Thursday, 10 October 2013

My Sight Loss Story

I was born on November 8th, 1988 at Hope Hospital in Greater Manchester. I was a premature baby of two months, weighing no more than a small bag of sugar. Quite surprisingly no tests were done to see if my sight and hearing were in perfect order - something that is compulsory nowadays for newborn babies, especially premature ones - despite being in an incubator for quite some time and being monitored constantly.

When I was a toddler, my mum knew that something was wrong. I was always walking into doors and walls, falling down the stairs and barely responding to her when she would talk to me or say my name. She would persistently contact our local doctor, who would tell her that everything was fine and that she was worrying too much as a young mother. 

When I turned 4 years old, my mum went back to my local hospital and it was discovered that I had both sight and hearing loss, suffering with cataracts in both of my eyes and perforations in both of my ear drums, that were overlooked when I was born. After some discussion between doctors, it was decided that they did not want to operate on my cataracts and wanted to wait until I was an adult in my early twenties.

Unhappy with this, my mum paid privately to see a Specialist for a second opinion who identified that I had congenital cataracts in both of my eyes, that were formed in the womb and present at birth, and needed to be operated on as soon as possible to improve my quality of life. The Specialist referred me to Great Ormond Street Children's Hospital in London, where I would stay for weeks at a time having operations to remove my natural eye lenses and attaching interocular implants, or plastic lenses, instead. Operations had to constantly be repeated, as clusters of Elschnig's Pearls would continuously grow behind my implants, causing a further decrease in my vision. I also had an Iridectomy, removing part of my iris, to further help with the removal of the pearls and to allow light into my weaker eye for the first time.

I also had additional appointments at Great Ormond Street Hospital for my ears. I had regular hearing tests to measure my hearing loss and numerous operations to improve my hearing as much as possible. I had grommets inserted into both of my ear drums on two separate occasions to relieve the build-up of pressure and fluids, and a myringoplasty performed on both ears to close the perforations in my ear drums. Unfortunately, the perforations formed again until they started to heal naturally when I was a teenager.

My mum and I continued to travel down to London to Great Ormond Street Hospital, and later Moorfield's Eye Hospital, for my appointments until I was almost 17 years old. In late 2006 I was then discharged back to Manchester as I no longer fit into the age bracket to keep visiting Great Ormond Street. I will never forget the hard work and dedication of the doctors and nurses there, where I spent a huge portion of my childhood, and my mum and I donate to them whenever we can. They did everything they possibly could to help improve my vision, my hearing, and my quality of life.

After being discharged back to Manchester, my ears were left unseen to for a year and, in early 2007, I noticed that I was suffering from a terrible pain in my left ear. After visiting my GP I was forwarded to Trafford General Hospital - where they discovered that I had Mastoiditis - an inflamed and infected inner ear. It needed to be operated on as soon as possible, as I would have suffered paralysis and other life-threatening complications, including; blood clots, meningitis, and brain abscesses if left untreated. I had a cortical mastoidectomy operation to remove the infected mastoid bone, ear drum and the majority of my middle ear structures. A new ear drum was created using skin from behind my left ear.

In early 2008 I had an operation to correct the squint in my left eye, a squint caused by the almost total blindness in that eye, making it hard for my brain to control where it moves. I had to be awake while the sutures were tweaked and pulled around and, unfortunately, the operation was not a success and my squint started to emerge again after only a month.

I received my first hearing aid for my right ear in July 2011, and I will never forget the first time I placed it into my ear and switched it on. I could hear so many new sounds that I could never hear before. It was a long time coming for my first hearing aid, as I was 22 years old at the time and Great Ormond Street Hospital could not permit hearing aids to me, as I did not live in their local area - having always travelled to London from Manchester.

A mould was taken of my left ear in early November and I received my second hearing aid, for my left ear, on the 18th of that month. Having both the left and right hearing aids working together, and having my hearing amplified for the first time in my life, was the most amazing experience and something that I will never forget. I felt like I was living in a brand new world full of exciting and colourful sounds!

