April 27, 2023
Waking up with a Disability
Waking up with a Disability
Content warnings: medical negligence, ableism, depicts graphic detail of acquired traumatic injury.
The journey of acquired disability from being born as a “normal” girl with anatomical intactness and physiological equilibrium, is by itself disabling. I lost an eyeball and sustained severe injuries to my face, remaining eye, jaw and collar bone in a road traffic accident in India. This happened in my mid-thirties, when I was all set to take my career and personal life to the next level. Recently married to a person of my parents’ choice (as is the case usually in our culture), dreams of a new life, career progression and motherhood beamed my eyes. I still can’t believe at times whether that was a dream or what I am today is; as I see myself as a completely new person now. It is still difficult to change my outlook as a person who has restrictions and who cannot or rather is not ‘supposed to do’ many things which others can.
My first memory after my accident is waking up from coma, a cap covering my left eye, body pain as if pierced by a hundred needles, burning face, and so drowsy while trying to open my eyes and understand where I was. Through my blurred vision I could barely make out my mother, but could hear her voice saying “nothing is wrong, you are alright”. I couldn’t talk - no voice - just the ‘gur-gur’ sound of phlegm, moaning with pain and pointing that I was choking for breath. The nurses in the ICU were reluctant to clear the trachea tube or change my position so that I could breathe better. At night they cooked or re-heated their foods in the portable stove kept within the ICU which made it even harder to breath. Another nurse always swore and put some drops in my right eye which was viable still. Whenever she put the drops in both eyes it would burn as if holding a burning charcoal in the softest part,and my eyes closed by themselves. My ears yearned to listen to some familiar voice. I had never wished more to come out of the “hell ICU” and see the world again.
I did not remember what had happened and how I reached there, until the story was narrated to me by my family. They were supportive (rather over) and always gave me a feeling that I am still the same and am able to do everything like before, just that one eye ball is lost.No-one ever bothered to tell me what my reality was and who had given them the authority to remove my eyeball. Even to this day I just repeat the same account as was told to me but have no first-hand experience of what really went wrong that day, which changed my life from able bodied to disabled.
More so, the next two years I underwent multiple surgeries all for my jaw and lips reconstruction. Multiple specialist and surgeon visits, ophthalmologists at different hospitals were consulted just for endorsing the earlier diagnosis that I am 100% blind in my left eye, and that they were not sure what impact the accident might have on the right one except to wait and watch. When I saw myself in the mirror for the first time nearly8 months after the accident, I could see a hollow in one eye, no clarity in the other and my face disfigured. The oral-maxillofacial surgeon operating on me had promised to try and get back my face at least 80-90% nearest to my original face.
On seeing me every time he says ‘you look better and I am happy to see you like this speaking, from what I saw you after the accident when brought in for the first time’. He has never shown me the pictures of what I was after the accident but narrates that my lips were torn like ribbon, eye ball hanging, jaw broken, collar bone in pieces. Though Iam thankful to him by heart, I regret for this life after accident which has changed my perspective of my body as disabled to myself and the world around me.People around, friends, family, relatives weren’t aware of what had happened tome till 3 years after my accident. Even the closest family did not know how to respond or make sense of my disability, except for assuring me that I am brave or sympathising that this shouldn’t have happened. But none tried to pose the reality before me bravely and empower me for the future. Even the doctors in my family failed to predict the complications, difficulties and challenges ensuing from this accident. The most difficult part I feel is identifying oneself as disabled and shifting your habits, ways and lifestyle from pre-disability to the post life.
Believe me, this adaptability and change in outlook from able bodied to restricted abilities and limitations is not a smooth journey. It becomes even harder with multiple chronic conditions which ensue naturally or due to medical negligence which only adds on to your vulnerability and dependence. Without adequate coping mechanisms, psychological and emotional support and rehabilitation, acquired traumatic disability is a hard race to win.
Parimala S has a doctorate and health sciences degree combined with professional experience in Public policy, health research and CAM modalities. She is a disability advocate represented by Champion Health Agency,from diverse cultural origin with acquired multiple disabilities. Dr. Parimala is a writer and advocate for the rights of women and people with acquired disability, specifically for the rights of employment and accessibility requirements.
[Image:] Dr. Parimala hair dark black hair, brown skin, is wearing dark-framed glasses and is smiling. It looks like a windy day becauseher hair seems to be flying about. Although the background is blurry, it does look like she is at the beach.]