Hello, I'm Gans! — Scope | Disability forum
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Hello, I'm Gans!

Gans Member Posts: 3 Connected

Hej. Hi. Hola. And then some.

I’m Gans, I live in Oxford. I was born here and read Law here, but I’m not English. I’m European, openly gay, I loved travel, have enjoyed a relatively great life, filled with travelling around the world, enjoy breaking convention and a linguist.

I also have Chorea-acanthocytosis.

My life changed back in 2007, when I developed what I thought was a very bad flu, only to lose my voice and so much more. It has wrecked my life, and I decided to take a moment to introduce myself and reach out.

I have been trying to rebuild my life while my neurodegenerative disability, as the initial impacts was my career, my relationship, my voice and my home in New York City. 

Returning to the UK was very nice for me initially, but as my disability worsened I found that I was being pushed away from people that I felt were uncomfortable with my disabilities. I was unable to speak because of my Laryngeal Dystonia. I learned to speak with my epiglottis, and I am far more improved with my speech, but this came with a different sound to my speech.

Slowly I have become far more reserved and isolated. I have never been reserved except for my time at public boarding school and at Oxford University because you are expected to be more reserved, 

In spite of my difficulties with walking as well as coordinating my hands to do tasks like writing or tying my shoes I decided to transform my garden with the hopes of rebuilding my mobility and my self-confidence. The results are what you see above. 

At night I have incorporated lighting to create a secret garden that opens from my electric door so I can drive my mobility scooter into something more than just a neglected space. I live in a semi-detached bungalow, and with five years and a heart attack, some help from a couple of friends and avoiding going out to pubs and clubs I saved my money and created a space for making new friends. I also have been looking forward to trying to date again! 2020 was going to be the next chapter, and I made goals in trying to get back out in Social Interactions so I could make friends and maybe, just maybe, I would find someone nice to date.

Well no one saw 2020 coming! ?

I was informed about a Committee that needed some Legal Eyes to review a strange and worrying situation that was happening so far away from us, and I was asked to shield while I reviewed some material and offered my advice on this little problem. Little did I know that what I hoped would never reach us, but it did, and I have pulled back from the advice because I have Blepharospasm, Diplopia and only the companionship of my moggie, Sparky.  

Almost a year ago her partner in crime, Shabeen, died suddenly and tragically. The Veterinary Surgery suspected that someone threw some food that was poisoned with antifreeze, as they both stayed close strictly in the garden and in the house. I found some cat food thrown over the electric door later, and she had a routine of just checking out her garden as I prepared her breakfast with Sparky. It took very little time from her return for breakfast for the initial symptoms to show, and the speed of her becoming ill was heartbreakingly fast. When she wasn’t improving I called the Surgery. 

I informed them how long was she unwell they instructed me to just wait and see, as some cats can have a dodgy time, and since she was not that old I agreed and just did my best to make her feel better, but she only became far worse. And then she fell off of the climber that overlooked the garden and let out a horrific scream. When I got to her I picked her up and her paws were curled inwards and was violently ill. I panicked, grabbed one of the cat carriers and her favourite toys, and I drove as fast as I could on my mobility scooter through the City Centre and directly to the Surgery. I must’ve looked like a madman taking the quickest routes through the Colleges and to the Surgery. I dropped her off, providing the Vet about everything that I could tell their team about her condition. They told me that they were going to see what they could do, as there appeared to be something neurologically wrong. I thought to myself “I’m the git with the neurological disabilities! Thanks for pointing out the obvious!” The Veterinarian Assistant told me that I should just go home and they would keep me posted. 

With ironic timing the skies let loose, and perhaps out of a Divine Intervention the skies opened up and soaked me to the bone, but it also cloaked my tears as I drove passed my College and the others, along the busy streets of Oxford. When I opened my electric door to the garden I noticed what appeared to be tuna from a tin, and I tried to gather it up for the Surgery to test it, but the washed out remains were not needed, as her results from the test later affirmed it. 

