Looking in the Mirror

Roger Ebert's post on his Esquire article reminded me of another change in my life since surgery.  I rarely if ever look myself in the mirror.  I never use the mirror to look inside the mouth to see what is left.  

On my blog and other sites, I am still using a pre-surgery photograph, even though my face has not changed that much.   I prefer to think of myself as what I was and not what I am now.

Living without Dining

Roger Ebert laid out the problem that I face in his blog post, Nil By Mouth.   The problem is not the lack of food, it is the lack of dining.    There is nothing more ingrained in our ability to socialize than eating and drinking.   Remove this ability from a person, and it can be come incredibly isolating.

While it is possible to join others at meals, often those that can swallow do not think to include you.
When they do, many feel squeamish to see you pour your formula down your tube and will use that as an excuse to exclude you.

Being Jewish, food is a central part of religious life.  One can start with the laws of Kashrut, that forces one to look at one's relationship with God as part of an activity that a person cannot avoid and survive.   In many ways, Kashrut, becomes part of the language that Jews use to create a sense of community.  As a language, the food itself is less important than the relationships that laws of Kashrut create with other members of the Jewish Community, relationships with those outside of the community, and relationship with God.

Food becomes a central part of every holiday, and more importantly, every holiday creates regular event for celebrations both small and large.   If you think about Shabbat meals, they force families to come together and talk for two or three meals together.   While they may eat together other times of the week, these are meals without time constraints.   No one need rush off to work, chores, or school homework.   Holiday meals do the same, plus it forces us to deal with other ideas in a setting that is as relaxed as one can imagine.   It is hard to connect tension with a Sedar, a meal in a Succah, a Purim party, or a meal after lighting the Hanukah Candles

By setting limits on what one can eat and not eat, and limits on how permitted foods can be prepared and consumed together, Kashrut puts eating within context.   Kashrut puts limits on our desires to enjoy the full range of what can be prepared in the kitchen.   The existence of limits tells us how little sense it makes to obsess on our culinary desires, which should help us understandand how to deal with controlling other desires as well.

When you lose your ability to eat, you lose all of this.   Going from rules that connect you to others, to a diet that drives connections away becomes debilitating.    My challenge now is trying to find a way to connect in a food-centered world.  I have not yet found a way.   I hope I can soon.

The Black Knight

The challenge of treating head and neck cancer is trying to minimize the impact on the functionality of the organs affected.    Traditional surgical methods, especially for advanced tumors result in major disruptions of normal speech, swallowing and other functions of the organs affected.  While it is possible to compensate with the changes, all survivors have found that their life changed after treatment.  For me the changes grew over time as every treatment resulted in further reductions in my ability to eat and talk.  Specifically my losses were s follows:

• 1997 - lost most of the functionality of my saliva and thyroid glans from radiation treatment.  I s subsequently required synthetic thyroid pills and pilocarpine to increase the output of the remaining salivary glans.   Talking was difficult for a while do to dry mouth, and nearly impossible with out the pilocarpine.   I also found eating anything citrus, mint, or with hot peppers too painful to contemplate.   I switched to children's toothpaste as adult toothpastes were too spicy.
  
  
• 1990 - after a hemiglosectomy, I had to relearn how to talk and swallow from scratch.   The surgery left me with a speech impediment that lessened over time and an inability to eat foods that required the tongue to move the item from one part of the mouth to the other. Also, I sometime found myself choking on food and chunks of hot dog, broccoli, or other items had to be massaged and coughed up as it blocked the esophagus. (Fortunately, I never found my windpipe blocked.)
  
  Over time, the muscle mass improved with use and tongue strength allowed me to lick an ice cream cone which was impossible right after surgery. The issue of choking on food remained. Finally at public dinners, I had to choose between talking with others and eating as eating was done much more slowly and deliberately to ensure that I did not choke.   Also the speech impediment made understanding me in noisy situations more difficult.
  
  

• 2007 -  After my last surgery, my tongue atrophied as it lost blood flow.   I both lost my ability to move food around my mouth and the ability of my tongue muscle to compensate for what may have been a week swallowing function.  The swallowing function is so week that I can no longer swallow my own saliva and instead it either dries up in my mouth or thickens on top of my larynx making talking and breathing sometimes difficult.    I left the hospital with a feeding tube and an even greater speaking impediment.   They have both remained for the past two years. 

The changes to my body made me think of the black night and his continuing williness to fight even as all of his limbs were chopped off.  I know it is rediculous but I have always felt that I have had no choice but to continue the fight as more and more of the functionality of my head and neck organs are eliminated.

So for your and my enjoyment here is an excerpt from Monty Python and the Holy Grail for inspiration.