Just recently, I experienced what could arguably be described as the most horrific 48 hours I've spent on this earth so far. Completely devoid of movement - yet painstakingly granted the sensory experience of intense pain - I found myself to be totally and completely paralyzed. Legs, arms, hands, toes, neck. all over. Each and every muscle in my body decided to simply wave up the white flag in surrender. No matter how I begged, pleaded, even prayed. They weren't moving.

This is not new for me. In fact, my "condition" is now an adult (if it wanted to, I suppose it could legally buy cigarettes and drink juice at strip clubs); I've been experiencing paralysis attacks on and off (with various degrees of intensity) for the past 18 years.

I know what you're thinking and no, this isn't some freak happenstance. No, I wasn't in an accident - and I didn't come into my part-time paraplegia in the "normal" way. I have a rare genetic condition called Primary Hypokalemic Familial Periodic Paralysis - or HypoKPP for short. According to the Periodic Paralysis Newsdesk (which definitely explains things more eloquently than I ever could):

All of the periodic paralyses are caused by abnormalities in the ion channels (especially the sodium and calcium channels) of the muscle membrane. The ion channels control the movement of sodium, chloride, potassium, and calcium across the cell membrane and from one cell compartment to another. This movement of ions produces the electrical 'spark' which allows our muscles to move. Hypokalemic Periodic Paralysis is caused by a flaw in an ion channel in the muscle membrane. This flaw makes the person with HypoKPP extremely sensitive to decreases in serum potassium that wouldn't bother the average person. Anyone can be made weak by a drastic lowering of serum potassium, but the person with HypoKPP gets weak with even a slight fall in potassium level, and patients with HypoKPP may become profoundly paralyzed while their potassium levels remain within normal limits.

From what I've learned through meeting other people with my condition, as well as through independent research, HypoKPP manifests itself differently in each person. Some experience complete and total flaccid paralysis; others find that it's more rigid, even filled with pain. Even others, like myself, often experience a combination of the two - which varies in degrees based on the intensity of the attack.

While I've come to live with the random mild episode - a leg not working here, an arm acting a little weak there - the true test of my self-will and empowerment comes in times like my 48-hour experience, times when I am forced to endure complete, full body flaccid paralysis for days at a time. There is no way to get to a bathroom, no way to move even the tiniest, itsiest bitsiest muscle. It is oh-so-painful and completely claustrophobic. And it is something that very few people know about.

There are times throughout a severe paralysis attack when I am absolutely convinced that I'm going to die. Seriously. And, truth be told, if it weren't for the outstanding, loving care-giving of my loved ones (most specifically, my husband), I probably could die. You may be wondering why I don't just call a doctor or go to the hospital. Believe me, I've thought about it - and in the past, I've even done it. But I've learned through tough trial and error that because my condition is so unknown, it's often more dangerous to put oneself through traditional Western medical channels. Because hypokalemia is rare, not too many physicians know about it. As such, visiting a doctor - much less an emergency room - often comes down to the patient having to educate the medical community - and I've found that some doctors let their egos get in the way. Others want to treat you like a guinea pig, seeing the possibility of publication in a major medical journal dance before their eyes. Still others are just plain ignorant; I've even been told that "people just don't get paralyzed" and, further, that it's "all in my head." (Um, hello? I can't move here. Not making this up.) Further, thanks to the bureaucracy that is the American healthcare system, I have to protect myself - and my medical record - by only going to doctors I trust, doctors that aren't going to write in my personal and permanent file that I'm "making it up" or don't know what I'm talking about. As I discovered a few years back (when I didn't know any better and trusted all physicians equally), such ignorant comments almost kept me from obtaining health insurance.

Ah, but that's another story for another time.

Back to the matters at hand: Awareness. Trust. Empowerment. See, as odd as it may sound, my true sense of self-empowerment often comes when I'm paralyzed. In those moments when I'm paralyzed, the rest of the world doesn't exist. I can't feel anything but the pain; I work hard on meditation and enlightenment. And I have a lot - and I mean a lot - of time to think. Above and beyond the thoughts of self-pity and denial and flat out desperation and hopelessness, I somehow always find the way to think one thing: This is the test that I must endure for this life. This is the test that makes me who I am - that makes me stronger. This is the condition, the experience that makes me ME.

After all, there aren't a whole lot of people who can say that they "sometimes" get paralyzed. It just doesn't happen. And if you think about it, that can be damn empowering. It just all depends on how you look at it.

