I have had some pretty frank conversations with people I love this week. I think there was some concern that I have lost hope or have given up. I don't think I have. Most days I spend some time investigating drug trials for ALS, looking into whether or not I fit the criteria. Honestly most of them I don't, for a variety of reasons. I don't have a complete gastrointestinal tract (ironic, right?), or I am taking Riluzole and they want people who have not yet started the drug, or I am not in the age bracket. It is honestly frustrating and depressing at times, and I don't talk about it much because having to explain this to the people who love me and see the look of sadness in their eyes is almost too much to bear. I use my computer time to do drug trial investigation, writing my blog, writing some very difficult and personal letters, and writing fiction. It is a balance between hope and reality.
What does the balance of hope and reality really look like? As Gillian and I were snuggling in bed this week she asked "Will you and Dad move out of this house when we are grown up and on our own?" The question caught my breath. In the seconds before I answered her I thought about how I might not be alive to see you grown. I thought that is a decision Dad will have to make on his own, I thought does Gillian not get the brutality of this disease or is she in denial or does she just have hope? I breathed and answered "I don't know. I love you so much." Gillian smiled.
Gillian and I spent some time de-cluttering our home this weekend. She has created a list of things that she wants us to work on together. So, she organized our food pantry, and we tossed the expired food. We emptied the school supply / craft cabinet and made a donation bag and put the rest back neatly. We finally rid ourselves of the huge basket of unmatched socks from the upstairs hallway. Our nephew Sam adopted the beautiful wooden card/game table that belonged to my in-laws. It no longer sits in our living room, and it feels right going to Sam. Little by little we are working organize the house. I feel like it is a preparation for something? Maybe. I am not sure. For Gillian - she just loves to organize. She must have gotten that from my Dad.
I am having trouble holding a fork, cutting my food, eating raw fruits and vegetables. Sitting with others over a meal is starting to make me a bit self conscious, I drop my fork often. I eat a bit slower than most. I awkwardly put food in my mouth, and sometimes I totally miss. I know that people are wondering if they should help me or offer their help or just pretend that they just don't notice. I am not sure if I know what to tell them, or what advice to offer. Do I say "I will ask if I need help."? Do I pretend that I can still do it all? Do I take people up on their offer of helping me when I don't really need help? I really don't know. I am an independent person who no longer can do a lot by myself.
I went to a funeral this week for a gentleman I didn't really know. I know his family, and it was important for Ean to be there for his friend. I would be lying to say I wasn't scared or worried about my own reaction to going to a funeral when I think about my own death as much as I do. The funeral service was lovely and I found it to be comforting in a strange way. The poems and prayers. Listening to his grandchildren speak so eloquently about their grandfather, huddled together at the podium, holding onto each other for support. Listening to my friend speak about her father very much in the way I would probably speak about my own father. All of this brought me to tears, yet made me feel like I missed out on something important and special by not knowing this man. I spent some time looking around at the people who loved him and thought how lucky they are to have known and connected with such a person.