Exploring Health & Healing

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Archive for November, 2011

My Father has ALS

Posted by Wee Sandy on November 22, 2011

My dear Dad, John, was just diagnosed with ALS (Lou Gherig’s disease) and is degenerating rapidly. He has lost the ability to use his right hand at all, and has extremely limited use of his left. His speech is slurred and difficult to understand. He is in pain.

John is a very kind and creative man. He is a fine songwriter and musician, though he can no longer play, of course. His songs and poetry are mostly about the intricacies of love relationships, and they are so true and easy to relate to that he had quite a following.

He was also a very skilled woodcarver, creating beautiful, intricate pieces displaying the beauty of nature’s creatures, big and small. Toward the end of his ability to carve, he started setting up an online business (www.molloyandwhite.com) to sell resin casts of the carvings, and to offer mold-making services. The site has now begun to expand to include the work of other artists and craftspeople. It is the business legacy he is leaving behind, and it will make such a difference to his community.

He is the author of “Ecological Agriculture,” and has been in the forefront of every movement for individual rights (women’s, children’s, animals’, and so on) – not by getting out and aggressively protesting or proselytizing, but by expecting that they would be granted, and accepting nothing less. His peaceful, friendly, generous nature always made people want to listen to his words, and his words were always full of respect and the pursuit of mutual benefit and personal dignity for all. His turn to plant and insect rights – in other words, the rights of every single living thing – are still far advanced for his time, just as his insistence on the rights of women & children once were.

He is in a pretty good place, emotionally, and as always is of excellent spiritual focus and faith. We have talked a lot about death, since I am also crippled and in pain, and he is ready and willing to make the transition when the time comes.

Mentally, logically, and spiritually, I’m right there with him. I would rather have him die than linger in pain and slowly suffocate as most ALS patients do. I would like him to get to the next place before me, so he’ll have the “lay of the land” by the time I follow him. I’m as excited about the life of the spirit after death as he is, so on one hand I’m rooting for a quick, easy death for him.

But emotionally, I feel a constant sense of panic – like the feeling I get when I’m in the waiting room at the dentist. When my Dad is free, it means I will no longer have my Daddy to talk with, to hug, to crack silly jokes with, and to go to when I need someone who loves me unconditionally and completely.

My Daddy is leaving me, and I’m torn between wanting him to go, for his sake, and wanting to cling to him and make him live as long as possible, for mine. The world will be a darker, less friendly place without him. How will I bear my disability and pain when he’s not there to cheer my heart and spirit?

I wish I could die when he dies, but of course there’s very little chance that could happen. Besides, there are people who love me, who couldn’t bear to lose me and John at the same time, or even within a couple of years of each other. So I’m going to have to live, and go through the debility of suffocating grief, without his jokes, his words of wisdom, or his warm arms to help hold me together.

I wonder how I’ll make it. I feel like I might just lose myself in the loss, and he hasn’t even died yet. He is not the entire world to me, but he has been one of the very best parts of it, and I will feel the loss of him every single day for the rest of my life.

Now I have written part of what is weighing on my heart, and I’ve dropped so many tears on this keyboard that I’m afraid it might short out. So now it’s time to pull myself together, wash my face, and work on a mitten pattern I’m making for him – something warm, because it’s full-on winter here now, and it must be easy to velcro shut with the use of one’s teeth.

He said he thinks he might not still be alive in the Spring. I think I will paint him a picture of daffodils, tulips, hyacinth, and crocuses, so we can be sure he’ll at least see them one more time.

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