Posts tagged Neuromyelitis Optica
1 year ago, I was in the midst of my journey through Neuromyelitis Optica (NMO): a rare autoimmune disease, where your antibodies attack your central nerve system of your spine and eyes. To cope with this, I wrote about my journey and how I feel on a health blog, which you can find here (this opens a new window). One of the pieces I wrote is called “Dear 14-Year-Old-Me”. I hope you enjoy :)
Dear 14-year-old me,
Congrats on getting your permit! Don’t drive without your parents, you are going to get caught while pulling onto your friends’ driveway. Dear 14-year-old me, this summer will be your last summer that you will be able to drink camp water, so enjoy every drop even if it does taste like iodine. Dear 14-year-old me, your 15th birthday will be one of the happiest days you will have when you are 15. You are going to have a surprise birthday party… well I guess it’s not a surprise anymore (oops). 6 months after you turn 15, you are going to get sick again. Dear 14-year-old me, at first, you are going to have a headache and fuzzy vision, but you are going to have great friends who visit you every day for a week when you are in the hospital. Don’t be scared, 14-year-old me, but 2 weeks after your hospital stay, you are going to be 100% blind in your right eye and 20/400 in your left. You will also shake, lose your strength in your legs, and lose the ability to pee. Dear 14-year-old me, you might feel like this is the end, but you are strong. You will have a tube in your neck, have 7 rounds of plasmapheresis, plan a Pesach seder for the PEDS floor, learn to re-walk with a walker, have 43 tubes of blood taken, and learn all about the human anatomy while you spend 2 weeks back in the hospital. You will also travel out of state to get medical attention and get a diagnosis. Dear 14-year-old me, you are going to be diagnosed with a rare auto-immune disease called NMO. Although you will be shocked at first, you will find the positives in it. You are going to be apart of the 500,000 people world-wide who have this NMO. Dear 14-year-old me, miracles are going to happen, and you are going to astound your doctors. Your vision will come back to 20/20 in your left eye and 20/30 in your right. You won’t have to use a walker anymore, and will go to camp for the summer. You will have a totally new mindset about everything, but you will have friends helping you and teaching you everything you wish to learn.
With much love,
After ACT’s today, I had the chance to regain my social life, and hung out with my friend Mushka. We were talking about life and things going on, when the conversation turned to what it was like last year when I first started my NMO journey. I’ve been asked many questions about NMO, but Mushka’s question was different: she asked if I have had to change because of my diagnosis.
Not once has anyone ever asked me a question along these lines. She wasn’t asking about the physical changes (like daily meds, blood tests every 2 months, and the numerous doctor visits), but the personal changes.
Yes, I have had to make changes because NMO has limited me. Over the summer, I was signed up to go to New Zealand, but I wasn’t able to attend because of the distance; I have to bring my own water to camp because the chemotherapy knocks out my immune system, and the well water isn’t clean enough; camping trips are out of the question because of the water situation, and if I become overheated, my legs stop functioning. But more from this, I have changed spiritually. If it wasn’t for NMO, I probably wouldn’t be as religious as I am now; I probably wouldn’t keep 100% kosher, nor would I spread the love of Shabbat to others who now come over every Friday night to celebrate Shabbat with me and my family.
After answering her, I realized something: not only had she asked a question out of her own curiosity, but a question that I too was wondering about out of my own curiosity.
It’s amazing what friends can do for you, whether physically or personally, a friend can help you understand your own self better than you could by yourself.
WEAR GREEN AND HELP SUPPORT NMO!!!
Wednesday, October 24th, is NMO Patients Day!!! Please wear green to show your support for me and the other 500,000 people around the world who are suffering from NMO (Neuromyelitis Optica).