Everyone’s heard of heaven on earth, but have you ever experienced hell on earth? It’s that moment when joy is interrupted by something that is completely out of your control. I’ve been standing on the precipice of heaven and hell these last couple of weeks, THANKS MOYAMOYA.
My world was comprised of lost time. It’s almost like a movie that has missing parts. Every time I open my eyes, it’s a different scene of what my family and I experience on “bad days” before they flutter shut again. These lost moments are claimed by the pain of migraines, dizziness, and stroke symptoms.
Open my eyes, the porcelain throne… and the contents of everything I’ve rejected from within me. It’s vile, bile. Open my eyes, it’s my girls asking me if I’m okay… telling me it’s okay. Open my eyes, it’s my husband taking care of the things I couldn’t do. Open my eyes, it’s music that calms me. It let’s me know that I’m not alone. Open my eyes, it’s a missed doctor’s appointment because we didn’t want this to turn into a hospital visit. Open my eyes, and it’s my family reenacting our daily routines… but with me as a bystander. I was benched the last few weeks. I was rooting for my team though.
My moyamoya symptoms attacked like a wild storm on the first day. It was uncontrollable and fast. I was working that day. Spots. I remember seeing spots first. Then the dizziness started, but I continued to work. Sensitivity to light, noise, migraine, and a hard time speaking came after. Texting was my only way to let my husband know what was going on. Miraculously, God heard my prayers (at least, I’d like to believe so), and I had no more calls for the rest of the week. I was logged off 5 minutes after my break. Maybe it was coincidence… I didn’t care. I was thankful.
I remember laying on the couch, begging God for this to stop. I’m not proud of these moments, but I also understand that I’m human and accept that there will be times I experience weaknesses in my life. Although, to be honest, I also feel this is a test of strength. I may have begged and even thought about bargaining with God… telling him I’m okay with experiencing this for 5 more minutes at its worse if it would just stop. But, I think I was always thinking about my family and what I needed to do that day. Silly, I know, but I cherish our “normal” life.
It took a lot out of me to finally call my husband. It was hard to speak, I was scared of being alone, and I hate feeling like I have to depend on his strength all of the time. He gives it so freely, and never questions how much more he should give. It’s always been something that came so natural for him, like it didn’t take too much effort for him to lend me his support.
He was able to come home for break so that I can sleep for a bit, because on “bad days,” it’s hard for me to sleep alone. Sometimes, when symptoms arises, I become afraid of being alone. My fear is that something horrible could happen and I wouldn’t be able to help myself. That’s part of the reason I feel secure in having my husband watch over me as I sleep, and that’s not weakness… that’s trust. The day was a blur after that. The week blended into a whir wind of throwing up, laying down, and feeling horrible. It was a slow recovery back to normal after this… and I’ve only just written about a part of the first day. There’s just SO much of it sometimes, that even writing it down becomes impossible. I wanted to share something intimate, vulnerable, and of substance to show that when I say that this blog was created to impose upon those who takes the time to read, that living in this world in a truly positive mindset and to spread moyamoya awareness are not just empty words. I have to live by the confidence I acquired and the mental strength I worked hard to achieve.
My hobby of fashion (if you can call it that), of things unique, of anime, of everything I have written about and shared are all to show that even when my family and I experience this, we live such extraordinary lives. I am blessed beyond measure to feel secure enough in my husband’s strength, to have children that outshines my expectations for them, to have my relationship with God (not generic, but to truly be exposed to his glory), and to see the world in the way that I do after Moyamoya.
This is why my family makes days at the park, our shopping trips, our photo op (lol, with a very indulging husband and kids, it makes it very easy), our trips to guitar center, and indulging in things we love to do… a necessary indulgence. We spent so much time recovering that we hope to continue to enjoy life and wholly express the people that we have become in our daily lives. I want to live big. And, I don’t mean that in a materialistic way. I want to outshine my doubts by accepting the polished outcome my family and I have become. Okay, so we’re obviously not perfect, but as a unit we are in sync.
In these pictures, you may see a very healthy me, a very cool husband, and active kids. No one would have ever guessed that just a couple of days before that I was planted on the couch barely able to live a functional life, or that my husband was on little sleep juggling work, the kids, and me. Little things like grocery shopping becomes too much. But, we are miraculous beings. The confidence we acquired strengthens our resolve to shuffle our feet one step at a time.
This is why, when I talk about being bold in fashion, it becomes easier to be outrageously out of the box if I felt like it. We have one life, why waste it on the perception of disappointing others who prey on the misery of others? That’s why I always encourage those to try new things, keep what you love close, and that no matter what you are a beautifully imperfect.
Being able to get out and experience the fresh air for the last couple of days was a dream. Instead of darkness, I was met with the chatter of my kids playing. Instead of interrupted memories, I was met with the full melody of my husband playing MANY songs on his guitar. We weren’t carelessly living, then. We had a purpose in our joy. Being able to simply make a “fashion” statement means more than just looking good. I felt good within. I was able to ACTIVELY spend time with my family. Indulging in the positive vibes of the fruits of our sufferings can be pure bliss.
I have no regrets. I am more than the product of Moyamoya. Despite this disease, I would have still had an amazing family and a strong desire to experience life to the fullest. I refuse to fade away… I am getting stronger each day, despite my weaknesses because of the strength I have around me. Although, moyamoya has impacted my life, my husband’s relentless struggle to become a better man each day and my kids’ golden hearts feeds my energy wholeheartedly.
I refuse to be a regrettable shadow of what I could have become. So living positively, and taking all that I can from the life I was given is the only way I know how to live. It’s not an easy way to live, but it’s worth it.