Deb Brandon: Living in Radiant Color

Swimming with the current

The New River at Thurmond NPS photo/Dave Bieri

Everything felt wrong, as if my mind and body weren’t my own, as if I didn’t fit inside myself.

I didn’t recognize my inner wiring—my mind was a stranger to me. It didn’t work as it should, some parts didn’t work at all. Choppy thoughts came and went, entangled, incoherent. I felt disconnected from my inner being, out of sync.

I’d just come out of my second brain surgery, when the neurosurgeons removed the cavernous angioma in my brainstem. I couldn’t process any kind of input from the outside—conversations between and with friends and family, explanations from doctors, or nurses’ instructions.

I was disoriented, sucked into maelstroms, tumbling every which way. I had no resources to draw on to fight the currents.

Within a couple of months after the surgeries, the worst of my confusion and inability to reason my way through life subsided. I became better able to synchronize myself with the world around me. I started seeing the bigger picture.

As my awareness of the world around me grew, so did my energy level. I now had more control over my mind and body, at first fighting to stay afloat, and later battling the current, the bloody brain.           

I worked hard to recover physically, cognitively, and emotionally, often ignoring debilitating fatigue. In order to increased strength and stamina, I exercised daily, alternating between a stationary bike and a rowing machine. I took frequent walks, which later evolved into hikes. In order to return to the classroom, I worked to relearn arithmetic, college algebra, and calculus. In addition, I was seeing a psychotherapist and psychiatrist to manage my depression and anxiety.

Throughout my first few years into my recovery, I refused to yield to the bloody brain, often ignoring symptoms that indicated I was overdoing it. Much of the time, I felt as if I was fighting my way upstream, against the current. When the ongoing battle drained me, I floated downstream.

I settled into a rhythm—I learnt to adjust and readjust to the demands of the bloody brain. Unwilling to allow it to rule my life, my risk management skills improved.

I accepted invitations with care. Crowded parties were a rarity and I limited dinner dates to no more than once or twice a month. Knowing I’ll suffer in the aftermath of social activities, whether with one other person or more, I always planned for at least a day of recovery time. During particularly rough patches, I canceled plans and rested, in order to replenish my resources, so that I could continue the fight.

I had no power over the formation of the cavernous angiomas, the brain bleeds, or the losses they incurred. But I did have a say in how I lived my new life, how I accommodated the bloody brain.

A vague memory surfaced. Wasn’t there something about stuff that can and can’t be changed? Something about serenity, serenity something… Serenity prayer maybe?

 I googled it and there it was, the serenity prayer: “Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.”

I felt something inside me click into place.

During the first few weeks after the brain bleeds I was caught in maelstroms. I was at the mercy of the waves. Indescribable headaches, tremors, poor balance, difficulties breathing, seizures, seizures, and more seizures.

Finally the current slowed down—no new symptoms popped up unexpectedly, no more trips to the ER. Keeping my head above water was still a struggle, but it was no longer frantic. I now had enough room to breathe to contemplate my circumstances.

I couldn’t go on like this, shuffling from day to day, existing. There had to be a solution. I became proactive, to take charge. Following the advice of a neurosurgeon who specialized in cavernous angiomas, I chose to have the two bleeders surgically removed—the only known treatment to prevent future bleeds.

 Three brain surgeries later, the current returned in full force, maelstroms, whitecaps, and all. But within weeks, the storm abated, no longer feeling helpless and hopeless, I was determined to live despite the brain injury, to recover and regain my independence. I suffered bad brain days and not so bad brain days. Ongoing fatigue forced me to take breaks, to float with the current—between rough patches, I rested to regain the strength I needed to resume the battle.

Wait—the current metaphor… it felt right. I felt another inner shift—the serenity prayer made sense. I had no control over the current, the power of the waves, the whims of the bloody brain. But there were plenty of things I could change and did change from relearning to read to becoming a writer and author, from leaving a stifling and stagnant lifestyle to growing into a new, fuller life.

As I progressed on my journey of healing, the bad brain days no longer dominated my life. Now, more than twelve years into my recovery, the good days outnumbered the bad. And instead of living despite the brain injury, I was learning to live with it.

Now, most days, I swim downstream, with the current, making changes and adjustments, actively using coping mechanisms and compensation techniques. I am now better able  “to accept the things I cannot change,” have the wherewithal “to change the things I can,” and I am learning “to know the difference.”