Monday, June 16, 2008


I am terrified in a way that I have never been before in my life. Even staring at the barrel of an AK47 pales in comparison to this. That death would have been quick and left no motherless children behind. This death is a slow march along an uncertain path filled with choices that I do not want to be responsible for making. Everything feels like it is unfolding in slow motion and the constellation of emotions that fills my day – their sheer number and intensity – leaves me mentally exhausted.

I have taught Amelia and Aidan that there are two kinds of fear: the fear that protects and the fear that paralyzes. The former keeps you alive while the latter keeps you from living. The irony for me at this point is that I am trying so desperately to make choices that will protect me that I feel completely paralyzed. The responsibility I feel for choosing the right path is enormous and weighs on me like a suit of armor that immobilizes more than it protects.

I used to be able to discern between the two types of fear. There was a difference in the way they felt in my gut. There is a difference between the adrenaline surge that keeps you from walking down a dark alley and the one that keep you from boarding a plane to your vacation in an exotic locale. Maybe our guts understand probability.
But now my gut is in a knot and I cannot understand its messages. All it seems to be saying is, “I am desperately afraid.” So I am trying to innumerate and understand my fears, hoping that I might be able to deal with them one by one.

Little of my fears or anxiety lie in the past. I have few regrets, which is a blessing for me. I have lived my life fully so I need not waste energy contemplating foregone opportunities. I do wish I could change some medical choices that I made over the last year but I am learning to let go of these as well. Like most people I am afraid of what lies ahead: the months and, hopefully, years to come.

Perhaps the greatest of my fears is the uncertainty of what lies ahead for me. I feel as though the end of my life is drawing near. I cannot discern of this is depression talking, a realistic assessment of the situation, or a sixth sense. I don’t want to die. I have loved living and I want to be with my children and Bill for years to come. But I have this overwhelming sense of foreboding that my time is running out, like I am reading a novel and the author has foreshadowed the ending, and I just don’t want to read any further. When I was a child I would read the end of a book before the beginning and, if I did not like the ending, I would elect not to read the book. That’s how I feel now. I don’t want this ending. Of course, I am acting like I know then ending when, in reality, I don’t know at all. But when you lose weight despite eating as much as possible it is hard to convince yourself that you are not slowly starving to death.

I am afraid of being a failure. All my life I have been able to achieve my goals. What I lacked in innate intelligence, I was able to compensate for with hard work and tenacity. And now I cannot seem to effect any change in my health. The weight gain is proving difficult if not impossible. Because of the cough, I am fairly limited to eating soft and pureed foods. Neighbors have been marvelously generous in preparing soups, sorbets, and other foods for me and I eat every two hours for 12 hours a day. And yet even maintaining my weight has become a struggle. I feel responsible to fix this, to rectify the situation; yet, I seem powerless to do so. My lack of control and my irrational sense that this is some how my fault is fueling a depression that I also cannot contain.

I am afraid of physical suffering. My physical suffering has decreased substantially since the removal of the feeding tube. I can move about freely and without pain. My hope was that I could eat enough to slowly gain back weight over the coming months in a natural way without additional medical intervention. The prospect of needing TPN is overwhelming to me. I don’t want any more tubes, I don’t want to go into the hospital again, and I don’t want to spend 10-12 hours of everyday hooked up to intravenous feeding. But if I cannot gain maintain my weight on my own, I am not going to have much choice.

I am afraid of mental suffering. Prior to the last several months I have had no experience with true depression. I have endured physical pain in many forms over the years and I can honestly say that it pales in comparison to emotional anguish. Depression is an insidious and powerful beast. There are days when I feel like someone has cast a gray film over everything. I search for joy wherever it lies. This week the house felt so sad. So I turned on the Monkees CD and the kids and I danced in the kitchen (I find I can dance if I keep my feet in place and shake my booty and wave my arms only). It was such a small thing, just a brief moment but it put a smile on all of our faces and made life seem normal. And then there are moments when all I can see is everything I stand to lose and I want to curl into a ball and die, just to get it over with. So it doesn’t have to hurt so much everyday.

