100 days to share 100 stories.
100 days to tell the world.
100 days to spread hope.
Fight rare neuro-immune disorders. Together.
It was January 19, 2016; 227 days from our wedding date, 111 days before his 48th birthday, 134 days prior to our next big adventure tackling the Caucasus Mountains in Russia, a day that should have been just another Tuesday in the life of my active, healthy, never stand-still husband.
Extreme and persistent neck pain was his first complaint, which was quickly followed by his right hand starting to go numb. As medical professionals, we both thought he might be having a stroke. After quickly dressing and individually hugging our three children and telling them he loved them we were on our way to our local ER, this time not as a physician and nurse, but as a patient and his shell-shocked wife.
From the onset of symptoms to total left-sided paralysis and extreme weakness of the right, it was less than six hours. The physicians, nurses and staff that usually worked side-by-side with my counter jumping husband were as dumb-founded and concerned as we were. Emotions were running high. The initial diagnosis in our local facility was Guillain-Barré. The initial diagnosis by his neurologist after being transferred by Life Flight to his home-town hospital was a complex migraine, which we really hoped was accurate. The next morning, after receiving a catheter because of the inability to urinate and his fifth MRI, those hopes ran out and we were given a diagnosis: Longitudinally Extensive Transverse Myelitis from C2-C6.
Telling our children, then ages 15, 14, and 12, that their dad may never walk again, may get worse, may die; these moments change you as a person, as a parent, as a family. Greg spent six days in the hospital and received steroids as well as physical and occupational therapy. He walked again for the first time after three days, he never stopped moving and working. He was then transferred to an amazing rehabilitation facility where he spent the next three weeks continuing to work harder than anyone I know. Learning to walk, learning to get dressed, learning to do the things that we all take for granted every day.
As I write this “story”, Greg’s story, I feel that we have nothing to complain about. Greg missed very few shifts working in two busy emergency rooms, he came home without any assistive devices, he quickly melted back into our everyday existence and people stopped asking him if he was now “100%.” But for anyone who has, or loves someone who has transverse myelitis, we know that 100% is not an accurate assessment.
I hope that one day my husband will walk around out in the country without having to “think about” every step that he takes, that showering won’t feel like being snapped repeatedly with a rubber band, that his right leg won’t feel like he is standing too close to the fire and his right arm like he has it submerged into a tub full of ice water, that he will no longer question his ability to do all the things that he loves. I hope that all of his hard work and determination will result in the inaccurate 100% that people assume, I hope.
Bralli Clifford, RN
MEET OUR OTHER HOPE AMBASSADORS
SUBSCRIBE TO MEET TOMORROW’S HOPE AMBASSADOR