type-B personality, laid back and artistically disordered. Since developing common variable immune deficiency (CVID), I have had to force myself to transition into a type A in order to survive. I now use Antibac every time I come home from shopping. During this last flu season, I wore a mask and gloves in public - humiliating but necessary. I continually spray my door knobs, light switches and bathroom faucets with Lysol. This, coming from a girl who used to eat with oil paints spotted over her hands.
Those with CVID understand it is a disorder of isolation. It keeps us from going to parties, visiting family or simply following through with plans. It is also an illness that keeps us from leaving the house when we are ill. Unfortunately, that means we look “normal” when we do choose to socialize. How many times have I heard “Well, you do not look sick…”? No kidding! I don’t go out when I am sick, and you may not have seen me for months, or maybe I am just a wonderful actress. The symptoms of this illness are uncomfortable and sometimes embarrassing, making it nearly impossible for me to deal with, let alone share with others.
But, CVID has also given me a gift. I am not one of those people who needs to see the life lesson in every situation. But the unexpected gift I’ve received from chronic illness is the ability to sit with myself. Many people do not feel comfortable without continuous motion - texting, cleaning, exercising, watching TV, surfing the net, talking on the cell phone, etc. This illness has forced me to know who I am as a person on the face of this earth, to review and reevaluate my goals. I am happy being by myself. When I was a career woman, I had to plan every waking moment, never leaving anything to chance. I now paint, knit or just sit and rest and really enjoy my own company. I never thought that I could get my head to stop racing or that I would be grateful for just waking up every day. My skill as a painter has progressed as well, and I have reached out to other people with immune deficiencies and learned to be more empathetic and a better listener. I understand now that I am not an expert in all subjects and that I need to be humble and ask for help. I also know how to stand up for myself, and not let anyone, including the medical system, dictate my life.
So, yes, CVID has limited my life in many ways, sometimes making me feel as vulnerable as the leading character in a zombie apocalypse film. But, it has not conquered my spirit. If anything, I have grown into a stronger, more confident and more empathetic woman. I look forward to growing and changing; the possibilities are endless.
How has your chronic illness challenged you to change and grow?
