I once spent three weeks reading all seven Harry Potter Books. Until then I had been put off by the hype, but I finally succumbed to it after seeing and following discussions about the latest HP movie, the Half-Blood Prince. I totally immersed myself in this magical world created by the genius talent of J.K. Rowling. When I finished the last book in the seven-part series, I started to wonder what Harry Potter’s life would have been like if he had RA. Harry has endured a tremendous amount of hardship, so I know it must be unfair to impart this horrid disease onto him. Yet I could not resist coming up with an alternate, RA-infused version of his tales.

The story obviously starts with Harry receiving only the basics in health care due to his horrid uncle and aunt not wanting to pay more than absolutely necessary. Sleeping in a cupboard and doing all the chores in the house is not beneficial in the least. But once he arrives at Hogwarths, he is sent to Madam Pomfrey, the equivalent to a school physician, who is aghast at how far this disease has progressed! He has to wear wrist guards, which are already too small and his hands are so disfigured, he can’t hold his wand properly. You see in the magic world of Harry Potter, RA is non-existent. It is seen as a primitive Muggle disease. Magic has more ways of dealing with the symptoms of RA and spells could do a better job than Muggle made assisting living devices. Madam Pomfrey brews a potion, which will take about two months to be fully effective, because of the severity of his symptoms, but it will cure him nonetheless. Ron and Hermoine obviously help him out in this transition period, as best friends do. They would carry his books to classes and use a binding spell to attach his wand to his hand because he still has trouble holding it (Hermoine had naturally done lots of research on RA and had learned this trick from the artist Renoir).

Harry Potter’s most remarkable development though, is using RA to his advantage, when fighting his arch nemesis Lord Voldemort. He develops spells that inflict RA-inspired symptoms. The spell “Inflamallus” is so effective it makes Voldermort fall off his broom, because his knees and hands swell up so much, he can literally no longer hang on. And during their final battle Harry uses the “Disfigurmantus” spell, which disfigures Voldemorts wand-hand into a claw, causing him to drop his wand. And before he can pick up the wand with his other hand, Harry Potter finished the Dark Lord off with the harshest of all spells: “Fatigura Totalis”. It is a spell that brings on fatigue that is so intense it renders a person completely immobile. The horrors of RA create the Darkest of Magic. I am not sure if I ever use RA to my advantage. But as a dad with RA I found I have to be more creative in looking after my son, just as Harry Potter and his friends used creativity to deal with the limitations brought on by RA. As a typical three year-old, my son does not always want to go where I want him to go. And when I have a bad day, I am then not able to run after him. But when I challenge him to a race to see who can gather their shoes the fastest, he responds. What a parent with RA lacks in physical stamina, more than makes up for by using creativity.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

The art installation Cradle to Grave is located in the centre of the Welcome Trust Gallery on a 14 metre long table at the British Museum in London.

Two ‘pill diaries’ of a British man and woman are laid out on this table. The stories of these diaries are told with the pills and other medication this man and woman have taken throughout their lives, from cradle to grave.

The textile artist Susie Freeman made little pockets of nylon for each individual pill and sewed them together to make two long cloths. These cloths are the two pill diaries of the man and woman, displaying their medical history in chronological order. Alongside the diaries there are other forms of medication, like syringes from inoculations and X-rays. The artist collaborated with a video artist and physician and the installation only contains prescribed treatments, so no medication that can be bought over the counter like paracetamol, vitamins or other supplements.

When I read the description of the piece I was shocked to learn that both diaries contain 14,000 pills, the average that a Brit takes in his or her life. My son and I walked around the table, taking in the display of all those pills in front of us.

“You haven’t taken that many pills, right?”, he asked me.

“No, I don’t think so kiddo.”, I replied.

But then I started doing the math. I was diagnosed with RA 15 years ago this week (happy RAnniversary to me) and I’ve taken medication to combat the disease the entire period. I’ve taken more meds in the first eights years than in the last seven. During my RA-era I’ve taken 18,000 pills and injections, and that’s a conservative estimate. And it doesn’t include other medication in that period let alone pre-RA!

