Recently I received a new theraputic technique developed by Aaron Mattes of Florida. It is called Active Isolated Stretching (AIS). Two therapists trained in this technique have worked on me and both believe they have the ability to restore muscle strength in my neck and shoulders. The requirement is that we do exercises every day to reinforce the work. It is very painful and expensive.
Loyal readers of this blog know that I have accepted my illness and the fact that there is no cure. As my illness has progressed, I have been in a peaceful place knowing that it will soon be over. My plan to stop eating and drinking through the feeding tube will effectively end my life in less than a week because our bodies cannot survive without water. My decision was made a long time ago and would be timed to when I felt that my quality of life has diminished to a point where I feel I cannot go on.
I thought this was my only option and now I am confused. I find that I still have some hope to live with enough of myself intact, for a time, to be worth the effort. But the cost of this new option is huge.
On Friday and Saturday I received six hours of this AIS treatment. It was NOT fun! Chris took photos and videos of my therapist working on me so that he could assist me in doing the exercises. It was very difficult for Chris to see me in pain, which makes him skeptical about the process.
I am skeptical, as well, and I wonder if I could do it…..Does the end justify the means, so to speak?
Recently, I read Tuesdays With Morrie, by Mitch Albom. This book was a bestseller for years, it seems. It called to me from the shelves numerous times, but for some unknown reason, I resisted buying it. Little did I know that it was a true story about a unique man with ALS! And, if I had read it then, I surely would have loved the story, but it would not have the same meaning as it does now. Serendipity happens.
This is an inspiring story of a brilliant man and his adoring student. The dying man had so much insight regarding achieving happiness and what is important in life. Surely, it is not about finding happiness through identifying with the home you have or the car you drive. People who acquire these possissions as a way of defining themselves are sorely lost. How sad that in a materialistic society people continue to attempt to garner stature, popularity and love through their possessions!
Morrie said, “So many people walk around with a meaningless life. They seem half-asleep, even when they are busy doing things they think are important. This is because they are chasing the wrong things. The way you get meaning in your life is to devote yourself to loving others, devote youurself to your community around you, and devote yoursefl to creating something that gives you purpose and meaning.”
My new therapist is one of these people. He feels deeply about his patients and holds himself to a very high standard. For Bill, it is not about the money, but the benefit he can give in order for people to live pain-free meaningful lives. And this describes my dilema. I believe in him and his skill, but the cost to me is huge in terms of my ability and desire. “What should I do,” I ask God. “What should I do? I thought I was sure of this journey and where it is leading. Now, I am no longer sure and I fear that my will to involve myself in this AIS process is too weak.”
And yet, the thought of living 6 months longer than I expected or even a year, is so appealing. To be able to spend a bit more quality time with my beloveds is a beautiful dream…..
My plan is to continue my prayer and to have faith that I will know what the best decision is for me. I need to give it time, like a newly planted seed to be nurtured. My faith tells me that I will know what is right for me.
I would love to know how many people are reading these words of mine. Some of you leave beautiful messages, but that isn’t necessary. If you want to remain anonymous, that’s fine. You could leave just one initial, to let me know you have taken the time to read my thoughts. I surely would appreciate that effort on your part, and if you are willing, please say a prayer to your God asking for me to be given direction in resolving my dilema.
God bless you!
I have read your post today, and I believe you already have your answer, Barb.
❤
I read every new post on your blog. You are an inspiration to all of us and I will pray that God gives you guidance in your dilemma.
Denise, thank you so much for these kind words. I am gratified knowing that as I share my journey, it is somehow speaking to others in a helpful way. Barb
I read all of your posts, Barb. You are always in my thoughts and prayers.
Miss you Amy. Thanks for following my blog and prayers are always appreciated. Love Barb
I read your post and My thought while reading was that you already have made your decision, and you need to follow your gut and not look back….no what it’s. Blessings.
T
Thank you so much, Terri.
I read your post, and it was powerful as always. My prayers are with you
Barb,
I am sorry that you are in such a difficult situation. I do believe people are called into our lives for a reason, but only you can decide what that reason is. Whatever decision you make will be the right one and everyone will respect your choice.
Andrea Richards
Thanks, Barb, for sharing your thoughts. I am very inspired by you. From amongst the confusion the answer will spring. The journey is what it is all about. I too read all your posts and appreciate them greatly 🙂
Susan (Sheldon)
Barb,
I always read your blogs. They are always very powerful. Sometimes I am at a loss for words. I am always inspired and difficult that I cannot talk to you, like on Sunday. At least I felt your presence over the phone. I miss & love you. You are always in my prayers.
Suzy
Barb,
I read every single post you write, and find laughter, tears, energy and inspiration each time. (I think you know this already.) I admire your strength for sharing this journey with so many. Love you.
You always know what is right for you… something I admire greatly and aspire to. I will send strong energy and support as you walk through this decision, but I have a feeling you already know what is right for you.
Sarah D.
Barb,
I check your blog every few days & have read them all. Not only do I admire your love, courage & strength as you face such a situation, I’m also inspired to think carefully about how I’m living my own life. My thoughts & best wishes are with you. Whatever your decision, it will be the best for you.
Lots of love to you.
Nadine
Nadine,
I so love being in touch with you again. I am gratified that my words speak to you…….I think that is part of the reason that I am on this journey. Surely, I don’t have all the answers, but I believe that if I share my experience, perhaps people will reconsider the ways in which they choose to live. I truly believed that I’d be around at least as long as my parents, but now I know that we never know. Don’t put things off. I did and now I regret that. I assumed I’d have forever. I am grateful that most of it I’d do all over again.
Much love, Barb
Barb, Of course I read your blog, even though I’m often a few posts behind (like now)! You present a clear and true window into your world and it’s obvious that you have touched so many lives. I always knew you had tremendous soul and depth; what I did not know is that your are quite an eloquent writer! Please keep doing it. We need your pearls of wisdom and your generosity of spirit.
You are my teacher, mentor, inspiration and I love you so very much.
And you know I love you, too, so very much.