My Journey with NMO Part 6: New Hopes and Beginnings
Last updated: March 2022
Editor's note: To read part five of Dan's story, click on this link.
The year was 2017 and it had already started with a not so please try bang. There were so many changes to my NMO-driven life. I lost, I evolved, I took responsibility, and I made some big moves. This year was quite different. I’d like to say it was all great but first few months were the worst.
I was truly my grandmother's favorite
The year started and within a few weeks I had lost someone so close and so dear to heart. My grandma passed away in the early morning while I was alone. I received a call from my upset mother that I can still hear in my head today. Deep down I knew it was for the best; she had been fighting Alzheimer’s disease for a long time and could barely remember anyone. But her face would glow anytime I went to visit her. I know I was her favorite grandchild (sorry, not sorry). I had spent the most time with her out of any of her other grandchildren. We had a bond like no other. She’s in my heart everyday and I’m thankful she never had to see how bad things got for me with this disease. I know she’s in a better place but I’ll never stop missing her.
I know she's still with me
I know she watches over me and I know she was there at the service because she sent my mother and I a sign to laugh and smile. I can’t really say what it was because it may come across a little off, but we knew it was her. She didn’t want us to cry anymore and her mission was accomplished. Everyone else at the service didn’t seem amused but it didn’t matter to us. My mother and I can be quite the odd balls of the family so it was all well.
Parting ways and starting over
Come March, it was time for my ex and one of our cats to move out. He moved on and I stayed in the apartment with my lil man Nathan. If it wasn’t for Nathan, it would of been a hard month of finally living on my own. It was tough, but it was really my first time being on my own with this disease. I did well and was making it work. Sadly come April, I was let go from my management position. All it took was one person to see I wasn’t mentally up for the job anymore and during some of my darker days I may have said and neglected parts of the job I shouldn’t have. It was a real eye opener for sure.
I could breathe a little easier
For the first time I could breathe a little easier. I took this all in as a sign that changes needed to be made and I needed to be honest with myself. My vision wasn’t what it used to be and that kind of work wasn’t for me. Within a few days, I moved back in with my mother. My apartment complex understood my situation with my medical issues and let me leave without penalty.
I had to admit it
With all of that behind me, my next step was admitting I was visually impaired and disability benefits were my next step. Some may say it was a lazy way of going about this since I still have some vision, but they don’t understand: it was more than that. I feel like it was the right choice. I was finally making progress but one more thing needed to happen.
And just like that...
I think men have the worst time admitting they need help or trouble asking for it. I was stubborn and I was over my meds. They destroyed my body and mind. But this next step had to happen. I wanted to keep what vision I had left. I wanted to stop this disease cold in its tracks and take back my life. And just like that I made the appointment with a new neurologist and came up with a game plan.
I started a new NMO treatment
Rituxan was a treatment I had never heard of before it was brought to my attention. It was a treatment I’d get twice a year that would keep this disease in check. I admitted I needed help and I got it. It's a treatment that, to this day, has kept me from any further flare ups. The fear bug doesn’t bite as frequently on this treatment and I can’t say it enough: I am so thankful.
Well, there's one more part to come. Thanks for reading!
Has NMO impacted your ability to keep a job?