Mom Speak : Living and Mothering With Disability
I was diagnosed with a sensironeural deafness when I was 30. I was, then a mother to a 2 year old daughter. A routine ENT check-up during my annual summer vacation in Madras revealed that I had already lost 60 decibels in both ears and since it was a progressive condition there was little I could do. I could avoid oto toxic drugs, wear hearing aids, avoid stress, loud noises and carry on. It was not going to get better, I was told. The only memory I carry of that visit was my instant response to the doctor when I said, “Whatever happens, ‘I need to hear my daughters voice always’! The ENT happened to be my mother’s ENT and my mother had, had the same deafness as I had. But I had never ever thought I would acquire it. I had grown up in a home where my mother could not hear and she never actually used hearing aids to hear though she was profoundly deaf. Communicating with her through our own self-created sign language and gestures was the norm and perhaps as a child I never understood the enormity of having a disability that was invisible yet so real. And now here I was in the same boat, angry, frustrated, and fearful and in a cloud of denial and blame. My journey thereafter of my deafness, learning to be okay with it was one of ups and downs. I went through the process of buying hearing aids, countless visits to the audiologist to treat an inflamed ear canal (due to the moulds), fine tuning of hearing aids for different settings etc. This was in the 1990’s where technology to do with hearing instruments was still in its nascent stage. I did allow my deafness to get to me, allowed it to isolate me although no one actually was. It felt like I was now shutting down the rest of the world to myself. My husband’s support in this journey was a God send. As the man in charge he was clear. He could help me in kick-starting the process of buying hearing aids but didn’t know how to help me emotionally. So we searched for a counsellor who did help me find some level of acceptance of my deafness. This was my first ever experience at seeking help and it made me understand how important it was to do so.Seeking professional help, kick-started me on a process of unravelling how much I was allowing my deafness to affect my daily life. I started journaling, learnt to meditate and spend time in quiet nature. I continued to marvel at any sound I heard and cherished everything from bird song to my child’s voice.
Just when life seemed to be settling down, we had to move cities due to my husband’s job. We moved to Bombay and the change added to my stress; a new audiologist, new environment, the necessity to interact now with new people who didn’t know about my deafness…it was daunting. I admit it was a period marked by sheer overwhelm and severe anxiety with panic attacks, sleepless nights and a total loss of centring. My older daughter was then 4. Having her in my life propelled me to take stock of what I had and what I could do with it. I had to get a grip over myself. I resumed my meditation and sought help through alternative medicine, took up a freelance job and I slowly and steadily got back to living life with a level of joy. I can’t say with surety that I had accepted my deafness but overall I was getting to a better space with it.The thing about my deafness as I have understood it over the years is that there are going to be days when it’s frustrating and there are days when it feels ok. There are days of agonizing tinnitus and there are those days of calm. Perhaps all disabilities teach us that…to take each day as it comes. Identifying with the disability makes it harder. Having become deaf much after I had been exposed to language made me miss what I could not hear- music, lyrics, bird song, even the doorbell. I missed the nuances of conversations in groups, jokes went over my head or should I say ears—it felt like a terrible irreplaceable loss in some way. Looking back now my experience with my personal disability of losing my sense of hearing paved the way for me to handle the challenges that lay ahead. When I was 34, in 2001 my second daughter was born and on the 2nd day of her birth, she was diagnosed with a rare congenital heart defect –transposition of the great arteries (TGA) with VSD and ASD. We were told her chances of survival were bleak. It was one in a million case and surgery could not be performed in Bombay. Her journey will be another story for another day not just for its length and the sheer miracle feel to it but also because it unravelled another part in me-trusting my intuition and surrendering to Divine Grace. After many months on life support, interventional procedures, traveling to another city for her heart surgery, discovering the sheer enormity of what prolonged hospital stays would involve, the damage to her fragile brain, the impact on our family and my older daughter...it’s difficult for me to encapsulate it.It was something I had ever anticipated would ever happen to us. She survived despite every single medical diagnosis indicating that she wouldn’t. She didn’t survive without damage. Her actual journey and mine with hers would begin when we returned in March 2002 to our home (finally!) in Bombay. She was just 1.1 kilos, swathed in flannel sheets because all one could feel and sense were her bones shaking. She was C arched, had no movement in her limbs, fists closed tight but her eyes revealed a determination. Her diagnosis was cerebral palsy (spastic diplegia). Her heart needed care too so did her lungs that had been damaged. Her body was filled with scars with all the tubes and IV drips. And I was a tired mother now on a mission to help my child. Then I didn’t have a cell phone nor did I have access to a support group or Google to search for answers. I had our paediatrician who stood by us like a pillar guiding us, advising us and helping us more than what he was supposed to do. The next phase of my life began as a mother of a special needs child, daily neuro development paediatric therapy, speech therapy, occupational therapy, sensory integration…amidst all her tests for her heart, brain, hearing, sight …. I won’t say I forgot my own disability - my deafness. My thoughts of it took a backseat because my daughter was important. Hospitals are the worst for the deaf. Masked mouths meant I couldn’t lip read. And I recollect the cardiologist telling me, ‘OH but you don’t look deaf!”. But I was and I was managing with what I could and my husband’s support. The labels we carry when we have a disability are several. While I was deaf and a mum of a special needs child and then Super mom/woman, my daughter carried and still carries too many labels for me to list here. She was non-verbal for many years. She never crawled or achieved major milestones. Doctors told me she would never walk. She did. In short she defied all odds. Considering her past post birth trauma, we as her parents had little or no expectations from her. We did what we could within the medical framework of early sustained intervention through therapies, follow-ups, home programmes and giving her as much inputs as possible.
It’s not about learning to live life with a disability. Somehow it’s me. This loss of hearing. It’s a part of me and it’s made me who I am today. It allows me to hear beyond the spoken word and truly listen to what is unsaid. I trust my inner voice in all that I do. From a 60 dB loss in 1997 to 105 dB loss in both ears in 2017, I can happily say I am in a good place when it comes to my deafness. Like me my daughter carries her disability with her and is learning to manage it in her daily life rather than allowing it to defeat her. What has seen me through the years? Do what you need to do with what you have been given! What can I do with this situation that I am faced with? This outlook has helped me see through the challenges. 20 years since its detection and diagnosis, I can still hear my children’s voices and that’s enough for me for now.
Thank you, Jyotsna for sharing your inspirational story. Your story of grit and determination is bound to encourage other parents who are traversing paths similar to your’s. Thank you for being a voice they can relate to.