In early 2013 I returned to Manchester Eye Hospital, to discuss having further treatment for the squint in my blind eye, and my mum pointed out a Henshaws side-room near to the main waiting area. I'd never heard of Henshaws before, so thought it would be interesting to talk to someone inside the room and see what support would be available. I met a patient support worker, called Maggie Harrison, who upon ringing Social Services found that they had no record of me. This, unfortunately, was the truth. Since being registered blind at only 4 years old, I had received little to no help or support. I had, pardon the pun, stumbled blindly through my life up until that point for 24 years. I only ever had my mum to support me.

Thanks to Maggie, Social Services were finally aware of me having slipped through the cracks for so long,and in need of as much support as possible, as soon as possible. I received a home visit not long afterwards and had a hearing loop fitted into my living room - allowing background noise to be eliminated when listening to the television with my hearing aids - as well as a new smoke alarm fitted that connects to a device under my pillow that will let me know when it sounds off,  as I wont be able to hear the alarm without my hearing aids at night, along with some other useful aids around the house. I was very pleased with their visit and couldn't thank them enough for their help!

In the summer of 2013 I attended a Living With Sight Loss enablement course at my local community centre, forwarded to me by Maggie. This was the first time I was able to properly meet and talk with other people visually impaired people. I was extremely shy and very nervous to start with, having a few minor panic attacks beforehand, as previous to the course I rarely went out of the house - especially to new places. I was so isolated and felt very much alone with my visual impairment as I got older and left high school, so it was a huge shock to be in a room full of new people I had never met before, without my mum by my side! She wanted me to do the course independently to help build up my confidence and make new friends. After high school had finished, I didn't have any friends at all as I mostly stayed in the house apart from when I had to attend hospital appointments.

Over the course of the 6 sessions we found out about all sorts of new things such as; LED magnifiers that are available to aid with reading, equipment for in the kitchen and around the house, useful computer aids and magnification programs, information regarding public transportation, a session with local police officers, a visit from a Guide Dog owner describing her experiences and how her life has changed dramatically from her working partnership with her Guide Dog, and so on. I enjoyed myself immensely, much more than I thought I would, and it was something I began to look forward to every Thursday morning. I managed to find a little bit of confidence along the way, and was able to speak more freely to people towards the end of the course.

I also met quite a few important people at the enablement course who are now integral to my life. Lisa Young, who ran the course, is now my Daily Living Skills enablement officer. She supports me and helps me to learn kitchen skills safely and independently on a regular basis. These skills include; pouring liquids safely using the liquid level indicator, using the kettle, microwave and other appliances independently with the help of bump-ons, and then progressing towards peeling, chopping and spreading to prepare meals for myself for the first time. Lisa introduced me to the Henshaws charity and forwarded me onto some of the courses that I now attend every Friday, including Braille and arts & crafts sessions.

Lisa was helped on the enablement course by a volunteer called Sarah Strutt, who is also visually impaired and volunteers with Henshaws. She is my closest friend and helps me with my Braille progress. I also met Debbie Carmichael on the course too, who brought in a range of different canes and mobility aids, to show us what can be used to help identify obstacles when out and about. I now have my mobility training with her using a long cane.

In September 2013, I visited the Guide Dogs' Open Day at the Atherton Centre in Manchester. I was so inspired by the story of the volunteer at the enablement course, that I wanted to visit the centre and the kennels to witness the work that they do first-hand. I met a patron of the charity along with the boss of the Atherton centre, Richard, who filled in my application form for me, as well as a puppy walker and boarder who helped me to locate the centre - as it was very busy and I couldn't get my bearings! I met with another Guide Dog user inside the centre, whose experience echoed that of the previous lady who had visited the enablement course in the summer. She explained how she was now brimming with confidence and could go anywhere she wanted in the knowledge that she had a constant companion - things that sound like a dream come true. I applied that day and will receive my first home visit very soon!

My life has dramatically changed over the course of this year thanks to Henshaws, my daily living skills sessions with Lisa and my mobility sessions with Debbie. I am slowly becoming more confident in everything I do, and am learning so many new and exciting skills. I have friends for the first time, since leaving high school 7 years ago, who all understand perfectly my situation and who are understanding and supportive. I am so thankful for the support I am finally receiving and I hope to one day much more confident and return my gratitude through fundraising and volunteering for sight loss charities, especially Henshaws Society for Blind People.

I am a completely different person to who I was at the beginning of the year, and I feel like I'm finally starting to live my life with my visual impairment.