Bad Days

The TPN nurse wanted me to weigh myself three times a week. I balked at this, knowing that stepping on the scale can send me into an emotional tailspin. With so much at stake at this juncture, those digital numerals have exceptional power over me.

I don’t know what made me take out the scale this morning. I am eating as much as I possibly can and foods with incredibly high fat content. I keep telling myself that I am “doing my best” and that I can do no more than that. Perhaps curiosity got the better of me. I placed the scale on the white tile floor of my bathroom and tapped it with my toe to start the calibration. I stepped on and looked down: 77.5 lbs. How is that possible? I was 80.0 on Friday. It isn’t possible to lose that much weight in 4 days. I tried to calm myself down with a reminder that it was 107 with the heat index yesterday and that perhaps I simply lost a lot of water. According to wikipedia the human body is anywhere from 55% to 78% water. “It’s not a real value, Michelle,“ I told myself. “Let it go.”

After breakfast, I helped the kids clean out their rooms. It was the perfect distraction from my worry and an opportunity to achieve something tangible in a short period of time. Plus, it seemed like an appropriate way to mark the end of the school year and the beginning of summer. As I went through their school bags I tried to push all the negative thoughts from my mind: would these be the last report cards I would ever see, the last summer I will have with them, etc. Unfortunately, the entire process only took an hour, and I promised them computer time as a reward so now I am left here with my worry and loneliness. And I sit with my computer, as I so often do, trying to calm the emotional storm brewing inside of me.

Elizabeth Kübler Ross was a physician who described the grieving process in her book “On Death and Dying.” Her model came to be known as the “Five Stages of Grief” and includes denial, anger, bargaining, depression, and acceptance. Kübler Ross contended that the process was non-linear, in that patients often moved back and forth across stages rather than proceeding from one to the next. She also noted that not every person experienced all stages.

I suppose that I spent some time on denial in the early years of my disease when my symptoms interfered with my life in relatively small, tolerable ways. Having two children was probably the greatest act of denial, and hope, possible under the circumstances. Denial served me well; it kept me from curling up into a ball and “dying” emotionally long before my physical death. Like most coping mechanisms, denial can be incredibly functional or detrimental; it’s a matter of balance. In my work as a support group leader I have seen denial work very well for some people who use it to keep living while managing their illness. In contrast, others use it to downplay the seriousness of their condition and forego appropriate self-care.

For years, I honestly believed that I had skipped the anger stage. By nature I am not a bitter person. I wasn’t angry with God for “doing this to me.” Nor was I angry with myself for the decision to strip a rocking chair in a poorly ventilated room. There didn’t seem to be anyone else to be angry with so I had given up on experiencing that phase. Eventually I realized that I had actually never moved on from anger. My anger actually started after my first rheumatology appointment when I was misdiagnosed despite my own thorough research that suggested that I had scleroderma. Fourteen months and three rheumatologists later, a doctor finally confirmed the diagnosis I had made within weeks of the onset of my symptoms. Over the years I have spent countless hours in medical settings, enduring everything from protracted waiting times in overbooked clinics to poor advice from providers with limited to no understanding of my illness to unsympathetic providers. Yes, I was (am) angry. In fact, I’ve been stuck in the anger stage since my first encounter with a health care provider and the level of my anger on a daily basis is a pretty good gauge of how recently I have interacted with this so called “system.” So anger is a pretty compartmentalized grief stage for me.

As far as bargaining goes, I don’t think I spend a lot of time here. I just don’t picture God as some Monty Hall like persona in the heavenly version of “Let’s Make a Deal.” I just don’t think he’s up there waiting for me to express the exact “make or break” promise that is going to commute my sentence. So I don’t spend time promising God to become a better person if he would just do me this one little favor. I have mulled over my life at length and, quite honestly, I cannot imagine what I could have possibly done to deserve my situation. I will admit that I was a pretty shitty girlfriend in a couple relationships in my early twenties. I could also have been nicer to Bill on many occasions, especially those involving the dishwasher. And, indeed, I cuss entirely too much. Even cumulatively these and my other failings don’t seem to merit my current circumstance. So, I don’t really see what I could bargain with anyway. I suppose I could offer to adopt some orphans or something similarly humanitarian and selfless, but I just don’t think that is what the Big Guy is expecting from me. (Though, God, if you happen to be reading my blog and there is something specific you had in mind, some sort of sign would be appreciated. I can always me reached by email).

