KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I'm sure anyone who is in the medical field understands what a "zebra" is in medical terms, but for those who don't, it goes back to an old saying taught to doctors and medical personnel:
"If you hear hoofbeats, think horses, not zebras."
But what if you're an alien zebra?
That saying is meant to tell doctors to look for the most likely solution to strange symptoms - a medical "Occam's Razor", if you will. The problem I have with it is that far too many doctors interpret it as "think horses, not unicorns" because some seem to feel that zebras don't exist. Believe me - they do. And then sometimes you run across an alien of the species. I know; I am one.
My base disorder is pretty rare, which is what makes me a zebra. It's called "Familial Hypokalemic Periodic Paralysis Plus". You can decipher much of it from the name. My family inherited a condition in which the potassium in our system is sometimes in the wrong place at the wrong time, and we end up temporarily paralyzed. It's an ion channel disorder. In very general terms, an ion channel is what carries electrolytes between the muscle cell and the bloodstream, almost like a valve. If the ion channel leaks, or doesn't function properly, the balance between electrolytes inside and outside the cell is thrown off. It's kind of like the electrolytes in a car battery. If you have an imbalance, you can't start the car. For me, it means that I can't "start" my muscles. This is a very simplistic explanation, but it's as close as I can get. The "Plus" designation refers to the fact that those who have our specific mutation (which has not yet been determined) also have extra symptoms that most Periodic Paralysis patients don't exhibit.
So why am I an "alien" zebra? Part of the reason is that I experience three different forms of paralysis, or immobility. No, I didn't know there were that many, either, until I experienced them. :) But we'll talk about those later.
Sometimes I think "paralysis" is a misnomer, because people assume that if you're paralyzed that it's permanent, and they assume that you can't feel anything when you're paralyzed. What I experience is temporary, and believe me - if you step on my feet, I'm gonna feel it!
The whole disorder came as a surprise to me. As a child, I was very strong. By the time puberty hit me in the head with a very large rock, I couldn't pass PE anymore, and had to have it waived. I was diagnosed with Mononucleosis - a three year stretch of it.
My first full paralysis attack was very strange. I was married at the time, and had two small children. I found myself in the kitchen, suddenly feeling as if someone had drained all the strength out of me, and I had to sit down on the floor. It got worse, and I had to lie down. At that point, I realized I couldn't move anything at all, and didn't quite know what to do. I should have been scared, but I guess I was too tired to feel anything other than a desire to become one with the linoleum.
My husband walked in and asked me what I was doing. Now you have to picture this - I'm lying flat on the floor on my stomach, face turned sideways, and I have no idea what's going on. So I peered up at him as best I could from that angle, and said "I'm listening for buffalo".
He laughed, and said "And?"
I replied with "Well... I don't hear anything yet, so I think we're okay".
At that point he asked what was really going on. I told him I had no idea, but that I couldn't move. How on Earth do you tell someone that you're paralyzed, when you haven't a clue as to why? It's the strangest damned thing. I called my mother later, and found out she'd been having similar problems for a while, but she hadn't felt comfortable talking about it. After she discovered that I was having issues too, she talked to her sister - and guess what? Same thing there... some of them dealing with episodes of paralysis, but unwilling to share that information outside the immediate family, because it was JUST TOO STRANGE.
It took us years of research before we found the Periodic Paralysis support group, and finally got a diagnosis. The funny part of this is that during the middle stages of our research, back when the internet still had that "fresh tubez" smell, if you did a search for Periodic Paralysis, you came up with (believe it or not) horses. For many years, champion horses were bred FOR Hyperkalemic Periodic Paralysis, because it made their muscles look stunning. Of course, the paralysis was a slight problem, but damn, they looked pretty! And no, my muscles don't look huge. I have a slightly different variant. But, oddly enough, I do like oats....
In case you hadn't figured it out yet, quirky humor is a very common coping mechanism in my family. For years after my first full-blown episode of paralysis, we referred to our episodes as "buffalo attacks" since we didn't have an actual diagnosis yet, and no real idea of what was going on. My cousin had an attack at a Periodic Paralysis conference a few years ago, and one of the other women there sang Disney show-tunes to her. Whatever works, right?
So - that's the zebra in me. The basic disorder.
But I still don't know why I'm an alien.
As I said above, I experience three kinds of paralysis, or immobility, depending on your definition, plus a few other odd symptoms.
