Monthly Archives

July 2016

A positive outlook

By | Disability, Lifestyle | No Comments

My name is Alice and I am Belgian. As I am a french speaker, I will certainly make mistakes in this writing. But no worries, I will try not to torture you too much…

I have been diagnosed with syringomyelia at about the age of 7. I used to walk normally until I was 4 or 5. Then I gradually lost the strength of my muscles and today, twenty years after the diagnosis, I have been using a wheelchair for about eighteen years now.
I feel free since the day I started using an electronic wheelchair, thirteen years ago, in September. Since that day, I started seeing the world like never before. The world was all new for me, I finally could go alone to places I never imagined going to. Suddenly I was able to do things as simple as going to a bakery down the street and come back home, which was not so simple before. I became able to participate in the everyday organisation of my family’s life. That wheelchair made me decide to open up myself to people and meet some new friends. I realised what I was missing during so many years… Since then, I met many people: some are becoming friends, others are just there for a short term experience, and there are also those who bring unpleasant experiences, but I always learn something, because this is how I am learning to lead my life, day after day.

This journey on opening up myself and meeting people started two months before my 15th birthday. It started in my city, then in my country, by traveling from my city to others, until the day I travelled by train from Brussels to Somerset (UK) and stayed in a guesthouse alone in April 2015. All this would not be possible if I did not have this protective, kind and loving person who is my sister. She was there at the right time and is still there in every important step of my life. She always gives me a hand when I need it, she is the one who let me figure out that I can fully participate in organizing a family’s life, which was a concern of mine. The way she considered me, by trusting me, is the reason why today I can think about maintaining a family on my own.
I think that all of us human beings, with disability or not, need someone to make us see our potentials, our strengths and abilities in life, instead of our limitations. For me, my sister is that one.

Another thing that I learned is that when an unpleasant experience happens in life, one should find a positive aspect in it and consider it as something important. In other words, learning to focus on the positive aspect in order to make it the most important thing. And today, I consider myself as a happy person; not because now I have got everything, but because I enjoy being alive and I am doing what I can to get involved in things that I find important, like working on making Brussels more accessible to everyone.

I thank Enhance the UK for their amazing work, as well as for making it possible to share experiences among the people around the world, because a change can only be possible if we work together.

Life shaped by songs

By | Disability, Lifestyle | No Comments

New blog post from Gavin

“Cause I’ve started falling apart I’m not savoring life
I’ve forgotten how good it could be to feel alive”

These lyrics from the song Machines by Biffy Clyro feel like they really speak to me at the moment, representing how I felt when I woke up this morning. I can write a whole post on feelings of depression but I feel that is for a future post.

I have different songs which shall be forever be associated with different points in my life. Songs that feel like they were written specifically for me, for that moment, the afternoon I spent on the train to Liverpool to break up with my first girlfriend (we got back together later and subsequently got married, then I lost my hair and we got divorced. I’m not saying we got divorced because I lost my hair but there was definite correlation there) or the 90s emo classic Last Resort, It just felt like it spoke to me, okay?

“So why are you sat at home?
You’re not designed to be alone
You just got used to saying “no”
So get up and get down and get outside”

Reasons not to be an idiot by Frank Turner came out of nowhere to me. Listening to the radio back in February of 2009 this song really caught my attention. The awesome acoustic guitar and the lyrics that seemed to smack me in the middle of my forehead. My diagnosis with MS had only been given to me 15 months prior to that and whilst I still had my happy, smiley, beardy face to show everyone else, on the inside things probably weren’t that rosey for me. I fell in love with that song, it’s lyrics were exactly what I needed to hear at that time. In fact it’s still one of my favourite songs.

“Can we pretend that airplanes in the night sky are like shootin’ stars
I could really use a wish right now, wish right now, wish right now”

Airplanes by b.o.b. featuring Hayley Williams came to me at a trying time for me. I had finally managed to get back to walking without my crutches after working really hard at my Physiotherapy and I had even begun thinking that I might be able to get back onto the field and play some ultimate frisbee again (I was never particularly talented at the game, barely being able to catch the disc and with a 100m time of about 19 seconds, I was more a ‘tryer’) until my MS had other ideas and I needed to use a wheelchair once again.

A turn for the worse

By | Lifestyle, My story | No Comments

A couple of weeks ago, my health worsened dramatically and it changed me even more than my body did. The little steps that I walked, the spontaneous dances and my humour were suddenly not the things that characterized me.

