Croquembouche

I’ve decided that this New Year’s Eve I’m going to make Croquembouche (one of those mad towers of profiteroles) for the pudding at my Mum’s annual New Years food and cocktail thing.

I usually do the pudding for the New Years thing. Last year I made Lemon Posset and Shortbread, only I was having an MS relapse that caused frequent involuntary movements in my arms and legs. I was getting my Shortbread out of the oven when my arm pulled back towards me, I dropped the Shortbread and it smashed all over the floor. Sometimes MS is a gigantic pain in the arse.

In November 2015 I bought a cake recipe book about making choux pastry and decided that amongst other things, I was going to use 2016 to become a choux pastry Bad Ass. By 2017 choux pastry was going to be totally my thing “Oh sure, I know Letty McHugh,” the people of 2017 would say “she makes profiteroles for breakfast”. As it turned out 2016 had other plans. It’s been a hard and weird year for a lot of people, what with Brexit and Trump and the Bake Off moving to Channel 4. I had 3 relapses and a laborious and boring fight to get the DMD’s I was first recommended in January. I think I made profiteroles once.

I don’t regret the last year even though it didn’t turn out how I expected it to. I found out that I’m a different kind of Bad Ass. The kind of Bad Ass who makes serious grown up phone calls and out manoeuvres stroppy receptionists. After 2016 I know I can rely on myself to fight my own corner if I need to.

I had a phone call this week to confirm I’ll be starting Tecfidera at some point in the next 3 weeks. I’ll be so relieved to get hold of them and get on with my life, but I’d like this year to be about something more than my chronic illness and the admin that goes with it.

So on New Year’s Eve I, Letty McHugh, am going to make a mad tower of choux pastry and spun sugar, and the people of 2017 will be able to say that I can make profiteroles for breakfast. 

The Neurology Appointment From Hell

The Lady Vanishes is based on the book The Wheel Spins by Ethel Lina White.  I’ve never read it to be honest with you, but I’ve seen both the film and the BBC mini-series based on the book. When I first watched the film in my early teens I loved it as a fun, far-fetched mystery.  When I watched the mini-series a few years ago I had a completely different experience.  The second time around the Lady Vanishes had transformed and I found it horribly unsettling. I watched the mini-series on the edge of my seat with this panicky tightness in my chest.

For the unfamiliar, The Lady Vanishes tells the story of Iris, a young woman travelling alone across Europe by train. On her journey, Iris has an accident and is cared for by Miss Froy an older English lady who happens to be sharing Iris’ compartment. When Iris wakes from a nap Miss Froy has (you guessed it) vanished. Iris raises the alarm, but all the other passengers deny ever seeing Miss Froy on the train. The book’s bad guys tell Iris that she imagined seeing Miss Froy. When Iris doesn’t accept their version of events the bad guys try to convince her and the other passengers she’s hysterical.

If only Iris had worn a slightly more massive hat
maybe it would’ve protected her head from that knock.

I think the reason my response to the story was so different on my second viewing had more to do with changes in me than the differences in the two retellings of The Lady Vanishes.   I identified more strongly with Iris second time round and I imagine that’s partially why the story affected me more. Honestly, I think in the decade or so between viewings I’d learned how effectively an accusation of hysteria can be used to discredit and silence a young woman and so as in the story, I could easily imagine the accusation being used to silence me. 

I started thinking about The Lady Vanishes again the other week in the aftermath of this particularly horrible appointment with my new neurologist. I was in my bed unable to sleep reliving what I had said and what my Dr had said when it occurred to me that if I were Iris trying to convince a train full of people I was experiencing relapses and Dr X were an evil book bad guy telling that same train of the people I was hysterical the train would probably side with him. My arguments would be fatally undermined if I showed the slightest bit of emotion and his arguments would be eternally strengthened by his stethoscope.

You probably need some context to help you fully appreciate the brilliant analogy I’m making.  Let me back up a bit

The sequence of events that led me to Dr X’s office (that’s not his real name, by the way, I’m just calling him that to protect his identity and make him sound more like a comic book villain) started in December 2015 when I had this fun relapse that caused involuntary movements in my arms and legs.  They were only small movements but at the worst point one of my limbs would set off on its own roughly every 30 seconds. The movements were also sudden so I would throw a fork across a restaurant or spill a drink down my shirt with no warning at all. 