So this leaves me with depression and acceptance and I just seem to ping-pong between the two constantly.

I don’t like the term depression; I prefer sadness because that is what it feels like, a profound melancholy. After having a pretty good week, Saturday I felt sad all day. Perhaps it was Jane and Abigail’s departure or just the realization that I have such a long journey ahead of me still. There is the saying about a journey of a 1,000 miles beginning with a single step, but no one says anything about going from step 345 to 346 when you are bone tired and your destination remains completely out of sight. I was just overwhelmed with sadness, and my heart felt like it alone weighed 50 of my 80 pounds.

I called a friend who has suffered on own terrible grief after losing twins. She seems to understand the way I waffle across emotions in an unpredictable and unmanageable way. She reassured me that what I was feeling was normal; she gave me permission to feel sad. “You are going to have days when all you want to do is lie in bed and that’s ok,” she advised.

We talked about the phenomenon of a heavy heart and she told me that after the loss of her boys a friend had sent her a weighted pillow in the shape of a heart. In her sad moments she would place the heart pillow against her chest to counter the pressure and listen to calming music. “You have to feel the sadness because it is going to come out one way or another,” she warned.

I made myself dinner. While I was eating the phone rang, I answered and heard Bill’s voice on the other end. Ignoring the fact that this was an expensive call from Shanghai, I finally heeded my friend’s advice and had myself a good cry on Bill’s long distance shoulder. My catharsis over, I finished my dinner, wiped my tears, and left to pick up Aidan from his playdate at the pool.

On the way home I stopped off at my friend’s house. Not only had she be giving me motherly advice all afternoon, she had been hosting my oldest child for a playdate. When I arrived dinner preparations were underway while the kids ran about the backyard. My son Aidan built a fort and stole all the girls’ shoes. I sat down and watched them play. My friend’s husband labored over the grill and lit the tiki torches to ward off North Carolina’s blood-thirsty insects.

When everyone else went into the house to eat I decided to stay outside. I adore their yard. It overlooks the neighborhood wetlands and is landscaped in a natural way that is beautiful without being fussy. I watched the tiki torches burn, trying to understand why the surrounding ornamental grasses didn’t go up in smoke. I felt like Moses with the burning bush except for the small fact that God wasn’t asking me to take off my flip-flops. At some point in the evening, swinging on their green rocking chair I shifted, at least temporarily, into acceptance mode. My heart settled, I went inside to join my friends at the table and nourished my soul while they nourished their bodies. Before I left I thanked my friend, “I feel like someone dropped my in a forest and there is no path. Thank you for showing me the way.”

I’d like to get to and stay in the acceptance stage in a Monopoly-like way “Go directly to acceptance. Do not pass through denial, anger, bargaining and depression. Do not collect $200.” I want to be all Zen about this. I want to be some peaceful creature that walks through this process accepting each day as it comes: one step at a time, one bite of food at a time, one good night kiss at a time. I want to model peace for my children so that they will be able to find it themselves. I want everyone around me to feel like this is ok, that we will all be ok.

Which brings me back to Kübler Ross …

Grief doesn’t work that way. It is a process. I may want my children to be at peace with their unfortunate lot but I highly doubt that they are going to skip denial through depression no matter how Buddha-like I become. And anyone who knows me knows that I am no Buddha (and it’s not just because I don’t have a big belly either).

So I am trying to accept that there will be bad days – physically and mentally – for the months to come. I hope that the bad days are fewer in number than the good days so that I have the strength to weather them. And, perhaps, I need to revisit the definition of a “bad day” so that I can learn to reclassify a somewhat OK day as a good one.

I have so much work to do.