An unexpected phone call at Christmas: A reminder to assess what’s important.

This started out as an article about the pressure of Christmas on people, the fact that people are homeless and dying on the streets (according to a recent report 600 last year) the consumerism, the waste and all of the negative things that this brings up every year. Largely this is due to me being alone this Christmas and wanting to shrug off the need for it, but everyone else is doing Christmas stuff, so I still feel like I should. Those problems I mentioned are real and do need further discussion, but have been discussed before. A couple of days ago I had an experience that made me reassess what I was going to write here.

On Sunday, two days before Christmas I received a phone call. This was from a young woman who was in hospital with her twin sister, scared, telling me they didn’t know why they were there and they were forced by a doctor who lied to them and they were being judged by the staff telling them they were unable to look after themselves.

Before I finish explaining that, I need to back track to explain why they called me.

Around 7 or 8 years ago in my previous job, one of the employment support workers came to me to ask for support with the twin sisters, she was helping them find work but discussion had led them to disclose abuse from their family. This abuse was sexual and physical and psychological. They had by this point left their family home and were in their own flat in a subsidised housing scheme. She was struggling to deal with the problem and as I was the lead on safeguarding and had many years dealing with such cases I was the natural person to go to. This also led to a brief tumultuous relationship with the employment worker, which although no longer relevant gave more emotional connection to the whole situation.

I got involved, we supported the twins to report to the police and this ultimately went nowhere legally but was some form of closure for the twins.

The twins have Autism, some physical disabilities and are of a very small stature and thin, they often wear childlike clothing which made many people think they were children, which caused them great stress and confusion.

“Why did that lady ask us if we were OK?”

“That man offered us some food and if we needed to call our parents, we don’t see our parents”

This was part of their Autism where they found it hard to understand motivation, and the fact they were victims of abuse meant trust was hard. After the initial involvement with the police I remained involved with the twins as they had no paid support. Despite the problems they faced their IQ was too high to receive social services funding. They were very resourceful and good at saving money and were as twin sisters great support for each other.

I volunteered my time to help them with various issues. One day they explained their fear of spiders, they couldn’t leave the house if they knew there was a spider. I suggested hoovering them up but they explained the fear of the spider coming out again. They asked me to help them find phobia counselling to solve this. A few weeks later they came to me asking to help them get a cat.

The twins are incredibly paranoid about toxins in everything and eat a raw food vegan diet and go to great effort to find appropriate food, they are also obsessed with cleanliness and anything in their flat out of place will cause great stress.

I ask why they wanted a cat, they said to eat the spiders.

“One question. Where will the cat poo?”

“What?”

“You live on the 5th floor of an apartment building, the cat will have to poo inside, in a litter tray and you’ll have to clean it up everyday”

“Oh”

“Also, what will you feed it?”

“What do cats eat?”

“Tinned meat”

“Maybe we won’t get a cat then…”

These were the kind of problems I helped them to solve, many of them for serious issues to day to day problems. It baffled me they didn’t get any support, as spending a few minutes with them despite their intelligence, they lacked many daily coping and problem solving skills.

Due to changes in housing benefit, they had to move to a new home. This process went on for well over a year while I supported them to look for somewhere. When you support a vulnerable person to find a home in London, you really see the world differently. Looking at places imagining them living there showed just how awful he options can be for people on low incomes.

Eventually we did find them a place and they moved in. I helped them with a few other issues and over a few months they stopped contacting me. I wasn’t offended, again due to their Autism they didn’t think about making courtesy calls. I was just happy they were fine as they never hesitated to tell me about problems. It was a no news is good news type of relationship.

I move on from the job and work for another organisation, not far from where the twins live and I think about them often and was considering checking in. Then I receive that phone call after 3 years of not hearing from them.

I immediately head to the hospital they are in battling through Christmas shoppers and tourists. They are on the Acute Assessment Unit of the A&E department, which naturally worries me.

“What the fuck?” I think.

I get onto the ward and they are in bed s beside each other in a room with two elderly women opposite.

“Ladies, what’s going on?”

They are now 29 years old, but they still look like children, they are tiny and in the hospital beds they are gaunt and appear to be swallowed by the whiter than white sheets.

“We went to see our GP, but it wasn’t our normal one, we have mobility problems and wanted help with physio, she said she’d get us a physio but called an ambulance, they brought us here, we didn’t want to come”.

“OK, firstly, the fact you lost mobility worries me, explain that” I asked because despite some physical disabilities and being small, they were fine in getting around.

“We were at the gym and hurt ourselves on the leg machine, 2 years ago, we’ve been getting help but need more”

“2 years ago!, OK, but that doesn’t sound like a reason to send you here”

“They keep judging us, telling us we can’t look after ourselves”

As they say this I look at their toenails and fingernails, over an inch long. They are skinnier than before and their typically beautiful skin is greyish and mottled.

“You need to cut your nails, if people see that they will think you can’t look after yourself, I think that”

My relationship with the twins had always been one of brutal honesty, I told them the truth and they trusted me and listened to most of my advice.

“It’s natural, they grow, fall off and grow back”

“Most people don’t do that, and most people see nails like that and they think it’s because you can’t look after yourself. Please cut them, it will help you”

At this point I also told them they were thinner than when I last saw them, they defended their raw food vegan diet and said that’s fine but you are clearly needing help and you need to trust the doctors. I had asked to speak to a doctor, I explained they have Autism and are finding the experience very frightening and I would like to explain to them why they are here.

I waited an hour before a doctor could see us, so I sat and chatted with the twins for that time. We joked, I made them laugh. I told them I was worried and they should call me in they have problems. The part of this story though, that really hit me in the face was this.

Earlier in our chats, they were crying, scared, not understanding why they were there, feeling betrayed and misunderstood and one of them said to me.

“We were here for 2 days and didn’t know who to call, then we thought of you, thank you for coming”

I had a lazy Sunday planned, to in fact write the original version of this article in a true Grinch like fashion. It really and deeply punched me in the face that I was the only person in their life who they could call to see them when they were in hospital. It was no problem for me to lose a day, and at time of writing they are still there and calling me regularly. I foresee continued involvement.

Eventually the doctors came and explained they were concerned about nutrition and there was some abnormal blood tests. This led to a discussion on what “abnormal is” and what makes people different and see the world differently, which was helpful for the twins to understand they were struggling, but no one was necessarily against them…

I was able to leave on a high note, and also to bring a little relief to the twins and indeed the elderly Yemeni woman who didn’t understand her phone message and to see the NHS at its best with the excellent and friendly team on the ward.

The immediate problem is ensuring the twins get home and get back on track, to make sure they regain mobility and make the changes they need to (which will be a massive problem for them) The bigger problem is the fact they got in this state and despite them telling me they were coping fine, I pointed out they wouldn’t be in hospital if they were. There clearly was something wrong with how they got there, but it was necessary. I have my problems, and I’m allowed to moan about my plight and to relate that to others but this experience was a timely reminder that I need to get over my own shit sometimes, not be selfish, not be materialistic (which I really am not) and that I may be alone, but I’m not in hospital, with Autism and terrified. I have friends to go to even if my family is on the other side of the world and these young women who have a great deal to offer have been faced with a real hardship which shouldn’t have happened.

I’ve worked with many vulnerable people (literally hundreds, and impacted on thousands) so I can’t keep track of them all but life has a way of bringing things back when it’s needed. I expect I’ll go on another journey with the twins to get them where they need to be.

I was upset by the state they were in, but this has been rewarding for me. I was able to offer some help and to be reminded about some important things. This is what I needed right now and I am who the twins need right now.

 

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