Mar 30, 2022
3 mins read
I'm not sure what the future holds.
If you would have asked me 5 years ago what I would be doing today... I would probably say something along the lines of getting married and starting my family or traveling the world. Those have always been my biggest goals in life.
I don't need much to make me happy. I don't need a big house, the nicest car, or a ton of money. That doesn't matter to me. Happiness matters to me.
If you asked me 5 years ago today if I thought I'd be in a wheelchair, I definitely wouldn't have said yes. The world has had different plans for me though and that is currently my life. I'm paralyzed, having seizures, vision loss, hearing loss, chronic pain, chronic fatigue, and the list goes on.
I'm not living the life I thought I would at 22. The last 6 months have been crazy. My life right now consists of daily appointments, therapies, tests, tears, and frustration.
My family and I are working so hard to get me to treatment this summer. My goal is to go with an open mind. Of course I would love to walk, I would love to come home and be living my 'normal' life again. But realistically, my life will never go back to what it was. There is a chance I will need medical equipment for the rest of my life...My goal in treatment is not to leave walking. That might be surprising but that isn't my biggest problem. So what would I like to gain from my treatment?
I would like to figure out how to control my seizures or make them the bare minimum. I would like to learn how to manage life more independently (whether that's in a wheelchair or not,) I would like to find something that helps control my triggers, to have relief from my chronic pain, to find what to do when I lose my vision or hearing, I want to gain a better understanding of my disorder.
After I get home, no matter what condition I'm in, I will continue spreading awareness. I will keep bringing attention to a disorder that is so misunderstood. I will be an advocate. I will stand up for all of us with voices that are unheard.
Functional Neurological Disorder is real. Functional Neurological Disorder is a misfiring of the nerves between the brain and body. FND is a problem with how the brain functions and not a structural problem. FND can have symptoms that go hand in hand with other neurological conditions and autoimmune diseases that usually get diagnosed in the future. FND symptoms are completely out of our control.
What does the future hold? I don't have an answer to that. I do hope that when I come home in July, I will have a better understanding of my disorder. I would like to know if I'll be in a wheelchair for the rest of my life or not. (Doctors in the US won't give that answer with my condition though.)But if I come home in a wheelchair, my goal is to learn how to travel independently again. I want to see the world and if that's in my chair, I'm not letting it hold me back. I hope the world still has plans for me to get married and have my own family one day. But for now, I'm going to focus on my disorder and learn it to the best of my abilities.
If my life purpose is to blog about accessible places around the world, then I'll do it. So help me kick my seizures to the curb! I want to start living again!
With love, Aspen Sage ✨