“You must die into your one and only life, the life you must learn to love. It will show itself to one continuous movement – first learning to love your life and then allowing yourself to fully die into it – and never to die away from it.” – Richard Rohr
I remember, before my speech changed, I had been cleaning one of my rooms in Abington. I had been feeling very happy – things were going quite well with me. Suddenly, I was struck with apprehension.
Are you ready for the next trial in your life?
I said out loud, “Oh! No!”
Sure enough, my speech started changing.
It wasn’t diagnosed until I moved to Virginia and started choking: progressive bulbar palsy, a subset of ALS. The doctors don’t think I’ll get full blown ALS, which is Good News.
I now spend most of my time in internal dialogue.
It took away my right to speak to you, sometimes feeling like a tomb of silence. Without speech, I lose language, so to speak. It interferes with my response time to you. I’m losing the art of conversation. Even with the help of electronics, I have limited speech. I sit there and type and meanwhile the conversation has gone on without me. I can use it to speak to my spouse and one-to-one and small groups, though sometimes I just sit there silently, wondering if it is worth my presence.
I love to garden. It doesn’t take speech to garden. I have to get up and exercise with the finest equipment, neither does that take speech. I wave and smile at everyone – that’s my form of speech. I will get up my nerve and attend an art class.
I have a membership in a little church called Broad Street Mennonite. They were ousted from the VA conference for allowing two lesbians to marry in their church. Their attendance is between 8 and 12, maybe as low as 5 per Sunday. What I like about the church is the gestalt of worship; we sit in a circle and have infinite patience for anyone who wants to speak. Even me.
Love is flowing. God is present. Even in poetry Sunday, when the poetry is about animals and seasons and other things. First that was a stretch for me, and now it is my favorite Sunday.
After the diagnosis, I said I didn’t want to end my life with the despair that comes with the diagnosis. Every so often, I do feel like my life is not worth living. But then I remember: “My peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.” (John 14:27) I feel better after that.
I miss you all and it was hard for me to leave you. I love you.
-Grace Shenk Lynch
Though Germantown considers itself a single community, we are all individuals with our own backgrounds, and therefore any opinions expressed in this blog should be read as the opinions of the author, and not the official position of GMC. We encourage positive discourse, so all comments will be moderated before posting.