I am thankful that on most occasions I am able to glean the positive out of a given day’s challenges. But on days like this it’s really tough. I wake-up and I see a beautiful day outside, the sun shining brightly. I wake-up approximately every two hours for suctioning, and earlier I remember Laila showing me her pretty, spring dress, at her mother’s behest. But now I realize that I have no idea where anyone in my family is! Obviously they are enjoying this beautiful Saturday. And a quick glance at the nursing schedule gives me the clue that apparently, I will have extended nursing hours. From 11am until 9am, I will have a nurse. Past experience suggests that this means the kids will be gone all day and my wife will be gone most of the night. Often it’s discussed ahead of time but not always. My first clue is often the already worked out, modified schedule that comes via e-mail on Friday afternoon. It’s actually a common occurrence, that I am basically left alone with a nurse while everyone else enjoys a weekend of fun and adventure. Countless photos of my children in places that I had no idea that they were going appear on my facebook timeline. And while I am glad that their experiences aren’t very limited by my condition, when you combine this with my wife’s nightlife it’s difficult not to feel piled upon. I feel guilty for this, but it’s really hard to not feel like a pet fish when everyone is living life “around” you! I can only comfort myself with pictures of the rare moments of family togetherness for so long. Nineteen to twenty hours of my day are spent alone.
Is it wrong to wonder what it would be like to feel loved on a daily basis? I am not suggesting that they don’t love me, but love, being an action word, should be felt. I go weeks without anyone sitting within an arm’s-length of me. I have visitors about two or three times a month, and they stand at my side, with a hand on my arm and talk to me. And for someone that’s a sensory-deprived, paralyzed, socially isolated person that’s huge! The love conveyed through touch can not be overestimated. I am so alone! I want to feel wanted! I want to feel prioritized! I don’t want to feel like the only time I am important is on my birthday or during medical crises! I am tired of having to post images of past acts of love and seeing all the “likes” and comments knowing that my day-to-day experience isn’t even close to that! And I can’t even get out of the house if I wanted, despite the fact that I have come up with a solution to being bedridden almost a month ago. Since it’s not much of a priority for the people in position to act on my rather simple plan to liberate me from this room, I have to wait patiently for it to be done. It could have been done in a week or less, but only if it’s deemed as important.
Instead, I lay here with the only options available is whether to watch television, read or write. And despite communicating my need for physical contact, for knowing where my family is, for simply not spending my life with nurses while everyone else is enjoying life; this seems to be what I have to look forward to. I mean, what are my choices? There are certainly worse situations that I could be in, many people with ALS have no one. It’s just that I had hoped for more as I looked at the future progression of my diagnosis.
God has been my every day companion, He’s seen my tears and heard my cries. I don’t know what my future holds, as is the case with us all. I don’t know if I would choose a better situation even if it presents itself. It may be God’s will that I suffer in this manner.
I know that this is a selfish post but I seem to be the only person who places my day-to-day well-being as a priority.