I installed my husband, Todd, on his computer with his HeadMouse and sip-and-puff clicker. ALS compromised his breathing, so I put on his non-invasive respirator. I call my mother, who lives next door. She will keep her cell phone in her pocket. If Todd needs anything, he can call her and she can be there in minutes. With this knowledge, I breathe easier when going for my daily nature therapy.
I drive to the ski slope and put on my skis. It’s 10 degrees outside and the wind stings my face, but I keep going until my body temperature rises and the cold doesn’t hurt anymore. I stop and listen to a symphony of rustling brown leaves that have clung for months of winter.
Old trees creak under the weight of snow and light wind, and chunks of snow fall from their branches and land softly on the ground in the woods. The sun, low in a bright blue February sky, shines through the branches and the light dances with the shadows on the path ahead of me. My senses are heightened as I take note of the natural beauty around me.
At home, it’s painful to notice the details. How Todd’s head sags to the side when I put him in his wheelchair. How his voice has weakened to the point that I can’t hear him anymore when I have water running at the kitchen sink. How the muscles in his legs contract constantly.
During our care routine, I think of other things – politics, TV show storylines, our children, scenes from my time in the woods. Being in the moment is overrated when I’m boring Todd’s nose with a cotton swab.
I want to be fully present for our expressions of affection, our shared laughter, and the co-parenting we do. But for the mundane and the horrible, I need to detach myself and be more clinical, otherwise my emotions overwhelm me. The losses from ALS are so intense that I cannot understand what Todd is going through, or even what I am going through. He lost so many abilities, and I tried to fill the void. I help him with his daily needs and clear secretions so he can continue to breathe. It’s a lot of pressure, and we’ve both been through trauma.
But now I’m on the ski slope, and the fresh air fills my lungs. Beauty surrounds me, soothing my soul.
To note: ALS News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about ALS issues.