I was diagnosed with Ulcerative Colitis when I was 16 or 17 years old. I remember going to the gastroenterology department at CHOP. I would always take the trip with my Mom, sometime by train, sometimes by car. There was a McDonalds in the lobby of the hospital. We didn't eat a lot of fast food when I was younger, but we got to eat there after my doctor's appointments.
Being a heterosexual teenager, I was more than interested in boys. Ulcerative Colitis was a disease of embarrassment. At CHOP there were a lot of residents, and I remember being absolutely mortified when the residents came in to observe some of my not-so-attractive testing, and listening to my answers about bowel movements. It was kind of a dark time.
As I got older I saw a gastroenterologist in Red Bank. I don't remember much about him other than I felt like it took forever to get to his office, and his office was in an old victorian house. I always thought that house should be filled with family not medical equipment.
Then I began seeing another in Princeton. I saw him for many years, but there was a point when I decided I needed another opinion. And that is when I found Dr. Baig and Susan.
I say Dr. Baig and Susan, because in terms of my care they go together like peanut butter and jelly. Yes Dr. Baig was my gastroenterologist, but Susan was my first point of contact. She is his nurse - a great organizer, knew my story from the beginning, always gave me a hug when I came in. Both she and Dr. Baig asked about my family. I always found Dr. Baig to be an exceptional doctor because he was an exceptional listener. He always listened to my opinions, heard me out on things I found on the internet, and made me feel like an important part of my care. Our oldest daughters are the same age and they went through the college search process at the same time. At this time I was pretty ill, so I saw Dr. Baig often and we would often compare notes. I saw Dr. Baig for more years than I can remember, and when we got to the point when he knew I needed different care, he recommended a Penn doctor. I haven't seen him in a while.
Yesterday my phone rang, and it was Dr. Baig. He had heard of my ALS diagnosis and was calling to tell me he was thinking about me and praying for me. This kind, gentle, very busy man, who is not even my doctor anymore, took the time to call me. I was so moved, and still can not believe he did that.
I spend a lot of time thinking about how my ALS diagnosis affects me and those friends and family that are closest to me. I am thinking more these days about how this diagnosis affects the people on the edge of the puzzle. These people have a different relationship with me than those who live with me or see me every day. It affects everyone in the puzzle, not because of who I am, but because a disease like ALS has such a devastating effect. And if it has an affect on everyone in my puzzle, does it also have an affect on the people who are not in my puzzle? Like the lady in the diner who asked me why I was in a wheelchair and I said I am a person with ALS. Or the little girl in Target who reached out to touch the bright pink wheelchair because she thought it was pretty. Like the man in Wegmans who stopped to ask me questions about my brace and where I had it made, because mine looked so much more comfortable than his (he also liked the butterflies). Or the woman in the parking lot who looked at me with such sadness and curiosity that I wanted to comfort her and tell her she won't end up like me. ALS has an effect even on those people. I have decided that even though that is sad, in a way it is good. It is keeping this disease, or at least disability, in the public eye. It might not be in the forefront of someone's mind, but seeing me out and about, living my life with ALS, might trigger compassion or curiosity that leads to goodness or a cure.***
I thank Dr. Baig and Susan for being such an important piece to my puzzle.
***Disclaimer - I have no idea if I am using "effect" and "affect" correctly.