This happened on a Saturday morning, and the kind man informed me that she was severely ill and dehydrated, but he would keep me posted. He rang me again on Sunday afternoon and told me that Shabeen was improving, but he was optimistic that she would pull through, but he wanted me to call at 10.00 Monday morning and he would show me how to feed her. He said that this was going to be a very difficult and long period of recovery, but I didn’t care. My cats kept me going when I had a heart attack right in front of them before, so I owed them far more than a little bother and a lot of love. I couldn’t sleep very well, but she was coming home, and Sparky slept along my side.

At 08.00 the phone rang, and I answered, hoping to hear that I could pop in early to bring her home. I ordered a van so I could focus on her instead of the driving with her in the carrier. “Hello, Gans. There’s no easy way to say this, but Shabeen had a turn for the worse during the night, and she was unable to hold herself up, so I was preparing her breakfast when I heard a very loud scream from her in the room next to me. When I turned the corner I found her unresponsive. I’m so sorry, Gans, but Shabeen has passed.” 

There was other pets that met the same fate, and we never found out who or whom were responsible for such cruelty, but I have Sparky by my side right now. I have been putting off my introduction for some time, and I don’t know whether people are homophobic in this forum. I am okay with it, and I’m not going to feel that I’m unworthy of healthy friendships or to be loved by another bloke. I’m kind, empathetic, humble and very capable of friendships and more. I’ve had to work hard in my life, and I have many friends around the world, but here in my birthplace my true friends have left this City for greener and more affordable locations. 

I wanted to introduce myself to everyone, be completely open and honest about my feelings and say that yes, I do feel forgotten and I’m tired of speaking to Sparky in Danish. I don’t want to get to the point where she speaks back to me in Dansk! 

On the 22nd it will be one year since Shabeen’s passing. I will always love her, but  I feel like I am a ghost in a place that is so obsessed with the wrong sort of attributes. Youth and entitlement are quaint but fleeting. I almost entertained the idea of going on one of those reality programmes like First Dates, but then I realised that I don’t fit the demographics. 

And please, no, not Naked Attraction! There’s no way that I can stand still without losing my balance and shattering that glass box, sliced up like bread at the feet of a well-fit Rugby Hooker! I would be on Gogglebox forever!

I hope that this provides a little insight about me. I used to skydive, bungee jump, ski and trek through the Milford Trail in New Zealand. This was far more intimidating.



  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    edited October 2020
    Hello @Gans and what a beautiful introduction you have given us.  I'm chuffed you took the plunge and posted, we are so happy to have you here!

    I really admire how you have dealt with the diagnosis of Chorea-acanthocytosis.  I'll admit it's something I'm not familiar with and intend to do some google research on.  Has your medical treatment or care been impacted much by coronavirus?  I hope it's being managed well.  We have a neurological conditions board that you might find an interesting read.

    Also, bravo for you going to Oxford university to study law! That's a real achievement.  Have you nearly finished your studies and what do you hope to do in the long-term as a career?

    I am so sorry to hear about Shabeen.  You really conveyed how much you loved her and I am sure she was one heck of a lucky cat to spend her life with you.  I have three cats and I'm an avid cat person so completely get it.  My oldest Frank is 14 now and I'm dreading the day he leaves us  <3

    Please let me know if you need any help on the community.  Have a great Sunday! 
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  • janer1967
    janer1967 Member Posts: 16,311 Disability Gamechanger
    Hi and welcome in board look forward to seeing you around 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    edited October 2020
    Hi @Gans - & welcome to this friendly & supportive community. Thank you for your really interesting & informative first post; it's good to 'meet' you.
    I'm another cat lover, so I'm so sorry to read about Shabeen.....it's hard to understand why people do such cruel things, & she was obviously a big part of your life. I'm sure Sparky misses her too.
    My cat, Shadow, was abandoned near me as an about 3 month old kitten, with her Mum & sibling. She has decided to stay, & manages to own me quite well. She's very mischievous, & has managed to bite through a mains cable to my media file converter, & some wiring on an anglepoise lamp, & has bitten through a phone charger. Last week I had to buy a new kettle, as, guess what, she'd been nibbling through that cable too!! She must be 20 months old now, so hopefully she's got many more years of destruction to plan.
    I also love gardening, so appreciate the work done in yours. You certainly have created somewhere lovely to be outside, & I think we've all needed that recently. I grow a mixture of flowers & vegetables, &, as I rarely get out, my garden has really helped me, especially this year.
    You have already done a lot in your life, & it seems like you have more planned. Despite all you've gone through in recent years, you seemed to have kept your positivity, & sense of humour, both of which are appreciated here. So, thank you for joining, as it seems like you'll fit right in. :)
  • Tori_Scope
    Tori_Scope Posts: 9,505 Scope online community team
    Welcome to the community @Gans :) Thank you for sharing your story. I look forward to seeing you around!
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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Welcome to the community @Gans! Great to have you with us. :) 

