Dreams of The Future & Ghosts of The Past

It is just shy of two months since I received my first injection of stem cells taken from my bone marrow and body fat tissue. It has gone by in a blur and part of why I've not posted an update. I work out either at the gym or physical therapy every other day and sleep a lot in between. When I write I like to have a substantial bit of news to share. So here I am with the latest.

In 19 years it has never ceased to amaze me how much behavioral psychology is at play around Spinal Cord Injury. There are always the personal, day-to-day battles with victories and losses a person in a chair faces just living life, but one of the greatest obstacles toward complete recovery from a spinal cord injury is often the sluggish and competitive community surrounding it. This community of patients, doctors, therapists, trainers, caregivers and family make up a fraction of the global health care landscape, but the trickle down effect of the recent trend in medicine to be the first across the finish line has had enormous implications. Everyone is vying for being the best treatment, most effective technology, the accurate results and the one to hold the trademark that the motivation for saving lives and truly finding a cure has taken a backseat to this materialistic ideal of "Look at me and what I did." The ones needing the cure aren't helping either. Quads are jealous of Paras cause they're more independent... the Paras are pissed caused Quads get more attention... the men resent the women cause they can get a date easier and the women are sad because men can catheterize themselves safer. You think I'm kidding, I wish I was. I've received messages from spinal cord injured people telling me I was wrong to get stem cell treatment because I might be disappointed! My all-time favorite line is when anyone, be they an industry professional or fellow spinal cord injury, says to me "I just don't think it's a good idea cause I don't want you to get hurt." Would someone please tell me how as a society did we become so passive-aggressive then have the unmitigated gall to pat ourselves on the back and call it compassion? At the risk of this post turning into a rant let me explain why I bring this up.

In order for healing of any kind to take place whether it is mental, emotional or physical it requires an environment. Think about disease, it festers in a climate suitable for its gestation. Health is no different. Why do we wash our clothes, vacuum our floors, bathe daily and brush our teeth? We want to create a healthy place for life to flourish. The ultimate environment for anyone to make any headway in the face of spinal cord injury whether they have received stem cells, any other radically progressive treatment or not any at all there must be an equilibrium. Yes, a healthy skepticism can be a valuable thing as long as it fosters research and an honest exchange of information, but once we lose sight of the ultimate goal and the needs of those who have been injured to make a full recovery we negate any chances of true progress. I bring this to light today because we need to get on with the business of healing. I need to get on with it and so do you. We have to create a climate for a cure. To those of us in chairs I am putting out a call... to cut the crap. Yes, being paralyzed really, REALLY sucks. It hurts and affects every single area of our lives, but we're not alone. There's not one spinal cord injury on this planet, there are thousands. All suffering the same fears and dreaming the same dreams. Someone may have more or less than you, but we all want to walk again. We may not all achieve it the same way, but who are we to dare criticize a fellow survivor for how they choose to reach that goal? To the doctors, trainers, and therapists... I sure love you guys, and G-d knows we're grateful, but do us and everybody else a favor... get over yourselves. Just because you are doing research, helped someone in a chair learn to transfer themselves or got them to a certain level of independence does not mean you've solved the problem. Just because a task is easier doesn't make it better. Catheterizing is still catheterizing whether you do it on your own or someone does it for you. Learn to listen, really listen. You are an outsider, respect it. You will never be able to fully understand, so don't lull yourself into thinking you do. Finally, to all of us... whatever role you play in this quest... get on the same team. Support each other. If you want stem cells, get'em! If you just want to do therapy, do it! If you want to go holistic, vegan, Chinese herbal, shamanic, yoga, and get naked around a bonfire I say go for it and more power to you! We have to build the environment for a cure.

The cure. The cure is our mantra. The cure is the goal.

Whew... mouthful. Ok, speaking of heading towards the goal...

So exercise has been the name of the game so far. As I write this I have just returned from the gym. The initial changes I shared in my last posting have not worn off so we know it's not a placebo. Although, yes I'm man enough to admit my excitement plays into a lot of my motivation I have put extra effort into proving and testing new results as best I can before telling the world. So what is new thus far? Here's the list...
  • Early signs of bladder control and increased sensation
  • Body temperature going up naturally as a result of physical exertion
  • Muscle growth in the lower back
  • Slowly increasing core muscle control
  • Increased balance
  • Improving posture
  • Free-weight exercises at the gym are up 7 1/2 lbs
  • More resilient to the cold weather
Exciting stuff. Is all of it due to stem cells? Maybe, maybe not, the workouts have a lot to do with it, but they are helping. The new nerve activity seems to work from the core outward. Sensation in my lower trunk is changing, but has not reached the skin surface. At my last session of physical therapy I was able to contract the muscle in my torso that runs down my right side to my hip. This was a first.

While all this change sounds like a lot it comes incrementally and one can go for a few days where it seems you see nothing at all. It takes every ounce of self-control not to spend the whole day looking for something new and then when something new does happen keeping myself from questioning, over-analyzing and wondering if it was just me or was that legit results. It is a test of patience and I find the more I relax and stay consistent the legitimate results settle in and I work from them.

The support and love from family and friends has been fantastic, but sometimes even that can play with your head. When someone you saw just three days before says, "So, feeling anything new?" you know they care, but if you don't have a new report finding a justification and explanation can feel a bit uncomfortable if not downright embarrassing. It's been a real exercise in staying self-assured. However, when you do have a new report it's a moment of sweet victory that blesses everyone who hears it. Slowly the journey towards self-realization dissolves the ghosts of the past into oblivion and even though it's a long road I feel like a new man.

As a new man I am looking to the future and exploring possibilities I had not before considered. For a long time I've been a hobby gardener and student of sustainable technologies. My brother Ethan and I will be getting our Permaculture Design Certificate in 2014 along with studying biodynamic restorative agriculture here in New York next fall. In my journey towards physical health as a family we've become steadily more conscious of where our food comes from and what we put into our bodies. It has grown into a real passion and we will be moving towards a career in this field in the coming year. This amazing journey has inspired me to push the boundaries of what I thought was possible. So because it's all tied together prepare to hear more in the coming months.

As I sign off for this installment I want to thank you all for reading and sharing and commenting. It means so much to me and I hope my words encourage, inspire, maybe sting a little and teach. Together we can reach our dreams and together we can find a cure. 

Thank you all for your love and support, and thanks for reading.


  1. fantastic up-date, Caleb...every word...thanks for saying what many must feel...bravo...cheryl

  2. Caleb, this is such great news I can hardly handle it! I have to admit that I was worried about the possibility of placebo effect, but you have dispelled those worries quite soundly! Also I love that you guys are getting permaculture design certs. Permaculture is our focus here at Groundwell Farm, though we lack certification, and we are not only building our soil through these concepts but working on regenerating our immediately local community. I'd love to here more about that as well as about your progress and patience (patience of course being part of the progress!). Love you!

  3. Good to hear your thoughts. Ah the world of Permaculture, a very good direction to head. I just piled straw around some of my garden greens then put an old window pane on top, vola! greens for breakfast most of the winter. It is pretty mild here on the Cape so it works. Wish I liked turnip greens more, they are the MOST hearty! Blessing upon you, Shelly, your brother and his family. Jane


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