1:00 am

While Max was here last night, I was completely focused on her, but now that she’s gone, I find my attention drifting more and more to the exoskeleton. Although Sebastian usually responds in a timely manner, he still hasn’t gotten back to me. It’s taking every bit of my self-discipline not to pick up the phone and call him right now. I’ve been staring at the exo for over an hour, but I don’t dare turn it on or try to take it apart without a spec in hand. I wonder if this contraption will lead to anything, or if it will be just another false hope.

I’m not even sure how it will work. Will the cervo-motors do all the work? Or will the leg pads relay the nerve impulses to the leg muscles, with the cervo-motors providing some additional force? Is there a feedback loop? Will I be able to feel anything, or will I be moving in a fog? Will I be able to move at all? Or will the exo be nothing more than glorified leg braces? I’ve certainly had some not so memorable experiences with those.

I didn’t have any false expectations about what leg braces could do for me, but Bling and I decided to try them anyway, with the hope that I might be able to stand on my own and maybe reach a few things in an upper cupboard. In the back of my mind, I also had the small hope that if things went well, I might be able to ‘walk’ for short distances with crutches or a walker. We investigated several models and in the process, I learned everything I would ever want to know about the wonderful world or orthotics, otherwise known as leg braces. KAFOs, HKAFOs, donning, doffing, ambulation, swing to gait, swing through gait, you almost have to learn a whole new language just to understand what you are doing.

We started with KAFOs (Knee Ankle Foot Orthotics). I have no quadriceps strength at all, so I rely on them to prevent my knees from buckling. We had them custom made of molded plastic with a locking hinge at the knee. As well as supporting my knees, they also supported my feet, ankles, calves and thighs. They are relatively easy to don and doff (i.e. put on and take off, gotta love medical terminology!) and I’m able to stand in them with Bling’s assistance. In theory, with the braces on and with a pair of crutches for support, I should be able to ‘walk’ by using my upper body strength to pull my legs along. It’s called a swing through gait, but for me, it was more like a drag through or a standstill gait. I spent dozens of excruciating hours practicing at the parallel bars, but I was never able to develop sufficient balance or hip stability to move more than a couple of feet.

We even tried HKAFOs, hoping that they would give me a little more stability. They have a locking mechanism at the hip joint that helped keep me upright. Problem was, they were hell to put on and take off, and they also weighed a ton more. Despite my upper body strength, I found that moving one hundred and eighty pounds of mostly inert body weight, with another twenty to forty pounds of braces thrown in for good measure, was next to impossible. The worst drawback, though, was the loss of control once the locking mechanism at the hip joint was set. To be able sit down again, I had to manually release the lock, but I needed both hands to maintain my balance at the bars. If I let go for even a second, I’d be on the floor. I know because I practiced that a few times, too. If you want to trigger my fear of heights, just put me in a pair of leg braces, stand me up between a couple of parallel bars, lock the hip joint and let go. It feels like I’ve been placed on a cliff that is about to collapse under me at any moment. I think Bling instinctively understood this because he never once moved more than a few inches away from me once he got me standing. Needless to say, I was never able to progress as far as walking with crutches, or even with a walker, for that matter.

Bling told me point blank that I had gone as far as I could. But despite my mounting frustration, I dug in my heels and told him I didn’t care how hard I had to work, I was going to make it happen. He countered by telling me that I could find countless other activities that would be a more effective use of my time. Now that I think about it, that was about the time he showed up with the basketball. He was right of course. If I’m going to be sore and exhausted all the time, it might as well be as a result of eight hours a day of hard driving basketball rather than from wasting my time trying to drag my useless legs a few inches along the parallel bars. We got rid of the bars the moment we decided it wasn’t worth it to continue to attempt walking. I definitely didn’t need another reminder of my failures hanging around.

Despite my failure with the braces, Bling is still determined to get me vertical every day.

"Weight bearing exercise improves circulation and helps prevent osteoporosis," he’s repeated more times than I can remember. Eventually, we devised a simple program that works for me. We kept the KAFOs and the rest we do ourselves. I place my hands on Bling’s shoulders. Then he wraps his arms around my waist and stands me up. He provides lateral support by blocking my feet with his. When I shift my weight, I can feel Bling compensating for my instability. Surprisingly, standing up this way feels perfectly secure. Even though Bling provides much less rigid support than some of the heavier braces do, I have a greater sense of control. With his support, I’m able to stand for a few minutes at a time. Given my height, another therapist probably wouldn’t be able to do this. This is just another instance where his strength has been a godsend to me.