- The basis of Periodic Paralysis - flaccid paralysis. This consists of extreme weakness, to the point where your whole body becomes immobile. I've had thousands of these attacks in my life. If you can imagine pushing yourself to the point where exhaustion quite literally will not let you lift so much as a finger, then perhaps you can imagine what that feels like. Luckily, there are medications and solutions for this. When I feel one coming on, I can take fizzy potassium (potassium bicarbonate) and it will alleviate the problem... usually. I've had to give up a few times and just try to sleep it off if I could. This particular kind of paralysis can last for hours if it isn't treated early on. Just for fun, try sitting in a "comfortable" chair for an hour without moving a muscle. It's amazing how quickly you redefine the word "comfortable". :)
- I don't know what the second type of paralysis is, unless it's a strong form of myotonia, or paramyotonia congenita. Neither one really seems to fit, thus the "alien" designation. This one doesn't involve as much weakness, but it sneaks up on me. I don't drive, because I haven't found anyone yet who is willing to drive a car in front of me at all times, with a mattress tied to the bumper. You would think someone would do that for me, wouldn't you?? :) Problem is, I can be sitting and talking to someone, and one second I'm moving and talking - and in the next second I can't move at all. Luckily for me, these episodes tend not to last more than ten to twenty minutes. This and the flaccid paralysis have some things in common. Generally, when I'm paralyzed, I can't talk, and I can't cough or clear my throat. That part gets a little scary sometimes.
- Last but not least - from time to time I have episodes that appear to be a form of tetany. My shoulders might jerk, and then my hands and arms twitch or curl inward, or my left arm curls up behind my back. As it progresses, my toes curl under, and my legs bow outward slightly. My entire body stiffens up, and it becomes difficult to move. Sometimes this condition is preceded by a change in mood... I get irritable or depressed. This kind of attack is brought on by exposure to strong fluorescent lights, cold, hunger, and heaven only knows what. I take calcium to bring me out of this, or eat, or just remove myself from whatever is bringing it on, if possible. Or I do all of the above.
Most of my friends and family know what to do when I'm having these attacks, and sometimes they can see them coming.
Added to this is the multiple chemical sensitivities - stuff that doesn't bother most people makes me gag, cough and choke sometimes... I can't wear most perfumes, have to buy hypoallergenic soaps and shampoos, I'm allergic to practically everything except breathing (and the jury is still out on that one). I can't wear certain types of materials, and have difficulty with tight clothing.
Food allergies - nuts, milk, chocolate, oranges, tomatoes, potatoes, corn, and the biggest monster of them all for me - red dye #40. Okay, fine - I admit it. I eat chocolate, oranges, tomatoes, potatoes and processed forms of corn, and even sneak a little milk now and then. My Doctor said that was fine, in moderation. Sometimes I even remember the moderation part. But the red dye I avoid like the freaking plague, because that stuff is almost like a slow death for me. Can't have the nuts anyway - or seeds... figures, on top of all of that, someone decided to throw in diverticulosis. You'd think the allergies would be enough, wouldn't you?
Out of all of my issues, the one that has hit me the hardest is one that I finally found a solution for. I don't know why it works, but I'm not sure I care. It works, and that's what's important.
For about the last twenty years, I have been going downhill physically, to the point where I was absolutely certain that I would be in an electric wheelchair by now. Either that, or dead. I didn't tell people that, because I worked hard at being cheerful, and not just on the outside. I was reasonably happy then, and I'm happy now, because I decided long ago that it was something I could choose for myself. I have met people in my life who were absolutely determined to be unhappy, and that made me realize that I could choose a different path. I was going to be weak anyway, and since I couldn't do anything about it, I worked hard at finding reasons to enjoy life.
I make no bones about it though - getting by was very difficult. Eighteen months ago, just walking into the kitchen to grab something quick to eat was torture. Every muscle in my body was horrifically weak and painful, and it was getting worse as time went on. On a good day, I might get to walk (dragging my feet) a quarter mile at best, but I always paid for it the next few days if I did. Didn't get in a wheelchair and give up because (as my cousin says about our whole family) I'm STUBBORN. Everything I did was a coping technique. Everything. Sitting in a chair, I had to be able to lean on something. Walking, I held onto walls. I took every supplement I could find that would help increase my strength (up to and including L-glutamine and creatine, but no further). All of my shoes had the fronts scraped off, because my feet dragged most of the time.
Some of you already know this story, but I'll tell it anyway. Last year, my roommate and I were going to garage sales... drive, rest, walk a few feet, sit and rest some more. I really wanted some chocolate ice cream, but that's two allergies combined. It struck me - why not try some Lactaid? Might help a tiny bit... or so I thought, anyway.
