Chronic defiance
Welcome back, Therapals,
Today I have to fully embrace anecdotal experience and take some pride in being able to share a part of my story with all of you. Please be kind as I indulge in this task.
It felt to me like episode 184 had an unintentional theme of life-long diagnosis from both the perspective of the patient and those who surround them. Through very specific and personal experiences we were invited to think about how living in sickness can affect one's behavior. It so happens that I am well versed in existing inside a defective body, I just have reached the point where I can wear a healthy disguise.
When I was 13 years old I realized that regular classes would cause me pain. At first, it seemed temporary, maybe I needed glasses or something. Maybe I was tired. At 16 I started avoiding going to the movies because two hours of enjoyment would bring another twelve of agony. By the time I was in college - the first time - I would schedule my day around how many times I was in pain. My backpack always had a supply of medication that needed to be refilled every week. I wouldn't go out much and all my close friends were somewhat accustomed to seeing me in pain. I even developed some signs to be able to communicate when I couldn’t speak - it's rare now, but extremely intense episodes will trap me inside, making me fully aware but unable to speak and/or move.
I went to several doctors, had years of exams done, got close to an addiction to painkillers, thought I was going blind. I also thought I was going to die, accidentally almost caused a fatal injury on myself, and very much wished I was dead.
It took me a few years to figure out I have chronic migraine, even though it runs in the family. It took me more than a decade to manage it successfully.
Looking back, I don't know how I did it, I just knew I had to do it. Daily life was miserable, limited and exhausting. The only way to adapt to it at first was to accept everything. I wasn't ashamed of my condition anymore, and that was who I had to be at that point. But that would not be what would define me for the rest of my life.
Years of treatment later, I say it is an everyday struggle. Today, for example, I woke up and there she was, weighing heavy over my right eye. But I won, I feel fine now. One day at a time, another lesson learnt on how to be the most comfortable me.
Chronic pain will often force you to learn how to live around it, and this is the only specific reality I have some familiarity with. It is an intrusive condition that will sit right in the middle of your existence, refusing to be ignored. And if you ever try to do so, it will just take more space until there is nothing left for you. More than half of my life has been defined by this battle of how to make myself exist around and larger than the pain I can feel at any moment. The triumph I seek is not absolute victory, but a peaceful cohabitation. On one side, my genetic blueprint lays down all the traps; on the other, my unshakable willpower finds its ways to navigate the treacherous terrain. There is no escaping how we were built, but humans are notoriously talented at adaption, the ultimate advantage that hardly ever fails us.
So, please, if you find yourself in similar conditions and your body seems to be actively working against you, be defiant, be courageous. Be stubborn for yourself. Use the survivor's bias to your own benefit. Think about how much you’ve done so far by being exactly who you have always been, how much you have overcome. I won't lie and say the journey is easy. You might not be able to do everything you dream of, sure - I can't wear anything on my head and face, for example. But it will be okay. You can adapt and find other ways of being fulfilled doing what you love. And you will do it your own way, which makes it unique. Perhaps you can pave the way for other people who also exist in a more challenging body.
This is how I like to see my unescapable neurological condition: a challenge that I am able to conquer. I do need a different set of tools, which I craft for myself with the help of those who understand my uncommon requirements.
Don't think you need to make yourself smaller to make others comfortable, no. Ask for what you need because that is what you deserve. There are no rules, you do things the way you need to do them. Somedays, I would wear sunglasses inside the office. Or take naps at a sitting position. Brush my hair for half an hour, brush my teeth for ten minutes, take a shower with a chair.
It is also important to note that it was never anyone's fault that I was suffering constantly, not even mine. The fact that I was in pain made me very irritable, of course, but that was not carte blanche to lash out at my family, for example. The migraine still affects my mood, my tolerance, my energy levels. However, my migraine cannot be used as a shield from criticism, as an excuse to hide from responsibility, or as a justification for recklessness. It is never acceptable to act like you are beyond reproach just because you are in pain. Everyone has their issues and should be held accountable for their shitty behavior.
After so many years of experience, if given the opportunity to tell my younger self anything, I would say it will get better. So that is what I would like to tell anyone facing a lifelong diagnosis. We mature, we adapt. The secret is to never stop, and never let yourself be stopped.
In the beginning, it feels overwhelming, but at some point, you will forget how bad it used to be. Finding balance won't feel so daunting. You will find the best possible version of yourself and feel proud.
Take good care of yourselves. You are worthy.
Triple hug,
The Mayor.