Studies show people are more likely to trust Doctors who carry stethoscopes.

Even if those Doctors do happen to be arses.

 I visited my original neurologist, Dr P, in January 2016 and merrily twitched while he suggested I start thinking about disease modifying drug and after some administrative drama I was referred to see the MS specialist, Dr T. 

While I was waiting for my appointment with   Dr T I had and MRI scan and another relapse. This time affecting my sight and causing pain in my left eye. I saw an ophthalmologist who felt my symptoms were MS related and DR P prescribed me a short course of steroids.  

In  June 2016  I had an appointment with DR T   I arrived at his office and found him friendly and reassuring . We talked about drugs, he recommended I start on disease modifying drugs but he stressed that which drug I chose was ultimately my decision. I told him which drugs I was interested in, Lemtrada or Tecfidera. DR T explained if I wanted to go for Lemtrada I would need referring to the hospital in the city, but he was happy to do so, they'd probably want to run tests make sure I was medically suitable and one of the city Dr’s would help me decided whether Lemtrada was the right drug for me.  

        

That’s how I ended up in Dr X’s office in the first week of October. I still wasn’t 100% sure Lemtrada was the drug for me but I wanted to fully understand all my options, and I was glad to finally be meeting the Dr who would help me make what I considered to be my decision. That glaring error is one of the first things Dr X set out to correct when I arrived in the office.  He was very careful to make clear that which drugs I would be taking would be his decision, that is if he decided I should have any drugs at all.  

“I hold all the cards,” he said “and I might choose to show some to you and the others I’ll keep in my top pocket.”   Later in the appointment, he lamented the existence of people like me who ‘See these new drugs on television and read about them in newspapers and want them for themselves’ if it were up to him, he told me I wouldn’t even know Lemtrada existed.

If it were up to Dr X this is how all his patients would learn about drugs

Early in what quickly became the appointment from hell, Dr X had me recount my entire patient history. When I finished Dr X told me bluntly that he ‘Didn’t like my story’ when it came to the relapses I had experienced in 2016.  He told me the symptoms that affected my eye were ‘unexplainable’ and he recommended I saw a neuropsychologist to explore them. In Dr X’s professional opinion, I didn’t qualify for any disease modifying drugs. The best thing I could do at this stage would be ‘Sit tight and wait’, presumably until I started experiencing more serious symptoms. 

That’s how I ended up in bed, wide awake at 2 am wondering if Dr X would be able to discredit me the way the book bad guys discredited Iris in The Lady Vanishes. Dr X’s accusation that I was hysterical and somehow conjuring my own symptoms was thinly veiled, but if you had been in the room with me you’d agree his implication was clear. That night I worried his words were going to infect my medical records. I worried no doctor would ever believe in me again.  I worried Dr X would somehow have me undiagnosed and I’d be left to deal with my illness completely alone. Realistically the symptoms of MS are difficult to corroborate to anyone who isn’t experiencing them.   Especially early in the illness when most symptoms are invisible to an external observer.  How do you prove fatigue, or bright lightning like flashes every time you move your eyes? Once you start    casting doubt even the loss of feeling in my left leg that led to my diagnosis seems suspect.

 I talked myself down from that mental ledge by recounting the long list of MS Nurses, Neurologist, Ophthalmologists other varied medical professionals who have observed my illness and never doubted my words. I Also remembered the 4 MRI’s I’ve had which are surely indisputable evidence. After my fear subsided and was replaced by a glorious white hot rage.

The Road to MS treatment is wiggly no?

 Irrationally the thing that really got me mad was the statement ‘I don’t like your story’. Not because he doubted my symptoms which I now felt I could prove if I needed to but because I tell a bloody good story.  If I was going to make up a story about MS it would’ve an excellent, it would be well researched and compelling and I guarantee you Dr X would have believed every single word of it and thoroughly enjoyed the experience of hearing it.  But I didn’t make up a story, I went into his office and told the unadulterated, unexaggerated truth without adding a single joke, which is a thing I hate to do.

