When we are faced with an obstacle, big or small, we supposedly pick one of two options: to fight it or to run away. Nowadays, they say there are more options beyond a simple fight or flight, but none of them quite fit the situation we find ourselves in when the issues are coming from within ourselves. You can’t fight your own body when it decides to slowly break down from the inside, and you can’t run away when you would just be taking it all with you. Instead, we end up defaulting to the idea that we are just okay.
When doctors say they don’t know what to do, it’s okay. When people who don’t really understand apologize to us and promise to pray on our behalf, we tell them it’s okay because we’re used to it and know there’s nothing to be done to make it better.
I always saw this as more of a resignation than a defense mechanism. We are all guilty of it, but for me, it became a lifeline—a hope to hold on to. If I spoke it into existence enough, then surely it would come true.
When I was two, I was told I might never learn to walk. But that was okay because I could still do lots of other things like go to school and make friends.
Then, when I got to school, I realized not a lot of kids wanted to be friends with the girl on a walker whose skin looked weird and bumpy. That was okay too; I could take up hobbies and things meant to be done alone, like reading and art.
Then, come to find out, I wasn’t very good at art, and reading gets quite lonely after some time. That was okay too; maybe I could take up sports. Well, no, I couldn’t do that either because my bones could hardly hold up as is, and now something was starting to feel wrong in my leg. That was okay…
I was going to be okay.
Then the doctor told me the news… A 19-centimeter-long tumor had appeared in my leg. A plexiform, as we now know to call it. I said that was okay too, except now there was no justification to back it up because really, I was falling apart. Never before had any of this been okay, but this time I couldn’t find anything else to make the situation better. No operation could help. There was no medication I could find. No amount of physical therapy or cryogenic freezing or yoga or essential oils or prayers or anything anyone had to offer was going to help with the constant pain I was now in, and it was getting worse and worse by the day.
I wasn’t okay.
I had been hopeless before, but for the first time, I had no idea how to push through it. I couldn’t convince myself things were fine because I had run out of hopes to fall back on. I was in pain all the time, and when I wasn’t in pain, I was terrified of the next wave. I think the fear of pain is worse than the pain itself because it reprograms you completely and forces you to cling to “okay” more than ever before, except now, even you don’t believe it.
Even the simple act of walking was agony, and despite how I appeared to everyone around me, tasks that once felt like milestones had turned into hurdles once again. No alternatives. Nothing existed anymore except for the pain I was in and the inevitability that it was here to stay.
Everything I had worked to be able to do had become a chore—one I feared because I was too familiar with the ache that would come whenever I tried.
“How about we take the dog for a walk?”
“No thank you, I’m okay.”
“What about a trip to the theme park?”
“I’m okay, maybe next time.”
“We could go swimming? Or a bike ride? Or—”
It didn’t matter.
“I’m okay. I’m okay. I’m okay.”
If you’re tired of reading that word by now, you can understand how exhausting it was to keep saying it—especially when I had stopped believing in it.
I don’t remember when I realized how tired I truly was, but one day I woke up and decided I was done. Done being in pain and done making excuses for it.
I couldn’t stop myself from hurting, but I was finished accepting a lack of solutions. I searched every forum I could find, read every obscure article, and even began studying medical texts, hoping a magic answer would appear that everyone else had somehow missed. Every night felt heavier than the last, and I had nearly given up looking. Then one evening, the quiet background noise of some late night show caught my mother’s attention with the words “inoperable plexiform.” Whatever chores she had been doing were forgotten as she rushed to turn up the volume and listen.
The doctor on screen mentioned a medication we had never heard of, explaining that it was relatively new and used to treat plexiforms that other procedures couldn’t touch.
Suddenly, we had a new light to chase.
It took years, and I was bounced from doctor to doctor, each visit ending in false leads and dead ends. But eventually, we found a clinic that specialized in Neurofibromatosis. Within one appointment, I had a prescription, and within two weeks, I began to feel the pain ease away, bit by bit.
I wasn’t suffering anymore.
I wasn’t even okay. I was better than that. For the first time in a very long time—
I was thriving.
Thriving didn’t mean my pain disappeared completely, it meant I finally had space to breathe, to plan, and to live without constant dread. It meant I could imagine a future again and live in the moment.
Sometimes okay is all we can manage, and more often than we’d like, it becomes something we have to convince ourselves of. However, being okay is a balance to manage and not a default we should rely on.
It is okay to have bad days and it is okay to face our reality with a sense of detachment when that is all we can manage. But okay is temporary. It is comfortable and easy, but we are capable of so much more.
No matter how long it takes and how many times we are faced with obstacles, dead ends, and doubts, we are more than the situations put unto us.
It takes courage and it takes time, but, we are people of resilience, and even if we find ourselves only able to be okay sometimes, there will always be people, passions, and progressions to bring us beyond it until we finally find we no longer need to convince ourselves… we can just be.
About the Author: My NF journey began as soon as I was born. I inherited NF1 from my father, and it was clear from the time I was a baby that, just like him, I was in for a life of complex medical challenges. When I was two years old, a bone malformation in my leg caused a pseudoarthrosis, meaning that at the ripe old age of two, I was only a few minutes and a tough decision away from being an amputee.
Thanks to the incredible medical team at Scottish Rite Medical Center in Dallas, I was able to learn to walk again without losing my leg, but the problems didn’t stop there. As a child, I had to take extra good care of my skin in the sun, check for new bumps on my arms and face, and go through biopsy after biopsy just to hold on to the small piece of normalcy I had.
When I was sixteen, I started to feel like something was off, and it was different than anything I had felt before. I’d be sitting in class, trying to study, when my leg would suddenly shoot forward in a muscle spasm and my thigh would burn like it was being stabbed with one of those hot red knives people use to cut metal online. To say the least, it was infuriating.
After many tears and a six-hour MRI, we found out there was a large plexiform tumor in my right thigh, causing the pain and spasms I’d been dealing with. We tried to shrink it as much as possible through noninvasive treatments, but eventually it was declared inoperable, and there wasn’t much anyone could do to ease the pain.
This continued until we heard, of all places on the TV, about a medication called Gomekli. It took two years to go through all the testing and to find a doctor who had even heard of it, let alone one willing to help me try it, but once I was on it my life began to change.
Now, with a new medical team and six months of treatment behind me, I’m starting to feel more confident in who I am and what lies ahead. I’m grateful to be able to share my story and help others face their own challenges, knowing that through every up and down, there’s always light at the end of the tunnel and people ready to help you get there.