That day and the next, I took the Lactaid with each meal, so I could have that ice cream, and maybe even a little bit of butter on a roll. The next day, I figured "Okay, here's my crash day" and I prepared myself to be out of commission. But I actually felt strong enough to do both dishes AND laundry. Both?? On a potential crash day?? That's heresy! :) Hell, I was rarely able do both on a good day.
Day three, Monday, I still hadn't crashed, so the roommate asked if I wanted to go to Animal Kingdom, at Disney World. I said "Sure, but I might fall out on you...."
His answer was that if I did, we'd just go home.
I didn't crash. I actually made it through the park, and lasted about four hours. I had to stop and rest frequently, and my legs and feet hurt like crazy at the end of the trip, but I made it. My reaction was somewhere between utter delight, and "What the HELL??"
I still haven't had that crash day. It used to be a given - one or two semi-decent days a week, and the rest of the week was spent pretty much in bed (and NOT having fun). Since that day, I have been taking the Lactaid every single meal, along with a multiple digestive enzyme. I don't eat without them, ever.
I know I'll probably never reach "normal" strength again, and I still have bad days, but... I never - ever - thought that it would feel good to walk again. But it does. It does. Sometimes I catch myself walking through a store, striding along like it's, you know, normal or something... and I'll start giggling. It's a damned good feeling, and I'm thrilled to death about it. It took me a year of working hard and pushing past pain to get to this point, but the pain doesn't bother me. That's something I'm used to. The energy, however, is new, and most welcome.
I have absolutely no idea why taking digestive enzymes gives me back the strength I thought I had lost forever. I probably won't ever know. None of the doctors I've spoken to has any idea. But hey - if it works, it works, right??
And now, if you will forgive me, I'd like to add a few personal notes, on being disabled....
- I look normal, most of the time. Until I start twitching, dragging my feet, or curling up - I look normal. So if you see someone in a motorized shopping cart at the store, and they look normal to you - please don't assume that they're just lazy. I'm sure there are a few lazy people out there, but that doesn't mean we should assume anything. You just never know. I can't tell you how many times people have said to me "But you look so normal..." Yeah... looks can be deceiving.
- Don't be afraid to offer help if you think someone needs it. Yes, some who are disabled have a lot of pride, and don't want the help... so you might be rebuffed. If so, I'm sorry. It's difficult being disabled, and yes, there are times I prefer to "do it myself". But I always remind myself that an offer of help is an act of compassion, and I honor that. So if you offer help, please don't be upset if the person you offer it to is cranky - you never know what their day might have been like already. Sometimes maintaining a pleasant attitude can be extremely difficult, if you're in a lot of pain. But if it's me, I will always do my best to say "Thank you!" even if I politely turn down your offer - and sometimes I will gladly accept. One of the hardest things in life is to realize that we might need help once in a while.
- Suggestions are welcome, but if I had a dime (inflation, sorry) for every time someone said "You just need....." I would be able to buy a new house - and a good one. :) Don't stop offering suggestions, but perhaps phrase it differently? Or don't be upset if we don't take your suggestion, because odds are, we've already tried it, or heard it many times before. But understand this - if you offer me a suggestion, I'll gladly listen, because I am always grateful for anyone who wants to help. Besides, you never know when someone is going to give you that one tip that changes your life! Compassion and empathy are wonderful traits, and our society is sadly lacking in them, all too often. So yes, offer that suggestion - and thank you in advance!
- Yes, I'm disabled - but I tutor math, I draw, I fix computers and help people with software issues, and I can fix many of the things around my house. Disabled, yes. Unable? No.
- Just because someone is disabled, please don't assume that we don't want to attend a party, or go out to dinner, or do something fun. If our being there makes it NOT fun for you, then fine - don't invite us. :) One of my few remaining fears is that of being a drag on someone else. I'd rather not be invited to something than be there and know that I'm not wanted. But if you actually want my company, don't hesitate to invite me - understanding, of course, that if I can't do it, I might have to say "no"... or go home early. My food allergies make people uncomfortable when it comes to eating out - they're afraid I won't be able to find something to eat - but let me deal with that. I'll do my best to sort it out quietly, and make as little fuss as possible. Most of us who are disabled have found ways to deal with our issues, and as for me - I can find something to eat at almost any restaurant. I guess what I'm saying is... we're people. Just like you are. Just like anyone else.
And yeah, I might be an alien zebra - but I promise I won't abduct you, or probe you... unless of course we find each other attractive, and you ask to be probed. Just sayin'!
Feel free to ask any questions you might have, and thanks for reading!
UPDATE: Since I'm too slow to keep up with all the wonderful comments, I just wanted to say "Thank you!!" here. This really is a great community, and I appreciate all the support!