BruceBlog

Earlier this year in April, I reached five years since my spinal cord injury. Although this anniversary passed nearly unnoticed by many people around me, the value of what I have experienced in these five years still weighs heavy on me most days.

Back in April, I thought about writing this post, but I passed over it for some reason I can no longer recall. Most of the time I live my life in the new ways to which I have become accustomed and I'm able to deal rationally with most things that come up. But a couple weeks ago, I was driving to a hiking spot in Boulder County and I came across a cycling event. As I saw more and more riders it really threw me for a loop emotionally and I was so overcome I had to pull over. I see individual riders all over Boulder County all the time and I'm fine with that. I have accepted the fact that I cannot cycle the way I used to do so often. But I guess seeing all the people riding together for an event was a strong reminder of something I used to love and I still really miss. Anyway, this experience got me thinking and I figured I should write up something about the fifth year anniversary of my injuries because it's still very much always in the background (and sometimes the foreground) of my life.

Experiencing such traumatic injuries and going through the recovery was a profound experience for me physically, mentally and emotionally. As I just described above, there are still some life changes that get to me. There are big physical things like cycling events and even little physical things like the difficulty (or impossibility) of getting down on the floor to play with our puppies. Such physical limitations are something that I've learned to deal with the most. It's the mental and emotional stuff that still creeps up and surprises me from time-to-time.

Gratitude

As I have stated in a previous post, I still experience a tremendous amount of gratitude for the people in my life and for the experience that I've been through. Without going through something like this, it's difficult to understand what I mean. But recently I was reminded of it again by my fellow paraplegic friend John.

John and I meet up periodically since his own injury in 2017, but this time was a bit different. It was right before July 4th when he and I last hung out. John is doing amazingly well adjusting to life in a wheel chair. At one point, John paused to look me in the eye in a way that he never has. He then thanked me for something that I offered him early in his experience that he said he still holds to this day and it gets him through many daily difficulties. What I offered him was a statement that I learned from my wife Janene and that is, 'fake it 'til you make it.' He said that he didn't understand the value of this statement at the time, but since then he has grabbed ahold of it as a sort of mantra to move forward in his recovery and his life. I was quite touched that it has worked as well for him as it has for me.

In the last couple years, I have a newfound enjoyment in hiking. Although I cannot hike trails the way I used to (I used to run them!), I still get a lot of enjoyment out of the challenge of a trail and from being outside. I also find the solitude of hiking very comforting and I even seek out trails that are less busy for this reason. I used to say that cycling and running were both a form of meditation for me and now I've found that hiking can be the same for me.

But, overall, I think most about the positivity and support I continue to receive from family and friends. Without this, I would not be where I am today. I feel very fortunate to have so many people supporting me.

Improvements and Acceptance

So much of what drives me forward are the small gains that my body has made over the last five years. My nerve pain has improved dramatically over time, but it is by no means gone. The strength in my lower body has also improved dramatically over time, but by no means is my body at 100%. Such improvements and the positivity of the people around me are the hope that keeps me moving forward. But I have also had to face the fact that my body will never be the same.

Acknowledgement and acceptance are two related but very different concepts. Acknowledgement of my limitations is important, especially when it comes to gauging improvements on a day-to-day, week-to-week, month-to-month and even year-to-year basis. But acceptance of my limitations is a whole different level. While I have certainly accepted my injuries, what is not so easy to accept is some level of permanence of these injuries. This is a complex issue that has taken me quite a while to tease apart.

While I acknowledge the injuries to my body and I accept the fact that they happened, it is still difficult to accept the severity of these injuries as permanent. Consider a bone fracture. Relatively speaking, under optimal conditions, bone fractures do heal over time. However, healing a bone fracture oftentimes means immobilizing the joints around the bone fracture. The result of such immobilization is that the soft tissues around the fracture (e.g., ligaments, muscles, nerves, tendons, etc.) wind up experiencing damage due to the immobilization that lasts much longer beyond the healing of the original bone fracture. This soft tissue damage is a side effect to the actual injury, but it is the side effects that require prolonged physical therapy and hard work to overcome. It is these side effects that I am still dealing with today. Having spent two weeks lying in a bed in the ICU and then nine months in a wheel chair really took its toll on my body.

