Several weeks ago, I talked about a special project I'm working on--taping conversations with a friend on Conscious Living and Conscious Leaving. Rather than to continue to refer to "my friend who is dying of ALS," I've gotten permission to use my friend's real name, Ilene Kouzel. To find out more about Ilene, you can visit my website, in the
About Us section. In addition to being a friend, Ilene has been an Associate (read: Colleague and Collaborator Extraordinaire) for some time.
Ilene emailed me her thoughts after reading many of the questions that people had submitted. I'm not posting all the questions as the list is lengthy AND I think you'll find her thoughts to the questions enlightening.
If you are so inclined to leave a comment, please do. Ilene will be reading the comments from time to time.
Here's what she had to say:
1. I have actually said to my husband that I am glad I don't have cancer or some other "maybe curable" disease. I would probably be spending my last year or 2 madly dashing around trying to find a cure. I feel somewhat lucky that my incurable disease does not send me on wild goose chases or require hours and hours in the hospital and with doctors. A very demeaning experience. So I consider myself lucky with this diagnosis. There is really nothing to do or fix or endure in the realm of treatment. A blessing maybe in disguise.
2. My life is very much about now, not preparing for dying. If anything I am more present than I 've ever been. In some ways, even more alive.
3. Humor is huge and a great coping mechanism for me and my family. Of course I have always used humor so it is probably just a continuation of how I cope. My humor not only helps me but helps family and friends. The impish part of me still gets great pleasure in watching when I say something funny about my condition or dying to someone who is more uptight or straight-laced than I. I still remember my friend Bill's face the first time I made one of my morbid jokes. He was horrified, but saw me laugh and didn't know what to do. Now he busts up as hard as I do. He lost his wife some years ago and so I know my situation brings this back. And yet I also know it is very healing for him to be around me.
4. I try to help people be with me by asking them straight out, "what is it like to see me this way or to see the changes in me since last time we were together?" It gives them an opening. A way to know it is OK to talk about it. I comment that I can hear my speech changing, can they hear it or what is it like. Of course, this is who I have been for many years, up front, forthcoming, inviting of conversation and expression at the deepest level.
To the person who said "you die the way you live." I find that true. Many times I have gotten the response, you are much better than I thought you would be.
I think this speaks to what people see, my spirit as strong and bright. They do not see as much the withering body. My husband says he does not really see my chair, he sees me, my spirit, my boldness. I have become very bold with this disease. There is an urgency when you know your days are numbered. I don't beat around the bush I am more direct and straight forward.
5. My family and friends seem to deal with it in their own ways. Those that are able to be around me and willing to face what is true seem to do the best. Those who avoid either seeing, speaking or being with me are more alone with their own thoughts and feelings.
I think it is truly more about each of them and what they choose. Do they choose to be with their own myths about illness and dying or do they get curious and check out where I am at? Because I am actually in a quite good and positive space. People who are rigid in their belief that disease and death are bad are going to stay there and really can't see that this is not where I choose to be. I am not talking denial here, I am talking true choice.
6. It is fascinating to me to see who has become closer or remained in my life and my process and who has pulled away. Some people call me and say, "are you in pain?" They tell me they pray for my health or they send me info. on supposed "healing" tips. It is very apparent to me that their interractions are for their own mending, healing or meeting their needs not mine. If they were "seeing" me and letting in the truth of my process they would be asking different questions and treating me more like a "normal" person not broken or outcast, or one to pity.
7. My husband and cousin are not afraid to be mad at me or put me in my place. They do not treat me with kid gloves. And. . . when I am sad or hurting or feeling the harshness of what is happening they are there for me, loving me, holding me, crying with me.
I still have the full range of "this is horrible and I have it" to "this is a blessing with gifts and part of my journey." And the people closest to me have learned how to share the roller coaster ride with me. We are flexible, honest, confrontive, loving, supportive with each other. I can have a morning of being happy to be alive and in love with life and I can have an afternoon of tears, sadness and wishing it would end. They hang in with me and do the best they can to not take away what is there but to comfort or be real. They didn't know how to do this at first, we have learned together.
Just like most things in life, you learn what works for the people involved. For me, being real, using humor and not pushing things under the rug, continue to work. Maybe that is why I am not uncomfortable with this whole project, maybe that is why it is me. This is who I am. I have not changed who I am with this illness, just become closer and truer to who I am.
Ilene told me that it felt good to write some of these thoughts down. She'd like to specifically address via email some of the questions that were submitted. I'll be posting a specific question, with her written answer, starting next week.
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