When Connor was first diagnosed with TSC, it felt like my life very quickly split into two parts: BTSC and ATSC. Before TSC and After TSC. Although the extreme emotions surrounding that feeling have faded, I still find that when I think about stuff I did in the past, I calculate how long until he would be born when I did it. Moving into the dorm with Gio-13.5 years until Connor will be born. Teaching English in Korea-less than nine years. Taking language classes in Spain-eight years. Starting to teach elementary school-less than seven. Closing down our favorite bar every weekend with Lili-less than five. Meeting Chris-three and a half. Traveling to Italy-11 months. It feels so foreign to think I was just walking around at one time, thinking something like this could never happen to me or someone I knew.
Now I wonder who the people are walking around, like I did, never even hearing of this disease, not knowing that it will enter their lives someday. There are other versions of me that are getting ready to take final exams at college, lying on a beach, starting a new job, looking for their first apartment, at the mall, house hunting, planning a big summer backyard bash, training for a 5k, and just going about their lives, with no idea that one day a doctor will say the words tuberous sclerosis complex to them.
I have a number of guest bloggers that will be sharing their personal TSC stories over the next month. Some have family members with TSC. Some have TSC themselves. Some have both situations. I hope sharing their unique stories will help spread awareness and help us find a cure someday.
- What is it Like Having Tuberous Sclerosis Complex (T.S.C.) (wildflowerwrites.wordpress.com)