When movement begins to appear with a muscle for me, it doesn't mean that I can suddenly shed my leg braces and run down the street. It means that you can just barely see a flicker of movement in a muscle and it takes all the effort that I can possibly muster toward that muscle. Once this very minor movement begins to appear, the real battle is against the muscle atrophy and this is very, very difficult to overcome. It feels like no progress is being made and really requires a lot of mental focus not to be outdone by my own pessimism. Because such recovery requires a tremendous amount of consistent and diligent work over a long period of time, many people give up pretty quickly. I know I certainly have times where I feel like giving up. But I also know that the reward of regaining movement will not be affected by what I do on any given day, but is mainly affected by my long-term, consistent habits over time. In other words, it's about the long-term trend of the improvement. So, I keep telling myself that this is a marathon, not a sprint. I do my best to keep faith in the choices I make regarding my physical therapy, knowing that it's only going to make a difference over time. Much easier said than done.

Change is Constant

After about a year-and-a-half of wearing my old carbon fiber AFO braces (Ankle and Foot Orthoses), I recently got a new pair of Phat Braces which are also made of carbon fiber, but have a much better warranty and are widely used by people everywhere.  The big difference between my old braces and the new Phat Braces is that the Phat Braces are taller and stiffer (but they are beginning to soften a bit). They come up my leg to right below my knee which is further than my old braces . This makes them much more stable and it which allows me to balance and walk much easier. They also have some flexible plastic that wraps around the foot (as you can see in the image to the right) which also helps to provide more stability. The biggest benefit about them so far, however, is that it did not take my body six weeks to adjust to them. The previous braces actually took six weeks for my body to adjust and I was in pain the entire time. The company that provided them told me that's just how it goes. Through that adjustment period, I had to have at least a dozen manual adjustments to the carbon fiber (e.g., heat them up, bend out here and there, etc.), probably closer to 18 or so. With the new Phat Braces, I've only had two adjustments and my body has already adjusted to them -- literally less than a week. In fact, I have had the Phat Braces two weeks now and yesterday I did my first true Colorado hike since my injury in April 2014!

Monday, April 24th marked the third anniversary of my spinal cord injury. It seems like the injury took place so long ago now and yet it has only been three years. So much has happened in my family's life in the last three years. I now have a 19-year-old who is about ready to complete her first year of college and a 14-year-old who is getting ready to enter high school in August. Through all of these experiences along this journey, I now feel like I am emerging from the other side. I believe that I have finally found peace with this whole ordeal. It has not been easy to get to this point and it's difficult to convey how hard-fought my successes continue to be. But those closest to me know, and that's what matters to me.

Gratitude

As I look back at all the photos and videos Janene has taken over this three year period, read through the Caring Bridge posts and my blog posts, the progress I have made is pretty amazing to me. Believe it or not, I actually have a lot of gratitude for the fact that this experience happened to me. Yes, I just said that I am thankful for the experience. I did not arrive at this place easily or lightly, so stop and consider that statement for a moment. After three years of pondering every aspect of this entire situation, I feel that I am a better person for it in many ways. This whole experience forced me to get myself in order and I'm now a better person for it.

From the beginning of this experience three years ago, I have been lucky enough to be surrounded by people who provided me a constant stream of positive support. From the folks I worked with at the hospitals to all of my family, friends and co-workers, the positive vibes are what have inspired me to keep going. There were also a couple of notable things that two people told me that I have hung on to that have kept me going to this day:

• My wife Janene has always taught our girls that no matter what you're doing in life, you need to 'fake it 'til you make it'. This catchphrase helps you to feel confident and optimistic about something until you gain the necessary experience to actually feel genuinely assured that you have reached a successful point. Although she has always intended this for the benefit of our daughters, I have been able to internalize it and use it to my own benefit in my recovery. Repeating this statement in my head has taken me quite far and I continue to use it to this day. Thank you so much, Janene. I love you!

