Last weekend, The Teenager spent his first night Alone At Home.
I was off to an MS Society meeting as a Council member, in Carmarthen, 64 whole miles away.
I planned to stay overnight on the Friday as we’d arranged to hook up with local peeps connected to MS that evening, before the meeting on Saturday.
So far so good.
Would The Teenager manage to hold the fort, feed the cat, lock the doors and hang up his towels for 24 hours without parental supervision? Worth a shot?
It started well: I’d booked an early train, smug in the knowledge that I could read my book whilst sipping a cup of coffee and admiring the beautiful coastal scenery from my reserved table seat next to the window.
The previous train was cancelled so when mine pulled up, it was a free-for-all. Elbows, swear words and shoving. I somehow pushed my way to my seat (now fully occupied, natch) and started to cry. Honestly. I went red, stuttered and pleaded. I explained the MS and nerve pain and I sat down in the vacated seat, embarrassed and humiliated.
Almost two hours later, I arrived, dragged my case and headed for a taxi. The hotel was up a steep hill and half a mile away, the sun was blazing and I was close to collapsing. Long story short, I was refused a taxi; my journey was too short. I offered to pay a tip. I explained the MS. Again. I was still refused.
Reader, I thought I was going to die. It took me almost an hour to stagger to the hotel. I stopped numerous times, heat intolerance bearing down, my legs yelling in pain. I arrived at the hotel eventually and crumpled in a heap at the reception desk. Not the best start.
Anyway, The Teenager. Throughout my epic journey, he’d been texting me:
‘Where’s my goalkeeper gloves?’
‘Can I order a game off Amazon? Got your credit card saved :-)’
‘It’s on offer :-)’
‘You know when I go to the Reading Festival, can I have some spending money?’
‘Can you transfer £1.28 to my account so I can buy a calendar for my phone?’
Back at the hotel, after lying down for an hour, I had a brilliant evening and went to bed looking forward to breakfast in the morning; there’s something about hotel breakfasts, with their mini pots of jam and rubbery scrambled eggs.
The next morning, I checked in with The Teenager:
‘Morning! Have you fed the cat?’
‘Nah. She’s dead.’
A bit later;
‘Mum. Ok if I have some friends over for breakfast?’
‘As long as you clean up. How many?’
‘We only have a tiny house?’
Our meeting went well and I packed my things together ready to go home. My phone beeped:
‘Oh yeah, I’m going to go for a world record’.
‘Most chicken nuggets eaten in 3 minutes.’
‘The current record is 31.’
‘I did 20 in 1:10.’
‘You looking forward to having a record-breaking son?’
What could I say? I got home, aired the lingering smell of bacon, eggs and beans and was greeted by a very-alive cat.
p.s. a follow-up – BBC Wales picked up the story of the taxi refusal and reported it here. Also, Carmarthenshire Council have traced the driver through CCTV and will be inviting him in for an interview …
My eyes filled with tears reading your post (and not because I thought the cat might be dead!). Been there, Stumbling.
Contact the relevant local authority (sorry, ignorant about Welsh geography) and tell them about the taxi company’s appalling policy. When the time comes for their licence to be renewed, there will then be a note of this failure to take note of the needs of a member of a minority group (sorry, but we are members of that group even if we don’t like the ‘D’ word!). Believe me, I work for Licensing in a local authority and there is a duty to take note of these things. I’m so angry about what happened to you that I just googled the relevant guidance and it specifically states “It is important that a disabled person
should be able to hire a taxi on the spot with the minimum delay or inconvenience” (Dept for Transport TAXI AND PRIVATE HIRE VEHICLE LICENSING:BEST PRACTICE GUIDANCE)
I have always found train companies to be very helpful. I tend to book wheelchair assistance in advance (even though I can usually walk) because you never know what you’re going to be faced with (broken lifts, long distances to walk). The conductors on the trains are informed that you’ll be there, so if there’s a seating cock-up like you experienced the train staff will sort it out (thus no embarrassment for you). The assistance person will bring the station wheelchair and wheel you between trains if necessary, and at your destination will make sure you’re in a taxi at the other end too and wouldn’t have abandoned you to struggle to your hotel.
