4+ weeks later...

A lot of people take life for granted, including me. Not always though.

To some people, driving a car is nothing amazing but it’s very different for me. It’s a luxury and good investment for me. Also it’s a miracle for me. It means more freedom and independence.

Why? Because I never thought I would be allowed to drive. Some of you know I’ve got a rare condition, K.I.D Syndrome, which mainly affect my skin, eyes and hearing.

Before you smart arses say anything, I’ve had my eyes checked before I had the go-ahead to learn to drive. I go for eyes review appointments very often, as it’s a requirement due to K.I.D Syndrome.

With my rare condition, I could go blind or have limited sight. So maybe you all won’t be surprised why I MUST makes the most of my life. Including going on random wee drives to enjoy the views. Or jump in my car for no reasons. Volunteer to be designated driver on night outs. Happy to give lifts, especially to people who have given me lifts many times before I passed my driving test.

It has been a real learning curve since I passed my driving test as I was getting used to a new car and I was used to my instructor’s car. Learning about my car’s vibrations & sounds, getting to know what was good and bad. Learning about how to look after my car, topping up windscreen fluids etc. Still haven’t clean & hoover my car since I got Snowy! Haha

Sure people say having a car would be like your best friend. It’s very true in my case. It has been a lifesaver for me. Getting around is easier now; I don’t have to rush getting two or more buses/trains for work!

But for me, it has changed my life. Why? Because some of you know I have mobility issues, thanks to osteoarthritis. Basically because of that and K.I.D Syndrome I’m in pain 24/7 I don’t complain about that because I am very lucky so far. I’m still alive and walking. I still can see the world. I’m not in hospital with deadly skin infections at the moment. I can hear with the help of hearing aid and enjoy music. I also can enjoy music through vibrations, whoo!!

The point is that there are always people who are worse off than us. I always remember that on my bad days.

I’m sure a lot of people know I LOVE travelling so I’ve seen quite few things that made me sad. Seen poor but happy people with their simple things. Every time I come home from my trips, I always feel lost because I am so rich compared to some people in the world. I mean rich as in having a home, family, friends and love and many more.

So Snowy is my best friend and I’m much happier now I can get to my medical appointments easily, especially in winter. So bring on winter, I’m ready for you!!

I normally have a nap every few days so I can survive my busy life working and helping people no matter how much pain I am in. But now I don’t have much naps as before as getting around is much easier now I have Snowy. It takes too much energy to get around when I am in more pain than usual because buses and trains don’t stop directly at places I want to go to. I usually have to walk to train stations or bus stops. Also walking around in rainy & windy weather use up more energy, well for me. So I hope people appreciate why Snowy is my miracle. My baby & my best friend! 

People can feck off if they get sick of me going on about Snowy, they can’t understand it really. Don’t understand why my face light up when Snowy is mentioned. They never have walked in my shoes.

Thank you for putting up with my Facebook statues about Snowy & staying patient with me when I stall in my car. Also thank you for reading – I do like to talk rubbish or rant a bit. 

Bye for now

Learning to drive: driving tests & Snowy

Kelly Gorman, Northern Ireland, profoundly deaf since birth and sign language user

I had a driving lesson just before my driving test to warm up but still got nervous! I didn't know what to expect when it was time to arrive at the test centre after what happened on my first driving test! Major communication breakdown on my first driving test.

After being stressed for a while I told myself that I didn't care if I fail my driving test again so I didn't apply so much pressure on me. I still ended up being nervous not knowing who I would get for my driving test. Thankfully my examiner was so lovely and I understood him.

It was clear that I was nervous but my nerves soon disappeared when I started driving and could understand my examiner at the same time. The examiner could tell I was nervous I'm sure! I could tell by his facial expression and body language :) 

Ended up stalling at the traffic lights with cars waiting behind me, I thought SHIT!!! But I stayed calm during stalling so I started again and checked the mirrors etc trying my best not to get frustrated at myself. That was hard haha. My test was at 3.50pm so I expected a bit of traffic. Traffic = a lot of stupid impatient jerks but thankfully it wasn't so bad yeooo!

