I’m not giving up on my dreams. I’m not going to sit and watch life pass by. I’m going to live. I’m going to be happy. I’m going to fight my way through to my happily ever after and find as much joy on the journey through.
The Reason Everyone Is Interested
It’s extremely awkward and embarrassing to be the center of attention for a medical reason. You can’t hide it, it’s often visible, and when it is everyone stares. All you want to do is hide… Or if you’re me, dig a hole in the ground with your cane and become a hermit. Maybe tunnel your way to deserted island on the other side of the planet.
It’s just not the kind of thing anyone wants to be known for.
But the more time I have had to process this and think about it, maybe I don’t want to be defined or identified or labeled by my disease… But I can be known for something completely different. I can be brave, strong, full of optimism, hope, and faith, and stubbornly determined to be happy – supremely happy! – despite my odds and the adversities I face daily. Call me a dreamer but I’m also a believer and I believe happiness is still possible.
I suffer from a mysterious neurological disease that causes severe fatigue, motor weakness, decreased muscle coordination, and episodes of temporary paralysis, among a myriad of other symptoms. Most symptoms come and then disappear within a few minutes to a few hours before returning. But the severe fatigue is ever lingering. As far as I can tell, it’s the after effects of the attacks. It’s my body recovering, but it lasts for weeks and by the time I start feeling better, another attack of symptoms has already started – if I’m lucky enough to go several weeks. Usually it’s just waves every couple hours to couple days.
It’s been a year since the most serious symptoms started and the process of finding a diagnosis started. The doctors have already ruled out many diseases, some of those being vitamin and mineral deficiencies, stroke and trans ischemic attack, brain aneurysm, and Multiple Sclerosis (MS). They did every blood test they could think of and all came back normal. I had a CT, MRI, EEG (electroencephalogram), and a nerve conduction test. No diagnosis yet, but we haven’t run out of possibilities to explore. I don’t care how far I have to travel. I will find a diagnosis and a treatment that will allow me to further reclaim my life. I’ve already started researching possible clinics across the U.S. Until then I’m reclaiming my life starting where it is today. It’s mine, not the disease’s. I will act and not be acted upon.
I have a life and a family. I want to be able to enjoy them, not just endure the tasks of taking care of them. Somehow I manage to make it through each day. It’s nothing short of a miracle. I don’t know how I can take care of them. It’s amazing to me. The day feels impossible but at the end of the day after I’ve put the kids to bed and I lay my head down on my pillow, I celebrate my success. I’m strong, I’m brave, I’m resilient, I’m a survivor… And I need to write this sort of stuff down more to remind myself more often. But it’s the truth and I need to remember that. I wouldn’t have the strength to even try if it weren’t for the knowledge that I have a Father in heaven and a Savior who love me. I know that I receive help every day to get through it all, minute by minute, second by second. “Tender mercies are always evidence that grace is present.” – Sheri L. Dew. I know it. They love me. I feel their love as if it were dripping down as rain or shining through clouds as as sunlight often does. I know it.
So here I am, rising above the lot I’ve been given and using it as a building block to reach to a higher place, a better life.
