Dysphagia--Conclusion

I promise that I won't camp out on this theme, but I've got more to say on the "unswallowed life."

Last week I gave us the Top Ten Surprises of Dysphagia (difficulty with swallowing). A "thank you" goes to those who found the humor in it. Twisted brains like mine find encouragement knowing that others can laugh at the same things. Today, no crassness warning is needed as I'll keep it sanitary!

In what you are about to read, I am going to move from the physical aspects of dysphagia and share from the emotional and spiritual dimension. I think it is important for me and for you that I do so. So, here goes:

One great surprise of not eating for 16 months is the serious side effect of isolation. I've rarely been to a restaurant in this time period, and if so, only with a group. Who wants to be the lone person eating while the guy sitting across from you tries not to stare and drool?

More significantly, I feel the isolation in daily life. Perhaps I now have a very small sense of what it means to be a minority. Everyone around me is enjoying the normal aspects of eating and drinking numerous times a day. I DON'T want them to stop doing so around me or hide it in some way. I am accustomed to being around food I can't partake in. But, I can't quite shake the "left out, you're different, you didn't get picked for the team" feeling. I've usually felt pretty included in life, and no one has done anything intentionally to aggravate my sense of isolation. However, my condition causes me to feel different--at least for the duration of this trial--and some days it gets to me. It is very strange to be with a group of people and know that every last one of them are going to do something in the next couple hours you cannot do. At my low points it has produced a nagging loneliness.

Another surprise: I already knew it to be true, but in a glaring way I have come to see how massive food is in our culture (and perhaps all cultures). Food and hospitality, food and friendship, food and conversation, food and meetings, food and celebration, beverage and social interaction, beverage and exercise…all go together. What are holidays without special food? What's a date with your spouse without food involved in some way? What are lunch meetings if no one eats? What are sporting events and birthdays and parties and countless other events without the cakes or cokes? A dozen times well meaning people who know my condition have said, "Can I get you something to drink?" This is what we do in our society and it's all good and fine. But it leaves one feeling like he's lined up on the fence, the teams have been chosen and his name was never called. The game will go on fine. He just won't be playing.

This is all bad enough on an interpersonal level, but then there is a spiritual dimension which brought another surprise. I didn't anticipate the isolation of not being able to partake of the communion elements. I know that those who have wheat allergies or other syndromes have their challenges with communion as well. I've tried chewing the bread and then spitting it out, but there's something that feels so wrong about this. I've taken the bread and just held it while I prayed--a petrified piece still sits in my drawer. In a time of private communion with Joanna, I've poured juice down my feeding tube--this is the closest I've come to feeling like I've participated. I know my intimacy with God is not based on this ceremony. Yet, again, it leaves me feeling like I'm standing along the fence watching.

Do I sound melodramatic? I hope not. I don't want to be ungrateful. I would have died of starvation a year ago without the feeding tube. It's a medical marvel. But, I also can't escape the reality that those of us in this condition are pioneers in a new world. Medical technology has solved a major problem, but has created others in the process.

And, gratefully, once a day I chew some soft food. I have to spit it out, but it has greatly helped my sanity level, brought some pleasure and helped strengthen my jaw muscles. For example, before writing this I enjoyed a slice of buttered bread, some pot stickers and a half a donut. Not a drop went down my esophagus to my stomach, but my taste buds were happy.

I know that this could come across as a real "downer" today. So, why did I share it? Let me give a number of reasons:
*I want others who have dysphagia to know that someone can relate to them.

*I've promised an honest look into my mysterious journey and I've decided again to not hold anything back from you.

*It's good therapy for my soul to express these thoughts.

*I think it is good for others to see that it's okay to laugh and grieve over the same issue. Those who can only make light of a painful situation are as unhealthy as those who can only cry. Some of us need permission to experience the full range of emotion.

*Finally, I share it because while you may not suffer from what I do, you may well suffer from something that causes you to feel "different" or isolated as well. Health issues, employment or marital situations, living far from loved ones, a personality that has a hard time making friends, prejudice…the list is long. It's not a fun place to be, but I assure you that the goodness of the Lord can be found even there.

Look closely, you might find that He is standing with you along the fence.

Your Fellow Traveler,
John

PS With Holy Week coming up, I'll try to post an extra blog or two--look for one Saturday to prepare your heart for Palm Sunday. And, speaking of this weekend, I get to preach again at the five services for Salem Alliance. Thanks for your prayers. I'm feeling a unique passion and urgency for this message.