This is not to say that I don't experience tremendous amounts of self-doubt, hopelessness, anger, and desperation. Quite the contrary. In fact, I don't think I've ever experienced a full paralysis attack in which I don't think to myself - even for a moment: Is this all I get? Will I ever get better? Am I destined to be paralyzed forever? It's easy to fall into the panic, to let it get the best of me. But it's something I work hard to overcome - for my mental health, as well as my physical well-being - because stress is, go figure, one of my biggest paralysis triggers.

Other triggers for my HypoKPP (other than stress) include: diet (too many carbohydrates or sugars can send me spinning into an attack), a weakened immune system (such as what happens with a severe cold or flu), a reaction to too hot or too cold of weather, under or over-exertion (too much or too little exercise), lack of sleep, and many other body imbalances. Just like many of us have found, and the experts often preach, it's all about taking everything in moderation - "even moderation."

Interestingly enough, I also find that a central struggle with my paralysis is linked with my femininity. My attacks first began at puberty; from what I'm told, there's a good likelihood that they'll end at menopause. Whereas many sources cite that diet is the major cause of a hypokalemic paralysis attack, I've found that there are many more causes - more important causes, even, in terms of the frequency and duration of attacks - which often begin and end with my hormonal levels. I used to experience a mild to moderate paralysis attack every month at the same time of the month, for instance. Yet with the help of some natural herbs and supplements, I've learned to make those episodes less frequent. Now, while I still have to be careful of my body around certain times of the month - that is, try my best not to add any of the other triggers to my plate - I can sense when a hormone-related attack is going to begin, and then take preventative measures to counteract it before it even gets going.

Usually, that's all fine and good - but I can't help to sometimes get a bit bitter about my gender - to wonder why I have so much to deal with, as a woman, as well as a patient with HypoKPP. Not that the men with HypoKPP have it any easier, but I often wonder if they have a little less crap to deal with, and a lot less fewer "triggers" for an attack. I mean, for fuck's sake; isn't it enough to have menstruation and cramps and mood swings without also having to worry about getting paralyzed while I'm at it?

But maybe that's just my feminism talking.

With all of that said, it's probably no wonder that I've struggled with body image issues nearly all of my life. While most of my hang-ups aren't related to physical appearance (although, believe me, I do have some of those as well), they are applicable to physical capacity; that is, I'm often pissed that my muscles simply refuse to cooperate. This has led to feelings of self-loathing, vulnerability, and self-pity - as well as envy towards others who are healthy and well and able-bodied.

It's taken a lot to grow to a point that I can view my disease as something that doesn't make me any less of a person - or less of a woman - than the one next to me. Because I'll tell you this: It's tough to be 'disabled' when no one else around you can visibly tell. It all comes down to the one day when I can't show up for work or school or an appointment . and then the story always comes out. The story that always affects people's reactions to me in one of a few different ways (awe, discomfort, pity, silence, and/or embarrassment are popular favorites).

It's the story that changes me in their eyes as a person, as a woman.

Because once my story has been told, my relationship with the other person is no longer stable; my body, and therefore my existence, has become unpredictable.

My body dictates what I do in life, how I respond to pressure, the way in which I express emotion. My body tells me what I can eat and how often, whether or not I can have a glass of wine with that meal, a piece of chocolate at Valentine's Day, or a beer and hot dog at the game. My body makes the rules - and sometimes I defy them.

I often pay for my defiance - in the form of loss of movement in one limb or another. But it's a price I'll sometimes willingly pay to regain some sort of footing, some sort of assurance that, despite the laws my body has created, I really am the one in control. I am the mistress of my own health, of my fate. I suppose it's the price I pay for that sense of empowerment - that regardless of the consequences, I have chosen my own fate; I do have the power to make my own choices, in my own life and for my own body.

Sure, my body may make the rules, and, yeah, I might enforce them. Most of the time. Yet there is still a part of me that remains the ever-present rebel, the one who won't and can't accept her condition, who tests limits, pushes boundaries, breaks rules, and attempts to accomplish the impossible. And who continues to try and have a peaceful coexistence with this body, the body that is unforgiving, bullying, and ruthless - and love it just the same.

Okay, so yeah. I went through a 48-hour hell that few will ever experience. But I can also take the experience and learn from it, grow from it, and use it as a continual source of strength - and empowerment.

And try like mad for it to never happen again.

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