Let's begin our "day" at 9pm on Saturday when Laura puts me in bed. I look forward to getting into bed because Laura will sit down and watch a movie with me. I imagine this is what many married couples are doing on a Saturday night together so it helps me feel “normal” for a bit. As we laugh together at the movie, even if it is a bad movie, I forget about what is going on in my life.
I think about what I would be doing with my life right now if I were healthy. I get sad thinking about my children and the experiences they have missed and some they have had simply because I have ALS. I want to experience holding my children again.
I need the morphine and Lorazepam to quell these thoughts and because I have a lot of pain in my legs and bottom from not moving much. I don’t look forward to putting on the AVAPS mask. I feel like it restrains me, but I know it is important for my breathing so I wear it.
I need a lot of adjustments to get comfortable. You probably go through many adjustments yourself as you are trying to get to sleep. I have to ask someone to make every adjustment for me from covering or uncovering me to moving and scratching me. I usually go through a couple of cycles of needing my blanket, my pillow, and my AVAPs mask adjusted.
My skin crawls at night which makes me feel itchy and, of course, I cannot scratch. I have to prioritize my needs so I do not annoy the person caring for me with endless demands. I have found that if I focus on positive things about my life, it helps distract me from my needs. Laura says it is similar to using Lamaze breathing during childbirth – it takes your mind off the pain but it is still there. The only difference is I am “giving birth” every night.
The problem is I had to use a lot of energy to get her attention. I don’t have enough left to tell her what I need. She patiently looks at me waiting for me to talk. Remember, I have a mask on and the AVAPs machine forces air into my mouth every time I open it. It is trying to equalize the pressure in my mask so talking becomes very difficult.
In the beginning, I was frustrated with this exercise. Now I gather my energy and yell out what I need. If I am still not understood, Laura will disconnect the air hose so I can speak without fighting against the air pressure. This is another reason why I hate the AVAPs!
After the adjustments, I lay awake for about half an hour. I know this, because I stare at the large digital clock that Russell configured for me angled just so I can see it. It gives me peace of mind to know what time it is. I am not sure why because time just passes, but I like knowing what time it is.
If I lay here too long, my mind fills with thoughts. I think about dying and worse, I think about living for years like this. It is in these wee hours when my faith is challenged. The only thing I can do to quiet my mind is to meditate on scripture. I am reassured by God’s promises as I try to rest in His peace and comfort.
I am deprived of a basic enjoyment of life - eating. By that, I mean, tasting and savoring food. What I am about to say will make you go out and buy chicken.
I miss getting a bucket of KFC; I love the smell of that greasy chicken and how warm the bucket feels in my hands. I would carefully select the perfect piece, the one with extra breading. I would pick it up with my hands and bring it to my own mouth and with a “crunch” I would taste all the juicy, warm goodness of that chicken.
Thankfully, I am never hungry or thirsty so generally I am unaware of this deprivation until the food commercials come on TV and remind me of what I am missing. When I am given a formula, I feel like I am being violated. I know I need the calories but what is the point of all this?
Unfortunately, my sponge bath is interrupted by all the mucus in my throat. I start panicking because I cannot breathe. Laura has to use the suction machine to vacuum the mucus out of my throat. It feels awful because I am gagging and she has a tube in my mouth. My body is in distress so I need to distract myself with happy thoughts. I know this breathlessness is temporary but it is scary!
Laura finishes the sponge bath and I need to use the toilet. This is something that in our life before ALS was a very private time. It was a time for me to catch up on my emails and voicemails. I know you didn’t want to hear that but I am just keeping it real!
Now, I feel humiliated that my wife has to deal with putting me on the toilet and checking on me to make sure I am alright – there is a danger I could fall off. By the way, I am not alright from an emotional standpoint but I don’t say that to Laura. I watch her struggle to move me around and I am thankful I am not a big person.
I can imagine this must be similar to what water-boarding feels like. I am not able to breathe when the machine forces air into my lungs and then sucks it out. It is so violent that my eyes tear up. After a few cycles, I am exhausted. I don’t want to do this anymore.
At 11:30, we have completed that draining regimen. It is time for more force-feeding. I know I should be happy about getting all this care but it is really making me feel sad. I should be taking care of my family and not the other way around.
I realize that I have to be nourished otherwise I would be too weak to get out of bed. Laura reminds me that I am not doing this for myself; my actions are setting an example for my children of not giving up just because life is hard or not what you expected.
The afternoon moves along at a more leisurely pace. I am thankful I have a computer that can understand my commands. Using my eyes, I can move the cursor on the screen then, using my legs, I can push my hands resting on my lap together to press a button that acts like a mouse click. I enjoy playing chess with people all around the world. While I am playing, I have another opportunity to escape.
Riding in the van is uncomfortable. Try as she may, Laura cannot avoid all the potholes or speed bumps. Every time she hits the slightest bump, since I have no muscular control, it jostles me. Imagine a bag filled with water bouncing and flowing with the vehicle’s every move; that is me. I would like to avoid going out but I do it because my family needs to have as normal of a life as possible.
We enjoy the church service. The people at church are an enigma. Every Sunday, I am met with much love and concern; however, these sentiments must be reserved for Sundays only because I typically don’t hear from anyone between church services. I think, in general, people feel uncomfortable around me.
There are those who seem concerned but never visit and then there are people who come over and talk to my family about me while I am sitting right there! I have found myself saying, “I am right here! I can hear you!” I don’t think they are bad people, they just don’t know how to handle my situation. Maybe that is an advice column for another blog post!
My day is over. I am very fortunate that I have my family. I see them laughing in the kitchen. Jordan is acting silly, trying to lick Laura’s face. Laura, acting totally out of character, surprises Jordan, and licks her first! We all laugh. Even the dog gets involved by barking. It is pandemonium and I love it! It is my life and I am thankful to have another day in it!