Admittedly baby tears were running down on my face when I realised I did actually passed. I gave the examiner 'Are you serious?' look. About 5 minutes later, when the examiner was doing the paperwork, I realised baby tears were running and I couldn't stop. I thought 'FUCK' I wasn't going to do this but I couldn't help myself. I was SOOOOO relieved to have passed and never have to do driving lessons & tests ever again. No more stress. It was OVER! How embarrassing!

Now I absolutely LOVE driving my car Snowy. I did feel weird and nervous driving on my own for the first time after passing my test. My confidence soon increased day by day and went on the motorway 3 days after passing my test for NDCS event.

Learning to drive: discrimination

Kelly Gorman, Northern Ireland, profoundly deaf since birth and sign language user

Discrimination and driving lessons: MAJOR learning curve! It left me determined to do something for deaf people who want to learn to drive but now I’ve passed my driving test I don’t know what to do next for deaf people who want to learn to drive. We, deaf people, know we face discrimination daily and can’t change the world by ourselves if we don’t always get the support and help!

The real challenge was finding someone who would take me on. I waited a while to begin my driving lessons after passing my theory test as I was away for a bit.

There were quite few negative replies saying they refuse to take me on as their pupil. I only mentioned I’m deaf, most of them didn’t bother to ask me questions such as if I can lip-read or hear using cochlear implant/hearing aids.

Some of them didn't bother to reply back to my emails & text messages. Do the word 'deaf' scare them or what?! Pathetic! They should be ashamed of themselves. I would love to name & shame them! But I’m better than them :)

I never want to take driving lessons and tests ever again. Happy to have passed my 12353456576554 tests(!) Would love to see driving instructors on the road and look them in the eye knowing I'm in my car, having them realising they shouldn't have turned me away and that deaf people CAN drive :)

Trying to book my driving tests were a complete nightmare. I wanted to book them online but wasn't allowed because apparently I 'need' extra time for my deafness. Pfft!

I rang few different people to talk about driving test and trying to book it. I got told many different things by a lot of different people(!) So I complained and asked to talk to their manager/boss. My phone bill was high that month! :) I soon got furious when I read what they said to me and I then ranted to them on the phone, sorry but not sorry!
PS I rang them using my mini com & type talk 

What I got told: If I turn up at the test centre without booking extra time they would turn me away resulting in a fail and a waste of my money, and that I need to have extra time because the examiners would need it for paperwork. I didn't understand that part. I got told more silly stuff. I made sure they knew I was furious at what they were saying to me. So I went on and on about wanting to be equal as hearing people and asked them to explain again why would I need extra time when I didn't ask for it. Sure some deaf people might want it but I didn't want any extra time. I didn't want to be stressed on my driving test day but I ended up being nervous wreck remembering what I've been told on the phone.

I was always confident with my driving but did make silly mistakes on the test because it was horrible not understanding the examiner. Major communication breakdown resulting in me being so distracted and worrying about the examiner. There's not enough deaf aware examiners unfortunately. I wasn't surprised to hear that I failed.

Driving instructors did make me feel like being deaf was hard work! Lost confidence few times that I actually wanted to give up. I'm saying it again: there are not enough deaf aware examiners and instructors. 

During the process of looking around for instructors to passing my test it wasn’t my job to reassure people that I don’t bite and I can drive.

I had to get a car early before passing my test to keep me motivated. Even named my car Snowy haha and just thought of Snowy many times during my driving lessons & test so I didn’t give up. Thankfully I didn’t give up and love driving Snowy around. 

Learning to drive: driving lessons

Kelly Gorman, Northern Ireland, profoundly deaf since birth and sign language user

I booked driving lessons before I went away on my trips. As soon as I got back from my trips, I started my driving lessons. First lesson I thought it was okay until the instructor finished the lesson an hour early and booked me in for two weeks later. Just before the second lesson I found out from the driving school that the instructor ‘decided’ he wasn’t confident in teaching a deaf person, me! Oh nice(!)