When I look back on my appointment from hell now the thing that comforts me is the knowledge that I did at least fight against Dr X.  I argued with him for good 20 minutes until he agreed that in exchange for me leaving he would look over my scans and records before ringing me back the nest week with his final decision. This concession gave me valuable time to figure out how best to circumnavigate Dr X completely.

All good horror stories should have a hero, and the hero of this one turned out to be Dr T, my original MS specialist who had never discharged me as a patient. When Dr X started behaving like a megalomaniac, I thought of Dr T’s kind friendly manner, his promise that I had the finally say on which DMD I started and his promise that I could always phone and I could ask to go back to him if I changed my mind about the Lemtrada.

Old time phones make everything seem more dramatic
I pretend to have one when I ring important people.

 When Dr X phoned me the next week he told me he had discussed my case with a colleague and decided ‘To give me the benefit of the doubt’.   He had looked at my MRI and because it showed disease activity he was prepared to recommend I started any drug other than Lemtrada. I have to admit if that it felt really good to be able to say I had decided not to work with him in response. I didn’t exactly say ‘What do you think is entirely irrelevant you megalomaniac’ I thought it really loudly through our entire conversation.

Hopefully, my story is heading for a happy ending. I have another appointment with Dr T. later this month and I’m confident I’ll be starting a DMD just short of a year after they were first recommended. What frightens me, however, is how easily things could have turned out very differently.   When I first left my appointment with Dr X I feel like an idiot ever reporting any of my relapses in 2016. The suggestion that I was hysterical had me doubting the value of my own words. Like Iris, I knew I was telling the truth, but Dr X’s attitude and actions eroded my confidence in ever being believed. After I reported my relapse I spent a year waiting for appointments and test results.  For a year my life was fully consumed by the admin that accompanies a long-term health condition. To get to the end of the process and then not only be denied help but to be dismissed and humiliated by the person that was supposed to be helping me was beyond disheartening.

 Even following his reluctant change of heart I doubt I ever could have had a productive relationship with Dr X.   How could I report new symptoms to him knowing my every word would be second-guessed?  I would never have been able trusted him to believe what I was saying or to have my best interests at heart.

 I know there are people with MS who completely fall off the medical radar, they go for years without seeing doctors   and start ignoring new symptoms entirely. I honestly think experiences like the one I had the Dr X is a big part and why that happens. It frightens me how easily I could have been one of those people through the actions of one Dr.

I was fortunate, I had another option and could go back to working with Dr T, I don’t know how may people have a choice.

Thoughts From Inside an MRI Machine

If this experience has taught me anything
it's that I'd make an excellent astronaut. 

If I’d realised in advance I was going to be in a hospital gown with just my legs and feet visible for this length of time I probably would have worn matching socks. 

If I’d realised in advance I was going to be in a hospital gown with just my legs and feet visible for this length of time I definitely would have shaved my legs. 

I really shouldn’t think about anything too weird while they are taking photographs of my brain. I wonder what the weirdest thing they’ve ever caught anyone thinking is. 

[a short while later]

Wait, that’s probably not how MRI’s work, they probably can’t tell what I’m thinking about. I hope they don’t think I’m an idiot for thinking that. 

I’m actually quite glad that this MRI machine doesn’t have one of those periscope things like the last two MRI machines I was in. 

Having an MRI is just like space travel with all the noises and science that I don’t understand and stuff. I guess an MRI is better than space travel because you are less likely to crash and die. On the other hand, I guess an MRI is worse than space travel because when you climb out of your capsule instead of being in space you are in a hospital in Bradford.

Sad Piano Music

Hi, I’m Letty and I’m a closet Radio 4 listener. I got into it when I was at Uni and I used to stay up nights making poorly thought out Conceptual Art and listening to The World Service.

I started listening to Today in Parliament because I love my current affairs and things just spiralled out of control. Eventually, I became the sort of person who joins conversations by saying “Yeah I heard about something like this on You and Yours”.

