Colin's Diagnosis Story - Life Defining Moments
Colin Shares His Path to a Primary Immunodeficiency Diagnosis
I will never forget that day, I was fourteen, sitting in a doctor's office with my soon to be step-mom. By all standards she is my mom. She was the reason I had gotten to a diagnosis. She knew no kid should be this sick. We spent the summer together, doctor hopping trying to figure why the heck I was always so sick. By this point, it was September 1999 in Irvine, CA. I was at my umpteenth specialist. After trying everything, the Allergist was not giving up on me and she was the doctor who figured it out. I sat there as she told me the reason I was so sick is that I had a disease called common variable immune deficiency.
I remember my mom looking at me and asking how I was feeling. To a degree I felt relieved, I really was sick and it was not made up. The journey to get this point was tough, and by no mean did it end there. From what I remember, I was always the kid in school that could be heard coughing or sniffing through every test. One year I was taking a state test and actually had a kid break the silence and yell at me to stop being so sick because they couldn't concentrate through my cough.
I grew up with my biological mother because my parents had divorced when I was really little. I got to visit my dad on the holidays and on summer vacation, it was two very different extremes. My dad lived in Los Angeles, we got to go to the beach and even saw different Hollywood stars. In middle school my mom lived on a lake, my step-dad's family ran a local marina and we all moved there to help. I went to a small town school with less than two hundred kids in kindergarten through 8th grade. We lived in a small two bedroom house, my brother and I shared a room. My coughing kept most of the house up at night.
Life with my biological mother was different. I think that is the best way to describe it. As a kid I used to get told the reason I was sick was because I would miss a pill here and there, like any kid I imagine. I was called a liar when I said I finished my medication because people don't stay sick when they take all of an antibiotic. Science proved me right which helps me rationalize it all in some way.
When I first met the woman who would become my step-mom she was great, and normal from what I could tell. After my dad proposed, I would call her and talk. I used to tell everyone that I was going to be in their wedding in California. I was my dad's best man and that was so cool to me. One night after I got off the phone with her, my biological mom came into my room and yelled at me that she was my “mom” and not this lady. Ultimately, this lady saved my life. I am sure at some point I would have been diagnosed, in spite of my biological mother’s objections, because my case was quite clear. I just wanted a normal life, to have a chance at being happy and not sick all the time. I think that is what I remember the most about the day I was diagnosed. I was happy we had a name for it. It wasn't me, it wasn't my fault, and I didn't make this up. As the conversation grew after I was diagnosed, my now mom and dad sat me down and asked if I wanted to come live with them. I remember the conversation because I wanted to live with them so badly. I wanted that kind of normalcy.
After my parents’ wedding, they went on their honeymoon and I stayed with some family friends. I was due to get my first Ig treatment when they got back. Unfortunately, I got really sick before then. I was taking Tylenol, but my fever kept going up, a pretty good sign something was wrong. I was rushed to the hospital with several issues. I ended up being admitted and getting my first Ig infusion in the hospital by myself. My parents were desperately trying to get back to me, but they were stuck out of the country. I often look back and try to find those defining moments and I always come to this one.
The next hardest part post diagnosis was being 14, having just been told I have this weird rare disease, and I was trying to find my place in a new school. As I met friends they were naturally curious as to why I was always out at least one day a month. I tried explaining my diagnosis to them and all they heard was immune deficiency and automatically put the acquired it front of it versus genetic. As we all know, that makes the world of difference. As luck would have it, we moved the start of the next school year, and I was lot more quiet about it and was able to make a fresh start.
Anyone that knows me knows I am a fierce advocate and I will run over anyone that gets in my way. Unfortunately, that means sometimes having to do what is best for me and making tough decisions about the people in my life. My biological mom and I have a strained relationship. It even got to the point before my wedding that we stopped talking. I made the decision because I am 32 and she was still trying to reassert her position as my mother and that tension is not something I needed to bring into my marriage. According to Webster's Dictionary there are two definitions of a mother, (noun) a mother in relation to her child and (verb) bring up a child with care and affection. This seems fitting as the verb of mother is what I needed. The person who best fit this definition was at my wedding. When we first came into each other's lives, we needed each other for different reasons. I will say it again she saved my life both medically and emotionally, helping to give me a future.
People tell me all the time they are sad I had to go through this, and every time they express this sentiment, I think to myself that I am not sorry or sad. Yes, it was difficult at times, but these challenges and journeys helped shape me and helped make me the person I am today. Today, I am happy. I have everything my younger self wanted so badly. While there are a lot of hard days with this disease, I am not sure I would be me without it and I wouldn't have the opportunity to share this moment with you. I think Lisa said it best last week in her Wallow or Grow piece, I choose to grow and my growth continues every day.