I am afraid of leaving my children unanchored in the world without a mother. I worry that they will never be able to heal the hole in their heart that my death leaves in its wake. I know they will never be the same after losing me and I want to trust that it is not an irrecoverable loss. But it is so hard to imagine how one ever recovers from losing a mother at such a tender age. That is why I am grasping at medical straws that I thought I’d leave untouched. I need to be able to look at my children and say, honestly, “I did everything I reasonably could to stay and now the most loving thing I can do is set you free from my suffering and yours.”

I am afraid of an undignified death. I do not want a hospital death, hooked up to tubes and machines. I want to go peacefully. I am afraid that being on TPN will make this impossible.

I am afraid to die. What if there is nothing after this life? What if it truly is an ending and not a transition? I cannot bear the idea that I will never see Bill and the children and the many people I have loved throughout my life again.

A couple months ago I had a dream that I had been called on a space mission for, of all things my mathematical skills (this is a very laughable idea). I entered into a large steel elevator and traveled to the mission center. When I arrived it turned out I wasn’t really needed and I spent all my time socializing with similarly redundant staff. At some point I had to repack my bags. Having accumulated a great deal during my visit, I had to leave a lot of things behind before making my way back to the steel elevators. I entered the large box once again and retraced my journey. When the steel doors opened again, Bill was there with the children and we were happily reunited. After I woke I felt certain the dream was a message to be at peace and that we would all be together again someday.

I try to use this dream to counter my many fears. And I try many other coping skills as well. I try to focus on being present in the moment. I physically feel my body in its surroundings. I finally realized this week that being present in the moment does NOT mean being happy; it means feeling whatever you are feeling at the time: sadness, fear, desperation. Being with the feeling seems to neutralize it somehow. And I have finally admitted to myself that I am clinically depressed and that I need to see a psychiatrist. This was a very hard thing for me to admit because I am hell bent on being “strong enough” to manage all this myself. Unfortunately, I cannot do SSRI because black-box warnings were written for the likes of me. They make me feel great for about 10 days and then they make me rock back and forth and wish to return to the womb. So let’s hope there’s a drug out there that can take the edge off for me without making me crazy.

There is the old saying about the past being history, the future being a mystery and the today being a gift. I remember seeing the MIlagro Beanfield War in college with m ex-boyfriend. At one point in the movie an elderly gentleman wakes, washes his face, and gazes into a decrepit mirror and says, “Thank You Lord for another day.” My ex thought he was being sarcastic, but I thought he was being quite sincere. I try to express that same sentiment throughout my day to remind myself that I AM still here and to resist the urge to enter some emotional coma that deprives me of the joy still available to me.

I didn’t realize how difficult this would be emotionally. I was never a big fan of amusement parks and I feel like I am on an interminable roller coaster ride. And I am holding on for dear life in more ways than one.

1 comment:

Sue R said...

I admire your willingness to share yourself with others as you wrestle with so many things right now. However long you are here on this earth, your children will miss you when you are gone. But I do believe they will be okay, in time. If they can get the help of a grief support group, that would be ideal. There are grief programs for kids in many parts of the country, and some even have groups, or know of them, that support families during an illness as serious as yours. There's a grief program locator at .

My mom died when I was 9. I did go on to find a meaningful place in the world and to have a good life. I do bereavement work with a hospice, and also am a musician. My brother and my sister grew into lovely, creative people. My sister made some photo collages of my mother which I have on a website at Even now, 44 years after my mother died, I talk about her and show people those pictures. You won't be forgotten.

There was a local mom some years back who knew she would be dying before her children grew up. She ended up taping messages to them about things she wanted to tell them at certain ages and times in their lives. She considered what she might say to them at milestones, certain birthdays, graduations, wedding day, etc. If I could have had a gift from my mother, it would be to have some sense of her presence at those times in my life. Perhaps you might consider it.

I wish you blessings and peace as you travel this journey. Thank you for sharing with us.