Of course the last real day of vacation would save the best experience for last. I got to spend the afternoon in the spinal cord injury rehab gym at Santa Clara Valley Medical Center with Kathy Kobayashi, an Occupational Therapist who helped my good friend Ian Mackay during his inpatient stay there almost 6 years ago. I brought a handful of my water bottles for them to pass out and filled them in on our goals for the Here and Now Project. After a tour of the facilities, Kathy took me up to the acute floor to meet some newly injured patients.
The first was a man in his early 50s who was exactly one week out from his injury. I rolled into his room, knowing there was absolutely nothing I could say to relieve the stress, pain and grief for him or his family members, who sat in the corner with their eyes shrink-wrapped in tears. Mostly I just listened, because I remember being there. I remember being disoriented and scared. It felt like every one of my dreams for the future was disappearing as fast as I could think them up, the pain of what I seemed to have lost far outweighing that of my broken bones and torn muscles.
Another was young man who was paralyzed in January. Today he was taken off of the ventilator for good, a piece of gauze and a compression bandage covering his tracheostomy hole where the air tubes had once helped him breathe. He talked about the creepy sensation of cold air rushing out of his neck pushing at the edges of the bandage until it almost comes up. I remember being there, too. Not sure if I really could breathe on my own without the machine I had relied on for oxygen every day for the previous two months. Terrified of being discharged into a world that no longer seemed built for me with a body I couldn’t control.
I couldn’t tell either of those men that the very little arm motion they have even at this early stage is light-years away from what I have; that they’ll be able to scratch their noses, feed themselves and even drive a car. I couldn’t tell them that there is still a full spectrum of life out there to be lived — Sports, Weddings, Even laughs — because the only thing they can see is all that they’ve lost. It’s all I could see when I was there. All I could say was that I’ve been there and it gets better. All I could do is give them my number and tell them I’ll wait for their call.
It’s hard to know how far you’ve come until you return to where you’ve been. It’s really amazing to think about how far I’ve come in a little more than a decade. From a justifiably depressed complete shut-in, to a road warrior in progress with a renewed sense of purpose and passion for life. I can only say a huge, heartfelt thank you to everyone who has helped me along on this road trip, as well as my entire journey. We sure have come a long way.
Thanjs for sharing your journey with those men, and us!
Of course, that was something I shared last Saturday, was Bruce remembering when I was “showing off ” by moving my index finger on my left hand, while moths later, Kenny got stop by with a milkshake the day I first transferred from wheelchair to therapy table, and after a few tries, got legs up with some leg management by my arms video’d on my cell phone and later put on UTube where you can hear Kenny’s calm encouraging voice saying something like, dude that’s huge, as I am finally able to get right arm to push me up into sitting position on the table after a couple of tries, he was here and now for me in that moment, and continues to be a resource with the “Here and Now Project” to address many needs still not met by ADA, it is my hope that Kenny to will benefit all of us with his amazing upbeat attitude and demeanor as he works his way through life and it’s challenges.
Thank you Kenny!
Being a fan and avid reader from the very beginning, I agree, you sure have come a long way… sometimes it takes a trip back in time as you just did to realize that yourself. Although my legs still work, however clumsy and tripping over myself I can be and the ‘young’ age of fifty something… there have been times I think of you when I am overwhelmed and feel like I am at the end of my wits and how much easier it would be to just jump off Niagara Falls…and then you pop up in my email and I see how blessed I am… I think you are an inspiration for many people in the world and I wish you all the success in the world with the Here and Now Project… and if you do ever get all the way to the “the other side” and hit Buffalo, Niagara Falls region… You have a friend who will give you the fifty cent tour and a nice Kielbasa and pierogi Polish dinner.
Sending a hug.
Kenny, I have followed your blogs for several years. You are a blessing, not just to your immediate circle, but to legions of us who are desperate for hope!
My son was paralyzed as the victim of an assault 7 years ago. We sat at his bedside, terrified at the prospect of a bleak future. Thank you for the encouragement you share. Jay regained use of his legs but his strong arms withered. He lost a career, but not his loyal friends. Like yours, they included him in all the joy and mischief they’d always shared. We all were so grateful!
We lost Jay in 2011, but his friends have continued to treat us as family. We have been to weddings and graduations, housewarmings and christenings. Jay is always there too, in our hearts. You feel like a son to me too, and I’m so glad you have such joy and purpose in your life with your Here and Now foundation!
Love you, buddy. Safe trip home.
Kenny, amazing insight as always. You have a unique ability to show the world through your eyes. Thank you for that.