Bracing for the Setbacks

I’ll admit it: I got comfortable. Life was finally beginning to settle after the tumultuous, exhausting ride of the past few years. I was fulfilling my lifetime dream of getting yoga certified (in Greece no less!) and with a little distance from my day-to-day life, I began to relax. I stopped hiding my cell phone under my yoga mat during class, telling myself the days of daily emergency phone calls were behind me. I was in beautiful Santorini for heaven’s sake! And in just a few days my husband, TC, was going travel by himself — for the first time since his injury — across an ocean to meet me for 10 glorious days of a seriously postponed honeymoon. Life would have to cut the Maslins some slack. If only for a month.

But, as we in the TBI world know all too well, that’s not how it works. Brain injury doesn’t go away just because you decide to go away. So when I got the call from home that TC had been hospitalized after a series of seizures, I was surprised by my own reaction. My mind immediately returned to that day two years ago, the day everything fell apart. I envisioned myself as I was that horrific day — shaking and sobbing uncontrollably in the waiting room, wondering if I would be a widow, whether my son would grow up without a father. The same fears suddenly flooded my brain. It was an extreme reaction to a situation far less severe, but a reaction rooted in one terribly traumatic experience.

 Logically, TC and I have always known to expect setbacks. Living with a traumatic brain injury means acknowledging the potential arrival of any number of health consequences. But this series of seizures was the first real setback since TC’s injury and I guess we thought we were in the clear, at least as far as seizures were concerned. To be honest, I try not to think too far into the future most of the time. I don’t really want to know what TBI looks like 20 or 30 years down the road. There’s nothing I can do in the present to change that aspect of our future reality, so I try hard not to feed those particular anxieties.

But, wow, did this setback catch me off-guard. It caught TC off-guard too, sinking us both into a mild depression that lasted for several weeks. We were incredibly disappointed, of course, at having to cancel a trip we’ve been trying to take for five years, but we were mainly upset by the prospect that so much hard work could suddenly be wiped out by something outside of our control.

Fortunately, TC has made a very nice recovery in the past month and with the exception of our canceled trip, life has returned to the “new normal.” But this experience has certainly given me pause. It’s hard to trust a universe that is so inherently unstable. It’s hard to feel safe in a life that has unfolded so differently from our plans. And the reality is that those feelings are just one part of the TBI experience. Without a whole lot of wisdom to impart on the subject of setbacks, I’d like to simply offer the following suggestions:

Call in your reserves.
When you encounter a setback — no matter how big or small — it is absolutely the time to call in reinforcement. For me, support came in the form of the breathing and meditation techniques I had been practicing in the weeks before. Sitting quietly as I drew awareness to my own breath forced me to stay present and keep my mind from worrying far into the future. For others, it may be phoning that one friend or family member who really “gets” it when you’re having a down day, or perhaps reaching out to an acquaintance in the TBI community. If I’ve learned anything, it’s that there are plenty of folks in the TBI network who are here for each other.

Prepare for possible post-setback depression.
Friends who have experienced other forms of chronic illness have also reported a similar type of mild depression following a health setback. I feel pretty good about how TC and I handled our sadness during this most recent experience. After acknowledging our disappointment, fears, and frustration, we spent a few days just living in those feelings. We watched comforting old movies, kept to ourselves a bit, and tried to take it really easy. After a few days of hibernating, we were ready to face the world again and the depressive feelings began to fade. It’s so important to monitor these feelings, however. Mild depression may not necessarily just go away, and staying honest about your mental health is critical. For many of us in the TBI world, depression seems to be constantly looming in the background. Be honest. Ask for help. I can’t reiterate those points strongly enough.

Setbacks stink, and while I wish I could look into my crystal ball in order to navigate the waters ahead, I recognize that setbacks are a natural part of the TBI landscape. Our world is up and it’s down and it’s often exhausting, but I am learning to appreciate and revel in every moment of quiet and calm.