Sunday, September 14, 2008

The Voice of Reason, Part II

On Monday night I was sitting on the floor cleaning out one of the bathroom cabinets and mumbling irritably to myself. I heard Bill come into the room and open the linen closet. “Bill,” I began trying desperately not to raise my voice, “Stephanie and I spent a lot of time cleaning out and organizing the closet and these cabinets and they are already a mess again. Could you please put things back neatly where they belong?” There was silence. I looked up to find not Bill but Marie staring back at me.

“I’m sorry,” she stammered looking guilty, “I should have stopped you. I don’t know why I didn’t.” I continued to grouse about Bill’s refusal to keep the house in order. That’s when Marie, to her credit, braved dangerous waters. “He can’t, Michelle. His plate is already completely full. He is bearing an enormous burden and doing it as well as he possibly can. I can’t do one more thing, no matter how small it seems to be. He is at his maximum.”

I began to cry tears of anger, guilt and frustration. I wasn’t angry with her: she was telling me the truth as gently and lovingly as possible. I was angry at this situation that I cannot rectify. I do not have enough energy to keep things organized the way I once did, but messy pantries, closets, and drawers still rattle the obsessive compulsive in me. Along with my anger I felt guilty for demanding even more from Bill, who is already drowning in turbulent waters and facing the reality that the future will lead him to a far more treacherous place before he reaches a calm shore. And, as always, I felt frustration that life had tied my hands behind my back and left me so reliant on others to accomplish the simplest of tasks.

“I’m sorry,” Marie cooed, “I shouldn’t have said anything.” I assured her that she had done nothing wrong, that I needed to hear it. In realty, Marie is the only person who could get away with saying those words to me. Within anyone else I would have become angry and defensive. “I try so hard to accept this illness – the physical and emotional suffering, the changes it has brought into my life – and I try not to complain, but all of this is incredibly difficult for me too,” I explained.

As I drifted off to sleep that night I continued to weep. The next morning, while Marie and I organized my office, I was finally able to articulate succinctly my dilemma, “I feel like this disease is demanding that I become a saint.” I feel like I must bear this cross without complaint, feel only gratitude for my blessings (which I fully recognize are many), and acknowledge the reality that my life is still better than the lives of most people on the planet. I feel like “being a good person” demands that I feel no anger, no bitterness, and no desire. “But I am not a saint, I am just a human being and I can only take so much,” I admitted.

I sat there in child’s pose with Marie rubbing my back. She felt guilty for her perceived role in my sadness, but she had merely brought existing feelings into focus; she had done me a favor. I realize now that I am desperately afraid of devolving into a nasty, bitter person as my body continues to fail. I fear that I will ultimately lose myself – my spirit – to this disease and that seems far worse to me than losing my body.

9 comments:

Cha Cha said...

One of the many reasons why I visit your blog every day is that your spirit and your sense of self are so strong. You aren't supposed to be a saint, but whether you realize it or not, you practice an incredible amount of grace and honesty daily.

Fear not. At your very core, you are an intelligent, brave, graceful person and no stupid disease can take that away.

That said ... I would have been totally peeved about the bathroom cabinet, too. Part of being intelligent, brave, and graceful is also being HUMAN.

Songbird said...

Cha cha is right about what you share here.
I'm in the early months of figuring out how to live with auto-immune disease, in my case Rheumatoid Arthritis, and I find it very, very hard to let people do things for me that I really want to do myself. It's my job, my identity, my self-definition...and I am dealing with this relative to a chronic disease that may not be the death of me. So, I hear what you are saying and recognize it in myself, magnified by immediacy and severity, and my heart goes out to you.

desert dirt diva said...

I feel that asking bill to keep things as he found them is NOT to much to ask....but then this is me.....hope you have a great day.....

Chip said...

Sometimes it's good to keep in mind that we are human beings, it's not about being perfect (for you or for Bill), and you are both bearing so much stress. From my perspective you are both very admirable. Very admirable.

sharon said...

I admire your courage in posting a blog. However I wish to ask whether you have heard of the Marshall Protocol? Some of the participants in the first trial had scleroderma and they all seem to have improved on this protocol. You will find it at www.marshallprotocol.com You can even email Prof Marshall yourself.He is very amenable.

Dixie said...

I love this blog. I love that you are funny, introspective, thoughtful and normal. You are a kick ass lady, Michelle. The very fact that this blog is filled with your concern for others and how much your friends and family mean to you is proof for me that your disease will never take your spirit.

Ana's World said...

Michelle: You have explained that you have this disease and what's happening to you physically and emotionally and while there are some changes (naturally) to your essential "being" because of your illness, you're still you. Those attributes that made you who you are before you became ill are still what makes you YOU! Your hubby has a lot on his plate...surely he knows that you are grateful for all he does. But honestly you need to be a little easier on yourself...remember...less GUILT!!! Love, Ana

Carl said...

another great posting.

gustavolk-swagen said...

Thank you, Michelle. I cannot remember how I found your blog, but I am very grateful I did.