After taking a few photos, I took a couple of steps back. The visual manifestation of the pill-diaries hit me like a ton of bricks.

“Shit! My pill-diary is a lot longer than the one in front of me.”

My son appeared next to me. We looked at each other for a moment, turned around and walked into the London sunshine.

Ferhaan Kajee

http://www.cradletograve.org

The actress Robin Wright compared the character she portrays in the series House of Cards with the art form cubism. Cubism is structured, compartmentalised, intriguing and scheming, traits I’d definitely use to describe Clarie Underwood. She described her co-star’s character, played by Kevin Spacey, as a Jackson Pollock; an orator, always talking without any filter, just throwing it out there.

This analogy made me wonder which art form portrays rheumatoid arthritis as I experience it. Baroque has elements that I would attribute to RA, in particular the 17th-century Dutch Masters. The dramatic effects, stark contrasts, strong emotions and bustle are certainly aspects I associate with RA. But the realism of Baroque doesn’t quite apply to it, because on the outside you can’t see I have this disease. I find the different points of view of Impressionism quite appealing. From a distance you see a nice simple picture, but as you move closer to the canvas the complexity of the artwork becomes increasingly evident. As much as I’d want it to be there, there’s no structure to the course of the disease, so Cubism isn’t a good fit even if there is something to be said about the chicanery of this art form. In Amersfoort, the birthplace of Mondriaan, we’re celebrating 100 years of De Stijl. I compare the process of simplifying forms, as is Mondriaan’s signature, to getting to the essence of RA. Every square and rectangle and each colour represent a different aspect of the disease, like pain, fatigue and inflammation, while the true meaning of the painting can be found on a much deeper level. Van Gogh’s post-impressionistic works move me the most. The chaos of the dollops of paint on the canvas, misunderstood in his time, but having the capacity to deeply touch people from afar. His works inspire me most, even if Picasso’s ability to distort objects might be a better metaphor for my life with rheumatoid arthritis. Abstract art as a whole is a better fit; RA is a disease that is misunderstood by many. Whatever art movement fits your disease, remember that living with RA is an art form in itself.

 

In een talkshow vergeleek actrice Robin Wright haar personage uit de serie House of Cards met de kunstvorm kubisme. Die is namelijk gesloten, gestructureerd en intrigerend. Haar tegenspeler, gespeeld door Kevin Spacey, is een flapuit. Hij heeft geen filter een gooit alles op het doek, een Jackson Pollock dus. Deze vergelijking deed me afvragen welke kunstvorm bij mijn reuma past. Er is veel te vinden in de Barok, met name de Hollandse meesters uit de 17e eeuw. De dramatische effecten, sterke contrasten, veel emotie en drukte zijn uitingen die ik zeker in mijn reuma herken. Maar het realisme valt er buiten, want aan mijn voorkomen is niet te zien dat ik ziek ben. De verschillende invalshoeken van het impressionisme spreken me aan. Van een afstand zie je het mooie beeld terwijl de complexiteit zichtbaarder wordt naarmate je dichterbij het doek gaat staan. Van enige structuur in mijn ziekteverloop is geen sprake, hoe graag ik dat ook zou willen, dus is het kubisme zeker geen kandidaat, al is er wel wat te zeggen over het achterbakse. Als geboortestad van Mondriaan, viert Amersfoort 100 jaar De Stijl. Het vereenvoudigen kan ik zien als het tot de essentie komen van reuma. Elk vlak en elke kleur vertegenwoordigen een ander aspect van mijn reuma zoals, pijn, stijfheid en vermoeidheid, terwijl de ware betekenis van het kunstwerk een veel diepere laag heeft. Het postimpressionisme Van Gogh raakt me het meest. De chaos van de klodders verf op het doek, onbegrepen in zijn tijd, maar het vermogen om mensen op een afstand diep te raken. Zijn werken inspireren mij het meest, terwijl het vervormen van objecten door Picasso echter een betere metafoor voor mijn leven met reuma is. Abstracte kunst in zijn algemeenheid past beter; reuma is een ziekte die door velen niet begrepen wordt. Het leven met reuma is een kunstvorm op zich. Ferhaan Kajee