• My friend Greg, who has had two spinal cord injuries in his life (can you believe that?!), told me something very early on in my journey, that I held in my head to help me get through the first year and beyond. He said something like, 'I know you you are not in a place where you can understand what this means yet, but you will get there in time. Just do everything you can to make it through the first year and everything will seem 1000% better. You won't be totally healed in one year, but you will feel much, much better.' Ironically, I saw Greg the week of my first year anniversary and I told him about this and he didn't even remember telling me this. I think he was quite surprised that I held on to it for so long, but it was truly a lifeline. Thank you, Greg.

Lesson Learned

I have learned a lot in three years as this experience has taught me a lot, especially the way that you handle an experience. Most importantly, I've learned that when you are faced with a horribly painful experience (emotionally, mentally, physically) that changes your life, you can choose to one of two paths:

1. Either, you can be angry, resistant, resentful and stuck on the fact that something was taken from you. I have met plenty of people on my journey who were here and until they change their outlook, they won't be able to move on.
2. Or, you can acknowledge that it sucks but still feel gratitude for the positive aspects and for being able to be alive to experience it all. I haven't met any people who can say that they feel thankful for their experience with a spinal cord injury, but I have read about some. It was not easy for me to get to this point.

And this certainly doesn't mean that I'm done. My recovery will continue for years.

On that note, singer-songwriter Ryan Adams who I have listened to for years summarizes my whole point best in the following interview:
He says it best by summarizing it this way: Pain helps us learn who we really are.

Reminders Along the Journey

Just recently, one of my colleagues from our Munich, Germany headquarters visited my office in Boulder. I have not seen this guy in person since before the accident so he was really shocked to see me walking and to see how well I am doing now. He said he was so surprised because the last he heard from me I was still in the wheelchair (the look on his face was priceless!). It's moments like this one that remind me of how far I've come and continue to drive me forward.

Thank you to everyone who has helped me in any way along this journey.

After nearly two years of no movement below my knees, I was pretty surprised to discover recently that there is movement in the achilles tendons on both my legs!

Back in late January, I went back to Craig Hospital for the annual re-evaluation of my spinal cord injury. During the four days of poking and probing my body, just like last year, they told me again, 'According to your internal organs, we can't tell that you have had a spinal cord injury.' This does not mean that I am unaffected, it means that I do not have the deterioration of internal organ function that they commonly see in the kidneys, liver, etc., etc. after such an injury. Many paraplegics are in a very bad way internally due to a whole host of issues that arise as side effects to the nerve damage. For example, I still have to deal with bladder and bowel issues from the nerve damage. These issues have improved significantly from the time of the injury nearly two years ago, but I am also lucky enough that my injuries were not as bad as they could have been. (I could go on an on about the degrees of damage here but I will spare you the details.)

There were two really positive discoveries during my re-evaluation, improvement in sensation and some new movement. The first discovery that I have much more sensation in my hamstrings, lower legs and feet than I realized. Nerves heal at such a slow rate that it's difficult to gauge the level of improvement on any given day. But if you have a baseline against which you can measure, then you can quantify the amount of improvement. I knew that the sensation had improved, but it was difficult to tell how much it had improved. Additionally, if you know anything about nerve sensation then you know that there are different flavors of it -- basically soft/light touch to heavy touch to sharp touch (and everything in between). Interestingly, damaged nerve sensation can go from numb at one end of the spectrum to hypersensitive at the other end. So they tested much of my body for nerve sensation and compared my current results to the results from one year ago as well as against the initial injury. The result was that the improvements were rather significant.

If you look at the two images above of the nerve dermatomes, pay attention to those from the waist down related to anything L3/L4 or below (the vertebrae in the lower spine including L3, L4, L5, S1, S2, S3, S4 and S5). Right now I'm dealing with sensation issues in my feet, lower legs, hamstrings, tailbone and crotch areas. The great thing is that my body is still healing and nobody knows how far it will go over time.

