For the last week Bill and I have been enjoying a medically imposed, 24-hour a day house arrest variant of a second honeymoon. I suppose we were due for a second honeymoon given that we celebrated our 10 year anniversary back in October, but I cannot say that this is exactly what either of us envisioned. Bill's ideal honeymoon would involve beaches and girlie drinks; my ideal trip would be an adventure to Morocco or Egypt, getting caught up in a frenzied market place and listening to the muezzin lead the "Call to Prayer." Despite a reality vastly different than our ideal second honeymoons, we had a wonderful week together. We thoroughly enjoyed our trip to Charleston thanks in large part to the incredible meals, lovely hotel stay, and long drive during which we discovered that after nearly 13 years together we still don't know everything about each other.
I honestly did not think it was possible that any air of mystery remains between us, at least on my end. Let's face it, I am pretty much an open book. I actually think being "too open" is probably one of my biggest flaws. I was thinking today about a sociologist named Cooley who coined the idea of the "looking glass self." His theory of identity development is that 1) we imagine how we appear to others (not just physically but the whole kit-n-caboodle), 2) we imagine their judgment of us based on that appearance and 3) we develop our sense of self through the judgments of others. I remember learning this theory during my first year of graduate school and really liking the name of the theory more so than the theory itself. Marketing really is almost everything; it's probably one of the few theories that I remember by name from a long two-semester course full of theories. Assuming old Cooley was on to something, I must be hellbent on giving an accurate appearance because these days I seem to be wide-open.
Once we got the hang of the TPN, it really only required a few minutes of our attention each day. Once I am hooked up it runs for 20 hours without any effort on our part. I just have to lug the backpack with the TPN and the pump everywhere I go. With the kids frolicking at the beach under the watchful eyes of our friends Dori and John, and Bill working only a few hours a day, we were free to do as we pleased. We slept in until 9 every day. We cuddled in bed before breakfast like we did before we became parents, and such an indulgence was no longer an option. Perhaps sloth will soon replace gluttony as my favorite cardinal sin.
Some friends of my arranged for a gourmet chef to come on Wednesday and prepare five days worth of dinners. So each night we enjoyed fine restaurant quality food without having to shower, shave, or spruce up. The chicken bistro cakes that we ate Thursday night were so good that I thought Bill and I might have a simultaneous orgasm that had absolutely nothing to do with sex. Apparently gluttony is still in the lead.
On Thursday we decided to go to the neighborhood parade sans kids. I can no longer shower daily because every shower requires a dressing change and, therefore, places me at risk for infection. So I have to get used to showering only twice a week. I wanted to look presentable for the parade so I showered, did my hair, and even put on make-up. My neighbor Kathryn and her daughter came over to decorate the dogs and my wheelchair. We marched in the parade and had a grand time with all our friends. Later Bill looked at me, "You look beautiful." "Oh, you just like the green eyeliner," I replied. And it's true he is a complete sucker for it. Then I looked at him rather incredulously, "How can you still find me attractive?" It doesn't seem possible to me. I look nothing like I did when we met; scleroderma has ravaged my appearance in every way. "Sometimes I think you look at me and you still see the girl you married." "No," he said without pause, "I see the woman that you are." This man with 20-20 vision chooses to see me with his heart instead of his eyes and finds beauty where physically there is none. (Yes, I have my issues with my imperfections too.)
The evenings of our second honeymoon where filled with watching funny movies and then retiring to bed where I read Nancy Drew (Amelia and I have our own private book club) and Bill read CNN. On Saturday we finally braved the activities that usually occupy most honeymooners. While physical intimacy is a challenge for us thanks to all the damage that scleroderma has done to my body, we try. I suppose that we still need to be together in that way despite all the struggle that it involves. I want so much to give him what most married men his age take for granted, but for us it is not so simple. Bill is patient and understanding beyond description. I know many men would have left for the lack of intimacy alone, but not Bill. He is as steadfast as a lighthouse's beacon. And as in many other aspects of our life together we have to settle for less only to discover that it is, in fact, more. Every kiss, every embrace, every effort is heartfelt and intended as the gift that it should always be. We are kind and tender and compassionate like old lovers whose love for each other is far stronger than any physical urge.
I remember standing in the back of the church on our wedding day. My parents were with me, but I felt all alone. I kept thinking to myself, "Are we really going to make it? Am I doing the right thing?" I walked up the aisle with my parents with tears in my eyes; Bill was beaming at me as if he had just won Publisher's Clearinghouse Sweepstakes. But the seriousness of the service must have caught up with him. My parents joked later that right before our vows they looked over at Bill and me and we both looked as if we were headed to the guillotine (the photographer, who managed not to get a picture of me going up the aisle did, however, get a picture of the priceless expression on our faces in the moment my parents later described). I sometimes think about my fear that day. And I often wonder if scleroderma actually kept us together. In the early years of our marriage when my rebellious and independent streak wanted out, scleroderma made me stay. I needed Bill more than most young women need their husbands. I couldn't leave and I am now I am so glad I stayed because I really love Bill, and I admire him, and I am no longer ashamed to say that I need him completely.
What Amelia and Aidan see every day is two people who never give up on each other no matter how hard things get. They see a father who gives their mother strength to keep fighting and comforts her mental and physical suffering. And they see a mother who does everything she can, no matter how small, to lighten their father's burden. They watch us work through our struggles, they see us fight, and they see us apologize and make-up. We have hidden very little from them because, quite frankly, we are too tired to orchestrate life. It happens wherever and whenever it happens. I hope that what remains with them as they go through life and enter into their our unions is the memory of the tenacious way that Bill and I cling to our life together.
I want to survive for many reasons. I admit that I want to survive primarily to raise my children. But a close second is to grow old with Bill. We have worked so hard to build a loving marriage in the face of this illness. Scleroderma has given us an amazing marriage. And I realize that it may be a lot to ask but I would like for it to fade off into the distance and leave all its gifts behind for us to continue to use as the foundation of a life in which it no longer occupies center stage.