One of the issues that is giving me the most trouble is, “What does it mean to be me?” Am I still myself if I’m 90% of who I used to be? 75% percent? What is the point that I cross where my kids start to say, “I miss my mom,” even though I’m still alive?
How can I be me if I’m not smart and analytical and a person who loves to play games and plan? How can I be me if I can’t express my love for my family?
How many years am I going to linger past that point where I’ve changed into someone else? And why? It tears me up to think about causing my family so much pain and distress, and having it be ongoing for years. Right now, the slowness of this is a blessing, but over time I imagine it will just be so painful! I feel like I would honestly rather not be there after the point where the real me is gone. When I’m so far gone, if I get some serious illness like cancer or appendicitis, I would rather not be treated.
I’m really worried about being brave enough to cope with becoming less and less of the person who I am. I don’t know how to accept this gracefully. There are little things that don’t matter so much, like “undertoe” instead of “undertow”. Don’t get wrong — that’s a pretty shocking change, since I won every school spelling bee, from 4th-8th grade, as well as regional and bees, and studied roots. But then there are things that terrify. What if I lose empathy, and just ignore the kids all. But I can live with leaving out words and not knowing how to spell.
But there are other things that terrify. What if one day, I llose empathy and ignore my kids and just sit and watch TV all day?? What if I shout at them? What will it feel like to not be able to talk?
When I’m with the little ones, I hope I can just laugh my little mistakes, like dropping things or calling them the name of a sibling.
Another thing that worries me about being me is pondering how different I’m going to be by the time I get access to the IONIS drug. Will I still be mostly me? How will I be different? And if the IONIS really stabilizes things, what will it be like living like that, however I am?