The number nine is not a big number until you attach its detail; 9 years equals 3,288 days. Each year as this day approaches, I go back and reread the anniversary posts chronicled within our blog. It’s a valuable exercise for perspective. Our daily focus is on Corey’s physical and cognitive exercises and I often get through our day with virtual blinders on. When I take time to reflect, I’m continually surprised at how many calendar pages have turned without my noticing? The updates highlight Corey’s accomplishments and remind me of what it took to get to this day.
A few weeks ago, Corey achieved another first; riding a trike, unassisted, on the New Jersey boardwalk. It was a moment I captured on video and shared on social media. For her, it was the first moment she felt independent since her accident in 2010. For me, it was a moment of joy, pride, awe and rejuvenated hope. What was not captured were all the moments we; Corey, Caitlin and I, literally fight through when no one is watching.
In February, I noticed Corey’s left foot was stiffening. She’s worn a hard brace since the accident that has progressed over the years to bend at the ankle, yet she walks without flexing it. I could no longer stretch her foot to a neutral position. Unfortunately, insurance is still our nemesis. Two evaluations from two separate facilities were both unwilling to admit her for continued rehab to help correct or prevent further drop foot. One doctor told us she didn’t qualify because her walking wasn’t ‘that bad’. At the second appointment, I explained the difficulty we’ve had in finding NEURO trained physical therapists outside the acute care rehabs. The second Doctor offhandedly commented, “in the beginning, it’s natural to seek ‘the best facilities’; but at this stage, maybe OK is good enough?” For those of you following Corey’s story for the last 9 years, you all know how well I received that answer!
In March, her orthopedic surgeon suggested and approved her standing barefoot without her brace; ‘allowing gravity to help’.
In April, using our house harness multiple times per day, she began standing for 2-5 minutes which eventually led to taking a few steps without wearing the brace.
In May, Corey was out of the brace every other day, learning to walk in a sneaker.
In June, she was out of her brace full time. Although the overall progress she achieved in strength, distance and stamina declined, what she was regaining was astounding to watch. She was developing control of her hip, leg and foot. Her ankle was not rolling inward, her steps were fewer but more deliberate, her leg was not turning purple because her muscles were helping to pump and redirect the blood flow.
In July, she increased her walking distance from 5 feet to 50 feet.
In August, when asked to lift her toes upward, despite a 30 second delay to fire the movement, she lifted her foot and moved her toes; she has not moved her toes on that foot prior to that moment.
After Corey’s ride in September, I asked her opinion of her progress. She told me, “I hate my wheelchair because you have to push me and people stare at me.” I asked her how it felt with Caitlin and me holding her gait belt as she walks with her cane. She said, “That’s ok because at least I’m walking.” I pressed on, “and riding the bike?” Without hesitation she stated, “That’s when I can be like everyone else.”
There are many facets to living with traumatic brain injury; physical, mental and emotional. TBI affects not only the person but their families as well. The daily moments no one sees are very hard. There have been millions. They can wear us down and mask our perspectives; sabotaging our motivation and resilience. The physical limitations and struggle to find continuity of professional care is a constant battle. The loss of friends and ability to participate in social activities is hard to grieve. These invisible moments; year after year, are the most challenging at this stage of Life-care.
Not to put a Hollywood spin on our video, but go back now and re-watch that ‘moment’ in time.
Look at Corey’s left ankle flexing and recall that we were told it was OK to stay locked in her brace. Look at her smile and confidence as she rediscovered that she can be independent. Corey’s achievement is the culmination of all those moments no one sees. Watching her ride to regain her quality of life (and continue to prove the Doctors wrong) reminds us of what we can do if we keep working and fighting to turn the pages on the calendar…Never Give Up and Never Give In, xoxo