That's what I usually get when trying to have this tough conversation with people. It is usually accompanied with an extremely confused and puzzled look because up till now, my wall has been up, and I'm just like every other person - not a weak muscle in my body. And the very reason I usually have this conversation is because I've reached a point where I can't keep up that wall any more... because it's crumbling. Today the reason is different.
Before I proceed further, let me take a moment to give you the Wikipedia version of what this is that I was diagnosed with a couple years ago.
Defined: Hypokalemic periodic paralysis is a rare, autosomal dominant channelopathy characterized by muscle weakness or paralysis with a matching fall in potassium levels in the blood (primarily due to defect in a voltage-gated calcium channel). In individuals with this mutation, attacks often begin in adolescence and are triggered by strenuous exercise followed by rest, high carbohydrate meals, meals with high sodium content, sudden changes in temperature, and even excitement, noise or flashing lights. Weakness may be mild and limited to certain muscle groups, or more severe full body paralysis. Attacks may last for a few hours or persist for several days. Recovery is usually sudden when it occurs, due to release of potassium from swollen muscles as they recover. Some patients may fall into an abortive attack or develop chronic muscle weakness later in life.
My version: Keeping it simple, there are certain triggers (heat, cold, high carbs, strenuous activity, stress, etc.)... you know, parts of every day life... that cause these "attacks." Attacks for me vary in kinds as well as severity. One, all the muscles in my body cramp up, and I look like I'm having a seizure (imagine a spider balled up once water is sprayed on it). Two, all my muscles loose strength, and I can't move a muscle (imagine a dead person). Both of these attacks generally include not being able to speak (literally), unable to move, extreme emotions, exhaustion, and difficulty breathing. These attacks are varied and usually occur very unexpectedly.
Chances are, you haven't seen me like this. Somehow, I am usually able to keep it in until I can let it go (Thus the reason I may disappear at an event). Chances are, you don't understand. That's understandable. Only 1 out of 100,000 people are diagnosed with this.
Two out of four in my family have been blessed enough to be diagnosed and are now on medicine to help prevent having as many attacks.
Why am I writing about this? Because I need to - for myself and for others with HKPP. There are those out there who have this disabling diagnosis and yet others who have yet to be diagnosed, but it is real, and it is written about so little. My doctor sees maybe 1 patient a year with this.
It can be difficult to live with this. Reasons are varied.
1) People don't get it - you seem normal most of the time, so you should be normal all the time. Maybe 10% believe I actually have a legit health problem. But I guarantee that if they would see someone with an attack, they would want to dial 911 in a heartbeat. No need. We live this most of our lives. We know it will eventually pass. It's something we hide. It's something we don't talk about. Because we wish it weren't true. And most of the time we try to fool ourselves into thinking its not.
2) We are young. We're full of life and dreams and for those of us who are Christians, we want to be ALL OUT for God! Besides, isn't the mark of a true servant of God faithfulness? But there are certain limitations, and we just can't push ourselves past them, otherwise we WILL be flat on the couch, unable to take a step, and fighting for our next breath. There are just sometimes when we can't be "faithful" to do everything that everyone (ourselves included) thinks we should do.
This is something I have faught with ever since I started having problems two years into college. I want to be more, do more! -- And people expect it too! It's hard for me to understand why God would allow this in my life when my desire is to serve Him.
But just the other day, the sweet Holy Spirit revealed something to me as I was praying over this for the billionth time. He whispered to me the words of the verse in Corinthians... the words that He whispered to me years ago when I sensed I wanted to do something special for Him.
"I have chosen the weak things."
And so, I'm breaking down the wall. I'm going to be honest with myself and with others about the lot God has allowed me to have in life. And I'm going to cling to this verse, letting God use what He has chosen as HE sees fit.