I tried to stay positive and arranged a wheelchair from an local neighbor renting website. After two days, a lean and friendly man was standing in my doorway to retrieve the wheelchair.
With an upbeat voice he said; ‘Hi Naomi, I’m Thomas I heard a lot about you! Are you able to come downstairs to meet my wife Shannon?’

I truly wanted to go downstairs, especially since my girlfriend, Joy told me about their situation earlier. They are both diagnosed with the same illness I’m being examined for.

After I declined his offer he called his wife on facetime and we talked about our similar interests like gaming and arts & crafts.
They immediately offered us their help and we set up a dinner date to discuss everything that has to be done to make our lives easier.

In less than a week we moved into their home where I could use everything, from an electric wheelchair to a medical bed.
It was such a big change for us, overwhelming to be honest. We were used to our tiny room with all it’s flaws, the big stairs and the shared toilet I had to crawl to with all it’s three heavy doors. We even were used to the fact that because of all this, it had made my girlfriend more my care taker than the love of my life.

While days passed and the home carer came almost every day to do household chores, get Shannon dressed and help her back in her wheelchair. I more and more began to realize that there’s a big possibility this could be my future, more than I wanted to admit.
We shared so many similarities, that it frightened me to the core. Bit by bit I began to see myself as an disabled person, something I’ve been trying to deny for so long.

The days after that I saw myself struggling. I couldn’t laugh, listen or even just act normal. After a while I decided I couldn’t take it anymore. The changes, my illness and the people around me.

So we returned to that tiny room with just the two of us and our pet rabbit, Tina Turner. Watching the time pass by and trying to arrange all of our appointments ourselves. We are not experts in it, we don’t know what to do but, with my girlfriend cooking us delicious meals while she sings and me fighting for disability rights behind my laptop.

We are perfectly ourselves, and the obstacles are less important again.

a person holding a glass of wine, in their hand with a busy bar in the background

Should I book an escort for a night out?

By | Emily Yates, Lifestyle, The Love Lounge | One Comment

Hi Emily,

It’s been a while since I felt intimacy with a partner, and it’s bringing me down. Men pay for sex and companionship all the time, but the same thing doesn’t seem as acceptable for women. I’m really thinking of taking the plunge and booking an escort for a night out and then seeing how things go. Have you got any tips for me please?

Thanks!

M, 27.

Hi there, and thanks for writing in to us. I really admire your honesty for talking about what is still a taboo subject for women, especially if they have a disability.

Firstly, that gender stereotype with paying for sex MUST change! If it’s something that you are comfortable doing, and you’ve thought about any personal consequences it may have for you, go for it and have fun!! As with any date, I’d do some research and make sure the venue is accessible, if you require access, and I’d have some pointers in the back of your mind in case conversation dries up and you need an ice-breaker. Other than that, rest assured that this person is there to make you feel good: relax and enjoy! Depending on your impairment and needs, it might be good to discuss any ‘bedroom stuff’ beforehand, but that is at the discretion of the two of you.

Good luck, let us know how it goes…. 😉

Em x

Seeing past my disability

By | Emily Yates, Lifestyle, The Love Lounge | One Comment

Dear Love Lounge,

I’m finally getting comfortable with the online dating scene and really enjoying flirting again! I’m really struggling with something though: if a guy I’m talking to suddenly goes quiet, doesn’t reply or doesn’t show up to a date, I always think that it’s got something to do with my disability. How can I get out of this cycle of thinking? It’s driving me mad!

Grace

Hi Grace.

Thanks so much for writing in to us. It’s an interesting question and a tough one to answer, especially as I’ve felt like this numerous times before!! It may sound flippant to give you this answer but the fact of the matter is… If he is put off by your disability, he’s not the guy for you. That bit is easy. What isn’t quite so simple is allowing yourself to see past your own impairment when any negative situation comes your way. It takes time and some great experiences of positivity to change our outlook, but I can promise you that you have so much more to offer than just a disability, and there are plenty of potential partners that will recognise that. Make sure that you prepare well for any dates: wear your favourite outfit and promise yourself that you won’t beat yourself up too much if things don’t go to plan this time. Failed dates, double bookings and illness happen to us all – it definitely is not just happening to you!

I’m a great believer in not worrying about something you simply cannot change. What you can change is how much you’re going to let your hair down and throw caution to the wind on the next date… 🙂

Best of luck!
Em x

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