The second discovery was that the achilles tendons in both legs have some movement! There was just barely movement there, but it's movement nonetheless. It is very similar to the way that my butt/glutes returned. This new movement in my achilles tendons was such a minor amount of movement that I did not believe it at first. However, as my glutes have recovered and rebuilt, I have also learned that even minor movement can snowball over time into much more movement as the muscles are rebuilt. My glutes have largely returned, but they are still not 100% and won't be for some time, so I continue to work on rebuilding them. The same will be true for my calves. Right now my calves are basically gone due to the muscle atrophy. But, over time, I will enlist my calf muscles more and more and they will rebuild. In fact, in the 30 days or so since the movement in my achilles tendons was discovered, I can now feel that my calves are just beginning to engage. But only just beginning. It's going to take a lot more work over a long period of time before I can visibly produce dorsi- or plantar-flexion of my feet (which is driven by the calf muscles and the tibialis muscles).

As I have been telling everyone for the last year, in addition to waiting for my nerves to heal more, the big focus of my physical therapy has been fighting back against the severe amount of muscle atrophy that occurred as a result of my injuries and immobilization. It took me a while to realize that the muscle atrophy was something from which I could recover (as long as there was movement). At first, I was so weak from the immobilization after the emergency surgery and spending nine months in a wheelchair that I just assumed that the weakness was caused by and part of the paralysis. To a certain degree this was true, but what I have learned over time is that if I have movement I can rebuild the muscle. There is such a thing as having the movement return but perhaps not having 100% of the sensation return. Another positive thing is that I have experience dealing with muscle atrophy. Having dealt with it way back in high school with my first couple of knee injuries, I understand the dedication and hard work required to recover from muscle atrophy. It takes a lot of consistent, deliberate, difficult work to rebuild muscles that have shrank away. As many people have asked me, 'Are you still going to PT?' and my response is, 'PT is a way of life for me, it won't stop for years.'


Anyway, because the movement is starting to return, I was fitted for a new kind of braces (this is the third type of braces now). The type of braces I need are called ankle-foot orthotics or AFOs. The first type of AFOs I had were rigid hybrids comprised of aluminum struts with plastic foot and calf beds. The second type of AFOs I had were rigid plastic with some carbon fiber reinforcement around the ankles -- rigid meaning no flexion whatsoever. I am now on the third type of AFOs and these are known as dynamic response AFOs and they are made of carbon fiber.

See the image to the right and notice that there is only a thin strip of carbon fiber along the back of the achilles tendon area. This strip is flexible for two reasons:

1. To enlist the calf muscles in the stride
2. To rebound or spring back once it is loaded from the ankle flexion providing a more natural stride 

Just like the switch to the previous AFOs, these new AFOs changed my stride again. It's much more natural and I don't need to pick up my feet as much because my ankles are flexing naturally. The downside is that I am pretty damn wobbly right now due to my lack of calf or foot muscles, but this will improve over time. Also, my feet and lower legs are pretty sore from the new material (carbon fiber is not very forgiving -- I know this from owning several carbon fiber bikes). I have already had a couple of adjustments to them and I will need more. But it is also a matter of your body getting used them, kinda like a new pair of shoes but much worse. This will all improve over time.

Someday I will post all of the videos that Janene has made of me walking at the different stages throughout my recovery. It's pretty amazing to see the progress so far and I'm not even done yet. As I tell myself quite often, never give up.

Also, if you look closely you will see some little dots in between the L3 and L4 vertebrae. This is a plastic spacer and the dots are metal so it will show up in an x-ray. It's typical for the surgeon to insert a spacer in between the vertebrae in place of the disc that had to be removed (the disc was so badly damaged that they had to scrape it out). The spacer keeps the vertebrae the proper distance apart as the bone grows and fills in the space. According to the surgeon, the bone growth between the two vertebrae looks really good.

On April 24th, my family and I marked one year since my spinal cord injury and I was so totally shocked and very humbled by the surprise that Janene arranged for me. What an amazing wife!

We had made plans to go to a friend's birthday party at a place here in town. That afternoon my youngest daughter had a track meet and afterward I had to pick up my oldest daughter from her school in Boulder. These activities kept me busy until just after 6pm when I showed up at the location for our friend's birthday party.

As I crutched to the door and opened it, I saw my youngest daughter holding a big sign for and a huge crowd of our friends from the community screamed, 'Surprise!' It took me a second to realize that all of these people were here for me. I was so shocked by this thought that I almost lost it right there. Even now I get emotional thinking about it. I was so humbled that all of these friends showed up for me. I have been on the giving end of such support for others in the past, but I have never been on the receiving end.

