** After reading, for part 2 of this topic here
A while back our friends Peg & Ed, Jeanie, & I went to a very inspirational talk given by James Osbourne about his Will Your Way Back. He recalls experiences dealing with his tragic Spinal Cord Injury (SCI), reinventing his life through sheer determination and positive attitude. I bought his book and have been reading about his experiences has brought me back to mine.
I was so struck by the resemblance of my journey thus far. From the early days being in ICU, transitioning through acute rehab and endeavours of out-patient (OP) rehab were uncannily parallel. The part of the book discussing returning home, trying to get back to ‘normal’ life again really struck a chord with me. I too was so overwhelmed by every aspect and it took incredible effort to adjust. Thanks to love and everyone around me, I did get through it.
In contrast, James (he goes by ‘Jamie’) did experience far more pain than I during that time and sounds like to this day. My challenges centered around severe lack of motor function, balance, and noticeable decline of strength. One part of the book which he calls “the second crash”, he was surprised by his onset of spasticity as a major setback. It hit me early on at around six months. Mine did not come on as he likened it to someone “applying an emergency brake” while he was out for a walk. Mine was more gradual stiffness being mostly in my upper extremities and I didn’t notice it as much. I took many of the same drugs as he did. Like Jamie, I was determined to wean off of the Rx drugs. My stubbornness paid off and still today I take no such drugs, but do still rely on getting Botox in my arm to somewhat aid, but it’s only a band-aid.
If I think of other contrasts, our difference in experience was an SCI it sounds as if your condition is more lucid as your brain is less affected and much more aware of your condition, such as immediately knowing you’re paralyzed. Whereas a stroke your brain suffers cortical shock, whereby I recall feeling being in a haze, everything so surreal. Agnosia also sets in. I swore I was going to hop right out of the bed in the ICU and just walk out the door that afternoon being in complete denial.
Other resonating passages of his book deals with his reluctance of seeking mental health counseling early on, but in hindsight very much realizing its importance. To this day I’m confounded to why both the Hawaii IP & HMC’s OP programs didn’t include counseling until I pressed for it! For any survivor or caregiver reading this blog, it’s one of my best advice to seek as soon as you can.
Jamie provides much context of his life prior to his traumatic event, painting the picture of a determined and accomplished athlete. This is much of his secret of perpetual motivation to overcome recovery’s enormous challenges. I too was a natural athlete, excelling at most everything I put my mind & body to. I even have in common a few of the same sports like skiing, hiking, and especially cycling that Jamie too is so fond of. From day one, I envisioned therapy like any other ‘sport’ to learn. I constantly would self-compete and yearn to impress my practitioners. It’s just my nature. Over the last three years I’ve really struggled with motivation and other unforeseeable major factors like my onset of epilepsy. This is so not my nature, making it all the more difficult to reconcile with myself and others around me.
Jamie goes into the vital importance of aggressive therapy during very limited recovery windows of time so well in his book. I would give absolutely everything to go back in time being hindsight is 20/20. My various practitioners never stressed this to me early on and emphatically as James goes into experiencing. I have the impression he had a much more coordinated medical team driving to goal-based measured outcomes. Maybe it was our differences between an SCI and stroke, or differences in quality of medical care. Will never know.
His book contains solid wisdom I myself am very slowly starting to learn. That is slowing down, being more mindful. A lot to do with meditation, living in the moment, and feeling the interconnectedness of all life around us. My nature sounds to be like Jamie’s too being such a ‘doer’, rarely taking time to absorb the here & now. I’ve always been fixated about ‘getting my old life back’. It occurs to me you can’t really go back, you have to go forward. He quotes from a book, Full Catastrophe Living that also very much resonated with me going into the idea of altering your symptoms and healing by changing the way your mind is behaving to live in the moment. I plan to read it when I get a chance.
Thank you James for your book and what seems like a kinship among survivors. Moving through such monumentally difficult forever life-changing events is something that is incredible, if not possible to portray to others. James does a pretty darn good job of doing so.
James & I are so alike in our personality and life experiences. Meeting and talking with he and his wife, Diane after his talk she mentioned the four of us getting together for dinner sometime. I hope we can make it happen.
Check out his site here.
** part 2 of this topic here