Started getting stressed as I didn’t want to wait long to have lessons again. I went on social network websites to see who often update their driving school pages/websites. I noticed a few of them do update their pages/websites often so I contacted them knowing they can see my messages. It worked because one of them replied back to me asking suitable questions. Once I answered them, he replied if we could meet up. We met up not long after and communication was great – he didn’t know sign language by the way but I could lip-read him. He had confidence in teaching me to drive.

Coping with the lessons and learning how to drive I lip-read in the lessons, I studied materials on his websites and also his i-Pad was used to show me stuff like driving around the roundabouts so it was visual and make it more easy for me to understand how driving work on the road etc.

It did take me a while to work out other ways of feeling the bite. Eventually I found a better way to feel the bite. At first I could tell by the car slightly moving but it wasn't the best way because I found I couldn't react more quickly as I spent too much time looking for the bite. Soon later I realised I could feel the bite through feeling the steering wheel which was the best way because I soon reacted more quickly on the move. Everyone's different. Some people rely on the sound of the engine. Some people rely on the vibrations on their seat. Mine was feeling the vibrations on the steering wheel. There's other ways too. 

Communicating whilst driving wasn't too bad. Extra car mirror was put on the window in front of me so I could lip-read the instructor whilst on the move. It was easy at first but then it soon got more difficult because I was getting confident driving on the road knowing what to do next without needing the instructor telling me what to do apart from giving me directions. So I had to keep my eyes on the road and we agreed to not talk much when driving. Instead he just mouthed short words to the mirror for me lipreading such as traffic lights go left etc or roundabouts 2nd left. 

Admittedly after each lesson I was so worn out because I was learning to drive as well as communicating such as lip-reading etc.

Months later I passed my driving test. It wasn’t the first test I took. I never want to take driving lessons and tests ever again. It’s in the past; I’m focused on the fact that my life is much easier now I can get around easily. Music blaring in my car, snacks ready to be eaten by friends and me, and charging my iPhone on the move. Life is good.

I may be deaf but it’s not my job to teach deaf awareness 24/7 I’m happy to teach deaf awareness when I’m hired to do it though.

Note to driving instructors all over the world okay I mean Northern Ireland :) we, deaf people, are paying you to teach us to drive yet you expect us to teach you a lot about deaf awareness. Pfft! It’s okay to talk about communication needs in the car.

Months ago, I got asked if I'm happy to take a part in some BBC show about learning to drive as deaf person. In the first place I said yes, but now I've no idea. Just wait and see.

Don't give up! 

Learning to drive: theory test

Kelly Gorman, Northern Ireland, profoundly deaf since birth and sign language user

I took my theory test in July 2014 and passed the first time easily unlike my driving test! Everyone learn at different pace but for me I found it easy I was more annoyed about the five weeks wait to take the theory test. I used CD-ROM ( Unsure if it’s the right word! ) I studied for a bit nightly for around a week then swotted up again just before my theory test.

I booked my theory test on-line unlike my driving test which i had to book via phone. I will explain in my next few posts. My test was taken in the city, I wasn't nervous at all but didn't get my hopes up knowing a lot of people have failed their theory test. I hoped for the best! I didn't tell anyone about my theory test so I went on my own.

I had to tell someone on the ground floor my name then my name was ticked off the list and I went upstairs for the reception. Once I signed in the reception, they asked me if I had anything in my pockets etc to make sure I wasn't cheating. Felt like I was in school! Haha

Then I was leaded to a private room, whoo, after confirming my name again. One of the female staff asked me if I wanted to use headphones etc I told her I didn't need it I would just rely on the screen to see everything. Then she left and I started my test. Finished early so I left my room and got told to go to the reception for the results. I tried to read the reception staff's faces to see if I have failed or passed but they didn't give anything away until I read my results in a letter they gave me.

I soon smiled when I saw I passed! Then the reception staff started to smile and I then left the building happy knowing I got it out of the way.

