I’ve been feeling off-center of late; drifting like a woman lost at sea. I’ve been waking up, without the desire to do anything. Daily tasks feel herculean. My patience is threadbare. I feel perpetually fatigued. My thoughts are slow. I can’t find words when I’m speaking. My emotions have been oscillating to both ends of the extreme. (My thoughts, too, have been yo-yoing around). Yet, I don’t think this is caregiver burnout. (I have experienced that before). It’s more a sensation of internal wandering, restlessness and bizarre hopelessness. I feel emotionally disjointed from our current life. I can’t trace it back to any specific source. It just arrested me one day, and won’t let go.
My emotions mutinying against me, is a hard thing for me to accept right now. After all, it’s Spring. Flowers are blooming. Birds are singing. The days are longer and warmer. There is more sunlight and less darkness around us. Patrick is walking unassisted in our home, and with guarded supervision outside. He is medically stable. Doctors appointments are finally slowing down. Brucker Biofeedback was a roaring success. We are even working on a volunteer position for Patrick, in which he can work with animals.
This time last year, Patrick was awaiting his first tissue-expansion surgery, which was to be followed by 6 injections of saline, a 2nd Cranioplasty, two infections, IV antibiotics, and a month-long inpatient stay. He was still in a wheelchair, and on a lot more medication. We had a hell of a summer awaiting us, and little to no income. And yet looking back, even though I was exhausted every single day, I felt all this momentum pulling us forward. So why now, when things are stabilizing, do I feel so unraveled?
Maybe it’s the adrenaline; that elixir of magic that makes the impossible, possible. Adrenaline is a drug I’ve come to unintentionally abuse many times during Patricks’ recovery. I relied on it during our intense month at Brucker, and then we came home and I crashed… hard.
I had hoped that we would get home and melt into a magical, seamless transition of recovery, in which absolutely no time or momentum would be lost. I wanted to build on all that we had created at Brucker. This was not the case. I always forget that success is never a straight line. It is a zig-zag, swirly-back-forth-and-around pattern, that is interrupted by short spurts of straight-ahead steps. Whenever we take on as a project as big as Brucker, it’s like temporarily sprinting in the TBI marathon of recovery. It requires a sudden burst of energy, and then consequently, a lot of rest.
Maybe it’s the relentlessness of TBI: Sometimes it feels like the top of one mountain only serves to reveal the base of another. We always take a little time to enjoy the view, but soon we are onto the next climb. But this time, we left Brucker with a folder of exercises to do daily, got home, and didn’t do them. To all our readers who only see us as a perfectly in-sync couple, the reality is that we struggle as much as any of you do. There were many ugly moments when we tried to work together, and this has happened in the past as well. We always overcome it, and this week we finally worked it out. Nevertheless, if Brain Injury is like a 7th grade Algebra class, recovery can feel like summer vacation is never coming. I became like a kid who wanted to watch TV and eat pizza rather than study for the exam. Now, I’m just bloated with twice the work to do.
Or Maybe it’s that I don’t know who I am outside of caregiving anymore: I started working on a “Phase 4 Recovery Program” two weeks before we left Miami. But, things are still unsettled. I’ve been trying to hook Patrick up with a local work-out program for 6 weeks to no avail. I’ve been calling about an aquatic therapy program, and still can’t get a call back. We started Yoga, but then Patrick, myself and his instructor got sick back-to-back-to-back. We lost two weeks, and are now beginning again. There’s just been a lot of down-time, as we’ve been struggling to find our way into whatever comes next on this journey.
I also am struggling with understanding who I am outside of caregiving. Lately, I’ve been having some health problems, and have found that while I have no trouble researching brain injury, trying to research my own health issues bore me. When it comes to demanding the best treatment for Patrick, I am a fierce advocate. However, when a bill comes in the mail from a doctor’s visit of my own, I cancel the next appointment, feeling it’s not worth the expense. I guess I don’t know how to invest in myself anymore? My identity as a caregiver is so rock solid, that I don’t know how to begin to chip away at it, to reveal what may still lay beneath.
In any case, if there’s one thing I’ve learned from Brain Injury, it’s that you cannot fight the tide. You cannot force something before it’s time. And you cannot stop the storm. So if my place right now is to be lost at sea, than I’m going to do my best to lay my head back on that plank of wood and stare up at the sky. I’ll feel my feelings as they rock back and forth with the waves, until the North Star appears, and guides me with its light back home.