Monthly Archives: November 2014

30Nov

Invisible Disabilities

Have you ever seen a person park in a handicapped spot, then watched them exit the car, and thought, “Well, they certainly don’t look handicapped.” In your eyes, there is no evidence. No walker, no wheelchair. No crutches, cane or noticeable limp. And for a moment, there is that annoyance, or even a flash of anger, thinking this person is a pretender, a fraud? Someone taking advantage of the system? Because wouldn’t you love to have that handicapped spot, right in front?

But there are so many illnesses and disorders that are invisible to the naked eye. Fibromyalgia, chronic fatigue syndrome, lupus, MS, compressed discs in the back, other spinal injuries causing pain, early onset of Lou Gehrig’s disease (ALS) – all of these can lead to either a loss of muscle strength and/or pain which makes walking difficult, and that handicapped placard a necessity.

When I am out with Ripley, my service dog, I encounter a similar problem. From the outside, to the casual observer, I seem perfectly healthy. Here I am, walking with a service dog. People try to make sense of that. Although few would ever approach someone to ask about their handicapped placard, because there is the additional attraction factor (people are fascinated by working dogs), total strangers feel free to strike up a conversation everywhere we go.

So this is what I hear:  “Who do you train dogs for?” “Are you training her?” or even “Is that your dog?”

This despite the fact that Ripley is now nine years old. Yes, she does look good for her age, but anyone paying any attention can see the whitening around her muzzle. And she is clearly not a one- or two-year-old yellow lab. You can tell that simply by looking at her body.

I am hesitant to discuss my medical history with strangers. It feels so personal. But I have decided here, now, to tell my story, in the interest of education, in hopes that it might help others.

I have a seizure disorder. This is, thankfully, right now completely controlled by medication. The medication causes some side effects. It can be heavily sedating, particularly at night. I also have bipolar disorder. This, too, is managed by medication, but is more tentative. I have to be careful about getting the right amount of sleep, not staying up too late, eating properly, watching for warning signals that my system is getting out of balance. I have pills to take as needed to bring myself back into alignment when things get wacky.

For these two illnesses, Ripley helps me in several ways. She is trained to respond to an alarm on my watch, reminding me to take my medications. (I tend to turn the alarm off, then forget to get up and actually take the pills. In fact, I did that just this minute.) If I get amped up, in a manic state, Ripley notices, and makes physical contact, pressing her body against me, which helps me to re-center. Because of the sedative quality of my medications, I need her for hearing dog skills at night. My wife, Sabrina, works a night shift. Ripley will wake me in case of nighttime danger — a smoke alarm, etc. She wakes me when the alarm clock goes off. I also have terrible nightmares, and get trapped in them, unable to wake myself because of the medications. Ripley senses my distress, and gets on top of my chest, licking my face until I wake up.

But the illness that has been kicking my butt for the past three years is something called Periodic Paralysis Disorder (PPD). I first had an episode when I was in my early twenties, but it was thought at the time that it was a seizure. Even three years ago, when the episodes started happening with alarming frequency, my neurologist thought they were some kind of seizure, and my psychiatrist thought they were some kind of psychosomatic reaction. With only a couple of seconds warning, I go into a paralyzed state. My arms, legs, and face become completely unable to move. I cannot talk. But I am fully conscious and can hear what is going on around me. The episodes last anywhere from three to ten minutes or so. I never know when they will happen. Sometimes I go several days without having one. Sometimes I have one a day. Some days I have as many as five, six, seven or more. The more I have, the more exhausted I become, as they have a cumulative effect. My muscles weaken, and I have a harder time recovering. I appear somewhat drunk after, with slurred speech, and have difficulty walking. I often have to go sleep to regain my strength.

It took a while for my neurologist to diagnosis the PPD. I actually had an episode in his office, and that’s when he realized what was happening. Then we did a genetic test, and confirmed the diagnosis — it is a genetic disorder, caused by an improper release of potassium at the cellular level. There is no cure.

I lost my driver’s license three years ago, and had to leave my job. I am now on SSDI, because I cannot hold down a regular job. I never know when and where the attacks will happen. I still go out and do things, but having Ripley is an absolute lifesaver. If I am alone downtown, and have an episode, I may end up slumped on the floor in the middle of the aisle at the hardware store. Or collapsed in a chair at a coffee shop. To outsiders, I appear to be asleep. But in weird places. Ripley’s presence alerts people to the fact that something medical is going on. She comes between my legs, places her head in my lap, watches over me until I come back into my body. I would not feel safe without her.

So, no. I am not training Ripley. I have a disability. Please do not make assumptions about people that you see out in the world. There are so many invisible wounds.

Michelle Wing © Copyright 2014, All Rights Reserved
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