  • Gans
    Gans Member Posts: 3 Connected
    新年快乐!(Happy New Year in Mandarin)

    I must apologise to everyone that responded to my introduction. Since October I have been so busy reviewing the Brexit Agreement and submissions for the Scientific Advisory Group for Emergencies regarding SARS-CoV-2 (Covid-19). It's an unappreciated review because they see me as nothing more than a token disabled gay barrister.

    I have been battling my disabilities recently as well. I have already had two narcoleptic events typing to everyone already. Everything goes blank, and when I come out of it I either have my mobile in my hand with some characters on the screen that to my best knowledge holds no equivalent translation into the languages that I have been raised with or acquired through my life (I'm undeniably European); or my mobile has dropped to the floor.

    Coordination and Concentration are okay for a brief periods, but blepharospasm and diploplia demands focus. I'm trying my best because I practised Law for many years. Battling Chorea-acanthocytosis and hoping to meet a nice man who can see through my disability has its challenges.

    I need some help to make space for empathy and the ability to see the man inside. I tried to find a friend to be my ‘Social Bubble’ was a painful lesson in how shallow people can be. For a year I have had my moggie Sparky as my sole companion.

    My closest friend here in Oxford suddenly ghosted me, and he intentionally did it to my face two and a half years’ ago. He went from staying here at mine for at least two nights a week to a text message shortly after ghosting me, telling me that he didn't have the time to be around me. 

    Last year, just before Halloween he texted me to inform me that his father passed and that he was very sorry for what he did to me. He said that he missed me, and so I thought that we would work through what happened to him. He never spoke to me nor come to see me still for years but after a few weeks, I received texts for a short time. Regrettably by the Christmas Festive Season, the texts stopped again, and I have not heard from him since.

    To clarify how we were is best summarised as a very strong friendship. He identifies as straight, and I am ok with that. I never attempted any sexual advances with him because I respect him and never want to initiate such an action. He said that if he was gay he would want to be with me, but I never understood why he thought that he needed to say that to me. If you replaced that with any other designation you can begin to understand that it is a Red Card Moment. (The Offside Rule)

    So I am trying my best to live life on my own. I've tried dating sites, but those are more about just hooking up. I am not a game for casual intimacy. I was told by another bloke that he wanted to be pen pals. Pen pals? It was the strangest idea because that's more for the Youth and possibly Young Adults.

    Why do I find that even a friendship is far too much for today's society? It reminds me of the ugly days when HIV was a death sentence before the development of antiretrovirals. I am HIV-, but I never stopped being a friend to people whatever their status or their disabilities. I am a good person, and I don't believe that I should compromise extending my bond of friendship based on their health.

    I'm concerned about those that have passed the initial phases but continue to exhibit a wide array of residual disabilities for about 20% of those first stage survivors facing a potentially difficult path of Chronic Long Covid. This does not include the impacts of mental health because of this Pathogen.

    For this I am not stating these concerns from just a disabled gay man that has read Law. I am speaking to our common decency as people with compassion and empathy that are unable to perform duties due to their incapacity has been delivered an undeserved animus. This is why I was asked for my opinion. It comes from the example of a strong advocate who was the Minister for Disabilities, Baroness Jane Campbell. It is her advocacy that inspires me to endure the extreme discomfort and lend my forced voice to those that don't have it. For the first three years, I also struggled with articulating in a clear voice, and I still battle this 13 years on. I push myself to the limit, pro bono.

    Stay safe. Take care.


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