I’m going to be completely transparent with you here. I’m always honest with everyone, but please know that what I’m about to share with you is not easy. If I had it my way I’d lock this away deep within myself, forget about it, and instead present a nice, “fluffy” article that everyone would love to read (like something about “how we’re all extraordinary” or “how to be the best ‘you’ you can be”, or another exciting piece that Joel Osteen would be proud of). But God gave me a purpose in this life: to use it to glorify Him. And I can glorify Him even on hard days. I hope this will inspire someone. I’ve given God complete complete control over my life, and He told me to write, so that’s what I’m doing.
Yesterday was a long day. I woke at 6am (about four hours earlier than my normal waking time. I don’t do mornings!) to have my sweet Daddy take me to an appointment at John’s Hopkins. For several years now I’ve been experiencing intermittent sharp chest pain that comes and goes without any rhyme or reason. In an eight year time span, multiple physicians haven’t been able to determine what the problem is – mainly because it’s so sporadic and not triggered by anything. I went to a new doctor and explained my symptoms and how I felt it’s muscular, only to be told it sounds like it’s something with my GI system. I met with a GI specialist yesterday who truly believes it is muscular and therefore couldn’t help me. I’m not writing this for sympathy, but so you might understand my frustration level. I left feeling more discouraged and even crazy, and on our way home I felt something I didn’t like at all yet couldn’t quite shake: jealousy. I thought about the people I know who go to the doctor for simple things like colds or sinus infections and are easily treated. Why do I always have to be the mystery diagnosis case, I thought. It’s not fair. I got home and suddenly had a sore throat, and that little green monster popped up again: jealousy. Jealous that other people can go all kinds of places without feeling sick because they’re so much stronger than me. It’s not fair. Then I was scrolling through Facebook to see that a twenty-year-old girl with the same medical diagnosis as myself was able to get the new Spinraza injection “treatment” for SMA that I can’t have. It’s not fair. Three times Satan came to me through the form of jealousy, and three times my sweet Jesus gave me peace to let go.
I am unlike anyone else with SMA type 1. I can do things that shouldn’t be possible. I have been able to help others with my disease through my own experiences. A child is starving to death and one of my old doctors suggests TPN (aka total parenteral nutrition – IV nutrition that goes to your heart and nourishes the body while bypassing the GI system). “Won’t that kill them?” struggling parents ask. Then doctors say “let me tell you about Amber Stewart…” I’ve helped people make the decision to get a trach because it really is a huge blessing. It often takes a long time to pinpoint health problems with me because people with my diagnosis rarely reach adulthood, and if they do they’re essentially vegetables who aren’t active like I am. It takes a while to diagnose a problem, but I’ll be able to help others get diagnosed faster. What a blessing that I can help people! And my immune system isn’t the greatest, but I’m so blessed to have the ability to leave my home and go wherever I want/need to go. Many don’t have that option. And I pray that the girl receiving this new treatment has much improvement, for she’s weaker than I am and needs a miracle. I see miracles every day. I will wait for an upcoming gene replacement therapy that doctors believe will help me more than Spinraza would and hurt less.
I am not everyone else. My life journey is truly one of a kind, orchestrated by the God of the universe who loves me for some crazy reason. Through the darkness and the sunshine this life is beautiful because He is with me. He’s with me when I’m impatient, when I feel people don’t understand, when my family is always there for me, and when sweet friends bring a milkshake and make hot tea to help my sore throat.
Take a lesson from me. Don’t be jealous of anything or anyone, for God doesn’t make mistakes. Trust that you’re right where you need to be, and don’t long for roses and forget that they have thorns. Cherish life. It’s messy and unpredictable, but if you know Christ and let Him direct your path, it’s perfect.