Life is great, but sometimes it sucks, you know?
I have two wonderful kids, a fantastic wife, a job that pays well, and a good education. I’ve never been unemployed for very long, and never been what I would call ‘poor’. I’ve had lean years when I was starting out, but I’ve also been in the right place at the right time, many times, and used that to my advantage. I’m fairly intelligent, have few vices that could be construed as self-destructive (as long as I keep my need to finish things in check). Life should be, and is, pretty good.
And yet, sometimes it really sucks. Being laid up with Guillain-Barre Syndrome for the last six-plus months, and having two surgeries the year before that, has really impacted my ability to do what I want when I want to do it. It’s often left me, and my whole family, stuck in “as soon as” mode. As in “As soon as I’m better, we can go to Disneyland.” or “As soon as I’m better, I can start writing again like I was last year.” or “As soon as I’m better, we can start doing some of the things we need to do to fix the problems the planet has.” “As soon as” is always a few more months away than you hoped.
And to be clear, this isn’t just about me. It’s also about having put the load on my wife for so long to keep the house running, and the load on my kids to entertain themselves at the end of the day when I’m just too tired to go out and play catch or play in the sprinklers with them. It’s about wanting to do some of the simple thing to help friends and neighbors, but knowing that you just can’t. You look fine on the outside, but you’re just not fine yet, and you just don’t know how much longer it’s going to be before you are. After so long, everyone begins to buckle under the strain, and negative external forces impact us all a little harder. When one of us gets sick (or in this week’s case where two of us get a cold and one gets an ear/sinus infection), life gets even harder. We all know colds last 7-10 days (usually) and life gets back to normal, but when you’ve already been in ‘bunker-mode’ for so long, something as simple as the common cold goes from inconvenient to debilitating for the whole family.
On the other hand, there have actually been some good things that have come out of getting GBS. First, it happened at a time where I was getting very frustrated with the editing process on my novels. I just didn’t seem to be ‘getting it’. The stories were getting better, but the writing wasn’t. While I was laid up those first few weeks and unable to even think about writing, the wonderful Jason Black had some time to go through a few chapters of one of my books, and to really dig in to what was lacking and what needed work. When I did finally have the energy to go through the novel to fix those, I had to take it really slow, since I couldn’t read for more than a few minutes at a time. That method, along with Jason’s help, completely changed my usual “get through this quick” approach. After a few pages, I suddenly got it. The latest version of the novel is leaps and bounds above the previous one, and I can’t wait to begin applying what I learned to the three other manuscripts that are in desperate need of a full edit.
Being at home has also helped bring me back closer to my kids. When I was working full time, I picked them up from school about 50% of the time and then we dropped into the evening routine of swimming practice or dinner and a video game and bedtime. Now that I’m working from home, I take them into school each day, pick them up each day, and sometimes take them out for smoothies before getting ready for swim. Instead of video games, we’ll watch a baseball game together, or play a board game. Before I got sick, parenting was just one little part of my day, and honestly, my wife did a lot more of it than I did. Now, I can’t imagine not dropping them off every day, and when I do get better and am able to go back to work full time, it’s going to be really hard to give that up.
One of the other things I’m glad I did/am doing during my recovery is to spend my time on the couch, watching documentaries. I’ve learned a lot about history and science and politics and food in the last six months. Sure, I’ve watched a lot of crappy movies movies too—my mind can’t take constant intellectual stimulus, especially when there is nothing I can really do with that knowledge at the time. I need time to absorb and process the information before I can turn it into something useful. Watching all of these documentaries has truly been life-changing in a hundred different little and big ways, and gives me hope for my, and my kids’ futures. I have no doubt that had I not spent the time watching informative material, that I would be far more depressed than I currently am.
The other good thing that has come out of all of this is that by recording my experiences on this blog, a number of other people with GBS have come forward and told me that my story has helped them to cope with their GBS. Those first few days with GBS are quite traumatic. Everything you see online is usually worst-case scenario—patients who die because they get inadequate or inappropriate treatments, or patients who spend months in critical care. But my case, I think, was more ‘average’, and people can take solace, and hopefully inspiration, from that. They still have their battles to fight, and everyone’s experiences are different, but knowing that there are others out there who have survived and are recovering at a manageable pace is somewhat reassuring.
So, as horrible as GBS has been, it has also brought some benefits. My battle is not over, and, as the last few weeks have revealed, it does not seem to just want to give up and go away quietly. But as long as I can still do things that lead to long term benefits, I will try not to get too far down. Recovery, is just around the corner. I have to believe that. And as soon as I’m better… look out.