To start, you read that right. Two, I am not e e cummings. Third, I’m still Catholic.
So, if you have paid close attention to HOW I wrote what I did, now I’ll dive in. In my earlier work, Theophilus, I spoke about a feeding hose being installed. This is my first steps in becoming a cyborg. Well, what I haven’t shared yet is…
It’s bloody WEIRD! It’s right in the middle of my belly, it gets in the way, it dangles down like an elephant trunk with no muscles, it’s just WEIRD! And the thought of putting food in there -oh, it’s vanilla flavored, don’t worry- is just weird. Or as Kate says, “creepy.”
But, on January 2nd of this year, I baptized the feeding hose. It is still weird.
Enter the ALS elephant in the room. Chewing and swallowing are difficult, but doable. What is more difficult now, in case you are wondering, is lifting up my arms. So the food can be the perfect consistency and flavor and I would have trouble getting it into my mouth. Especially from a table, with no armrests etc. So for a couple months or more now, I have not been at the dinner table and family dinner has gone away. ALS is isolating, it’s insidious. If I had to describe how the devil works, I would compare it to ALS. Small steps that quickly take you down a path of destruction. I wouldn’t wish it on Hitler.
But, Reader-land, this is a post of HOPE, in this Christmas season, and it is why I am using such spiritual language! You see, “Both Barrels” Fr. Noah Morey gave a great homily this past weekend, the feast of the Holy Family. And, unlike the body with ALS, the spirit can always be redeemed if we seek it! So with his insights in my ears, I asked Mel to give me a tube feeding so that I could be at the table with the family and not have to worry about eating. I could talk to my family and answer and be present.
It’s like a rebirth. I missed them so much, their smiles, laughs, frustrations, and shenanigans! I missed their company so much! So I am so happy I am able to do this now, even if tube feeding is weird. And I am grateful for my Faith that encourages me to stand up, do things new, even if in the past I did them differently it doesn’t make me a hypocrite, it offers me the chance to accept help to try to change for the better. And yeah, family rosaries!
Let me just say that trying to corral a three year old who is literally not wearing pants and telling you “I am da Flash” is a memory I’ll never regret having!
So, hopefully more family dinners now. And more memories! And hey, I get to just drink beer and coffee all the time now! (I have to try beer in the tube…)