If you’ve ever accomplished something you worked at for a very long time, you know this to be true: things get really hard right before the end. Marathoners talk about how there’s a point right around the 20 mile mark where they start to question their sanity and desire to run a marathon. Doctoral students (I know this all too well) start to question their decision to spend 6 or so years of their life studying one thing right before they propose their dissertation and again shortly after they defend the proposal. I’ve even talked to advocates and activists who sense their will breaking down right before they are about to accomplish something huge for their cause. It’s a pretty common thing: it gets dramatically harder and you are inevitably tested to the point of breaking right before you break through.
In my opinion, this is why you see the same people accomplishing multiple things in your life – and the same people accomplishing nothing. Those people who have been tested know what it’s like and they know to expect it to get harder one more time before it’s over. They know to put their head down and to fight. They know there is no rationalizing what is happening, there’s not negotiating, there’s just persistence. While I’m not a fan of the quote’s author (Newt Gingrich), I love this quote: “Perseverance is the hard work you do after you get tired of doing the hard work you already did.” Perseverance is that little bit you squeeze out when you’re certain there is nothing left. Perseverance sucks, but if you’ve ever come close to a finish line, you know perseverance is the only thing that will carry you through.
I haven’t blogged in a really long time and for the most part stopped talking about my day-to-day issues recovering from and living with post concussion syndrome. I even deleted everything on this site that I had written in the past. This has been conscious, albeit selfish. I needed a break from the suffering and from the suffering of others. That doesn’t mean to day-to-day issues have gone away. I’ve just been trying very hard to give them less control over my life. There’s a downside here though: the less visible and vocal I am about what I go through, the less I’m engaged with the community of other people going through it; the less I’m engaged with those people, the easier it is to lose hope and feel isolated when the bad moments come. Also, the less I’m engaged with others, the harder it is to ascribe some kind of meaning to what I’ve gone through and what good I can do with it now.
I know my perseverance has given others an example of what it is like to keep going. I know this from the middle of the night texts I get from someone suffering who “just wants to say hi,” a phenomenon I’ve experienced enough times now to know that the person on the other line just needs to know someone out there cares, gets it, and wants them to live for another day. I know this from the moms who have reached out to me to tell me they read some of my writing to their suffering child in a hospital or in a dark room at home after a TBI. I know this from the occasional check ins from folks I get after not hearing from them for months, even years, who want to tell me how great they are doing and want an audience, again, of someone who cares, gets it, and is glad they are here. Suicide is an extremely real part of the TBI community. I’ve talked more young people off that ledge than I want to remember, but I have to remember, because I know that one day they’re going to call me or text me and need someone to be proud of them for persevering and getting help through that dark moment. I also have to remember, because the tears I cry when I hear from people who say “you helped me” are more healing than any rehab protocol I’ve ever been through. They reach a part of me no one else can.
Recently, I became a Compete Team member for I Am Adaptive. To be honest, I’ve gone back and forth on coming back into the spotlight with my journey. I want to be rid of this journey. I want it to all go away. I want to be done with it. But, I don’t want to be rid of its community. I don’t want to walk away from the people who have taught me to keep fighting for my health, my life, my sanity. And I don’t want to walk away from the responsibility I’ve earned through my own perseverance. The I Am Adaptive community has given me the opportunity to outreach to more and more people, especially vets who are dealing with TBIs from deployments in combat zones. I’ll never know what they’ve gone through nor understand it, but I can understand some of the common consequences of brain injury. I can understand some of the ways this invisible thing can take over your life and leave you with very few lifelines. I can understand going to doctors who are still just learning how to treat this thing in all of its complexity. I can understand how exhausting that is to endure. And while I’m no longer in that place, I remember being in a place where I thought it was no longer worth it – and found myself reaching out for help.
I saw my doctor on Christmas Eve and met him with this desire of mine to be done with healing. I told him about the priorities in my life and begged him to help me find a way to fit rehabilitation into the picture. He met me with what I already knew: It will only fit if I make it fit. He gave me the answer I didn’t want to hear, because I’m exhausted: you’re just going to have to work harder. I spent the ride home from that visit SO angry. I wanted everything I’ve done so far to be enough. Didn’t the last 12 years count for something? Didn’t last spring and the 50 days I spent in bed because physical therapy was destroying me count for something? Didn’t giving up my classroom to focus on rehab mean something? Didn’t the summer months spent focusing on nothing but rehab while losing time on my dissertation mean something? Wasn’t all of that enough? Unfortunately, no. No one gives out marathon medals to people who stop at 20 miles. No one gets half a doctorate. No policies change in the social realm because you just showed up. You must finish.
