By Carla Schick
John, who was diagnosed with common variable immune deficiency (CVID) in 2002, is a relatively new fan to our IG Living community. Recently, he responded to one of our daily Facebook questions:
Let’s see how creative you can be. Finish this sentence: You might have an immune dysfunction/chronic disease if…
“When you tell the doctor you have CVID and the doctor says there is nothing in your charts about a cardiovascular inflammatory disorder. Or, if a doctor says, “Give me a minute to review your chart.” And he does not come back until the next day!!”
We were inspired by John’s comment, so we reached out to him. Here, he shares with us his optimistic attitude on life.
IGL: Your response to our Facebook question was humorous. What helps you to keep a positive outlook on life?
John: It has been hard coping with CVID, but being sad and depressed all the time is simply just not an option for me. Being sad all the time will do nothing but make you sadder, and living in a constant state of depression will only sadden those around you. So, my only other option is to be happy, and if not happy, at least content. Dealing with CVID is tough because most people haven’t heard of it, and often don’t believe you when you tell them how sick you are. But you can still have good times and not feel like you have to prove to everyone that you are sick.
IGL: Who or what gives you inspiration?
John: My two main sources of inspiration are my mom and my family. They always show me love and support, even when they don’t fully understand a lot about my illness. I’m also encouraged by the inspirational stories that I read online from all my “zebra” friends. Simply knowing that others are going through similar struggles is a great help and a great way to stay inspired.
IGL: Since your diagnosis with CVID, what has been your most challenging obstacle? How did you overcome it?
John: My biggest obstacle with CVID has been obtaining and continuing my education. I was first diagnosed going into my freshman year of high school, and ever since then, I have missed several classes because of my many hospitalizations. On the upside, I’ve become very good at playing catch-up. With the help of my fellow classmates and understanding teachers, I was able to graduate from high school. And, with the combination of on-campus and online college courses, I have been able to earn my associate’s degree in civil engineering from Springfield Technical Community College. I’m also in the process of getting my bachelor of fine arts [degree] in architecture and design. And, although there have been a lot of speed bumps, I am slowly on my way to getting my degree.
IGL: What have you learned about yourself since your diagnosis?
John: I have learned that my ability to cope with loss must be incredible, and that my ability to let go, forgive and forget, and take each day as it comes have all been pushed to the limit over and over again. I am a very strong and optimistic individual that has truly been blessed with the gift of getting joy from even the simplest things.
IGL: Finish the following statement: If time, money and health were no object, I would…
John: Travel the world and study all the amazing architecture — both ancient and modern. I’d also like to raise awareness of CVID and the proper ways to treat it and detect it early to prevent long-term damage to the body, with a hope of finding a cure. I would also simply enjoy the fact that my health would be much less unpredictable, and I could make big future plans without the fear of having to cancel them.
IGL: What advice would you offer others dealing with chronic illness?
John: I would tell them that this is not their fault, and it’s no one else’s fault either. This illness simply came to be; it was not from anything you did, so don’t waste your time thinking of what you could/should have done differently. Also, remember that it is the bad times in life that allow you to truly appreciate and enjoy the good times. So take each day as it comes and never feel as if you are a burden to bear or a hassle. Just remember that, illnesses aside, you are just like everyone else, and you deserve to happy.