That’s always been my experience anyway – please consider it before your next adventure. A brief moment of inner struggle (“but I don’t WANT to be the girl in the wheelchair, I’m a strong independent woman who can walk AT LEAST 20 feet!”) is definitely trumped by not having to worry about catching a fast connection with a 2 min changeover time, struggling with your luggage or negotiating rough terrain when you’re feeling wobbly or fatigued.
Sorry for the lengthy and somewhat rambling response. Like I said when I commented on your “not looking disabled enough” piece – I’m not going to let MS beat me, and you’re damn well not going to let it beat you 🙂
Stay cool Stumbling xx
What a brilliant comment, thank you!
I tried really hard to remember which taxi company it was that refused me but it could have been one of several? I think I was just so stunned to be refused, even when I was reduced to begging and offering a financial incentive. It was pretty brutal. And humiliating. I looked ill. I looked exhausted. And still no.
We’ve had similar problems in Cardiff, with taxi drivers refusing ‘short fares’ which has led to an increase in assaults to young female university students. I think it has now been banned by the council. So I kind of thought it would be the same across the country, that short fares should be accepted. I understand they’re in a line outside a station and want the longer fares, but I offered a hefty tip, so surely that should have been enough of an incentive?
I never ever want to go through that again. Believe me, it’s a steep hill and a few times along the journey I really did think I would have to lie down on the pavement and wait for an ambulance.
As for the train nightmare, that’s really interesting. I never thought about contacting them and asking for help as I’m not in a wheelchair, but next time I might just do what you suggest.
Thank you for your suggestions – I’m due to go to London in a couple of weeks for an MS Bloggers event and will certainly make use of what you mentioned – could make a huge difference. The problem with ‘invisible’ illnesses!
You’re a star,
Really sad and sorry to read this! As if things aren’t hard enough, someone comes along to stick the boot in over a few of miles! It amazes me how some people just don’t think things through. You shouldn’t need to even justify why you need a taxi. And then to tell him and get nothing is just mindbogging. Well done on powering through to get to the hotel though! I hope the pain has subsided now, I know it sticks around for me for a few days. A poor record breaking attempt lol but I live by the words? if at first you don’t succeed, try try again! Take care
Thank you so much!
It was incredibly difficult – I really thought someone who saw me in pain might have stopped their car and asked me what was wrong! As for the taxi bloke, I have no words.
I only wish I had taken note of his company.
It was a strange journey, having to identify myself, as an invisible MSer, as someone so visibly in need of support. Perhaps a learning lesson for me too? Always trying to see the lesson, lol.
What an awful experience for you. Aren’t people cruel?!!! Despite all you write about so fabulously …. keep well 🙂
Ps glad the cat survived 🙂
I was beyond shocked at the treatment. Still smarting even now!
Have to say, the staff at The Ivy Bush Royal Hotel in Carmarthen were amazing.
Happy to report that Bronte is doing fine despite the trauma of being at the mercy of The Teenager!!
Haha that’s good… I’m a great believer in Karma?? be afraid Mr Taxi Man??
May the sins of four girls puking in his taxi be revisited upon him ….
It could happen …
Yup report the taxi, if you took his number. I’ve never had problems trvelling by train. Do book a seat in advance via assistance. 24 hours is usually enough notice
Time you bought a Travelscoot
I think I’ll definitely ask for assistance next time – I was lucky I was able to battle my way through to my seat and then luckily the person sitting there actually moved for me. Many wouldn’t.
I have always found the Assisted Travel people on the train network very helpful without making a fuss and making you feel stupid?
I might just try them next time I have to travel – always been reluctant before but this just shows how much it’s needed!!
