In Lucy’s own words, she offers some insight into how its been for her what she’s found hard and what’s helped her. Lucy isn’t on social media that much, we actually met whilst I was spreading the word and raising awareness towards the challenges of mask wearing with #clarityincommunication – that’s a story for another time ! but first motherhood….
Tell us a bit about yourself and your hearing loss.
I am Lucy and I am 33 (almost 34) and I lost my hearing aged 7. My loss is categorised as a bilateral severe to profound sensorineural hearing loss and I have no recordable thresholds above 1.5kHz. Over the years my hearing has slowly deteriorated and each further loss is a whole new journey of acceptance and adjustment. There is this idea that hearing aids solve all the problems and that hearing is restored. I have had countless conversations about how my hearing is now “normal” as I wear hearing aids. I have worn a variety of different hearing aids from the age of 7, a process of trial and error to find a hearing aid which is the most suitable. It can be a long and sometimes painful journey navigating through the absolute chaos of sound. I used to struggle particularly when I was young with the level of noise around me, yet still unable to hear the voice I needed to hear. The most dramatic and significant loss of my hearing was due to contacting RHS (Ramsay Hunt Syndrome) a complication of the shingles virus which obliterated my ability to hear high frequency sounds. The recovery was a long process to heal the damage to the hearing nerves, this led to distorted sound and balance issues. Fortunately, over time this corrected however the damage was done and I was now in the severe/profound category. I am now in the process of training to become a psychodynamic counsellor as I wish to work with individuals struggling to navigate the hearing world without the ability to hear. I want be able to offer support with the physical and emotional adjustments of hearing loss utilising the skills of a counsellor.
I am now a proud single mother to my beautiful daughter Violet. The whole new world of motherhood pushed me to face the reality of my hearing loss in a way I had never considered in the past. I was only responsible for myself and now I am the sole carer of a 15-month old baby.
Hearing loss disarms me in a way that I will never feel comfortable with, it has been a lifelong journey of proving myself capable and rising above discrimination. The birth of my daughter created another wave of self-doubt and a desire to prove that I was fully capable of keeping her safe. I want my daughter to witness her mother dealing with hearing loss from a position of strength with pride and acceptance. In the past I attached deep shame to my loss and strived to hide it from those around me. The extent of my deafness means hiding is not an option, and I have reached a point in my life where I truly appreciate the help and support of those around me. Therefore, hiding my disability from my daughter would be depriving her from understanding who I truly am and how I will put myself out there and fight regardless
Preparing for the baby, how was that?
One of the most challenging elements of preparing for the birth of my daughter was the communication limitations due to the pandemic. The impact on the use of masks was a truly demoralising experience especially during medical appointments for my pregnancy. I have always valued my independence and relying on my mother to interpret for me was just full of contradictions. On the one hand I was grateful to have someone ensure I was able to attend my appointments however I was resentful at the same time. Information regarding my pregnancy developments was delivered to my mum first bypassing me. I was disappointed that medical staff failed to address me directly. I struggled with being solely reliant on an acting interpreter which left me feeling vulnerable and incompetent. This is not the way an expectant mother wants to feel. The lack of knowledge and support within the hospital environment was difficult to navigate at times. The pandemic more than ever before made me truly appreciate acts of kindness and I really valued those moments of support in places I never expected.
Access Support you had during the birth of Violet
Giving birth during the pandemic highlighted the lack of awareness of hearing loss within the hospital environment. This caused significant stress and anxiety during my pregnancy and the birth. I was saddened by the lack of knowledge of how the use of masks dramatically impacts someone with hearing loss. I rely on lip-reading to communicate and a mask acts as a barrier which rendered me unable to follow a conversation. Awareness on the subject would have significantly improved my experience as the treatment I received at the hospital left me feeling unsafe and misunderstood.
Being a mum with hearing loss, how are you finding it? Is there any advice you would give to any mothers out there in the same position seeking advice and support?
Babies require your full undivided attention and multitasking with communication is not an option when you are hard of hearing. To follow a conversation, it requires intense concentration so when you add in in sleep deprivation/baby brain/motherhood anxiety having an actual conversation feels near to impossible at times. I have a million thoughts in my head all the time relating to my daughter so it becomes a choice of listening to those thoughts or the person in front of me. So often I end up ignoring them both as its all too overwhelming. I was not prepared for how exhausting having a baby would be, I was completely blindsided by this new level of tiredness. When you consider how the hearing loss alone can be emotionally and physically draining, it’s not surprising that taking a time out of certain social situations becomes a necessity. It can be hard not to feel defeated, especially when other mothers seem to be able to multitask holding a conversation while feeding a baby which is definitely not an option for me. Meeting up takes work and effort and pre-baby it was the social considerations solely relating to my hearing loss. I.e. The seat I choose, can I see the person clearly, am I under a speaker, background noise, finding a place that sells much needed coffee but has a nice quiet coffee machine (doesn’t exist), the right lighting etc etc. Then add the considerations for the baby as well to the mix so a simple coffee out feels like a whole lot of work. So when I have a friend who waits patiently while I sort the baby out, that makes allowances for the many irrelevant answers that I blurt out when attempting to cover up the fact that I was not listening. They are the ones I hold on to and treasure.
I have always struggled with anxiety and there is always this fear, am I missing something?
What if something happens the moment my back is turned these thoughts started the moment I lost my hearing, the world suddenly became unsafe. Then I had my daughter and all the anxiety starts again however this time the fear is so very real.
When I turn my back what if something happens and I don’t hear it
What if she is crying and I don’t hear her?
What if my hearing aids run out of battery?
“What if”
That fear
Its relentless
Thankfully there are many different technical assistance devices available for those with hearing loss. To combat some of my fears and anxiety, I found the bluebell monitoring system. A fantastic tool for peace of mind and a reliable back up system in case my own hearing failed. I was able to assess a situation from a logical perspective rather than to focus on what I was potentially missing. The system definitely saved me from compulsively checking on her every 2 minutes. It was a godsend during those frightening early days with a newborn.
There are always moments in spite of your best intentions that leave you feeling exhaustion you didn’t think was possible. Those around you with all the support and well-meaning advice sometimes just cannot reach the core of how hearing loss impacts on motherhood in an entirely different way. Therefore, it was not beneficial for me to make to those comparisons between myself and those with hearing. Taking a moment to reach out to those who truly understand what it is like to stumble through the hearing world with the added element of motherhood has been one of the most valuable experiences.
Thank you Lucy for Sharing your story so far with us, by sharing our experiences it helps make the navigating of these things less isolating.