This post is about the feeling of grief I experienced after my loss of vision following brain surgery to remove benign tumours. For me losing a sense which I considered the most important has now been taken away from me. Whilst I still grieve daily for this loss, as time goes on I’m finding I’m now accepting the situation and I’m now managing well. The one thing I find difficult is that I dream and visualise memories in full colour, yet when I wake up I’m reminded that my world has changed. For a moment I get that sinking feeling, however it is now quickly replaced with thoughts about what I’d like to achieve today to give myself a sense of empowerment and independence. Besides, what choice do I have? I have a beautiful baby who needs his mum and I need to be a positive role model in his life.
When I woke up from both brain surgeries, I felt numb. I never thought I’d end up legally blind for the rest of my life. I was under the illusion that it would be temporary. As days and weeks went by, I began to realise my vision just wasn’t improving. This was confirmed by my ophthalmologist after my second surgery to remove swelling. His words are now imprinted in my memory – “I don’t doubt you are legally blind, there maybe some improvement, however the chances are small”. Those words made me feel like the world I had known had now been taken from underneath me. I felt anxiety creeping in as well as panic. I found it hard to breathe and absorb what I had just been told. My thoughts were “f$&@ing hell, I’m so scared for my future”. I was jumping ahead and worrying about how Archer would cope with having a legally blind mum and whether I could do all the things a new mum with 20/20 vision could do. I also feared that Cameron would resent me because I wasn’t the person he first met. I was worried about being a burden on my family and friends and yes, I did have thoughts about maybe it would be easier on everyone if I wasn’t here. I remember talking to mum about those thoughts and she reminded me pretty quickly that I had a baby that needed me. I had plenty to think about practically and mentally. It was sending me off my head and the steroids I was on certainly weren’t helping!
One of the hardest things I had to overcome after losing my vision was communicating with my loved ones with what they could do to help me while I was grieving for my vision loss. This was a time where I felt vulnerable, angry, sad, hurt, sleep deprived, confused, and also a deep sense of loss of identity. I also felt very alone. There wasn’t anyone else to talk to in my situation. At the time I didn’t know how to articulate these feelings. Cameron copped a lot of flack because I had lost the ability to enhance my relationships using non-verbal communication. This meant I couldn’t read body language or facial expressions, read texts, emails or interact on social media. Anyone who was around me copped hours of verbal diarrhoea with no filter and often in a kind of what felt like a quite psychotic/manic state looking back. I just needed to offload my crazy/anxiety ridden thoughts and would do so to anyone who would listen. Trouble was, I also wanted them to understand, but truth is…no one did, how could they? I also felt resentment and a misfit. I felt like I didn’t belong in the new world I was thrust into.
It was a tense and tough time for those around me. Often people would not know what they were walking into……whether I would be pleasant and friendly or just plain abrupt and rude. People didn’t know what to say to Cameron and I or what to do, which is perfectly understandable. Cameron and I had so much to process and because we experienced such a tragedy, both of us needed time to process and learn how to live with each other, a new baby and negotiate how we were going to tackle this bumpy road. I really think is is so much harder for your loved ones watching you go through something so difficult. Cameron felt helpless because he couldn’t fix me. My mum and dad and in-laws felt the same. Mum said she would’ve taken my place if she could. My brother, Alex felt so far away in Scotland and just wanted to be home. I didn’t want my family feeling that way about me and my situation so it was up to me to find the courage to take charge of my life and move forward in a positive direction.
What I found helpful whilst grieving my loss of vision:
For me, personally, when I was in hospital I found I really needed my space and time to bond with Archer and also to deal with the enormity of my health situation. I loved all the messages, cards and flowers to let me know I was thought of and help was there if needed. As far as visitors go, it was great if people checked first to see if I was up to having visitors. I was strict on visitors because there were a couple of times in the beginning where visitors would rock up, sometimes with an entourage and would stay and talk for a couple of hours. I found this exhausting when all I wanted to do was sleep and bond with my baby. Plus I looked like a monster after brain surgery and didn’t want people other than my mum, husband and a couple of my girlfriends seeing me at my worst! I was also trying to process what had happened to me.
I appreciated calls and messages when home from hospital. Sometimes I just didn’t feel like visitors. For Cameron and I, this was extremely hard because we did not have a support network in Bendigo of close friends and family. Sometimes we got lonely, especially when both of us were experiencing different stresses which made our household feel like we were in a pot of boiling water. It was a difficult time and sometimes we just needed to vent to others who would just be there to listen…not offer their opinion….just listen. Other times, for me, I felt crowded by people not knowing the best way to help me with my impaired vision. For me, I needed to learn how to do routine tasks again so I could manage the daily routine. This gave me a sense of empowerment and someone overshadowing me and trying to take over felt patronising and condescending. Harsh I know, but when emotions are high we do tend to think things out of proportion even though the people trying to help have the best intentions. I would snap at them because I didn’t know how to communicate with them. What I found most helpful was for people to ask if I needed a hand or assistance with routine chores or guiding me. If I hadn’t have lost my vision and just had a new baby to look after, I would have lapped up any help with household chores, however in my case I needed to do those household chores to function independently as a blind mother.
Cook and fill up the freezers! This was one thing Cameron and I were so grateful for. There were so many nights after surgery where I was just too tired to learn how to navigate the kitchen, let alone cook. Having our freezer full of food, so we could quickly prepare dinner was a godsend. Enough said!
I found it very therapeutic to be able to get my thoughts out to anyone who was prepared to listen. For me, my best friends and my mum, dad and brother were the people that I felt comfortable telling everything to where it didn’t feel forced. Cameron had enough to deal with and I didn’t want to add extra pressure on his shoulders. My best therapy sessions were with my girlfriends and my daily chats with my mum. I know if the boot was on the other foot I would be there for them. Everyone grieves differently, so telling someone how to and how long they need to grieve for isn’t necessary. For me I experienced so many different emotions, some I hadn’t even felt before. There were days where I would be so frustrated with myself because I couldn’t find something or struggling with grappling a new task. I would swear and cry and tantrum. Sometimes blaming others, particularly if something was rearranged out of my order without me knowing. I had become a control freak simply to feel a sense of order in my daily life and routine. Other days I would be wailing and curled up in a ball. At times I was in denial and hated it when I was told I needed a carer because in my mind I knew my end goal and all I wanted was just someone to help me for a few weeks while I got my life on track. Thanks mum! Grief is such a confusing time. I didn’t know myself from one minute to the next. Grief and stress can have massive effects on your mind and the way you articulate yourself. I know now after self reflection that people had the best intentions and cared for me. None of us knew how to handle the situation. It was unique and new to all of us.
I am a driven and determined person. I am really proud of how these traits have served me over the last twelve months. I believe I have been able to articulate my needs as a legally blind person. I found this difficult in the early stages when I had so much going on in my head and a grieving period to cope with as well. I don’t know what life will be like in the future for me or if my vision will deteriorate but I am feeling positive about what lies ahead and believe I will lead a fulfilling and fully independent life.