But the real challenge was after that, finding someone who would take me on. I waited a while to begin my driving lessons after passing my theory test as I was away for a bit.

In all, for my theory test, the process was great. It was easy booking it online and the staff were very nice. No interpreter were used as I didn't ask for one knowing I could cope.

2014, a big year!

I can say 2014 is one of unforgettable years!

2014 was both good and bad year but to be honest, it was a big year for me too. All these few simple things that have happened but built up to be a big year for me. So when I look back on 2014 I still can't believe what has had happened.

In January, I made one of my dreams to come true and that was going to Thailand! I knew going to Thailand would be a challenge as the country is so different from other countries I've been to. Different language and culture but I loved every minute of it! The flights were so long but nothing compared to Australia and New Zealand flights! The heat were mad but most of the time I coped, thankfully!

Whilst in Thailand, I got my belly pierced! I did want it done but at that time I was slightly tipsy and had it done before 12am haha! Life is too short, I find myself up for anything when on my travels, more than I do when I am home! I like to be out of comfort zone when on my travels. It's fun!

Due to me having a rare skin condition I've always thought I couldn't have tattoos. I even asked many specialists about possible tattoos and they all advised me to not to have tattoos. Of course, typical of me I didn't listen to them. I went ahead and got once more in February. I'm pleased to say nothing has happened to my tattoos. Now I've got 3 tattoos in total - want more but I'm saving up for a lot of things at the moment, boring I know! :)

In March, I got my ears pierced! Not normal lobe ones but triple forward helix piercings! It was quite sore for me as my ear is very sensitive and I knew it would take a while to heal. It did take a long time to heal as I keep getting my curls caught in my piercings which wasn't so fun! In the end I had to go back to change the bars to rings and let it heal for a bit before changing back to bars. Now I still have the bars in my ear all healed which I thought would never happen :) Happy days!

In May, I had my eyebrows done because I have alopecia. Getting it done was a bit sore but then I soon got used to it. And soon after getting it done I had a top up and enjoyed the rest of the year having a side fringe instead of a full fridge to hide my eyebrows or the lack of my eyebrows :)

In June, I started studying for my driving theory test after finding out in 2013 that I was allowed to drive, happy days! I didn't like the fact that I had to wait 5 weeks for my theory test. The waiting times are so silly. I went online to book the test but was horrified to find the times were rubbish so I had to wait even longer and finally booked my test for 31st July. Glad to say I've passed it first time around and started looking for driving instructors so I could start driving lessons in late 2014 after my travels.

I went to Australia in 2013 and loved it so much that I told myself that I would return there again one day. I did in September 2014 but went to Melbourne and stayed there for a week. I loved it there, I sure did make the most of my stay there which included meeting a friend and went on Neighbours tour and many more. I loved my stay in Melbourne, I am hoping to return there again one day.

After Melbourne, I went to New Zealand and travelled all over North & South Island with Kiwi Experience. I am glad I've experienced NZ, it is truly beautiful! Met so many awesome people. Took part in the Nevis Swing in Queenstown, the biggest swing in the world! By now, you should know I love extreme sports!

After recovering from New Zealand (Jet lag!) I contacted few driving instructors and started my driving lessons in November. I had two driving instructors because the first one didn't really work out so I got in touch with second driving instructor. Met up to discuss communication needs and more. Got on with him so the lessons were booked. Since then I never looked back and carried on with him. Confident with driving and look forward to having a wee car to do errands and maybe go on lovely peaceful drives! Looking forward to the day when I book my driving test and getting a car! :)

Many plans for 2015 and 2016, hope it will be good for all of my family, friends and me! :)

Being so rare....

I took part in Ichthyosis Awareness Month (IAM), posted IAM selfie and shared my story of living with K.I.D Syndrome. I learnt a lot and I'm glad I took part. It has made me think about my life and how I felt about living with ichthyosis. Now I've joined some groups on Facebook and read people's blogs. I know I am not the only one with ichthyosis and have similar experiences with other people who have ichthyosis.

