Moyamoya Disease: A Life Worth Living

There was a time when music was just music and literature was just ideals. Now, when music talks about loss, I think about what my family might have to go through without me. I think about my girls experiencing life without a mom. I think about the things I still want to be able to witness and do. I have even thought about asking my husband to have a song played at my funeral- but I could never do it. Not to someone who has supported, loved, and believed in me. His strength and role in my life has helped me be in the right mindset.

Poems about death, I feel it now. I can relate to feeling cheated out of life because of this disease. It’s too close, and unfortunately sometimes hard to escape  these thoughts. But, hope helps me from vocalizing these thoughts. Determination and the will to press on… to feel the frequency of life in the present moment that I’m living in helps the thoughts from latching on. My family, faith, and somehow sheer stubbornness won’t allow me to dwell on these terrifying thoughts. (Though, I have to say… my husband takes on a lot of these battles with me when I need a good cry).

On a good day, I look like any other normal human being… but internally I battle so much more. I don’t think about it in depth every day… but there are triggers where I think about the changes that’s developed within me. It can sound depressing or scary to most people (most times I’m past this), but part of living a positive life is learning how to live your life despite the setbacks.

All holidays, birthdays, and anniversaries are important to me. They were before, but somehow it’s been magnified. It’s a milestone on its own sometimes. I desperately want to create lasting memories, traditions, and a wall of joy for my family. It’s a gift to me, witnessing what it does for them. And, I hope…a gift to them should they ever need a memory to remember me by. I want good ones. I want ones where my girls can really understand and believe that they were loved by their mommy. That they were absolutely perfect. That I will always be proud, simply because they are my daughters. I want my husband to feel the presence of my love, even in memories. But, most of all… I want to taste each day as a gift. Normal days, are just as important. It sets up the foundation for everything. But, even all of these kinds of thoughts… I have to fight  against the dwelling tendency of wallowing in it. I don’t want to live my life thinking about death knocking on my door. I want my adventure, and must fight my mind from trying to taint my life with the “if I was gone” thoughts. Still, this is something I have come to accept after having moyamoya. It gifted me the fortunate gratitude towards adding value to the moments spent with love ones. I’m still learning how to balance the whirlwind of “if I was gone “thoughts and my reaction to them. I’ve decided that my legacy shouldn’t just be influenced by the thought of death, but rather by the life I WANT TO LIVE.

Reality doesn’t always afford us with the control to change everything in our life. But, we can try to control our reaction to these events- what do we do now? That’s the question I’m usually left with, “what do I do now?”

I tackle it with what I need to do first. I often put unrealistic life goals that discourages me. Now, I try to create a focal point and steps into acquiring whatever it is I plan on achieving. I want a life full in value and adventure. So, I take steps into opening one door after another. Yet, another thing moyamoya has gifted me with… the ability to see doors even when there are none. It forced me to be courageous despite the darkness. I’m learning to understand myself on a deeper level. It made me want to change and grow to be more compassionate, independent, humble, and self-aware. I have come to appreciate the effort most people make, not just those with moyamoya, must go through to put a smile on a daily basis… even when something difficult claws at their inner core.

Having moyamoya disease is hard. Hard on my family, hard on me, and hard on my friends. Wasting my time dwelling in the many injustices this disease has afforded me is too easy. But, I find inspiration in those who have this disease, but still think of others and not just of themselves. I have one friend, who runs to gain awareness for others. EVERYDAY, (rain, shine, snow), she is running… she is inspiring. Her strength and humbleness doesn’t mean that moyamoya hasn’t disrupted her life, but rather she’s battling it like a warrior.  The value she’s added to her life outweighs the negative, even if it may not feel that way on a bad day.  To me, she is truly living.

This is what moyamoya disease has given me. It makes me want to live a  life worth living.


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