Last night I had one of those dreams I didn't want to end. I was at Sharon School, sitting in on lessons in the Reading Recovery room. (This is something I do every year because the Reading Recovery teachers perform teaching magic and I learn something from them every time I observe a lesson). First I observed a lesson with Chris, then Loryn, and then Pam. The last lesson I observed was taught by Therese, who in real life is not a Reading Recovery teacher, but in my dream was the team leader of all the Reading Recovery teachers. She sat with me and a student named Courtney who had a crown of little white and purple flowers in her short dark hair. Therese showed me how to mark up a reading assessment and then she had to go run an errand. Courtney and I sat and talked about all sorts of things that make her happy, like her puppy and her baby brother and her Barbies. Then I walked Courtney to gym class and Kevin was teaching the kids to play volleyball and I jumped in to play with them. I kept hitting the ball to Courtney and every time she hit the ball back to someone she smiled from ear to ear. She was so happy and so proud of herself. When I woke up I felt exhilarated like I had just run around the block. It felt so real!
My body has been feeling extra tired lately (maybe because I have been playing volleyball - heehee). Yesterday and today I took very long naps. My body doesn't feel like it has been getting enough rest. It is becoming more difficult to go to the bathroom independently. I can do it, but it takes a long time. Honestly, that really sucks. More than anything. I mean who the hell wants people to help them in the bathroom?! I plan my day and my bathroom visits so I only have to do one visit while no one is home with me. That is very doable. But when Adam is home, or my parents are over, it feels good to know that they are there just in case. I should probably be used to planning my bathroom visits after living with UC for thirty years but this seems different.
It is taking me longer to form words, and I think it is becoming difficult for people to completely understand me when I talk on the phone. I have to repeat myself often and by the words that these people think I am saying, it makes me think that I am slightly slurry. I suspect when I am face-to-face with people I am easier to understand. They can read my lips and see my expression, and understand the context of the conversation. My mouth muscles get really tired after a while, so if you are with me I might keep my conversation to a minimum. I felt like I had some difficulty swallowing pills yesterday. But that feeling seemed to have subsided. In a person that doesn't live with ALS, this is a minor inconvenience. For a person who does live with ALS this means other things, like weakening of throat muscles, swallowing difficulties, which leads to eating difficulties. I try really hard not to think of all these awful things, but you know...I do.
A few nights back, my ostomy bag leaked. It was actually morning - 1;36 AM to be exact. I thought about keeping this experience off my blog, but I decided it's all or nothing, and I am going for all. So, I had to wake Adam up. He got me into the bedside wheelchair, and we got me into the bathroom. Luckily I didn't leak on the sheets. I had to clean myself up, prep my clean ostomy supplies, remove my dirty ostomy seal and bag, and change it. It took an hour. Yes, an hour. At some point I just started to laugh. Every time I went to put on my clean seal, Consuela started to leak, and I had to start all over again. Ugh. I had a blog reader ask me recently if I would post pictures of the supplies I use for my ostomy. Maybe. I'm thinking about it.
In between naps and my leaking ostomy, I am living. I went to the movies with a great bunch of ladies the other night to see Dirty Dancing. I visit with friends. I have moments of deep, deep sorrow where I can't control the sadness. I have other moments where I am content and feeling spiritually full. I spent some time this week with my parents talking about something other than my ALS and that made me feel helpful. My Mom came over and helped me (well she did most of it) cook Bubbe brisket. Sarah seems happy in her second semester of college, and we text and talk on the phone in a way that makes me feel so connected to her. Gillian is studying hard, and a joy to spend time with. Ean is swimming and his team is getting ready for states. He comes home every day hungry and happily gives me a tidbit of information about his life. Adam is spending every day taking such good care of me - of us. We are still able to make each other laugh. We spend a lot of time keeping up (and trying to predict the future) with the ALS. What will my needs be in a month? Six months? A year? We made some adjustments to the ramp situation in our house. Our friend Danny is going to help us with some renovations. I keep receiving notes, cards, and messages of such kindness and support. They often bring me to tears. Gillian and I were commiserating the other day that we both cry when people are nice to us.
That is all for now.
Live to Love. Love to Live.