IAM: It made me wanting to raise more awareness so there will be less bullying in the future, and no people will feel insecure, especially in their teens or starting out with dating etc. Sometime I talk about my life with K.I.D Syndrome in the hope of helping people. People often turn to me for a chat or advice because apparently I'm easy to talk to so I want to be the person people, with ichthyosis, turn to. I have ichthyosis so I could help out a bit. Maybe in the future I will do more to help people with K.I.D Syndrome and/or with ichthyosis but for now I'm doing my usual charity work with deaf and hearing children.

Now it has been 4 months since IAM, I had been thinking a lot and questioning myself a lot too. Looking back, I don't think I had ever accepted that I have K.I.D Syndrome, maybe because I did want to be 'normal' yet I also wanted to be different. Over the years, I've found my skin were getting more better and now I'm more accepting of my syndrome.

Years ago, I used to think it was so much hard work living with the syndrome but now it got much easier. I do have bad days when I get so fed up because I have to go to hospitals for my review appointments and going to the chemists for my prescriptions. Making sure I have enough prescriptions for travelling. Hated living with the syndrome when I learnt I wasn't allowed to drive due to my eyes. Thankfully I am now allowed to drive and currently looking into driving lessons.

Disliked the deafness part of K.I.D Syndrome because again, it meant ENT appointments. Also we don't know why my body rejected cochlear implant. Maybe it was due to the syndrome or something else. Currently I am going to my appointments to talk about it. Sometime I do wish I can hear and talk like hearing people. It just mean easy life. That is how I feel on bad days.

It made me think about how I behave when dating and in relationships. Living with the syndrome do affect my behaviour because I do worry about waking up and not having the chance to put my cream on before he wake up etc. Or him holding my hands when my hands are dry. Or even when my eyes are watering I get 'are you okay?' because it do look like I'm crying when I am not, maybe it's because my eyes are too sore or dry. Feeling embarrassed when I lip-read him wrong etc. Worrying about my cream getting on him leaving him greasy. Didn't feel feminine because of alopecia. Being bullied in the past did affect me.

Looking back, it was always me pushing people away in fear of them thinking I'm too much hassles. Thankfully I've been proved wrong many times over the years! More older and wiser now!!

I do love being rare because I like to stand out and be unique. But there are cons of being rare, not many doctors know about K.I.D Syndrome much to my annoyance. Not many people have the syndrome, so I can't talk about the syndrome and to share experiences. There's not much knowledge about the syndrome.

What to do about unexplained rashes I get now and then, is it related to the syndrome? Or it's just eczema - have been diagnosed with it but doubt it really. What can I do about it, but to try to have a good diet and exercise often. Going to the doctors to get steroid cream or medication for the itching and having to explain about K.I.D Syndrome to someone new if I don't see my regular doctor. Wondering whenever my skin is playing up, is it due to tattoos and piercings or what.

Now and then, I do think am I too personal, over sharing or what? But then some days I don't care if I share too much because it might have helped ONE person out there knowing they are not the only ones with K.I.D Syndrome / ichthyosis / eczema or whatever I have experienced in my life. I'm grateful for the internet because social media and blogs have helped me a lots and got me where I am now - bad ass lady!!!

Every year I look at my blogs & my life and realise that I have been through too much shit in my life yet I'm still here loving life, most of the time! I'm only human I do have bad days! My love of extreme sports and travelling has grown a lot. Some people think I'm annoyingly positive and happy. I thrive on challenges that come along in my life. I choose to look at the bright side and brush off annoyances rather than get sucked into the negatives.

Sure my life could be better and on bad days I feel like I'm a failure because I could have done more in my life but being me, I rather focus on the positives.

I have Ichthyosis but I don't care, I'm vain  Red face & red hair too, I don't care if it clash  Years ago people comment on my skin but now people comment on my hair. On way to work earlier, a stranger stopped me to tell me she loved my curly hair. Life is good  #ichthyosisawarenessmonth