Please don't cry...

I've been struggling more than usual lately, but the love I receive daily from my wife, son, father, caregivers and friends, keeps me anchored firmly in this present world.

I don't want to dump, but here's a quick update:

My ability to chew food and swallow has gotten weaker. I no longer have the diaphragm muscles that are needed to create a good cough. I often have choking spells. I'm not getting the nutrition that I know my body needs. This means that I have even less energy than usual. With less energy, I find that I am more sensitive to negative occurrences around me and more susceptible to being grumpy, antisocial and depressed. I have less energy to write, less energy to deal with my sometimes quirky computer software, less energy to be positive. I begin to avoid anything that requires effort. I don't get into my wheelchair as often—the pit just gets deeper. My darkness begins to negatively affect the people around me. A terrible downward cycle is created...one that could spiral out of control—less synergy, less joy, less...

The other day during a long choking spell, I noticed tears were streaming down my wife's face—a beautiful face that I know so well after 29 years of marriage. A reassuring face that I've become more reliant upon since my diagnosis of ALS. She has every right to cry, not just for me, but for the life that has been stolen from her as well. Long-term illnesses are shared, there's more than just one patient, one victim. There's more than one person suffering. Her tears burned into the deepest part of my heart. I wanted her to stop. It hurt too much already. I wanted to say, "Please don't cry..." I knew that would be a truly selfish request, so, instead I just said, "I love you."

"I'm glad you do. If you didn't this would be a tragedy," was her reply.

She is right. It's not a tragedy. It is difficult. We have challenges—physical, mental, emotional and financial, but we have each other and we are surviving. We still laugh. We still enjoy each other's company. We still live vicariously through our 23-year-old son, and we love him dearly. We still try hard to find some joy each day. We still look for solutions, for some way to make our lives better.

One solution we've decided upon is to have a stomach feeding tube installed the end of this month. My wonderful doctors and nurses at Kaiser Permanente are helping to make this happen. I'm nervous about the surgery—I am concerned that it may impact my ability to speak, but I feel confident that this is the right thing to do. If I can get regular nutrition directly through my stomach, I will be able to preserve my energy for other things other than trying to eat, and I will get the daily nutrition that my body requires. I hope this will give me the energy to break this dark cycle.

So, send me your positive thoughts and prayers. Love each other!