Interview with Ami (Guest Post #23)

Hi Everyone, today’s guest post is from Ami. Be sure to check out and follow her on social media. 🙂

What is your name (or blog/channel name)?

My name is Ami and my blog is UndercoverSuperhero!

Age?

I’m 25 in January.

What is the name/cause of your visual impairment (or other disabilities that you may have)?

I have Bilateral Hearing Loss, Optic Neuropathy, Severe Nerve Damage, Sensory Ataxia, Transverse Myelitis, Raynaud’s Disease, Depression, Anxiety, and I have recently been diagnosed with Mitochondrial Disease.

How does your visual impairment (or other disabilities that you may have) effect you on a daily basis?

I have hearing loss to a degree; I can hear some things but I struggle when others are speaking. Optic Neuropathy (Central Vision Loss) means that the tissue behind my eyes, are very pale which leads to the loss of my central vision. These two impairments combined leave me unable to watch TV, read small pieces of text. Plus, I cannot see some facial features unless they are very close in front of me.

Severe Nerve Damage was caused by an untreated Vitamin B12 Deficiency. Transverse Myelitis caused me to lose all of my mobility, due to my spinal cord becoming inflamed. This also causes me to experience altered sensations in my hands; they feel like I’m constantly wearing rubber gloves.

Sensory Ataxia affects my balance, co-ordination and fine motor skills. The sensory part causes me to not be able to sense where my limbs are, unless I’m actually looking at them (with my good side vision). I can walk a few metres with my walking frame, but due to Sensory Ataxia causing muscle weakness, I become tired very quickly.

Raynaud’s Disease is where my hands, feet, and ears are oversensitive to cold temperatures, thus causing an attack where the blood vessels in my extremities (fingers and toes) become narrow and decrease the amount of blood flow. The attack causes sharp pains, very cold hands and feet. I sometimes have to wear gloves and ear cuffs in the summer!

My recent diagnosis of Mitochondrial Disease came after a muscle biopsy discovered a mutation on one of my genes’. I’m still learning about this disease, but so far, this is possibly the cause of my Sensory Ataxia, Optic Neuropathy and Bilateral Hearing Loss – it’s difficult to say how Mitochondrial affects me symptom-wise as, for me, it’s most likely the cause of 3, possibly 4, of my disabilities and impairments.

I’ve had Depression and Anxiety for just over a decade, it’s definitely improved over the years and despite all my disabilities, I am generally a happy person and try to remain positive. However, due to flashbacks and certain life events, I can experience bad bouts with my Mental Health.

Ami

What do other people feel about your visual impairment (or other disability that you may have)?

I’ve never been asked this before! I think at the beginning, of my symptoms, my family didn’t really understand what was happening, which to be fair, nor did I. However, as I slowly learned to adapt, they started to adapt to my disabilities and impairments too. As soon as they realised that, deep down, I’m still the same Ami, they didn’t treat me any different and we could move forward.

If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have) What would that be?

My advice would be – I know it seems scary right now, that’s normal, but as you learn to adapt to your disability or impairment, you will learn that the world around you can be adapted too. Just take one day at a time.

Who has inspired you the most in life?

Growing up, I never felt I had anyone to look up to. However, that changed when I fell in love with superhero movies. Superheroes have their own issues to contend with, but they push them aside when they save the world. They don’t let anything hold them back.

Who has inspired you for your blog or YouTube channel?

Sam Cleasby, a radio presenter and activist who blogs about life with Inflammatory Bowel Disease and Ulcerative Colitis, inspired me to share my recovery story through writing and I’ve not looked back since.

Besides writing or making YouTube videos what do you like to do in your spare time?

Besides writing, I love volunteering! I volunteer as one of Scope’s Online Community Champions, the role includes welcoming new members, signposting members to relevant resources which may be of use to them. Try to answer any unanswered posts, flagging up posts which suggests the member is putting themselves or others at risk. Reporting any spam and generally keeping the community a safe and supportive place for everyone.

I’m also the Leader of Ataxia UK – Norfolk Branch Online Support Group on Facebook, it is quite a quiet group but I’m always on hand if anybody has any questions or needs any support.

Name a bad habit that you have?

Not writing something down while I remember it! Otherwise, its forgotten.

Name your best quality?

Strong – not physically! But strong within, I have had a tough few years but it’s made me a better person and I wouldn’t change a thing.

If you could interview anyone living or dead who would it be and why?

Tom Hiddleston because he is incredibly passionate about each role he portrays; I’d love to find out what inspired him to become an actor. Also, I love his dedication to charity work. He is handsome too!

What is your college major/minor?

I didn’t attend college.

Why did you choose the title of your blog or YouTube Channel?

I love superheroes and as cliché as it sounds, UndercoverSuperhero just popped in my head when I woke up one morning.

When and why did you start your blog or YouTube channel?

After writing my first guest post, for Scope, it inspired me to write about my recovery journey. UndercoverSuperhero began in October 2018.

Where do you see yourself in five years?

I would love to become a Wedding Planner within the next 5 years! Regarding my blog, I’m enjoying watching it evolve; I like to be spontaneous with it. In general, I hope to still be taking each day as it comes and making the most of my life.

Where can other people find you on social media? (Please list and provide the links.)

My blog – UndercoverSuperhero – https://undercoversuperhero.com

Facebook Page – https://www.facebook.com/UndercoverSuperheroAmi/

Twitter – https://twitter.com/AmiHIreland

Instagram – https://www.instagram.com/undercover_superhero_ami/

YouTube – https://www.youtube.com/channel/UC0zcvNOK_xw56IZ-Ab790kA

Pinterest – https://www.pinterest.co.uk/USuperheroAmi/

 

Author: Amanda Gene

Hi, welcome to my website. My name is Amanda Gene. I am a disability and mental health freelancer. I would love to work with your company and I provide writing on a variety of topics on disability and mental health. Feel free to contact me via email at: Amanda@amandagene.com

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