My husband recently had to have a feeding tube placed because of his continued decline with ALS. He is still able to eat, but it is difficult for him, so we viewed this as a simple procedure to help supplement his nutrition intake and give him more energy. What we didn’t expect is that this would set back his functionality in other ways. With ALS everything take so much energy, so now that his body is healing from the procedure he is having more difficulty walking and using his hands than he had before. This development surprised us and has left us reeling these past two weeks.
What this has meant for him is more frustration and struggle to the point where he is feeling depressed. What this has meant for me is that suddenly I am doing more care-giving for him than I had expected. My life is a balancing act, so when more weight is put on one part, it throws the whole thing off balance and I stumble.
In fact the whole experience just feels surreal sometimes, trying to balance these areas of my life. I spent Friday morning talking to a Hospice social worker and feeding my husband pills, and then I got ready and went to lunch with co-workers where I proceeded to make small talk about what everyone was doing for the weekend. I’m trying so hard to compartmentalize my life in order to survive, it’s the only way I can function or I would just collapse, but lately ALS is starting to seep into everything. It’s like this shadow looming over us that continues to grow and I’m afraid that soon we will be in the dark.
I won’t let it win. I won’t let it rob our son of the joys of childhood. I won’t let it take away the precious moment of my husband playing tag with our son in his wheelchair. I want to find moments of laughter together, enjoy my creative expressions, and be a normal person at work. ALS steals so much, but as much as I can, I won’t let it take away everything from us. We just have to notice the moments of joy, find the times to laugh, to hug each other, and to be present. That is how the shadow stays away, by looking for the light.