Looking back

I first learned about Jeff having a 50% chance of inheriting SCA3 (spinocerebellar ataxia type 3) from his mom when we were only juniors in college. While I wasn't sure what to make of it, it all started to feel a lot more serious when I met his mom and saw the severity of the condition for myself. Things only got more emotional and complicated when my protective family found out about the condition and expressed their concerns for me and my future if I eventually married him.

My family recommended that he get diagnosed so I could know what I was getting myself into. But through much prayer and discussion, we knew that wasn't the right decision for us then. Having a formal diagnosis could provide great news and relief. It could also end up being a death sentence because we would just be getting bad news without any way to mitigate it. There is no cure for SCA3. The only thing we could do is wait for the symptoms to start and life to be over. Some lose the will to live with this definitive dark cloud hanging over their heads, even if they still have years to live full active lives. We're not the YOLO, carpe diem types (we're too nerdy and responsible for that) but we didn't want to live in fear of what will come. And that's what a diagnosis would have done for us.

I knew I couldn't live with myself if I asked Jeff to get diagnosed before we were married. If he had gotten bad news, I don't know if I would have had the strength and maturity to stay with him. If it was good news, I think he would have seen how conditional my love was and I don't know if he would have stayed with me.

Suffice it to say, there were a lot of ups and downs in those 6 years of dating. We had a lot of honest, difficult conversations in those years. We also had a lot of love, laughter, and fun. I knew I had to marry him when I realized that I didn't want to live a life without him, in sickness or health. And isn't that what marriage is supposed to be about?

A lot of our loved ones ask about our decision not to get diagnosed. Not be all Obama about this, but I would say that our views on this continue to evolve. In the meantime, Jeff lives as healthy of a lifestyle as possible by eating right, exercising, and staying active. The other thing that we do as a couple is that we try to budget responsibly. It's definitely hard at times but we do our best to save towards retirement accounts and emergency funds. Could we save more? Of course, but we're doing okay in the meantime. If we were to save more drastically, it would probably start to impact our quality of life, which is something we know we're not okay with right now. While we both still have our youth, health, and some savings, we want to experience life, see the world, and live fully. In the meantime, we pray for the faith to live this life with love, meaning, and purpose.

Paris, August 2009