From Misery… to Miraculous

“A miracle. You’re truly a miracle to have made it through that and be here in this moment.” – Tony Robbins, I Am Not Your Guru

I heard a reference in a show recently to someone who was experiencing a terrible chronic illness as a state of living death. Living death. That struck me. That’s how I would describe several of my past ten years: existing in this life but at the brink of the next. I think back on the days when I struggled to get from one side of the room to the next or out of a chair. I think back on the excruciating pain and humiliating muscle spasms. I think back on the fear. I think back with overwhelming gratitude for where I am now.

As I write this, the pain is more bearable. It’s most certainly not gone but it’s more tolerable. The spasms and cramping are minimal. I go days – even weeks – without using my scooter. Yes! It is remarkable. I can think of no better way to describe where I am at this moment than the word miraculous.

My latest neurology appointment included another Electromyography (EMG) – nerve and muscle testing – to ensure that what is now diagnosed as upper motor neurone disease has not spread to involve the lower motor neurons. Much to our relief, that EMG was normal.

You might wonder – as I did – how these neurologists honed in on upper motor neurone disease. It’s the spasticity and rigidity of my muscles but also, my reflexes. Throughout this journey, my reflexes have been described as brisk. Now, they’re abnormally so. My neurologists explained that I also have reflex spread, which means neighboring reflexes are reacting to testing during my neurological examinations.

I’m also responding positively to the medication. I’m taking baclofen, which is used to relax the muscles, relieve pain and improve movement. I’m also using CBD at night. I’ve overhauled my life.  I’m resting much more and quite honestly, I’m thoroughly enjoying this gift as I don’t know whether it is fleeting or lasting.

I’m spending my days making up for lost time, for all of the moments and milestones I missed during my living death experience. I’m relishing every second. There were so many times when I was utterly without hope. It would have meant the world to me to read these words written by someone else.

So, I hope that by sharing I offer someone else, someone in their darkest of moments… a glimmer of hope. And I thank you. I thank you for your thoughts, your prayers, your support over the past decade… and I hope that you too experience (and recognize!) miracles in your life.