May is ALS awareness month, so it came as no surprise to see an episode of the Night Shift where a man was diagnosed with it. It made me think of when I was diagnosed.
I had several uncharacteristic falls prior to my diagnosis. I fell on the job, but I was actually walking backwards and stepped on my friend’s foot. So I explained that one away and laughed it off with everyone else. I later fell twice in my son’s room; once after stepping on a small toy;and the other was more of a slide from the edge of his bed because my feet were tangled in his comforter and the hardwood floors did the rest. I sprained my knee that time, and wore a brace for a few months because it would give out occasionally. In hindsight, these were the first signs of my legs becoming weaker, but since I could explain each fall, I thought nothing of it. And because I couldn’t ride my bike, my weight, blood pressure and other things ballooned out of control.
I began looking into gastric bypass surgery. I had been approved by my insurance and had completed all the requisite clearances and had a date for surgery, December 16th, 2010. Three weeks prior, was a family vacation to Disney World, and I drove there and back. And anyone who has taken children there that it’s miles and miles of walking! My legs were so worn-out that I was literally using Laila’s stroller as a walker by the end of each day. Of course, I attributed this to my weight-gain and inability to exercise the last few months. On the night we arrived home, I slipped on a slick spot and grotesquely broke my left ankle, requiring a plate and six screws. Little did I know that I wouldn’t walk again without assistive devices.
The symptoms of ALS are often accelerated after traumas such as car accidents, surgery, etc. So when I began to lose the ability to raise my arms while recuperating from my ankle, I feared that I had damaged something else when I fell. Then I remembered a few things, like being unable to play fast runs on the organ several times over the past year or so, and the mild numbness in my fingertips, or the fact that during the FL trip I had people open my bottled water because I couldn’t get a grip. I was scheduled to see my primary physician about that the week after vacation. So after multiple consultations, and months of therapy and devices to help extend the use of my hands, I received the diagnosis.
Over the next 18 months I lost the ability to feed, toilet, bathe, or care for myself in any way. It should have been scary but it wasn’t. It was frustrating and in some cases embarrassing, but never scary, except for when I had to deal with steps. Every time I had to navigate stairs I could see myself falling. But that was it. When my speech became more and more slurred and eating and drinking became more and more difficult, I was saddened. I had been gradually losing everything that made me human. I had begun to use the CPAP machine 24hours a day instead for sleeping only, life was looking bleak. By December 2012, I was facing surgery that would leave me dependent on a machine to live, or death by suffocation and/or starvation.
Obviously, I chose surgery, but it wasn’t just for the extended life-expectancy. The fact is that from the day doctors suspected ALS in February 2011, through my official diagnosis that June, through every single physical loss to date,I have been believing that God’s going to heal me! And as I look back on the journey of the last five years, especially the last two years where I’ve battled a wide variety of fears, isolation, rejection, loneliness and even hopelessness, God has continually delivered me into His grace;a place of faith and strength! Where I am reminded that His power is greater than the challenges that I face, and His grace is sufficient while I wait for His healing!
When you find yourself in a valley, there’s no telling how He’s going to provide deliverance. But whether He leads you through the valley, or removes the mountains from around you; if you stay in Him and not allow what you see or feel to affect your faith, your circumstances can not conquer you!