“I believe you.”
These can be the most powerful words you can say to someone who is crying each day desperate for the world to take them seriously.
It is true when they say that you only realize the value of something when it is lost. I do not think that many people appreciate the peace of stillness, the feeling of being stationary or even the steady ground beneath their feet. Imagine losing these things forever.
I was 23 and fresh out of college. I had secured my dream job and wasn’t bothered at all that my workplace was about 1.5 hrs away which meant I was required to travel by the metro train for 3 hours each day to and fro. Yet those metro rides to work more than 3 years ago changed my life irreversibly. I was cursed to be on the metro eternally. I could never get off.
I am a lecturer by profession and the first time I noticed something was very wrong was when the colorful clothes of the students in my class started bothering me. Every time I wrote something on the board I felt that it was not stable. It was difficult to write on something which kept moving. The stairs became my enemy. They swayed dangerously every time I tried to climb them. The ground trembled and it felt as if I was walking on a mattress. I started behaving like a maniac, telling the people around me that we should rush outdoors because there was an earthquake. Bright lights and patterns disturbed me. It became impossible to walk through a grocery store without the lines of neatly arranged colorful items agitating me.
My family started becoming annoyed because there was nothing visibly wrong with me and yet every time there was a family function or an outing to the mall I kept saying I was not feeling well. I felt a rocking sensation inside me without realizing that I was rocking on the outside too. People began pointing out that every time I was sitting or standing at a place my body was visibly in motion.
I was taken for CT Scans and MRI’s. The best neurologists in the city said I was perfectly fine, it was all in my head and send me off with anxiety medicines and vitamin tablets. This would have made anyone feel relieved but it ended up making my life even more miserable. Since all my medical tests came back negative, my family too started believing that I was probably anxious and needed to be strong. My lowest point was when I had to take a week off from work and I remember sitting on the bed cross legged with closed eyes and I felt my upper body moving to and fro. Various scenes from horror movies where demonic possessions made people sway frighteningly came into my head. I cried like I had never cried before because fighting the world when you believe you are right is easier, but fighting the world when you start feeling that you might be wrong is impossible.
I shifted to a branch of my company nearer to my house to avoid the commute, hoping that I would feel better. But the swaying and rocking did not subside. I lived in a rocking trance for two years, spending most days crying silently in the bathroom at work and weeping myself to sleep every night. I had been healthy all my life and now I too believed I was not right in the head.
I took to the Internet and kept researching, a part of me still trying to find a reason. Finally I ran into a group online, with members with similar symptoms. I was beginning to find answers. I contacted my friends abroad and send them my reports and symptoms. I urged them to discuss my case with the neurologists there.
I found my answer. I had Mal de Debarquement Syndrome.
Finding out my ailment’s name was nice but getting to know that it had no cure and nothing could be done about it was appalling.
Nobody in my country seems to have heard about it.
My anxiety grew along with it bringing in new symptoms of muscle twitches, tingling sensations and panic attacks. I also have PCOS, which keeps my hormones off balance, which seem to play a role in the worsening of my symptoms. Because of being off balance and the constant gravitational pulls on one side, I kept feeling like my body was tilted, which made the muscles on one side of my body overworked making the other side feel light. I had a lot of panic attacks thinking I was having a stroke because my right and left side felt different. I also had an issue with my proprioception, which meant that if I wasn’t using my limbs I sometimes felt that they weren’t actually there. This was my most scary experience. I later realized that proprioception is a part of our balance mechanism, hence, it was also disrupted. Everything combined made me believe that I definitely had some scary disease like MS or ALS.
It has been more than three years living with it now and the only thing which has kept me going is the moment when my family had said to me, “We believe you!” It wasn’t in my head. I wasn’t crazy.
I did not quit my job and after sulking for a couple of years I took control. I started yoga and meditation. I cleaned up my diet. I straightened my posture and kept going, through the panic. The symptoms haven’t gone and they are still my constant companion but they are much more manageable now. I work 8.5 hours, 6 days a week without any medication. It takes me thrice the effort to do any task which a normal person can do, but I still do it. As a matter of fact I excel at it.
I only take the lowest dose of clonezapam 1 hour before a party I really want to enjoy or if I’m craving a shopping spree at the mall.
I came from being depressed enough to consider suicide to being strong enough to accept my condition and move on. I believe in myself and my loved ones believe in me. I do not remember how it feels to be still. I might never experience it again in this lifetime.
This is MY normal! It is a part of me but it in no way defines me.
Age of onset: 23
Trigger: 3 hour metro rides