“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.
6 thoughts on “From Misery… to Miraculous”
Crying happy tears for you my beautiful, resilient cousin. NO ONE deserved this miracle more than you (and your fam bam) and reading this is the best way to start 2023 ❤️😘🎆✨ Hope to see you all soon ~ love you 🥰
That means more to me than you could ever know! Thank you.
Oh Naomiâ¦this is wonderful news; brings tears to my eyes. Your strength is beyond remarkable. Thank you so much for sharing this.
Warmest new year wishes to you and your family.
Looking forward to seeing you soon.
Elizabeth M. Pace, MSM, RN, CEAP, FAAN
Chief Executive Officer
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Happy New Year, Elizabeth! You touched my heart beyond measure! Thank you.
My hope for you, in the year of 2023, that you be blessed with continued strength, in body, mind, and spirit. I will keep you and Tom, and the girls, in my thoughts daily, You look so beautiful in this miraculous update!! Love from OK ❤
Wishing the same blessings for you, my dear cousin! Thank you a million times over for your love and support!