I am Confused

     ALS is quite fond of throwing a wrench in plans. You think you have a good plan in place and ALS decides to plop a big ol’ stinker in your path. The worst part is , there is no getting around it. You gotta’ roll up your pants and step right in. 

     That is where I am right now and it is confusing. Since the beginning of my journey, I have made it a point to plan ahead. To always try to keep ahead of the game. Financial planning, legal planning, medical planning…you name it. I think I have done a decent job. 

     One situation has always been a standout. From the very beginning, the decision for invasive ventilation is thrust in your face. “You need to think about whether or not you would want a tracheostomy when the time comes. ” All ALS patients are presented with this choice. I can’t tell you how many times I have been asked this. It is an important decision indeed. Many choose not to go down this path. Understandably so. I have known that I would want this procedure as long as the circumstances are correct for me. 

     At least I WAS confident in my decision. I still am, mostly. But it seems that the tone from the care providers has changed as I am knocking at the door. This is the source of my confusion. They have always emphasized the need to be prepared to make the choice. So,I weighed my options. Discussed this decision with my family. Been very clear about the particular circumstances regarding extended life care. Now that I am ready to start the process of moving forward , everyone seems to be on the fence. I understand the need to be real about expectations. But I have had five years to consider this. Now they are all treating me like I am being rash. I understand the benefits and I understand the disadvantages. 

     I guess it just confuses me that all of a sudden they are making me question my decision. Sure they want to make sure that I am certain. I am ,but the sudden change in tone has me scratching my head for sure.