It's hard for me to believe that it has been a whole year since this horrible accident took place. Early on, my good friend Greg, who has experienced two spinal cord injuries in his life, said to me:

'Just make it through the first year and everything will seem so much better.' 

He was right and this advice was poignant, though it took me a long time to really put it in perspective.

At the time, this seemed so far away that it was difficult to imagine. For a while, I even had this perception that I would actually return to what used to be normal for me. But, over the last year, I have come to realize that I need to get used to a new normal. The most difficult adjustment is my inability to run and cycle like I used to do so often.

Current Status

At this time, I am still paralyzed below the knees but I am hopeful that my body will continue to heal. I have so much more feeling in my feet after one year and I'm very hopeful that I will regain movement over time. Because of the paralysis, I wear leg braces to be able to stand and walk, and I also use arm crutches for balance. I am lucky enough that I can get around at home without using the crutches and at I have even started using only one crutch in places that are level and familiar to me.

Most people have no idea that a lower spinal cord injury like mine (L3-L4) often affects a patient's bowels and bladder function. Your digestion slows down due to the nerve damage and your ability to empty your bladder on your own can be affected. I still deal with some issues in both of these areas, but not to the extent that I did through the first eight months. I'm lucky that my body has healed the way it has and that there is medication to help things along otherwise.

For some time now, I have been riding a stationary bike, doing lots of leg presses and walking much longer distances. I still see a physical therapist, but only for guidance and direction. All of the PT related activities I do are driven by me alone. I have experienced the need for PT previously from knee injuries so I already understood how it important it is to have the drive to push forward on my own. Luckily, all of these activities have helped me to recover from a fair amount of the muscle atrophy that took place from being stuck in a hospital bed and a wheelchair early on. But I still have a long way to go.

Riding a Bicycle 

In addition to riding the stationary bike, Janene recently purchased me a 3-wheel bicycle. While it's not the same as riding a road bike or a mountain bike like I used to do, it is very similar and it allows me the freedom of being on a bicycle. Strangely, we had a difficult time finding a shop that was willing to assemble the bike for us. I guess lots of shops aren't familiar with them and each one can be so different that they cannot predict the time it will actually take. Luckily, the Bikesmith in Boulder came through and was happy to do the job.

While riding, I do have a hard time keeping my feet in the proper place on the pedals, so I am thinking about putting some toe clips on there. Also, the seat is not very comfortable on my sit bones due of the muscle atrophy in my butt. I'm also hunting for some other seats to help me tolerate not only sitting for a longer period of time but also the bumps on the streets.

As I mentioned it's not the same as riding my road bike and climbing steep mountain roads like I used to love doing so much, but it's the best thing I can do at this time. I'm so grateful that my wife is encouraging me to do something that I love, even if it isn't exactly the same as it was before.

(I wrote this post in early December, but I forgot to post it, so here it is!)

Halloween and Thanksgiving are standard American holidays and they are definitely a good way to mark the progress of my recovery. They seemed to so far away for so long and yet they flew right by this year.

When you have kids, Halloween is a pretty fun time for them. From picking out pumpkins, to carving jack-o-lanterns, to jumping into big piles of leaves, to various Halloween parties leading up to the evening of trick-or-treating. When my girls were younger, they would get so excited for Halloween. They loved picking pumpkins right out of a pumpkin patch and couldn't wait to carve them. We would get out Halloween decorations for the house and carve our pumpkins together. They would really get into it with elaborate designs that they would trace on the pumpkins and require some time investment to carve whereas I would always carve simple, silly faces on my pumpkin that took no time at all to complete, but would make everyone laugh. Well this was the first year where my kids were not into Halloween very much.

This year I was on my own to hand out candy to the trick-or-treaters. Janene was away on a business trip and both my girls were with their friends elsewhere in town. Although I've been mostly walking with the crutches at this point, any time I need to carry something I still need to sit down in the wheelchair to do so. It was too difficult for me to hold the door open to greet the trick-or-treaters while holding the big bowl of candy, so I sat in my wheelchair. It was still fun though because I was down low enough to see all the kids at their eye level and they instinctively helped to hold the door open as I put candy in their bags. Many of the kids know me from coaching soccer, volunteering at the elementary school, etc., so they talked to me about how my recovery is progressing. It was nice to see them all.

