The World Stopped

Today I got a phone call that changed my world. I thought I was safe. Honestly I did. I never thought I'd hear the words you have a new lesion, let alone five new lesions. I always thought I'd be stable.

I thought my MS specialist was crazy wanting to see new damage on my MRI. My friends and the doctor would say you might never have new damage, you may stay like this forever. I think I started to believe that. I never thought the day would come when I would actually hear that I have new lesions.

Last year I broke down when I learned about the low-lying cerebellar tonsils which correlate with Chiari. I lost it with that news. I couldn't handle the thought of being saddled with two incurable illnesses.

But I really lost it hearing that there have been changes. I remember the doctor going on, talking, explaining things to me. I remember trying to hold it together as I asked, but there have been changes? I was so confused and at first I didn't think I had heard her right. Yes, you have 5 new lesions she told me. I remember her reading the report to me. What stood out was 4 new lesions on the left and 1 new lesion on the right, that is active. I held it in but later I lost it. The tears flowed, I balled. 

I sat in that office so many times. Mri after mri. I've read report after report and I've listened to my doctors read report after report to me. It's always said stable white matter lesions. No evidence of active demyelination. No new white matter lesion. As frustrating as that was to hear, it was the one constant in my life among the ever-changing symptoms I experienced. This time hearing there are 3-4 new lesions noted within the left parietal subcortical white matter. There is a new lesion noted within the right posterior frontal subcortical white matter and posterior parietal subcortical white matter.

I'm trying to find some sort of positive in all of this. Trying to reflect on what is going right especially when it seems like everything is going wrong.

And then I think about all I've overcome in life so far to this point. I'm driving. I think a lot of people doubted that would ever happen. I'm teaching math in a high school resource setting. I'm modeling or at least starting to. I have an "adopted" family who I love and loves me back. It's one of the best feelings in the world. I'm genuinely happy. For a long time, I always thought the core of my happiness lied in getting a diagnosis. Thankfully, I worked out through that. 

But this still has rocked me to the core. I'm not letting it completely destory my life but I am upset. I'm frustrated. I'm scared. I need to get through this I'm just not sure how.