How To Deal When You Have An Incurable Disease

I was 25 years old when I was told that I had Moyamoya. What’s that? It’s an incurable disease that limits the blood flow in the brain often times causing a stroke for those who are diagnosed. THAT’S what happened to me.

3 weeks prior to my stroke I gave birth to a beautiful baby girl. 3 weeks! Can you imagine experiencing one of the most beautiful miracles and then having it snatched away you from you faster than you can blink? I crumbled. I remember sitting up in my hospital bed, wanting the simplest thing like being able to inhale the sweet scent of my newborn baby (at one point I swear I could smell her), then crumbling to pieces in a cold room invasively attacking all of my senses. I was there… vulnerable.

Years passed… and I wish I could give a step by step cure all in how to DEAL with this disease. There’s been the ups and down of helplessness and empowerment I’ve felt throughout this journey. Bittersweet moments during birthdays where I feel blessed to be alive for another year, then having the passing moment of wondering if I’ll be around for the next one. It sounds so morbid… and depressing. But, after awhile it just becomes a fleeting thought followed by the sting of emotion that pierces through the subconscious for just a fraction of a second. I somehow manage not to dwell. Holidays are the same. I often times wonder if I would treat holidays differently if I didn’t have this disease. EVERY event is  special to me. Not because it might be my last… It’s because I have a family to spend it with. Maybe, that’s what helps me deal.

Finding something worth fighting for makes every moment sweeter. It has weight in my life. It provides the sustenance and stops me from being too self absorbed on the things I can’t change.  I am more appreciative on the ones that brightens my  life for the better. I think of dealing with moyamoya in this way…

Ever tried holding onto water in your hand? Or sand? It easily slips away. Fast or slow… you tend to lose the substance you’re grasping so hard to attain. That’s what it’s like when I wallow in self pity. My life passes me by… and the life I think I should have and keep trying to hold onto slips away. It’s not my life.

Ever tried holding onto something concrete? Like someone’s hand for example. That’s what it’s like to hold onto hope, family, the future, faith, embracing my life for all the positive that it is… I don’t deny that having moyamoya is difficult on my family, my health, my peace of mind, and soul. It is hard… but NOT all of the time. The things I hold on to grips back. It latches on… and I am not alone. 

 You might notice that  I post so much more about things I enjoy with my family, things I’m passionate about, and what keeps me going.  There’s so much to love about my life despite this disease. I am so blessed. I am healed. I am moving forward.

Although, I fight to spread awareness and battle this disease on a daily basis I truly believe that a cure is out there. 

I am happy and jumping for joy for the life that I lead. Giddy almost. It feels so good to plan for the future… and know that there’s so much more to accomplish and improve upon. Don’t give up. Remember that taking even just one step towards the future… leaves you one step ahead from where you were. I guess that’s how I deal… by living my life one day at a time, allowing myself a future, and embracing my life (flaws and all).

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2 Comments Add yours

  1. Lively Life says:

    ‘sting of emotion that pierces through the subconscious for just a fraction of a second.’
    can understand this line completely. Glad to read the giddiness for the future you hold 🙂

    1. TriOptic says:

      Thank you Lively Life! It’s a bittersweet experience

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