God never promised life would be easy, but He did promise we need not be alone.
Courage to me is making a decision to do something good despite being fully aware of the personal danger or difficulty. Courage does not fit my situation in that I did not choose to have ALS, but I think what people might see as courage is the fact that I have been able for the most part to move past denial, anger and self-pity to focus on being alive today.
It is disconcerting to know how you are likely to die, but I am not dead yet. And as my parents and grandparents have died, I have seen that attitude makes a difference in the quality of the life remaining. I made a choice that during the time left to me, I do not want to waste time on wishful thinking or bitterness. Instead I want to be honest about what is happening physically and then move on to what I can still do. That means using the gifts God gave me to contribute what I can, continuing to experience life and people, and most importantly, doing all that I can to leave those I love in a good place. The blessing “Life is short and we have so little time to gladden the hearts of those who journey along with us… .” has a whole new meaning.
I was lucky to be born calm and upbeat, a problem solver and a people person. All very useful traits as I deal with the constantly changing challenges of ALS. As in previous tough situations, I work with what life gives me and make the most of it. I enjoy the process of figuring out workable solutions; for example, it was not hard for me to acknowledge I can no longer speak and then to put my energy into finding computer technologies that allow me to communicate, often with added benefits. My iPad has even charmed small children into climbing on my lap to help me make my computer voice talk about them.
Life in general is still good. Whether I die next week, in 3 years or in 20 years, today is still here, and I have so much to do. Sew a quilt for my son Alex, listen to son Ned talk about his day, get in touch with old friends, weed through closets and drawers filled with good memories, create a web site for women with ALS to share their concerns and reflections. These are just a few of the things that fill my days. And I still get up in the morning ready to be surprised by the unexpected. God never promised life would be easy, but He did promise we need not be alone. ALS is a hard road, but God is here. I find him in the laughter and the tears I share with family and friends and in the kindnesses of strangers. On Sunday mornings God is in the music and the words and in the shining faces gathered around the altar for communion. I feel God at work in the caring listening of a Stephen Ministry gathering and in the quiet of centering prayer with my Spiritual Friends.
With the help of our discerning clergy, I am learning to balance finding God in the hustle and bustle of this world with finding Him in the quietness of my own solitude. I am grateful God is present, helping me both to live each day on earth more fully and to learn better how to rest in Him. He gives me the strength to face what has come my way and to live as is best for me and for the people I love.
8:00 a.m. Holy Eucharist
9:00 a.m. Holy Eucharist with music
10:00 a.m. Parish Forum & Kairos
10:15 a.m. worship.together
Holy Eucharist for families with young children
11:15 a.m. Choral Eucharist
Silent morning meditation is offered at 8:15 a.m. weekdays, in the Mary Chapel.
We would love to have you join us.
This Episcopal church is located in the heart of the historic neighborhood of Chestnut Hill, five blocks west of Germantown Avenue at the corner of St. Martin’s Lane and West Willow Grove Avenue.