So why am I sitting here today feeling like a lump on a log, woe is me, sleeping for hours on end?Ugh, enough! Get over yourself Deb! Buck up! Tell the ALS to go fuck off and do something for someone else. Wipe off the kitchen counters, or send an email to a friend, or write a thank you note. Geez! You are blessed with the need to write a million thank you notes, and all you can do is have this pity party for yourself!?
Stop focusing on what you can't do and focus on the CAN DO!
My CAN DO is becoming more limited every day. Let me rephrase that. I still CAN DO things but it is becoming more difficult and it is really pissing me off. I can still talk, but I slur many words. I can still type, but it is tiring on my hands. And I can't shift my thinking from this negative, icky, woe is me hole I have dug for myself back to the positive, not self absorbed person that I really want to be. I am tired and cranky, and I don't want to be this way. I don't want to be tired. I am tired of being tired. Where is all that energy I used to have?! I wish I really could have bottled it. I want it back.
And I know that these feelings are warranted. And I know I have the right to have them. I know that. I just don't want them anymore. Go! Be gone! Go away so I can be productive and carefree. Go away so I can be helpful and my old self once again. Go away so I can focus on being appreciative!
Yesterday I needed my fingernails cut. Many were jagged and broken. The day before I had taken the nail clipper in my hand and tried to cut my nails myself. I didn't have the strength to push the clipper hard enough to cut. So then I tried to use my teeth to push down on the clipper, but to no avail. The nail clipper went flying. So like with many things I can't do I asked Adam to do it for me. And yesterday he clipped my nails. With ease. And grace. No flying clippers. No use of teeth. At first I was in awe that something so difficult for me could be so easy for him. And then that awe turned to envy. And then that envy turned to general "I'm pissed off because I can't trim my own fuckin' finger nails by myself". So that is where I think I am right now. Envious and fuckin' pissed off. Ugh!
I was going to apologize for my overabundance of the "f" word, but no, I'm not. It's the only word that I have right now that appropriately describes my mood.
Taking a few breaths.
Ok. Thinking about yesterday. About the nail clipper incident. But there was also the time I spent on the pool deck at a Lawrence Lightning swim meet, seeing the sea of red swim caps that said "Live to Love, Love to Live". And the signs. The handmade signs with the same message, all in support of our family. And the smiles. The smiles of the kids as they saw me come in because they were able to make a connection between the cause and the person. And the greeting. The "Hi Mrs. Dauer" from Annie, and remembering I have known her since she was a wee little girl in her mother, Missy's arms.
Ok. Thinking about today. About the many hours I felt sorry for myself. But there was also the time I drove with Adam to Target in our new van. And I was able to go in the power wheelchair, and cruise around the store by myself, and be in control of my own destination out in public for the first time in a very long time. And the steps it took to get the van. And the the generosity it took to get this van. And how this van is a sign of freedom not restriction.
Again thinking about today. About Mindy taking the time to visit. And how it was really lovely of her to come see me. And how so many people reach out. And how the ALS is really making me feel more connected.
I am feeling a bit more like myself. I was able to move from the woe is me, to seeing the good.
However, I am still fuckin' pissed off about the nail clippers.
Live to Love. Love to Live.