Voices of PBA: We Really Do Need Each Other

By Barbara, New York

People say that New York City is the city that never sleeps, and I couldn’t agree more. In some ways, I feel like it is a good illustration of my brain injury, and even of the hope that exists in the silence between the moments of noise.

It only seems right then, that my head injury occurred on the streets of New York City while visiting a relative. But the dichotomy is that New York brings me a level of peace, of home, and a reminder that life is all around me. I don’t sleep well either, so I empathize with her (NYC) by advocating for myself to live the best life possible. That can only be done by not giving up and by harnessing those moments of quiet strength to prepare me to handle the loud intensity of the crowds, the persistent barrage of brain injury symptoms, and the new concussions that seems to happen out of nowhere.

In 2018, I was leaving to go to work when I slipped on the greasy, broken steps leading me outside. I was falling. I don’t remember how long I was unconscious, but it had to have been thirty minutes. By God’s grace I was able to get up and walk. I notified the superintendent and they called the housing manager. Then, I ordered a cab and took myself to urgent care. The excoriating pain set in after that, and I wasn’t able to move for days. A few weeks later, my employer let me go, and I had to sell my house to pay for my medical expenses.

I went back to work two years later and sustained my second TBI (with a ministroke) the same day. I will never forget it. I couldn’t move. I ended up dragging myself to the bathroom inch by inch until I heard a pop and was unconscious for the next few hours. When I came to, I was in the bathroom floor behind the door. I had banged my head again. Its fierce pounding rang through my ears. Head pounding. Ears ringing. Dragging. Head pounding, ears ringing, and me – dragging my body, as I moved from the bathroom to get my phone and call 911.

After the first, I couldn’t have a conversation. My speech slurred and people couldn’t understand me. I was incoherent –that was likely the most vulnerable I had ever been, and it was also very depressing to be like that. I look at myself now and I’m like, I have come a long way, and I will not let my disabilities define me. I will continue to push through. I can’t run anymore, but I can still go for short walks and enjoy nature. I can’t stand for more than 20 minutes at a time, but I can still cook. I can still do things for me and be me. I just had to adapt to when, where, and how.

When it comes to PBA, emotion and anxiety tend to trigger it the most. One of my biggest pieces of advice for other people experiencing PBA is to find what doesn’t cause a lot of emotion, what allows you to just be still. For me, some of those moments are spent with my dog or walking through Central Park and staring at the clouds. Those little white puffs spread across the light blue sky, or big cotton balls bouncing between a deep blue canvas. I get lost in those moments. Safe. Grateful. Hopeful. They remind me that I’m alive and that I am so lucky to be here, right now.

PBA has really strained my relationships and ability to socialize and even work. I can be so happy one moment and then, moments later, break down into tears or just laughing.

Now, I spend so much of my time isolated and away from other people that it makes it even more difficult to socialize or be around noise when I leave my apartment. I don’t mean excessive noise either, I mean the kind that people embrace as normal and take for granted. Music in restaurants, crowds of people simultaneously speaking or laughing, bright lights. I order everything via Instacart or store pickup. I do the best that I can to educate myself on healthy coping mechanisms and to learn about my triggers.

I wonder about the woman I once was, the woman I used to be… the woman who did not have so many limitations or any neurocognitive deficits. Even though I don’t remember a conversation I had earlier today or if I’ve eaten today, I remember her. She wasn’t just healthy but ran just about every day and did intense boot camp exercises. She had an amazing career and traveled for business and pleasure.

I struggle with extreme hypersensitivity, and every day I have migraines, sensory overload, and struggle to stand or walk for long distances. I don’t (cannot) drive at night because of the headlights blinding me, not to mention the traffic and all those red lights coming straight at me. I’ve experienced bias, been fired from work, had to get second and third opinions from doctors, and have been treated like I’m crazy. Between that, the physical injuries I sustained during my TBI, and my other chronic health conditions factored into the PBA and brain injury can often leave me feeling hopeless.

I have a great support system with my son, neurologist, a couple of family members, and some great friends. I’m incredibly grateful for my son, who was a senior in high school at the time of my brain injury. He has been there for me whenever I need him, helping with everything from taking the trash out to picking up groceries and my medication. Of course, my dog Charlie really helps me get through the bad days, too (and to enjoy the good ones). I attribute much of where I am right now to my doctor’s treatments. I wouldn’t be here today if it had not been for her. And support groups really help –I’ve made friends there too, friends that get what I am going through. It’s nice to be able to help support other people instead of constantly thinking or feeling like I am a burden.

I’m learning that I have limitations. It’s hard, but I am learning that it’s okay. What used to take me an hour, now can take up to four. I have post-it notes everywhere, reminders of important things that need to be done or what medication to take and when. These are vital reminders – to take my Nudexta, depression, anxiety, migraine, and nerve medications. There are even little inspirational notes stuck on walls, mirrors, and well … everywhere.

What I want other brain injury survivors and those who are struggling with PBA to know is, we really do need each other. It’s true; my friends have saved my life on an occasion or two. Being a TBI Warrior isn’t easy and so, it’s vital that we are surrounded by the right people. People that will unconditionally support us and be there for us emotionally as well as other times that we help to overcome these hurdles and challenges of being a survivor.

Advocate for yourself and never give up. Do what you need to do to get yourself the help you need. If you feel like you’re not being heard, seek a second opinion. Go to another doctor. Take your meds –they really do help. Join support groups or speak to someone for emotional support. Push for what you believe is right for you. Have faith and don’t give up hope, for every day is a new canvas to create and start fresh.

This story was co-authored by Sara Evelyne.