Moyamoya Disease: When You Thought She Would Fade Away

How did I feel when I found out that I had Moyamoya Disease? I thought that I would literally fade away. I was told that I would slip away from this world  right after I was diagnosed by a few people in the medical field and even by people I knew. It was a progressive disease, after all.

I had to be transported to a better hospital with better machines. But in the time frame it took for transport to take me from one hospital to another, I was led to believe that I would experience multiple strokes until I finally crumble into nothingness. THIS was what I believed.

THAT was the phone call I had to make with my husband, as I tried explain to him that I may be experiencing more and more strokes until finally, I deteriorate and I am no longer myself. It was a disease that didn’t just affect me. My husband shared in the onslaught of unfiltered information. He also had to deal with the news that he was losing his wife right after having his first child. It was news, I didn’t want to deliver. But, there wasn’t or rather too much information that led me to believe that I was going to die soon, if I didn’t have my surgery.

I knew how I felt. I was terrified. I could only imagine what my husband was thinking and feeling. It was devastating. I remember breaking down in an unfamiliar hospital room, the smell of the hospital overwhelming my senses. I remember thinking that I smelled my daughter’s scent on me and it killed me more than comforted me.  I saw her life flash before my eyes….. I was absent from them.

But, then, a miracle happened. Someone, a nurse, printed out information she could find for me. Paper on hand, and kind words stopped time. I calmed down enough to say thank you. My husband’s words from the previous phone calls reverberated in my consciousness, which helped me be more receptive to the information .. and to the hope it held. He has a knack for getting me to deal with things one step at a time, realistically. Almost like that deep breath you take before the plunge.

To be honest, though, I had almost gone numb at that point. I don’t know how I managed to smile and keep people company. I somehow remember the nurse’s comforting words that the information (no matter how scary) doesn’t ALL apply to me. She gave me advice to educate myself about Moyamoya Disease.

It was a progressive disease, but I’m still here. There is no cure, but I’m still here. I may experience more strokes, but I’m currently healing. I was HEALING. There are steps, treatments, and my life still to live. 


I learned that sometimes, there are things we need to shield ourselves from to move forward. Discernment. That’s what I used to call it when a decision had to be made. I had to allow myself to listen and learn. To be honest, I wasn’t in the most positive mindset… but my willingness to learn and not wallow in all of the negatives provided a stepping stool. I gained strength from the knowledge I acquired (bad and the good). It was about my health, my spirit, my mind. I couldn’t control the fact that I had moyamoya disease… but I could help decide what happened in my life next. I could control the filter of misinformation in my life. 

Educating  and learning how to properly take care of myself was the first step. After that, I kept taking one step after another. My husband walked beside me… supporting me along the way. My children gave me inspiration. It helped that I had someone like my husband, listen to what was medically sound at the time. Sometimes, the emotion got in the way… and he always looked so strong. That’s something I needed to see when I felt defeated by this disease, is for someone to believe in me…. other than myself.

The hardships we go through in life can only beat us if we allow them to. It’s not about controlling what you can’t. It’s all about allowing yourself to know that your life isn’t defined by just that ONE thing. To me, my life is defined by the growth I allow myself to experience, the love given and accepted, the bonding moments with my children, the decisions I make each day to willfully fight and live my life to the fullest. It might not always look like an extravagant day, but it’s certainly a precious day.

Those days were a few of the most horrible days I’ve ever experienced. I’ve felt extreme helplessness in that  hospital bed, believing that I was going to die. But, now, it’s become my testament. A testament to my strength, growth, and belief that I wasn’t alone. The disease didn’t take love, joy, and life from me. It revealed that I had the choice in what I allowed to add and subtract in my life, like fear or positivity. In this lifetime… I choose to keep adding anything that supports my fighting spirit to live a positive and meaningful life. I thought that I lost myself the day I found out that I had Moyamoya disease, instead I gained a version of myself that’s forged in strength and light.


4 thoughts on “Moyamoya Disease: When You Thought She Would Fade Away

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s