Just got back from visiting a dear friend who was recently moved to a assisted living facility. He has ALS. If you have never had the opportunity to know someone with ALS stop right now and say a quick prayer of thanks. It is brutal and always wins. Because my friend really cannot communicate with me much anymore I just hugged him, held his hand and told him I loved him. I found that giving him a shoulder massages and rubbing his legs, arms and feet made him more comfortable from the nods and moans he gave me in return. It is so incredibly hard to wrap our human minds around someone never getting better, just worse, day by day. We are so hard wired to hope the next time we see them that they will show signs of improvement, get better. Not with ALS. As I see it, it is a long lonely journey that has no happy ending. That is difficult for a person like me, I don’t like goodbyes to begin with.
I spent 2 hours trying to make him comfortable and trying to communicate with him. Little actually spoken, but volumes understood. As I walked outside to leave I was overwhelmed by the freedom I felt. Yes, I could leave. I could feel the warm sun on my skin, I can walk to my car and drive away. I went home and ate lunch. Yes, I can eat, taste and swallow my tuna sandwich. All these things that my dear friend could do last year at this time. Didn’t we just walk the neighborhood with our boys trick or treating? Now he won’t ever walk again, much less talk, drive, eat, drink or much of anything else, but think. What do they say, “A mind is a terrible thing to waste”……. His is special.
I left crying out prayers for peace, comfort, rest, grace and acceptance for my friend. I prayed that God’s Holy Spirit hover over him, give him guidance and the company he needs as to not feel so alone in this final leg of his journey. To hold his hand as he lets go and provide a soft loving, safe place for him to land. For God to sustain his wife and son as they move forward on this painful path…. frustrated, angry, scared and worn out. Most of all that they know they are loved and not as alone as they feel, for God’s healing will come to all three just in different ways.
The only comfort I could find is that my God loves all 3 even more than I do. So I will keep showing up to provide shoulder rubs, hugs and words of support and love then leave the rest in His hands.
Today I was reminded to stop and feel the sun on my face, use my arms to hug, my voice to praise, encourage and sing. I will not complain how far I have to walk to get somewhere, but use my voice to speak my mind in grace, truth and love. When asked to shoot a basket, kick a ball, play catch, read a book or go for a bike ride with Jackson and Grace my answer will be “Yes, I would love to.”
Life is fragile and is a daily gift so easily overlooked …..open it, embrace it and celebrate each day for the gift it is.
So true — be grateful for the little things like eating a sandwich. ALS. That is my secret fear. (Guess not secret anymore.) What a beautiful picture of you and your friend.