Early in our relationship, though we were traditional nine-to-fivers, we were driven to create something together. At 36 and 43-years old, respectively, we were beyond creating babies. Besides, we came into our relationship with a perfect daughter each. Mine was 13 and his, twenty-three. Both blonde, bright, and beautiful and his came with a bonus, a baby!
I came into the relationship with a condo that needed no work. He had a work-in-progress in the woods, actually two. We would spend our lives together redesigning and improving these "cabins in the woods". But, before that we took an afternoon cutting down young alders to use to make a trellis. Working together, we .wove supple, young branches into a nine-foot tall trellis with two hearts stacked one atop the other. We were in the gooey, sickeningly sweet, first months of love, forging a new life together.
Here we are seventeen years later, separated by circumstance, through no fault of our own. I live in a hospice facility on a steady decline thanks to ALS. Our cabins, our creations, have been sold to satisfy our government to get me on medicaid so we could qualify for a facility that can actually care for an ALS patient. My husband sleeps on the floor of our home, alone, without me. His life is a treadmill: home-ish, work, hospice, home-ish again. Repeat. (I say home-ish because that home that we made together, will ultimately, be sold-off to satisfy ALS debt.) Where shall he live when I'm gone?
Cut to earlier today. We're on a balcony of my facility, listening to live music from a street fair. It's Bastille Day! We decide to participate in the festivities from our perch. I "dance" by waggling my power wheelchair back and forth on the deck. We smile, we laugh, he claps, and then we share a moment. In my best effort, despite my dysphasia-affected speech, I ask him if he remembers our heart trellis. His tears tell me he does.
My tears, our tears, speak to our continued devastation and loss.
ALS is a dreamkiller.
I came into the relationship with a condo that needed no work. He had a work-in-progress in the woods, actually two. We would spend our lives together redesigning and improving these "cabins in the woods". But, before that we took an afternoon cutting down young alders to use to make a trellis. Working together, we .wove supple, young branches into a nine-foot tall trellis with two hearts stacked one atop the other. We were in the gooey, sickeningly sweet, first months of love, forging a new life together.
Here we are seventeen years later, separated by circumstance, through no fault of our own. I live in a hospice facility on a steady decline thanks to ALS. Our cabins, our creations, have been sold to satisfy our government to get me on medicaid so we could qualify for a facility that can actually care for an ALS patient. My husband sleeps on the floor of our home, alone, without me. His life is a treadmill: home-ish, work, hospice, home-ish again. Repeat. (I say home-ish because that home that we made together, will ultimately, be sold-off to satisfy ALS debt.) Where shall he live when I'm gone?
Cut to earlier today. We're on a balcony of my facility, listening to live music from a street fair. It's Bastille Day! We decide to participate in the festivities from our perch. I "dance" by waggling my power wheelchair back and forth on the deck. We smile, we laugh, he claps, and then we share a moment. In my best effort, despite my dysphasia-affected speech, I ask him if he remembers our heart trellis. His tears tell me he does.
My tears, our tears, speak to our continued devastation and loss.
ALS is a dreamkiller.
Tina, Thank you for sharing your life and disease with me. You are such an inspiration. I truly hope this blog ends up in a book!
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Thank you for your continued kindness and support! I wish I knew how to transform it as such.
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