"You’re in training for the cure, man. When it comes, you need to be ready." It’s his latest mantra. He is still absolutely determined that I will walk again. Looks like it might become a possibility sooner than expected. That’s if Sebastian ever gets back to me with the spec!

8:00 am

Sebastian finally called at 2:30am. I hadn’t even told him that I had an exoskeleton in my possession, but he knew exactly where I was heading with this.

"Got your spec," he said with a grin, and as much amusement as his voice synthesizer allows, when I flicked on the videophone after barely half a ring.

"Logan, do you have any idea how this technology was developed?" He asked with uncharacteristic intensity. When I told him I didn’t have a clue, he gave me an explanation that brought the idea of walking again firmly into the realm of possibility.

"It’s an extension of functional electrical stimulation technology (FES) that was developed at the end of the twentieth century. It was originally designed as a rehab tool for spinal cord injuries. It is based on the concept that electrical stimulation can be used to trigger contractions in paralyzed muscles, thereby increasing muscle size and strength. FES systems can range from a few electrodes that target one muscle at a time, to sophisticated systems that simulate pedaling a bicycle or even walking. In the early part of the century, FES bicycles were a regular component of rehab programs for paraplegics and quadriplegics. They were used mostly for cardiovascular exercise and for the added benefit of increased muscle mass. Bicycle systems were relatively simple to develop, but ambulation was a more complex process. Never made it past the prototype stage. Then the military got wind of it and combined it with cervo-motor technology in a format intended for able-bodied users on a battlefield. The FES component increases muscle effectiveness and the cervo-motors kick in with additional ‘oomph’, creating significant increases in strength. Sadly, once the technology came under the military umbrella, it became ‘classified’ and is no longer available to the general public."

When Sebastian mentioned FES, he definitely got my attention. Bling had spent considerable time last year describing its benefits to me. He had even embarked on a quest to purchase a simple FES system for my use. He spent the better part of the year tracking down leads. Yet even with my cash and his contacts in the rehab community, we were not able to find a functioning FES system anywhere near Seattle. We thought the obstacles were a result of our ravaged economy, but now I have a greater understanding of why his efforts led nowhere.

"Any chance you’ve got one of these things tucked into your back pocket?" Sebastian asked with a sly grin. When my silence confirmed his suspicions, the grin disappeared and he became instantly serious.

"So, lets get you on your feet," he said with determination.

We spent the whole night studying the exoskeleton, trying to get an understanding of the complex interrelationship between the FES and cervo-motor technology. I think we finally succeeded in mapping out its circuitry. Sebastian decided to call it quits a few minutes ago, pointing out that we probably shouldn’t attempt any repairs at the end of a long sleepless night. This may be the only exoskeleton we ever gain access to. I had to reluctantly agree, even though sleep is the farthest thing from my mind at the moment.

It’s only been a few weeks since I was up and walking, and I still remember exactly what it feels like. Prior to Max’s transfusion, I had begun to forget what it was like to stand and walk. Though I consciously resisted it, my subconscious understood that I couldn’t walk anymore. By then, the chair was always in my dreams. Even when I dreamt I was dancing with Max, it was still in the background, reminding me that our dance was just a dream. That was probably why my first attempt to stand up was such I failure. I had forgotten what it took to stand and walk. But now my body remembers and so does my brain. My whole being is craving the opportunity to walk again. When I dream now, I’m always walking. There is no chair in sight. And it’s not an ethereal fantasy dance. I’m just living my life, getting up in the morning and feeling the cool floor under my feet, stepping off a curb and walking across a street, or climbing a flight of stairs. It feels perfectly natural and absolutely real. Then I wake up and realize it’s not real after all. During those first few waking moments, all my desperation comes flooding back and I can understand why I almost gave up on my life. Although I am not about to give up now, I am willing to do almost anything for the opportunity to walk again. I’ve even considered pulling out the parallel bars and giving the leg braces another try. I’m grateful that a more practical solution has presented itself.

I know the exoskeleton won’t come close to recreating those fleeting days of complete freedom I enjoyed just a month ago, but if it functions at all, it will be more than what I’ve got now. At least I have retained one residual benefit from my week in hell. Although my spinal chord disintegrated rapidly, the atrophy in my leg muscles seems to be progressing at a more normal rate. With the work Bling and I have been doing, we’ve managed to slow down the process even further and retained most of the muscle mass that was regenerated by the pluripotents. I’ve probably lost only about ten percent of my total muscle mass, which is excellent compared to the fifty percent or more that most paraplegics lose. If the exoskeleton does have an active FES component, I may even be able to gain that back. Now that’s something I can sleep on.