FA or not.

The other day a friend asked me what was the hardest part of having FA. I had no idea how to answer her. Typically, I am not at a loss for words. I think I mumbled something about how this disease has been such a slow progression. I explained that I don't focus on one thing that is hard. Everything is hard. I don't have a choice. I just live life as it comes. This answer seemed to work for both of us. We moved on in the conversation. I was touched by her sincerity. At the same time, I was unnerved by my uncertainty how to answer. Honestly, I was haunted by this question. Or deeper, I felt embarrassed by the real answer. In reality, I am ashamed of the truth. Ouch.
I was talking this out with a wise friend a few days later. "I am scared that the hardest part of FA is doing it all alone." She replied gently, "Isn't that we're all afraid of, FA or not?"
So, so true. Her question engulfed my thoughts for days. Maybe forever. For now, her question has been my filter as I respond to things. Like the other day, I was with a group of friends hanging out in their living room. Barkley was restless and had difficulty relaxing. Because of this, I got out of my wheelchair to sit on the floor with him. When the night was ending and people were saying their good-byes to one another, I commanded Barkley to stand. I needed to reposition my body so I would be able to hoist myself back in the wheelchair. A friend who was sitting next to me saw what I was doing and said, "Now I know you want to do this by yourself but can I help you?" I quickly made some kind of joke as I pulled myself up. I was so relieved that I didn't fall as I declined his offer to help. I couldn't stop thinking about his disclaimer, 'I know you want to do this by yourself...' Ouch. Rewind back to the question my friend innocently asked a few days earlier, "What is the hardest part of having FA?"
This was it. I was answering it. Right there it struck me that I fight so hard that I don't need anybody. I got this. I'm fine. But the truth is, I'm scared out of my mind. I'm sad of what was and petrified of what will be. But it's in the now, the present, that I am afraid of doing life alone. And yes, for me that is a life with this dreadful disease. But it is the life I have to live. And my challenge today and tomorrow and the day after is to remember God provides people in my life at the right time. I don't need to live this life alone.
FA or not.
(click on the above sentence to listen to the song that was playing as I finished this post. Gulp.)