There is a 50% chance that my mom passed her Cadasil gene (a mutation in the Notch 3 gene {on the short arm of chromosome 19}) onto me. A 50% chance that I, too, have a degenerative brain disease. A 50% that I will be the 22nd person diagnosed with Cadasil in Colorado.
50%. Yes or No. 50% Yes or No. 50% Yes or No. 50% Yes or No. 50%
For such an abstract thinker, this simplistic, black and white thinking is daunting. And exhausting. And terrifying.
TO TEST OR NOT TO TEST. Such a simple question with such a simple answer, which in turn, will only lead to more questions...and more answers.
I process information as I write. It's therapeutic for me, so my hope with this blog is to help me organize my thoughts so I can make educated and informed decisions, while having an outlet to express my fear, sadness, and hope.
Here are some of my fears (as I have processed them over the past week):
If I test, and am diagnosed with Cadasil, how will it affect my personal relationship? Will Tom see the struggles I am going through with my mom, and know that they might be in the future? How will that even factor into us? If I do test positive, how will it affect my ability to function emotionally? professionally? Will I always be worried? Am I prepared for answer, and all that will come with it?What if it is negative....will I feel guilt that my mom has it and I don't?
For someone that struggles deeply with uncertainty, my life is a bit wobbly right now. I guess all I can do is hug Tom, count my blessings, and be ready for whatever tomorrow brings.
Jo,
ReplyDeleteI wish I could tell you what I would do, but I have no idea!
I keep praying (and putting your names in the Temple) for you guys and sending positive energy. Love you!
Amy
Hi Amy,
DeleteI actually started the process. My first appt. is going to be 11/5. Thanks for all the love. Love you!
Jo