I love your blog!!! I am 22 years old and my dad was diagnosed when I was about 12. I don’t usually comment on blogs but I just really wanted to tell you thAt I think you are amazing! In the last 10 years I’ve always struggled with being a young/free and looking after my dad -its like I live two different lives. I’m naturally an athletic, adventurous,optimistic and spontaneous girl but since I was 12 my dad has always first in everything i do , and im alright with that… im happy to care for him, but it does make me incredibly sad. I feel like I can’t thrive and be me and spread my wings as far as I want to. However the parts where you mention “the teenager” have really made me feel like I’m not alone. I know you mention the teenager sparingly but it’s just given me strength to know that if some one else out there can do this than so can i. It’s made me hope that there can be a balance in my life where i can be young and free, that I can stretch my wings out and also still care for my dad…
Would love to hear more about how “the teenager” copes and thank you again for your fab blog!
Thank you so much for your heartfelt and beautiful comments – I read your email in work and welled up.
You sound like a truly incredible person. I’ve always felt sad that my diagnosis happened when The Teenager (Christopher!) was in the early stages of high school, such an important time for him. I tried to keep my fears from him, but when I was suddenly sacked for having MS, unfortunately he saw a lot of stress and angst.
We’ve always been open about stuff, but I try not to tell him too much – I’ve got a great bunch of friends for that :-). It’s really vital to me that he has his life, he only gets one shot at being a Teenager!
In a way, it has made us a strong team and I think it has also made him a ‘nicer’ person, seeing what it can be like to live with an illness that is random and sometimes cruel. I guess that’s why he’s always been a part of the blog too, and he absolutely loves being written about! He’s been involved in conferences, marches, awards ceremonies and other MS ‘activities’, so he has seen a positive side to things as well, i.e. making the most of life post-MS. It took us both a while and a lot of tears, but I think we’re getting there.
I really hope you can thrive and spread your wings. I’ll bet your dad would want nothing less for you.
Please keep in touch and let me know how you’re doing 🙂
On the other hand, people can be (embarrassingly) considerate. One day on Block Island, I foolishly thought I could walk around the centre of town, fueled by ice cream and occasional cool breezes. But the sun became very hot, and even the refuge of an store front made no matter. As I dragged myself (almost literally) to the ferry depot, a nice woman appeared out of nowhere and supported me into the shade of the depot building.
Dale Hay was kind enough to link me with your blog. MS is not restricted to one part of the world, alas. But it does mean we are never alone.
Great to hear from you and how lovely of my fellow book-club member to introduce you to my blog! And so true, we’re never alone with MS.
I do know what you mean – when I eventually got to the hotel, the staff there couldn’t do enough to make me comfortable, way and above the call of duty. From one extreme to the other …
Is that your story of this incident on the BBC site today? Still makes me so angry! It feels like we are constantly needing to convince some people that we have this debilitating illness.
Yup, that’s me! (looking rather ill in the photo – I was having a dreadful MS day :-()
Someone forwarded my blog to a friend who picked up the story and the BBC came out yesterday to interview me. Also, Carmarthen Council are going to look through CCTV today to try to track down the taxi driver and will let me know if they find him.
I’m just gutted I walked away. I was so tired, and so hot I didn’t have the strength to fight any more.
That’s excellent. People like him remind me of the things happening with PIP. its reliant on people not having the strength to keep fighting. You got the story out there though and brought it to people’s attention which is sometimes half the battle so well done to you and your friend. I’m hopeful the council track him down and maybe the taxi company will send him for a common sense exam before they let him drive for them again
I really hope so too – I didn’t fight back when it happened, but at least now, like you say, the story is out there.
It constantly amazes me just how rife discrimination is. Not just the big stuff, like me being sacked for having MS, but the more day-to-day stuff like being refused a taxi journey.
Terrible experience, Barbara, but fabulous to see you raising successfully the profile of paMS whose difficulties are hidden. I turned on my TV at lunchtime to see your story on Teletext! Let’s hope there are some positive changes as a result…..
Thank you Helen!
It was pretty bad, but it’s amazing how quickly Carmarthen Council have followed it up. They have found the taxi driver so I think they want to speak to him and find out why he refused the journey.
Great exposure on TV and online; great to keep MS in the news 🙂