I was just coming into my own and I had it all figured out. I was producing a life my parents could be proud of and everyone in my circle could respect. I was emulating what I thought was the road to success. I worked 50+ hours a week and wore beautiful power suits. My drive was work and the reward was money. I didn’t spend my days thinking about nonprofits, personal health, spirituality, or inner peace because I thought I was fulfilled. Little did I know that my reality would dramatically shift.
It took an illness to shake me up. I was in my twenties when my whole world changed, and I started to become intermittently dizzy. Was this stress? Was I pregnant? Did I need new glasses? One day I woke up and the world was spinning…and the spinning never stopped. I just wanted to be myself again and I wanted the dizziness to go away. It didn’t, and after a fall from the stairs at work I knew life would never be the same.
The first two years I was paralyzed by fear. I was afraid to move, leave the house or drive - the dizziness was that bad. I had difficulty walking around the block. Was it anxiety? Was I going crazy? Was this all in my head? I was forced to move home with my parents, and while I was thankful to be there I was also bitter inside. How could I get people to understand what it feels like to have your car sitting in the driveway and not be able to drive it? After two years I started falling into a depression, not getting up until 2:00pm, not showering for days, not seeing the outside of my house.
I was finally persuaded to see a counselor. I went through a few but managed to find one that could understand what I was going through. She explained to me that I was experiencing loss, that I was grieving. I asked her how long this grieving process would take, a question she couldn’t answer. I continued with the sessions and started to realize that something was happening. I was pouring out my feelings and the depression just started fading away. She didn’t judge me. Heck, she hardly said a word. I was working my way through this mess and I started to gain a sense of control. Then my insurance was dropped by my employer, I became uninsured, and the counseling visits stopped.
Did I mention being laid off? Remember my identity that came from producing and work? Well, that got taken away from me too. I won’t even get into the demoralizing process of applying for disability. I was broke, jobless, and asking for handouts. Who had I become?
My counselor was exceptional because she taught me how to manage my feelings on my own. I began to realize that I don’t have control over the symptoms of this disorder but I do have control over my mental faculties and how I respond to this condition. For five years I sided with fear, anxiety and depression - I was constantly tired. I had to address this anguish, so I began mental housekeeping. I started to think outside myself, asking if others have moved through chronic illness in a positive way. The last two years I have worked on confronting myself with questions like, “Marissa, how are you going to respond to this?” and “How long are you going to beat yourself up?” as well as “How do I grow from this?”
My grandmother has been my saving grace. She opened my eyes to see a world beyond myself, reminding me of my blessings. I am fortunate to have a supportive fiancée, a family that cares, and a grandmother praying for me. I didn’t have to pretend to be in control or fake it anymore. I was no longer going to continue in my familiar pattern of self-destruction.
With this increased clarity I was able to seek a new team of specialists and medical practitioners, who are now helping me work toward a better quality of life. I realize that a vestibular disorder requires a team of open-minded healthcare specialists that are willing to work with you.
The diagnoses have changed several times throughout the last seven years, BPPV, Fistula, Canalithiasis, Cupulithiasis, and currently Neuro-Vestibular disorder. I’ve been told the symptoms are inside my head, outside my head, and everywhere in between. I’ve learned that regardless of the uncertainty that comes from this vestibular disorder there are 3 things I can be certain of: 1) I trust that the symptoms are real, 2) I am surrounding myself with supportive people and medical practitioners, and 3) I know there is a community of others who share my similar experience!
So, here I am. This past year I started a blog, was a guest on a popular web design podcast, and volunteered, all within the four walls of my room. Yes, I am scared out of my mind, and that’s OK. I realize that each day living with a vestibular disorder brings uncertainty, doubt, confusion, fear, anger, depression, and a host of other emotional and physical symptoms. I’m learning to combat these experiences by being in a heightened state of awareness, and allowing myself to filter these realities into manageable personal challenges.
Blessings to all of you who live with a vestibular disorder or care about and support someone who does. If no one believes you, trust that you have at least one person that does: me!
You can visit Marissa’s blog at: http://www.abledis.com.