When it comes to Radio 4 my first love is Woman’s Hour; I listen most mornings with my cup of tea. I wrote an essay on interview techniques for my MA titled “What would Jenni Murray Do?”. Generally speaking, my love for Woman’s Hour is wholehearted and uncritical but I do have two small complaints to make.

This isn't what my radio looks like but
a watercolour of the I-player app wasn't as pretty

My first complaint is that they never have me as a guest even though I’m clearly Woman’s Hour material. I’m hilarious, I’m a feminist, I made a huge interactive project about the value of women’s labour and I could be in Salford in under two hours. I’ve emailed them so many times it’s getting ridiculous.

My other complaint is the way they talk about MS. My years of listening to the show overlap almost entirely with my years of knowing I have MS so it’s obviously a topic I’ve been hyper-sensitive to. It bothers me that the illness is reported almost exclusively as a tragedy. Guests will be introduced as “A writer whose early life was tinged with tragedy when her mother died of MS.” (MS isn’t a terminal illness, for more info on that see my future epitaph). Or We’ll hear about some past tense prodigy “…whose career was tragically cut short when she developed MS and her arms fell off”. (This may not be an exact quote.)

A little while ago Woman’s Hour ran a series of interviews with women who’ve used creativity to help them through hard times. We heard from a songwriter with cancer, a textile artist with chronic fatigue, you get the idea. The last interview was with a poet with Multiple Sclerosis and I tuned in thinking “Oh good, a rare opportunity to hear a first-hand account MS in the mainstream media”. I got a sinking feeling in my chest when the poet was described as ‘bed-bound’ in the introduction and switched the radio off when I heard the interview had been intercut with sections of sad piano music.

The addition of sad piano music turns the feature from an honest conversation on living with limitations into something else entirely. You add sad piano music and suddenly it’s a tear jerker, it’s misery porn, it’s every depiction of life with MS I’ve ever seen in the mainstream media.  Here is a woman sat in her bedroom, she looks pale and she is alone, the colours are muted, the sounds are soft. This woman is sick, she is in pain, but still she whittles miniature poodles. Hearing the poignant story of this brave poodle whittling woman, listeners feel both grateful not to be her and inspired to live a better life.     

Maybe poodle whittling could be the next trendy hobby?
Like adult colouring only dog shaped. 

I’m being unfair, blaming that one episode of Woman’s Hour for five years’ worth of feelings. The truth is I’m sure the interview they did with the poet was respectful and well-intentioned. I’m sure it was an accurate portrayal of her life and her illness, but it wasn’t an accurate portrayal of me and just one time I wish something would be.

Whenever I see that MS is back in the media my heart sinks, because whatever gets said will colour people’s understanding of what it means to live with this illness. Every time there’s some sensationalist report about a new ‘cure’ for MS I get asked if I’m going to try it. At least three people that I sort of know think I’m on a waiting list for that experimental treatment off of Panorama because I ran into them the week after it aired and by then I was to tired of the topic to correct them.

Sometimes when I’m talking to someone and they know I have MS I can just hear the sad piano music playing in their heads. Those people don’t use me to colour their understanding of what it is to have MS, they use a Soap story line about assisted suicide to colour their understanding of me.

It’s so important that we fix our depictions of MS because the way people talk about this illness and what they understand about it has such a huge impact on the lives of the people who live with it.

Now That's What I Call MS Music

I want to stop wading through a quagmire of misconceptions every time I have a conversation with a casual acquaintance. I don’t want anyone newly diagnosed to think the rest of their lives will be a tragedy with a soundtrack of sad piano music. I want them to know that they can have a life like mine, a happy one accompanied by wall to wall disco hits.

Accurate depictions of MS are unendingly complicated, it’s such a changeable illness and no two cases are alike, but we could start by telling every story with that caveat. And then follow up by telling stories from a wider range of sources.

I would forgive Woman’s Hour’s transgression in a heartbeat if they played an interview with a young, active MS haver intercut with ABBA. Maybe they could go for a twenty-five-year-old with a super cool asymmetric- bob, that could be in Salford in less than two hours? I have it on good authority that just such a person is waiting by the phone.