R. Leigh Hennig recently moved with his wife and three young children from Rura Penthe, er, Rochester, NY to Seattle. Leigh works as a network engineer by day, and when he’s not working on Bastion Magazine in the night, he’s writing his own short stories as well. He’s also an avid soccer fanatic (center back for his Tuesday night team — a defensive rock, and about as fast as one as well) and is probably more dedicated to Arsenal than the Pope is to Jesus.
It’s a cool, sunny fall afternoon in Seattle. I’m in my backyard enjoying a Founder’s Breakfast Stout, grilling burgers, while my children—five, six, and eight (the youngest is a girl)—run about and play. The youngest two are chasing each other through the grass blindly, their shirts pulled over their faces. They laugh and squeal and carry on like the wonderful lunatics that all five and six-year-old children are. I smile. Behind them labors my eight-year-old, trying to keep up. He wobbles awkwardly as he swings his arms far out to his sides, attempting to maintain his balance. His left foot turns in sharply while the other struggles to compensate, despite the corrective action of braces and seven surgeries. More are planned. I still smile, but it’s a burdened smile.
I am able-bodied, as are my wife and youngest two children. My oldest son has spina bifida. Despite our health, my wife and I still feel the shackles of disability. We don’t face the outward struggles that my son and other disabled people endure. Our burden is an internal one, unspoken to others. Even from those within the disabled community, there are some that will take offense to my description of disability as “shackling,” and chastise me for it. How dare I suggest that my son needs to be “fixed”? According to some within the disabled community, he’s not. He’s able-bodied. After all, what do we know about being disabled? We’re told that we should shut up, and be thankful that it’s not us, and that our feelings have no place out in the open. It’s taken me a long time to disagree.
There’s been a number of works, both fiction and non, that have taken a realistic look at what it’s like to be disabled. It’s a little trickier to find something in the speculative fiction world that exposes the kinds of things that the loved ones of disabled people go through, however. “The Promise of Space” by James Patrick Kelly (Clarkesworld, Issue 84, September 2013) speaks to this beautifully. The story is told exclusively through dialog between two people: Kirk “Andy” Anderson, and his wife, Zoe. Andy is an astronaut that becomes mentally disabled after excessive exposure to radiation during a mission, and although his mind is mostly destroyed (he is aided by a kind of “augmentation” which processes memories and assists him in understanding and communicating), there’s still something left of him to interact with Zoe. The story takes a look at how Zoe reminds him of their history together, and touches upon her struggles in dealing with what’s left of Andy. This story isn’t so much about what it’s like for Andy to be disabled; it’s about what Zoe has to go through as the able-bodied loved one. Speaking to Andy during a visit, she says the following:
“I’m sorry for the way I spoke to you last time. That’s why I missed the last few visits. I don’t trust myself to say the right thing anymore. I can’t filter out my feelings when I see you like this.”
These few lines only begin to convey the depth of Zoe’s emotional struggles. Zoe is madly in love with her husband, but she struggles in dealing with his current state. On one hand, she wants to be with Andy. On the other, her despair at his state is too great to manage. She grieves when she’s with him, but needs time away. There’s a tremendous amount of guilt that’s there as well, which she clearly expresses through her apology and her return visit. Seeing him again is a painful decision.
When I think about the struggles that my son faces today, and what I know he will face in the future, my heart aches. Still, I’ve been told that he’s fine just the way he is. But that’s not true. His body is broken, and I would give anything if I could take his disability away. While he’s expressed those exact same sentiments to my wife and I on numerous occasions, of course we encourage him and do what we can to make him feel confident, normal, and comfortable in his body. But we’re not bad people because we wish we could cure him, and the loved ones of other disabled people need to know the same thing. We love our son, but we hate his spina bifida, and it’s okay to make the distinction. There are tremendous feelings of multifaceted guilt that we struggle with, and that needs to be addressed.
A couple of months ago, our son went to a summer camp for a week. The camp was funded by charity work and run by volunteers and was exclusively for people who had a disability. There were over 100 kids present, ranging in age from seven to eighteen years old. All kinds of disabilities were represented, and they were well taken care of. Their medical needs were met by the wonderful staff on hand, and the camp did a fantastic job of helping to foster a sense of community and belonging. He made friends, sang songs, built campfires, and did just about all of the kinds of things that kids do when going to a summer camp. For one week, my wife and I just had our younger two children. We didn’t have to take care of his special needs. We didn’t have to struggle with wheelchairs or restroom considerations. There were no medications to manage, and no restricted activities that we couldn’t do as a family.
For one week, life was so much easier. And the amount of guilt we had for feeling that way was, and still is, crushing.
When you’re the caregiver of someone who has special needs, depending on what those needs are, there’s a number of complications that are introduced to your day-to-day life. You do them and try to keep your chin up. You try not to let the constant doctor appointments, medications, therapies, and the other things you have to assist with get the best of you. For families in such circumstances, it’s just a part of adjusting to a new normal. Most of the time, we’re successful.
There are times though where you think about what it would be like if you didn’t have to do any of those extra things. It doesn’t usually hit you when you’re in the hospital yet again. It’s not when I’m pointing other nervous parents to where the vending machines are and which break room has the best coffee, and I realize that there’s a good chance I know my way around that hospital better than some of the staff. But there are times when you’re at home, or at the grocery story, or some other typical place, doing any number of normal day-to-day things when it hits you the hardest, in waves. I think about how much easier it would be if my son could be like everyone else, or what life would be like if we didn’t have to deal with these things. Then come the feelings of anger, followed by regret, most of which is internally directed. Guilt is not far behind, and you can’t help but feel like a terrible person because you long for what it must be like to have a normal life.
Zoe feels these things as well. She tells Andy that she won’t be coming to visit him when his body dies, when all that’s left is the augmentation. She grieves terribly for her husband. But there’s a part of her that must be relieved at not having to shoulder the burden of his disability, and the guilt that she has to cope with is surely staggering.
As the father to a disabled child, admitting to myself that I even have these feelings was a challenge. Admitting it publicly is even more difficult. Writing this has been one of the most challenging things I’ve done in a long time, but I know I am not alone. I know there are other parents, brothers, sisters, grandparents, aunts, uncles, friends, and all kinds of other people who suffer with the weight of having to care for someone with a disability. These feelings don’t consume me, I don’t regret my child, and I don’t let these darker emotions keep me down. I’m not bitter, and it doesn’t influence my interactions with my son, or lessen my love and admiration for him. But it’s important to know that it’s okay to wish for your loved one to be “fixed,” even if a lot of the members of the disabled community will reject that and tell you that you’re wrong. It’s okay to feel relief when we don’t have to cope with these burdens. As long as we manage those emotions in a positive way and maintain a healthy perspective, there’s no need to feel guilty, or to internalize all of that.
My son has spina bifida, and I’m not happy about it. My wife is not happy about it. But we’re not going to bottle that up, either. We’re not going to pretend like everything is okay, because it’s not. We’re not going to let our guilt consume us while others tell us that we’re wrong and we have no right to feel the way we do. We’re going to stay positive when we can though, and maintain a healthy outlook for ourselves, as well as our son. We are not horrible people for wishing that he did not have spina bifida, and for wanting to live normal lives. And that’s okay.