Go Forward

It's pretty well known by all that when a person doesn't use his muscles, they atrophy. What's not normally considered is that the muscles in the fingers and toes of a quadriplegic can atrophy as well making the nails not sit quite the same. Even though B doesn't walk, his poor toenails take a beating. The skin around them is a bit slack and very soft and it's quite easy for him to end up with an ingrown toenail. I try to be very careful with his toes and try to keep the nails healthy but it's a struggle.

This afternoon as I was bathing B I held his left leg up to dry it. While whisking the towel around I felt it hang firm and then loosen up and knew I'd caught the towel on one of his toenails. Upon further examination I saw that I'd torn B's toenail away from his toe and peering closer I saw that it was attached to his toe only at the very bottom.

Cue freaking out.

I didn't know what to do at that point. Do I just clean it and bandage it leaving the nail in its present state and let the dermatologist see it next week when he comes by or do I think of it like a loose baby tooth and just pull it off? I thought pulling it all the way off would be the way the doctor would handle it were he there but he wasn't there. I was there and I didn't relish the idea of yanking off a toenail, even one barely attached.

At this point I was feeling nauseated and my gag reflex was working overtime. B, of course, can't feel the pain exactly but he can feel that there is something going on and he knows it must be pain because he began to sweat and his foot was jumping and jerking like a flounder thrown up on a dock.

I didn't feel brave tackling this. I felt woozy and a bit put out that I'm always the one stuck doing the gross shit. I grabbed a sterile gauze pad, set my jaw and began to gently pull the toenail free. I could hear the TV on in the background and as I pulled the sound seemed to get tinnier and fainter. My focus narrowed to just the toe in question and I pulled a bit more and a bit more. By the time I had freed the toenail the room was growing dark with bits of light like fireflies flitting before my eyes and I had to suddenly sit on the floor because I was on the verge of fainting. I just don't handle things like this too well. I get grossed out pulling the skin off of chicken because it seems unnatural to do it, nevermind how unnatural it feels to pull a toenail away from a toe.

A few minutes later I had my wits back and my blood pressure back up and I set to disinfecting the raw area (much less blood than I thought there'd be!) and putting a sterile bandage on it. I'll change it daily and if it gets funky I'll call the doctor.

It was just a few minutes after getting through this drama that I heard that Dana Reeve had passed away and I thought "You know, if there's anyone who can relate to what I've just had to do, it would be her.".

Dana Reeve's death is tragic and sad. The idea of her teenage son having lost both his father and mother in less than two years is heartbreaking. And of course the foundation she and Christopher Reeve worked so tirelessly for will feel the loss of her efforts and her voice. But it's on a more personal level that I mourn her death. She was one of us. She was the spouse of a person with a spinal cord injury.

All caregivers of someone with an SCI have to keep the balance of having their own life and doing their caregiving but spouses have an extra fine line that sometimes becomes blurred and easy to cross. We have to care for our spouse but we also have to keep the marriage relationship intact. It's very easy for us to let ourselves slip into a sort of "mommy" identity with our spouse and it can be damaging to a relationship. It's important for us to keep the caregiver and the husband/wife relationships separate. Dana Reeve understood that and she set a wonderful example for other caregivers.

I liked the way she tried to keep her own identity. I like how she gave full credit for the help she received from others and showed that there is no shame in asking for and receiving help with caretaking. I like how she kept her sense of humor and really understood that when stuff was difficult or irritating or even downright disgusting, sometimes the best solution was to just see the humor in it. I like how she didn't play the martyr and she didn't see her husband as a burden. I admired her commitment. I admired her dignity. I admired how she honored the dignity of her husband.

I'm sorry there's one less of us in the world. One less caregiver of a SCI spouse who understands how we're just a little bit different than the rest. And I'm sorry that today and tomorrow and the next day new caretakers will be created because their spouse will be involved in some accident that leaves them with a spinal cord injury but the life of Dana Reeve and the work she's done and the example she set will make it easier for them to walk that blurry, thin line.