Tuesday, June 3, 2008

Soup for You

I will always have doubts about the existence of God with a capital “G.” I have the proverbial mustard seed of faith. I believe in God because I want to believe that we are more than the consequence of some great cosmic chemical accident; I want to believe that there is some benevolent force behind this experience we call life.

When I returned home from having my feeding tube removed, I realized that I was no longer prostrate before my disease but rather on my side, knees to chest wishing desperately to return to the womb. I felt almost paralyzed by everything: the unfinished projects about the house, the prospect of making a meal, greeting the children at the bus. "How am I going to get better?" I thought to myself. I am so weak and tired. Four months ago I weighed 79 pounds. For four months I suffered through the ups and downs of the feeding tube only to weigh in at 80.2 pounds. All the pain and struggle for nothing. In fact I felt far worse, physically and emotionally, than I did before the tube was placed.

But somewhere deep inside me, I felt a profound need to do something that would make me feel like I had not just taken my first big step toward death.

Like many women I have a hard time asking for help. Over the past several months, I have been learning this incredibly important yet undervalued skill. Shortly after arriving home I called my friend Dori who manages the cadre of folks who have graciously volunteered to help us in any way possible. Prior to calling her I made a list of all the things I needed:

1. Someone to go to the store and buy ginger ale, cranberry juice, jello, and Boathouse Farms smoothies,
2. Volunteers to make pureed soups so that I had something I could eat without having to make it myself,
3. My friend Donna, who makes this amazing chicken broth, to bring some to me.

While I was making my call, Bill was making his own. When he left me at home to go see his patients, I told him that I could not be alone. I wasn’t afraid of hurting myself, I was simply the loneliest that I had ever been and could not bear it. He called my friend Sally, who was my dissertation advisor and has since become a dear and dependable friend. Within an hour Sally was with me on my back patio, holding me together while I voiced my fears and cried my heart out. Sally stayed until Bill returned home, mothering me through one of my darker moments.

Bill had standing plans to attend a Jeff Foxworthy show with a group of men from the neighborhood. II wanted him to have his escape so my friend Nina came and stayed with me. We sat on the sofa and she held and consoled me. Her natural serenity washed over me like a warm spring. After a couple hours I observed, “Why in the world do you work as a PhD in Biology? You have a gift for comforting people.” To think she spends her days with flies. Nina helped me put the kids to bed and stayed in the house after I went to sleep until Bill returned home.

Bill left for China Saturday morning. After he left I sent out an email updating friends and family. Again I was reaching out for help. I gave my phone number and permission to call. By nine Sally returned to sit with me some more, this time armed with chickpea soup that she had made the previous evening. Bill had arranged for my friend Kathy to relieve Sally from her shift and she arrived, funny movies in hand, to pass the afternoon hours. Together we walked the dogs and enjoyed the sunshine and I practiced putting one foot in front of the other. After Kathy left I enjoyed some alone time with Amelia (Aidan, my escape artist, had completely filled his calendar so that he didn’t have to be home with me at all). Then my friend Kathryn arrived with her daughter Maya and a neighborhood boy, Alex. The kids played and Kathryn and I talked about life’s hardest topics: life, love, motherhood, depression, and death. Kathryn is a peaceful and honest soul in whose presence I always feel calm. She was the perfect visitor for the end of a long day. She stayed the night, rose and fed the kids breakfast and got me ready to face the next day.

Over the course of Saturday several friends called. Kevin and I have been friends since childhood. I went to his junior prom and he went to my Soph Hop. Today he is a Roman Catholic priest (I didn’t drive him to it, I swear. He was holy even as a child). We had the kind of heart wrenching conversation that old friends have. At one point I told him, “I am so afraid of making the wrong decision.” “Oh Michelle,” he replied, “Right and wrong implies that there is a moral dilemma here. This is not a moral dilemma. Whatever you chose is a ‘right’ decision.” He gave me such relief with those words because I felt that if I refused to try the TPN I was essentially choosing to die by starvation, that I would be killing myself. And I don’t want to do that. After listening to me for a long while he said gently, “Michelle, even Calvary only lasted three hours.” What powerful words to come from a priest. We said our good-byes and I hung up feeling less overwhelmed with guilt for even considering the graceful exit option.

Then my former OB called. Yasser shuffled into my life nearly 10 years ago and embodied everything I thought a physician should be: smart, down-to-earth, and compassionate. His spirit was such that I could never let him shuffle back out again and have kept in touch with him every since. On Saturday he was my self-appointed cheerleader, and he built up my spirit and made me feel like I might have the strength to go another round.

