Exploring Health & Healing

A place to discuss health & healing on all levels.

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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4 Responses to “My Father has ALS”

  1. Edie Swartz said

    How beautifully you express your feelings about your Father. And the fact that you refer to him as “Daddy” really resounded with me. So I had to write and let you know that I feel your pain as you anticipate the loss of your Daddy.

    I lost my Daddy years ago, and it is rare that a day goes by that I don’t think about him. While time lessens the grief a bit, the memories of losing my best friend on that Sunday morning in August of 1994 live on forever. My comfort and joy today is because I know that while his physical body died that day, his spirit is very much alive. This is but a temporary separation for Daddy and I.

    Thank you for sharing so freely.

    Edie

    • weesandy said

      Thanks, Edie. It’s amazing how a good father can impact his daughter’s life. I’m very proud of mine, and I feel blessed to have him. It sounds like yours was one of the extra-good ones, too. šŸ™‚

  2. lella said

    My daughter is an herbalist, and she recommended Plantain for her Daddy’s abscess, and so I found you and your blog.

    I’m so sorry to hear that your father has such a cruel disease. It’s been over a year since you last posted so you must be dealing with a lot of grief. He will be always near, I truly believe what I’m saying to be true. Blessings to you. I’ll keep you in my thoughts.

    • weesandy said

      My father has mercifully passed away, after a very difficult end. In fact, a lot of the grief lifted right after he died, as we no longer had to see him suffer. I miss him every day, but it seems that life has gone on and the world has not become empty and pointless without him, after all. It is just a whole different world now, where he has become an icon of what he believed in, and a memory of the one who loved me unconditionally. His death brought some of us closer together, and surprisingly caused rifts between others who had always been very strongly bonded. The world is just…different now.

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