I took a moment to read over my blog post from this time last year and to look at my reflections and goals from 2015. While reading it, I was able to really see how far I’ve come and appreciate the things I can do now that I couldn’t before. For example:
- I have zero cognitive issues leftover. If anything, I’ve developed better habits that make cognitive tasks easier and allow me to accomplish even more. For example, when I defended my dissertation proposal, two of my committee members had no idea that I had struggled so much and was using accommodations to complete my work. When my advisor congratulated me on passing and added a note about my perseverance through health problems, the other two committee members looked at me with astonishment and said they had no idea. I’ll take that as a win.
- I work out regularly. While I still limit some of the things I do, especially if I’ve had a hard work day, I still make it to the gym most days. Even with a bad headache, I have myself trained to at least sit on an exercise bike and put in a hard 30 minutes until I’m drenched in sweat. I know so many folks suffering with PCS who would LOVE to be able to do this. I also remember those 50 days spent in bed last spring where just putting laundry away was too taxing. I’ll take this as a win, too.
- My visual convergence issues have gotten a TON better. While I still have some eye strain and fatigue at the end of a long writing day, for the most part I can tolerate writing. I’m reading better, too. I read a bit of the newspaper every morning. Not too long ago, I was listening to audiobooks only and using my Kurzweil reader primarily. I still tap into the Kurzweil every now and then when I do get tired, but those instances are becoming less and less.
- I can drive myself around without issue (usually). With some exceptions (long highway trips in traffic, bad days), I can get away with driving myself around with minimal to no motion sickness. I still struggle to be a passenger in a car, but I’m working on it.
- I have energy. I don’t take naps at all anymore (turns out they’re bad for recovery) and I’ve gotten my nutrition under control so that I have consistent energy all day. I’ve even switched to a completely vegetarian diet, I limit my dairy intake, and have lost 10lbs.
There’s more, but these are the big ones.
So what’s left? I still need to knock out some visual and vestibular issues through visual therapy and more dynamic workouts. My brain, vestibular system, and eyes are still mis-communicating, which totally sucks and makes me feel sick as hell. I still get some nasty headaches with pressure changes (weather and flying), but I’m hopeful that the fitter I get the better I can tolerate these things. I’ve even started using a training mask to help me learn to breathe better, which weirdly helps me realign my spine and is strengthening my core – meaning less neck strain. Also, I have some irreversible damage in my neck that leads to a ton of pain especially after workouts, but I’ve resolved to use my cryohelmet and tens unit to keep it under control. When that fails, I’ll get over my desire to do this whole thing med free and use the muscle relaxers I was prescribed. That’s also something I should note: everyone I talk to in the medical community is continually impressed by me doing all of this mostly medication free. I wouldn’t advise it for everyone and have some pretty good reasons for it, but it’s worth noting.
Next steps for me are as follows:
Today, I began with a new strength and conditioning coach to help me get back to more dynamic workouts. Her role is to kick my ass, keep me honest about form, and get me to suck it up when I’m programmed stuff that is vestibularly challenging or might flare up my neck pain. I’m extremely excited to take this portion of my rehab out of my hands and hand it over to someone else. I’m not so excited about feeling like crap, but if last year’s 50 days in bed taught me anything it’s that the struggle is worth it. Also, I’m in the process of getting linked up with an ocular therapist locally, which is another effort to get the vision therapy out of my hands. I was doing at home vision therapy, but I was struggling with consistency because the level I was supposed to be able to complete knocked me down for a few days at a time – something I just don’t have time for right now while writing a dissertation. I’m excited for this step, too. The pressure headaches issue are tabled for a bit. Like I said, I’m hopeful that some of the other things I am doing will make them either go away or become more tolerable. Only time will tell, but for right now these other issues are more pressing.
Wish me luck! And good luck to everyone sticking with it. Perseverance totally sucks, but you (and I) will be glad you gave it your all.