Update on my journey
A gentleman in this community once told me, “A week may be a long time in politics, but it is almost nothing in recovery from a stroke or brain surgery.” At the time, I appreciated the comment, but I don’t think I truly understood it. Looking back now, I realize how right he was.
After my surgery, I genuinely believed the hardest part was behind me. I thought I could finally start getting back to my normal life.
About 40 days after surgery, my neurologist asked me to stop my anti-seizure medication since I had never actually experienced a seizure. Unfortunately, that decision turned out to be a major setback in my recovery.
Not long afterward, I developed a fever, and one night I had my first seizure.
It happened during the night, almost around the same time my brain bleed had happened months earlier. My family rushed me to the ER, and along with the seizure came overwhelming panic. My mind immediately went back to the night of the rupture. I was convinced I had a new AVM rupture/ something worse. Thankfully, it isn’t.
The doctors performed CT scans, MRIs, and other tests. Everything looked reassuring. They concluded that it was a seizure, not another hemorrhage. I was restarted on anti-seizure medication, which I’m still taking. Physically, I recovered from that episode fairly quickly.
Mentally, it was much harder.
For the first time in my life, I began experiencing panic attacks and anxiety. Before all of this, I had never struggled with either. Suddenly, even ordinary things became difficult.
Returning to work was challenging. Looking at a computer screen for long periods would trigger headaches. Long conversations at work sometimes brought on panic attacks. I started feeling overwhelmed by things that had always been second nature. This went on for about six weeks.
Eventually, I sought a second opinion from another neurologist. They felt many of my symptoms were consistent with some complex migraines and started me on medication. Thankfully, those medications made a significant difference, and many of the episodes gradually became less frequent.
Even so, the experience affected me more deeply than I expected.
It shook my confidence.
There are days when I feel like I’m no longer the person I used to be. Before all of this, I was fiercely independent. I rarely asked anyone for help and believed I could handle almost anything on my own.
These past several months changed that. Sometimes it feels like the stronger version of me disappeared, leaving behind someone I don’t completely recognize yet.
Today, it’s been over three months since that seizure.
I’m slowly improving. Life is becoming more manageable again, but recovery isn’t over. I’m still sensitive to loud or overlapping sounds, especially after the seizure. I avoid long conversations whenever possible because they can still leave me mentally exhausted. Crowded places, parties, and trips that I once enjoyed now feel overwhelming, so I often stay home where I can control my environment.
Socially, my life looks very different than it did before.
I’ve had to accept that recovery isn’t about getting back to the old version of myself. It may be about discovering who I am now.
Some days I still miss the old me. But I’m also learning that healing isn’t just about the brain. It’s about rebuilding your confidence, your routines, and your identity - one day at a time.
If there’s one thing this journey has taught me, it’s that recovery is rarely a straight line. There are good weeks, difficult weeks, setbacks that seem to come out of nowhere, and victories that no one else can see.
I’m still on that journey.
And for now, that’s enough.