Wednesday, April 18, 2007


Yesterday P. and I brought dinner to our friend J. and his wife D.. J. has an aggressive form of ALS, which gives me an opportunity to see what I might be like when my disease reaches the stage J.'s ALS has. I always am upset for a day or two after visiting J. because I am reminded of what might be in store for me.

Anyway, I was shocked yesterday to see how much weight J. has lost in the last month. I understand that his doctors have advised him that the time for inserting a feeding tube is fast coming to an end. I am not certain why J. doesn't want to have the feeding tube. It is my understanding that having the feeding tube would allow the doctors more options for pain management. Also J. would receive more calories increasing his chances to be at his sons wedding. Also having a feeding tube might allow J. time to see his first grandchild.

However, I do believe I understand some of what he is dealing with. I think I will call him and tell him my struggles about having a tracheostomy. I was afraid of all the extra work having the tracheostomy would cause for P.. I was afraid I wouldn't be able to talk anymore. I was afraid of getting infections. I was afraid of not being able to stay home alone, causing us to go through all of our savings leaving P. with no money after I die.

So I held firm against my doctors advice that time was fast running out for me to have the tracheostomy. However one day, while sitting in the Pulmonologist's office, I realized that I was being selfish and if having the tracheostomy prolonged my life, maybe God wasn't ready for me yet. Maybe my God given responsibilities as a husband and father weren't over yet. So sitting there in the Pulmonologist office I decided to have the tracheostomy.

In the last 2 years after having the tracheostomy, I feel I have helped my two youngest with the difficult business of moving out of the house, starting either a job or going to college, and looking forward to starting a career, a home, and at some later time a family. I also feel I have been given the opportunity to talk to my children about my illness, faith, and love for them. I have been allowed by God to enjoy my Grandson. Most importantly I have had 2 more years to spend with the love of my life, my wife.

Visiting J. yesterday made me realize that if I hadn't had the tracheostomy done, I would not have been here today. I really do believe I would have died from complications of my being able to breathe. How do I tell J. this? I can't talk long enough to tell him every thought I've had about this. I can't talk long enough to read this to him. Maybe I should read this to him even if I do run out of breath? Maybe I should send D. his wife the link to this site and let her read this to J.? However, I think that would be taking the easy way out.

It is a scary thing to be trapped by our own bodies. Most of us don't have to face decisions like those J. and I have to face every day.


Blogger Me said...

I think there is tremendous inter-relatedness between this post and your post on hawks - the fundamentals of what it means to be free and what it means to be in bondage...

Wednesday, April 18, 2007 at 2:00:00 PM PDT  
Blogger smilnsigh said...

-sigh- I said I was turning off my typing whirl-wind in your blog but... I can't, till I comment something here.

You are a very, very brave man. I am blessed to have made your Net acquaintance. You have helped me, already. I wasn't going to say that. {wow but I am saying a lot, that I wasn't going to say, this week, hu?} Makes no difference how. You did. And I'm grateful.

As to what you tell your friend, and how.... My only thought is, do what your gut feeling says, is best. And also, what is doable.


Thursday, April 19, 2007 at 9:57:00 AM PDT  

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