This year, Caroline is participating as a freshman clarinetist. She is so enjoying being part of the marching band, despite having to rise at 6. I have a enhanced appreciation of the band's music wafting up from the practice field. I am so thankful for her interest in music! That is something I can enjoy until the very end.
Everything otherwise is going well. I am in a "play;" actually, more of a set of spoken roles. Called "Seven," it puts voices to seven incredible women activists from different countries: Ireland, Guatemala, Cambodia, Pakistan, Russia, Afghanistan, and Nigeria. I am voicing Anabella de Leon, a Guatemalan congresswoman.
This will likely be my last (best) role: I was playing "Granny" in "On Borrowed Time," but access to the theatre was only by stairs, and those are too exhausting to me. Added to that the nine performances starting at 8 p.m., and it just wasn't feasible to continue. That was a very hard decision, but like many decisions, once made, everything seemed smoother in my life.
We are going to purchase a used Windstar adapted van. (Thank you Pat and Jerry for the assistance!) I NEVER wanted to drive a van; I am not a van person. So ALS has opened yet another aspect of the world to me. The importance of the van cannot be understated; it will allow me to continue working for much longer. I can't envision leaving my students and co-workers yet. I know that day will come, but I am going to put it off as long as possible.
I can't end without commenting on a video that was recommended on a ALS blog I follow. It was an ad from the Motor Neurone Disease association in England. It was disturbing. Not because it was offensive in the violence of the depiction of the onset of ALS. I just don't want to see the disease I have depicted as such a gruesome thing. Call me the Queen of Denial, but I don't feel oppressed or victimized by ALS, and I am repelled by depictions of it that imply oppression or victimhood. It is what it is; I have ALS, others have mental illnesses, cancer, MS, Parkinsons...it is how we approach what we have that makes the difference in our lives.
So as I motor off in my Jazzy to take a shower, please remember that I do not feel sorry for myself, so please do not feel sorry for me. ALS really has opened my eyes.