Bill’s sister Jane arrived Sunday to help me while he is working in Asia. On Monday I shared with her all my feelings about my dilemma: I am not ready to die but I don’t want to sign up for more suffering. As she sat at my kitchen table nursing her daughter she looked at me, “We all want you to stay because we are selfish and we want to see your body and touch you. We want you to be with you. But we have no right to ask you to suffer. Only you can decide what type of life you can tolerate. Maybe we should make a list of what it would take to give you the quality of life you need to make it worth living.” As her words settled into my heart, I smiled to myself. I remember meeting her as a 14 year-old adolescent and I had to marvel at the words of wisdom spilling from her mouth. How did she become so wise so young?

And then there was the soup …

Donna arrived with a container of frozen broth from her stash. She was already in the process of making more and she promised to return on Sunday with some carrot soup and more broth. Donna has four kids, ages 2 to 10. And yet she spent her weekend cooking for me. Donna prays while she cooks the soup and I started to wonder about how chicken soup came to be known as “Jewish penicillin.” Maybe those old Jewish mothers prayed over their soup too. Donna arrived on Sunday, t-shirt covered with the vestiges of her culinary pursuits, and handed me an enormous bottle of carrot soup. On Tuesday, Fran arrived with Portobello mushroom soup and promised to bring more whenever I needed it.

As I eat these soups I feel more than physical sustenance. After nearly four months of nausea, I savor the aroma and the flavors. They soothe my throat and warm my heart. They ease my spirit. Who knew love could be pureed and served in a bowl?

Last night I slept pretty well. I awoke at 5 and lay in bed thinking about John Donne. (You have to love a man who had the balls to write a poem, “John Donna, Ann Donne, Undone”) “No man is an island,” he observed. I thought about how communities used to pull together to raise barns and support each other in the days before commercial insurance took over that function. And I thought about how lucky I am to have so many people willing to nurse me and my family through this time in our lives. I don’t feel as though I am floating lost and alone; I feel anchored and secure. And I feel loved.

I keep thinking about the movie “Waking Ned Devine” in which a town pulls a bait and switch to ensure that the dead holder of a winning lottery ticket still gets the proceeds. As a result, the town stages a fake funeral for someone who is very much alive among the congregation but pretending to be someone else. The camera focuses on the imposter while his best friend delivers a eulogy. While the eulogy isn’t real in the sense that the man is still alive, the words are true and honest. The camera focuses on the imposter while he listens to his friend’s tribute and I recall the actor’s expression as one of the most authentic expressions of joy that I have ever seen on screen.

I told Bill last week, “No matter what happens. I know I was loved. I didn’t have to have a funeral to experience that.” And in this way I am so lucky and blessed.

I return to the notion that I will never be convinced that there is a God. My friend Stuart once shared that his rabbi said, “Let’s all agree that the God that you don’t believe in does not exist.” I loved this and felt so much better knowing that even a rabbi questions God’s existence. When I was in Catholic school the teachers would always talk about how Christ was unique in that he was human and divine. The only evidence they gave of his humanity was his fit of rage in the temple or his suffering on the cross. I always felt like they had missed something. Now I think I know what it is: Christ was not unique. I now feel certain that we are all human and divine in the same way that he was. I have witnessed God in my friends and family so much in the last several months, and I will never again doubt that divinity resides in each of us.


Anonymous said...

I am so sorry to hear you are struggling so mightily. I am sorry if you have covered this elsewhere; I'm wondering what treatments you have tried and who your doctor is. I am 43, mother of 2, diagnosed with diffuse scleroderma last year. I had some lung involvement and everything was going downhill until I went on Cellcept, which has been like a miracle cure for me. I realize it does not work for everyone, but I am truly shocked at how many patients with our disease have never tried it. I don't mean to sound naive; it's just a thought. My first two rheumatologists told me there was nothing to do (and did not suggest Cellcept). My third is Fred Wigley at Hopkins; he really knows this disease. Anyway please write me if I can be of support or if you would like to know more. All best wishes. laurenpaul@comcast.net

Anonymous said...

I'd have to say that Father Kevin is a very wise man indeed.

Brad said...

If you're looking for something meaningful to entertain you during the day, I'd invite you to listen to some messages from my church. My attendance there over the last two years has moved me in powerful ways. You can check them out here: http://www.newhopenc.org/2006/sermonResources.asp (or download podcasts)

I'd start with the most recent series (the Gospel).

Continuing to pray for you, as is my church...