Me and Peggy in her treehouse trying to figure out her Dynavox.
Becoming a Bystander
In my mind today I've been a mixture of things. I've been in a slump on my writing. I miss my youngest because she's gone to governor's school. Medical bills just keep coming in every day. I get Medicare next month to help with my private insurance. Apparently since I'm close to getting it the private insurance has paid zero on my last adventure to the ER when my peg popped out and had to be reinserted. So now I'll have to undo this red tape all the while debt collectors are blowing up my phone. Ah, the life of PMA/ALS is never dull. Oh, and my past week has been FULL: children bookclub, doctor visit to the ALS Clinic, adult bookclub, and now rolling down I40 to see our youngest. I hit a brick wall. My readings are speaking to me but my heart has some cracks that have widened.
"How are you Ms. Alley?" Well, can you handle the truth? I'm worse. Where? All over from my head to my toes, and I don't like it at all. I've got new normals all around. From my struggling to type, sex, eating, and trying to stay positive I've got my work cut out for me. Yes, I said sex students. I miss the intimacy. So please for me enjoy your partner. I can't dwell too long here or I'll become morose again and I'm writing for the first time in a week and I don't want to lose my muse.
Hey like my friend yesterday told me, "There's always someone hurting more than you." It's true. So yesterday I start watching Gleason. He chronicles his ALS journey for his son. I also watch to peek into the future. My neurologist mentioned the tracheotomy last Wednesday. I wanted to get to the part and watch Steve Gleason when he got his. Here's how my video adventure went. I cried desperately and uncontrollably about 40 minutes and only got to the place where his diaphragm was starting to fail so students I still have some research and crying to do yet. I'm about halfway through it. I kept having flashbacks of my life and of my friend Peggy. Peggy was losing her voice and communication ability right before she started her new chapter. Thinking of the tracheotomy option makes me side with Peggy.
Another blogger with ALS has recently been invaded by having to use the Dynavox to write with which is crucial for her because she too loves to write. She also still has her voice but her diaphragm, arms, hands, and legs are betraying her. Her name is also Sarah and she has dark hair. Irony. Peggy and I tried to work together on figuring out her Dynavox. I can tell you we understand her struggle. I was in a hot gin rummy match last night. Please indulge my side note here. My kids say hot gin rummy match when I'm playing and I'm oblivious to everything around me. They say, "She cant hear you. She's in a hot gin rummy match. She won't come to bed, she's in a hot match. Mom won't come to the table for supper, she's in a hot match." Anyway, you get the idea. On my iPad last night I lost. Not because I'm terrible but because my arms and hands locked up. It's happening to me too, Peggy. The little things we enjoy are taken away abruptly. I told you I hit a brick wall. I was angry, frustrated, and sad all rolled into one. So hello Dynavox and good luck to filling in the gaps. It's tough being a bystander.
As we roll along I40 I'm searching for something good to give you. Something to inspire you. Something to make you feel thankful for your life. Yesterday Steve Gleason said people constantly told him, "You inspire me." It baffled him. As I sit in my adult diaper on a pee pad with swollen feet, I am also baffled. I'm baffled that broken bodies can inspire but they do. God uses good and bad, victory and defeat all for his good. So I continue to kindle my fighting spirit to let Him use me. Rejoice and be glad my friends in this day and I will too. Today will be spent with my youngest and will be beautiful. Thanks be to God.
Sarah Anderson Alley
Quote of the day:
In a gentle way, you can shake the world.