Janene's folks came into town for several days to celebrate Thanksgiving and it was nice to have some family around for a while. They participated in our Thanksgiving traditions of fixing a big meal, going to see a movie and playing games afterwards. We also took the girls to see The Nutcracker ballet in Denver (as we have done for many years now) and afterwards we had dinner at a wonderful sushi restaurant. They also helped us put up Xmas holiday decorations around the house including all the outdoor lights. Janene and I have always done this with the girls but there's no way that I can climb a ladder and be on the roof in my current state so Janene's dad helped with that part.

I continue with my recovery from the spinal cord injury. I continue to walk on a treadmill just about every day during the week because we have a couple in the fitness room I'm building at my work office. I've worked up to about 40 minute sessions walking at about 2.5 miles per hour. Although this is not much by normal standards, it is really helping my body to recover quite a lot.

I also I got a stationary bike recently so that I can ride it on a regular basis. It is already help to rebuild the muscles in my hips and butt. I'd love to just put one of my bikes on my trainer an spin like I used to do, but there's no way that I can sit on a regular road bike seat at this point. The stationary bike has a wider more padded seat that allows me to ride for about 20 minutes at a time with a small amount of tension. Although it's a very different ride, it still feels good to be pedaling again.

I continue with physical therapy appointments in Boulder twice a week. These sessions are important because my physical therapist shows me many exercises to do and is continually checking my progress, but most of the recovery is my responsibility. I have to keep doing the work every day and stay motivated to beat the muscle atrophy that has transformed my body so much. Because I have been through muscle atrophy almost 30 years ago when I had one of my knees reconstructed, I know what the hard work is all about. I also know that physical therapy is what can save you from a major injury. And so, I fight on.

Family Leaving 

Air Travel 

Driving 

Anyway, one thing that has really changed is the way I drive a car now. Being that I'm no longer driving my car and I still need to get a new one, in the meantime, we decided to have hand controls installed in Janene's car. When I was in the hospital I learned to drive with hand controls. After over 25 years of driving a car using the foot pedals for the accelerator and brakes, because I have no movement in my feet, I now have to use hand controls. It's a handle on the left side of the steering wheel and is easy to use, it just takes a bit to get your muscle memory to begin thinking in terms of the hand control vs. the foot pedals. Using the handle, you push to brake and pull down to accelerate -- it's really that simple. There's also a removable metal foot plate that keeps my feet from bumping the real accelerator and brake.

Since mid-July, I have been able to drive myself to work every day. The great thing about driving my wife's car is that it's Toyota Highlander, an SUV. This means that I can put my wheelchair in the back of the car without breaking it down (i.e., taking the wheels off of it, etc.). Because I'm lucky enough to be able to stand and I can now walk with the braces on my legs if I have something to lean on, I have taught myself to lift the wheelchair into the back of the car and then make my way along the driver's side by hanging onto the car and kinda shuffling along. It has been a liberating feeling to be capable of driving myself to work and running some errands around town.

The Fucking Health Insurance Industry

I know this is a bit off-topic, but it has been incredibly frustrating to navigate the insurance industry bullshit. In my life, I have been lucky enough to be a very healthy person and rarely ever needed to utilize my health insurance. Since this accident, I have been extremely grateful to have good health insurance. However, I have also discovered that there seems to be some super secret list of things that health insurance does not cover or that they are somehow required by some fucking insurance credo to give you a difficult time about. There's nothing quite like a hospital hounding you personally for a bill of nearly $400k because your health insurance keeps stalling. We had to chalk up the $2200 installation fees for the hand controls as an out-of-pocket expense -- and that's just one of the many costs that come out of own own pockets. I'm extremely fortunate to have a very good attorney to help me navigate the insurance industry. As he has explained to me, insurance companies get stuck between their own policies and the laws of different states. All I know is that without my attorney, I would be going mad right now.

Walking With Arm Crutches 

Discovering a New Normal