Not That Rare

Life is hard. That’s not rare. Life can be full of joy. That’s not rare.

Just over eight years ago, I woke up to find that my legs wouldn't move. I could feel them, they just wouldn't move. I could hear my baby boy calling for me from his crib in the next room. My husband was on his way to work and my older boys were still asleep. I grabbed my cell phone that was next to my bed and frantically called my husband. He was driving his vanpool and turned it around to get back home to me. He told me to call an ambulance, but I didn’t want to scare my boys. I called my neighbor and asked, through tears, for her to come over, giving her the code to get in through the garage. She hurried over and brought my baby to me and stayed with me until my husband got back home. We called my doctor and made preparations to drop my boys off at my parents on our way to his office, about an hour away. My husband carried me to our car and forced my legs into a proper position within the car and we were on our way. By the time we got to my doctor’s office, I had almost entirely regained movement. My doctor ran tests and sent me home. He found no answers for us.

Over the next six months, I would continue to have periods of paralysis that would come and go and would affect groups of muscles or my entire body. I would purchase a wheelchair at the age of 31. I would see various specialists and endure multiple tests without answers until, through my own research and much prayer, I would find the Periodic Paralysis Association and a video of a doctor, and head of the association, having a paralysis attack. Finally! It was like watching myself. I cried as I realized that I was not alone.

Finding this video, and a wealth of information from the PPA, began a process that led to a diagnosis of Hypokalemic Periodic Paralysis. While finding a name and explanation for what was happening to me was incredible, it also brought the knowledge that, although there were some treatments that may help me to deal with this rare disease, there was no cure. This was something I would be living with from now on.

My life had changed. Forever.

Over the last eight years, I have learned so much. One of the greatest lessons I have learned is that although I have a rare disease, I am not rare in my trials. Each of us has something hard that we have to deal with. That is just a part of this mortal experience. None of us will be spared from feeling pain, frustration, fear, anger, or loneliness. Our experiences will be unique to us, but the fact that we struggle with something is not unique. There is power in knowing that we are not alone.

We are not human beings having a spiritual experience; we are spiritual beings having a human experience. -Pierre Teilhard de Chardin

I have come to realize that this illness isn’t my weakness. It is the lens through which I am able to see my weaknesses. It slows me down. It causes me to ask the hard questions. It leads me to ask who I really am.

My illness leads me to Christ. It causes me to rely on him. As I come to him, he will show me my true weaknesses and make me strong.

If men come unto me, I will show unto them their weakness. I give unto men weakness that they will be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them. -Ether 12:27

My illness is just a training ground for being a better person. It magnifies my faults and my shortcomings, those things that are my true trials in life. If it weren’t for this illness, I may not recognize my need to change and grow.

Don’t pity me because I have a rare disease. Pity me because I have human frailty, because I have shortcomings and imperfections. Then again, we all have them. So, don’t pity me. Just be patient and encourage me as I work on turning my weaknesses into strengths. While you are at it, be patient with yourself.

We may feel that it’s easy for others to handle their burdens. We may think that ours shouldn't be this hard to carry. The truth is, life is hard at times for everyone and our struggles are not as rare as we think. The flip side of that is that life can be joyful in all circumstances.

Turn your face to the sun and the shadows fall behind you. -Maori Proverb

As we keep our heads up, we will see the beauty in life, and we might even recognize that there are those around us that we can relate to in deep and meaningful ways.


Reach out in understanding to someone else today. Share your story of pain or triumph. As we come together no one ever needs to feel alone.