Posted by: The Sumaira Foundation in NMO, Voices of NMO
I clearly remember it because my wife and I were on holiday in the United States. While standing in the brightly lit Times Square in New York City with flashing lights coming from every angle, I had to cover my left eye because the pain was so strong. The vision in my left eye became completely blurred as though there was fog in front of it.
Back in Munich, I visited an ophthalmologist as soon as possible. After a few tests, he immediately sent me to the neurologist. At this time, I didn’t know that optic nerve inflammation is a telltale sign of an autoimmune disease. Meeting this neurologist was very lucky for me because he worked at Munich University for a long time and is very close to the research done there.
To recover my vision, he started me on steroid infusions and luckily, I was able to see again without any fog. To be safe, he conducted additional examinations after which nothing was found. I remember quite well when saying farewell to me he mentioned being afraid that he would meet me again.
That’s exactly what happened two years later, after a long hike. I couldn’t lift my left foot up properly and stumbled over every stone on the way. I went back to see the neurologist again. After many months and even more examinations / tests, my diagnosis was firm. I had NMOSD and luckily, my doctor was familiar with the disease.
Looking back, I must admit that I didn’t take the disease seriously. I had not accepted my illness and to be honest, I am still struggling with accepting it. Working too much, not caring enough for myself, and always going to the last limits of my physical strength has caused quite a few relapses and worsening of my ability to walk.
Despite all of that, our life is not sad AT ALL! We have done a lot of traveling having visited the U.S., Canada, Oman, Hawaii, Africa, and European destinations. Since 2020, we have owned a campervan and escape our daily stressors as frequently as possible. We took eight weeks off to avoid the cold German winter and stayed in Greece. On all those wonderful trips, my wife and I have perfectly shared our passion for photography.
My wife does everything to understand and support me in a variety of different situations. This is sometimes a real challenge for her. She is ALWAYS by my side, whether I’m having a good or bad day, when I can’t even walk a single step and end up staying in bed the whole day. She’ll tell me right to my face if I’m asking for too much of myself or having one of my stupid ideas. This honesty is the greatest gift any human being can receive.
Other gifts are my friends who support me and are very sensitive to my situation. Even my colleagues at work! They accept me as I am and don’t treat me any differently than they did prior to my disabilities.
It’s true that NMO has changed my life. Has NMO changed me as a human being? Absolutely. The awareness for using my own energy had been pushed to the forefront of my mind. To overthink your own situation, change your perspective of living, and accept help from others costs quite an effort at the beginning BUT can create wonderful possibilities in the end.
