Last year, I had an elective surgery (a rhinoplasty, to be specific), and its effects are still there: the sensation of my body feeling like it’s on an elevator, the walls and objects in the room looking like they are shaking, my brain feeling like it’s shaking, and so on. I knew that something was off when I was experiencing these symptoms, I knew that my body never felt like this before. I was scared.
I saw an ENT but it was a vestibular rehabilitation therapist who told me that I was most likely dealing with MdDS. He said there was no treatment or cure yet. I went home and read everything there was to read about MdDS, and most of it was negative. At 21, I felt like my life was over; I didn’t see a point in living when I couldn’t experience stillness or concentrate.
I cried every day.
I laid in bed all day.
I felt hopeless.
This wasn’t a problem that money could fix, it’s not like I could have gone to a doctor and received an injection that could fix this sensation. The facts were there, no cure exists.
That summer was the darkest time of my life; I experienced many negative thoughts and isolated myself from everyone. I rarely talked to my family members or friends. I tried to get my mind off of it by reading books. I took drives into the countryside and listened to music. I wrote in my journal a lot. I tried my absolute best to survive each day. Back then, it was so hard. I was prescribed an antidepressant which helped stabilize my anxiety. My therapist gave me some good advice, and I returned to finish my senior year of college. I started laughing again, I started feeling hopeful again, I started talking to more people again. Even though my body was still feeling this sensation, I was resilient.
I like to think of my life before and after MdDS. Before MdDS, I thought my life would always be the same. Back then I felt really lonely, life kept going on, and there I was, living the same day over and over again. I was frustrated, depressed, and too hard on myself. Life felt so unreal; it even feels unreal now at times.
After MdDS, I realized that life is very unexpected. I realized that the only person who can save you during a difficult time is you. I realized that I am allowed to grieve what my body was capable of before and what it’s capable of now. I miss the stillness, I really do. I still miss so many things from before but I have emerged as a person of strength and resilience. I have learned to listen to my body and have experienced many life changing moments.
My symptoms improved through six weeks of vestibular rehabilitation therapy and medication, and have improved a lot since my onset last year. If you are new to MdDS, You WILL be okay. I am really proud of myself for being resilient. I am so proud of everyone who is reading this, you all are so strong. Let’s not give up, let’s continue advocating for ourselves and for a cure.
Anonymous MdDS Warrior
Age at onset: 21 years old
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