I know it has been a while since my last blog post, but I've been rather busy lately trying to find my way again. I know I have said this before, but having such a traumatic injury has really changed my life. It's not only the physical changes of being in a wheelchair, but there are many other things have been affected about my life and my family. Because I have not blogged in a while (shame on me), this post is full of a variety of topic swirling around in my head right now.
Family Leaving
Since the accident back in April, my family was here in our house helping us with everything. My parents were here most of the summer and Janene's mom Susan was here for four months straight. We have had numerous other family members visit, but these were the mainstays. As of a couple of weeks ago, everyone has left including Susan. At first, I kinda felt like my safety net had been removed. She was always here for me since the accident, willing to help me with anything. But I have quickly discovered that although I do need help with tasks, if I take my time I can do many things myself. For example, yesterday on my way home I ran a bunch of errands and had to make five trips in and out of the house to get everything out of the car. Prior to the accident, I could have gotten it all in a couple of trips. It's just another adjustment.
Air Travel
Back in August, I was able to take my first trip involving air travel. I only went for one night to my company's office in Chicago. Everything went very well, but it was not easy to sit on the plane for two hours without moving much. Unfortunately I wound up with a middle seat so I wasn't able to easily get up and out of my seat, but I did shift around as much as space would allow and I made it successfully. It really made me realize how much I move around during the day what with standing, shifting around in my wheelchair, sitting in other chairs, etc. This was a good test as a first trip involving air travel. I'm certainly not ready to travel to my company's headquarters in Munich, Germany yet, but I will eventually need to build back up to making this trip.
Driving
Although Janene and I have always vowed not to buy our girls a car when they each turn 16, almost dying in a tragic accident can really change your perspective on life. While I was in the hospital recovering, Janene told me that I was going to need to buy a new car because our oldest daughter Jade was going to be driving my car now. My response was essentially, 'But what about what we talked about and agreed upon?'. To which she responded, 'Bruce, you were nearly killed in this accident. Life is too fucking short to hold back on such things.' This definitely gave me pause and has really shaped how I look at life now. This is not to say that we have thrown out all reasoned arguments and discussions, more that we believe as parents we should be developing an environment of trust for our kids rather than holding things back from them. Also, just to put this into perspective, my old car is a 2001 Nissan Maxima with ~150k miles on it. So we're not talking about a care that is even close to being new.
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
Several weeks ago, I got some new leg braces. This might not sound very exciting but for me it is because they allow me to balance so well that I can stand in place without holding on to anything. Taking off walking is still out of the question right now because I'm still weak from the muscle I lost from being stuck in a hospital bed and a wheelchair. So for now, I'm able to walk using leg braces and balance with arm crutches. I certainly won't win any races, but it is such a wonderful thing to be six feet tall again. I realized this before and even blogged about it, but because I'm six feet tall when I stand, I'm actually taller than many people. But having been in a wheelchair for a while now means that I have been much shorter than everyone around me. I can now be eye-to-eye with people again while speaking with them which is very liberating. I can also hug my girls and Janene again without the wheelchair being in the way. I'm not walking full-time yet but I'm pushing myself to do it more and more and have been standing up for longer and longer periods of time throughout the day. As nice as it is to be my full height again, it still sucks to rely on the arm crutches because I can't carry anything. Sure, I can wear a backpack and take, say, my laptop from room to room, but I can't just carry a glass of water or a dish of food to the dinner table. Hopefully one day.
At least now I can stand more easily and I'm getting stronger. This means that I can begin to cook some things again. Something that I have always prided myself on is cooking for my family. For years now, I have been the primary cook in our house just due to Janene's work schedule. I have really learned to love cooking for my family over the years and it is something that I have missed since my accident. I'm not able to cook a huge meal yet, but smaller things here and there. I'm hopeful that with increased strength, this will get easier. I'm also enlisting Bailey (11) and Jade (16) to help me with many things, especially cooking.
Discovering a New Normal
For those of you who have been following my blog posts, you already know that my spine is now crooked. To date, I have been able to alleviate much of this problem by putting a lift in my right shoe. But whenever I'm not wearing shoes I am crooked again which is rather frustrating because it throws me off balance entirely. I hope that as I continue to build strength that my body will learn to compensate more and more. But this is just one of many small things that I am learning to live with now.
I also have paralysis across my butt and down the outsides of my hamstrings. This paralysis affects all of the gluteal muscles so that I cannot even squeeze the muscles in my butt. The result is that I have no muscle tone in my butt and this makes it very difficult to sit on certain surfaces for very long. So I need to be very careful about the surfaces I sit on and I cannot sit on most chairs, even if they are soft. On my wheelchair, I have a special cushion that contains multiple chambers of air. I also have a thinner more portable cushion that I can use on standard chairs and in the car. Even if the movement of my feet does not return, I really wish that I could regain the feeling in my butt and the ability to squeeze the muscles so that I could build them back up again.
Another difficulty is the difference with my bladder and bowels. When you have a spinal injury, depending on the level of the injury, it's very common to have changes in the function of your bladder and bowels. My situation could be a lot worse, but still the nerve damage has affected both bladder and bowel control. Luckily I can feel when my bladder is full or when I need to go. This is great because many people with spinal cord injuries cannot. Unfortunately I cannot pee on my own, so I must use a catheter to drain my bladder. Furthermore, my bowels are just not the same as before the accident so I just need to be more conscious of when I need to go. So I have had to learn to manage this whole new set of challenges.
Janene did a wonderful job of installing various ramps around the house so that I can get around on the main level of our home, but I'm still not able to easily climb stairs. So we had to move our bedroom to the main level until I recover enough to get upstairs. We have set a goal for end of the year for me to get back to our master bedroom and bathroom on the second level of our home. This goal is about gaining back enough muscle to be able to climb the stairs more easily than I do now. At the moment, it seems like a far off goal, but I have been surprised at the changes I have seen in the last three months.
To address the rebuilding of muscle, I'm also looking into some new rehab options now. I feel like I've been sitting and waiting, for what I don't know. So I feel that it's a good time to ramp up my physical therapy to focus on rebuilding the muscle mass that I have lost. Not only will more rigorous workouts encourage more healing of the nerves, but it will also prepare my body for the time when movement does return. Instead of having some movement return and still being extremely weak, my hope is to help my body rebuild itself to where it was prior to the accident and be better prepared for the movement to come back.
I think the most difficult thing for me has been the amount of help I need with so many things now. Previous to my injury, I enjoyed helping others with various tasks and I was extremely independent with anything I did. Now I'm the one who needs help. This has really been difficult because I went from such extreme independence to a fair amount of dependence. My family and friends are wonderful about providing me the help I need, but I have never been someone who needed help. I always enjoyed providing help to others. Now the shoe is on the other foot.
I still have some not so good moments when my emotions get the best of me. I guess I haven't been meditating as much as I did when I was hospitalized and I need to change this right away. I guess in the hospital I had the time to do so and now, being back to work I don't have so much time available. It has been amazing to me that having gone through such a life change you kinda go through a grieving process for the things you have lost. Anyone who knows me knows how physically active I tend to be -- cycling, running, hiking and general fitness was a big part of my life. Needless to say, this is all on hold right now until I determine if I will regain movement in my feet or not. It's really a wait-and-see situation because nobody can predict what will happen. Everyone's injuries are unique and everyone's body heals differently. I'm still very hopeful that I will regain movement.
There are many other small things involved in my new normal. Although my life is full of new challenges, I still feel very fortunate that my situation is not worse. I try to be as independent as possible and I continue working to rebuild the strength that I have lost.
