"Am I Ready for My Wife to Feed Me?" OR, "Are You Ready to Watch My Wife Feed Me?"

"Am I Ready for My Wife to Feed Me?"
OR, "Are You Ready to Watch My Wife Feed Me?"

Where to begin? What words do I use to even begin to talk about this sensitive/private/public subject? "Damn!" It crossed my mind several times these past few weeks as this thought/consideration rumbled in my head/gut/heart with a few other physical and emotional things that fought for attention. But then, I wondered how some with a certain image of me would react. Sorry, it still came out "damn!"

There were a couple of other things that happened these last few weeks that blocked my writing this post besides my concern for a possible change in eating styles. I downloaded two John Grisham books: A Time to Kill and Sycamore Row and read them both in the last two weeks. I've never been much of a reader unless the book had to do with sports or religion/church/devotions. I guess I've found a new addiction!

Then there were the deaths of two female PALS (Persons with ALS). The first one was a friend we met in our ALS support group about a year ago. Besides a few emails between her husband and me over the past year, our most recent encounters were at the Columbus Walk to Defeat ALS and our last support group meeting the first Monday evening in October.

I have this wonderful picture of the two of us in our power wheelchairs encountering each other at the walk - embracing, crying, trying to talk, meeting more of each other's families. To be honest it was one of the highlights of the day even though fairly brief.
The husband said they planned on attending the next support group meeting, which they did. It was so good to see them. And then, less than two weeks later and we received the word that she had passed away. We went to the funeral home for her visitation. Our encounter with the family, especially her husband, was about all we could take. Yes, her suffering is over, but there's still plenty of pain watching one another deteriorate and ultimately pass. The whole ALS community and our families fight together and grieve together!

The second one was a younger sister of two of my OG (Ottawa-Glandorf) high school basketball and football teammates - one of them a classmate. We learned of her being a fellow PALS a couple of years ago - receiving her diagnosis just three months after we received mine. We've been wanting to make contact with them. Because of some mutual friends and some relatives exchanging emails, we were finally able to make contact a little over a month ago.

Our son's family lives in the same community as them and our granddaughter had a soccer game on a Saturday morning three weeks ago. We made arrangements to stop and see them after the soccer game. We had a wonderful conversation and promised to be in touch again soon. I was impressed with her warmth and beauty, amazed again at how differently ALS does its damage to each of us, moved by her smile in spite of her physical condition.

Let me share with you an example of how weird our differences are by commenting on the contrast between what she was dealing with and what I deal with. Most of you know I've used a bi-pap machine at night since my diagnosis in October, 2010 and that I'm now using it an additional 6 - 10 hours / day. She, on the other hand, just started using a bi-pap a month ago and only used it about an hour a day. However, she couldn't move her arms or legs at all. While I'm hands are shaky and tire easily, especially after I've typed for a period of time, and I can't walk, I still am able to move arms and legs on my own for the most part.

We received the word two weeks after we visited her that she had passed away. We were in shock - angry - disappointed - depressed. How could it have happened so soon after our visit - our getting acquainted? Sure, we knew she wasn't good but there's no way we would ever have guessed she was that near death. Her husband called us later in the afternoon to thank us for our visit and to share more details of the final hours. It helped some, but we still shake our head in disbelief. We went to the funeral and saw their families and our friends. It was again hard but necessary.

So, those are some of the reasons I've had trouble motivating myself to share my thoughts concerning the approaching possibility that Dorothy's going to have to help me more when I eat. While I haven't been able to use a knife to cut my food for several months (maybe even over a year), it's becoming more difficult to transport food on a fork or spoon from my plate to my mouth, harder to type for longer than 15 minutes at a time, impossible to lift my right leg without the assistance of my hands and arms, more taxing to talk (still I try some), more comfortable on the bi-pap machine than off, becoming more uncomfortable while eating, etc.

Still, we eat out. I order more finger foods or pay less attention to my manners. So, the questions I'm pondering include:
When it's time for Dorothy to help me eat, will I still be interested in being around others when we eat?
Will I be able to handle the embarrassment of her feeding me in front of others?
Will others be uncomfortable if she helps me eat - feeds me?
When we get to this point, should we stop going to restaurants?
How will I know when I'm at that point?

Sorry for the downer of a post. I'd much rather reflect on things like the wonderful weekend of ALS events of a month ago, but people tell me they want me to be candid about all of the journey and this is what is currently on my mind. And now, my right hand is tired and begs for me to quit for tonight.

Blessings on you all as you ponder the events that contribute to making your life interesting and challenging as well.