In April this year Salmaan Sana talked about his experiences as a medical student. He found there was an important element missing in his training to become a doctor: compassion. He wasn’t taught to show compassion to his patients. So with a team of likeminded compassionate people, they decided to change that. This team wrote the Charter for Compassion for Care and is asking people in the healthcare world who ‘want to restore compassion as the core principle of healthcare’ to sign this charter.

Watch Salmaan’s presentation here:

I find Salmaan’s story inspiring and it made me think. Do I show compassion to others if they are hurt or sick? After some soul searching I discovered that since I have rheumatoid arthritis, I am less sympathetic towards other people who are sick or hurt. In my previous job as an assistant manager in a bookshop I showed little compassion towards staff that called in sick. I would be civil to them on the phone, but what I was thinking was: “I have RA and I made it into work! What are YOU complaining about?” Nowadays I sometimes caught myself showing little pity to my son when he hurt himself.

So I decided my behavior was unacceptable. Our society has hardened in the last decade and lacks compassion. The result is that there is little to no compassion in healthcare. This has to change. But this change has to start with me, especially as a parent. If I want to raise an empathic child I will have to give the right example. Signing the Charter on www.compassionforcare.com is the first natural step. I hope many in the medical field will follow my example.

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

Compassie

Er bestaat een zekere afstand tussen een patiënt en zijn arts. Deze afstand ervoer ik als gewoon, helemaal omdat alle reumatologen en andere artsen die mij hebben behandeld deze afstand hanteren. Deze afstand is er om een zekere mate van professionaliteit in stand te houden. Er is echter een wereldwijde beweging op gang gekomen die een document heeft opgesteld die mensen moet inspireren om compassie weer het leidende principe in de zorgverlening te maken: COM-Passion for Care. Tijdens TEDxMaastricht werd deze beweging gepresenteerd door student geneeskunde Salmaan Sana. Hij realiseerde zich tijdens zijn studie dat er iets miste in zijn opleiding tot arts. Er werd hem niet geleerd compassie te tonen naar zijn patiënten. En daar wil hij verandering in brengen.

Salmaan’s voordracht was inspirerend en heeft me aan het denken gezet. Toon ik compassie naar anderen toe als zij iets mankeren? Ik ontdekte dat ik minder begaan ben met ziektes en pijntjes van andere mensen sinds ik reuma heb. In mijn vorige baan toonde ik weinig medelijden met personeel die zich, terecht, ziek melde. “Ik heb reuma, maar ben er toch gewoon! Wat zeur je nou?”, dacht ik toen bij mezelf. En tegenwoordig betrap ik mezelf erop dat ik mijn zoon soms weinig mededogen toon als hij zich bezeert. En dat vind ik onacceptabel.

Er is te weinig compassie in onze verharde samenleving. En dus is er ook te weinig compassie in de zorg. Daar moet verandering in komen. Maar die verandering begint bij mezelf, helemaal als ouder. Als ik een barmhartig kind wil opvoeden, zal ik het goede voorbeeld moeten geven. Het ondertekenen van het manifest op www.compassionforcare.com is een logische eerste stap. Ik hoop dat velen in de zorg hetzelfde gaan doen.

©Ferhaan Kajee 28-11-2011

Last week I had an appointment with my rheumatologist. Even though it did not feel like it at the time, it was a matter of joint interest. The reason for this was the news she had for me. In this joint statement she told me that my right wrist had a crack in the joint (some joint damage). You can imagine that this news threw me completely out of joint. This was not the type of joint hearing I had travelled all the way to the hospital to, to hear. In fact I was so upset I felt I had sufficient grounds to get my doctor thrown in the joint. Not that the hospital is such a classy joint…

If you're thinking you can't see anything out of the ordinary, you are right. On the surface the wrist still looks the same

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

© Ferhaan Kajee 15-06-2011

London has a lot to offer in the areas of culture and creativity and not just in the form of museums, because there are a number of shops and companies that really think out of the box as well. It is a great place to get inspired. This inspiration and seeing loved ones, really energizes me. But here is where the danger lies of overdoing it. Whenever I visit London, I produce so much adrenaline, that I have to be very careful that do not to do too much.

Fortunately London has a good rating on my “RA-friendly scale”. The good and efficient public transport system enables you to get around easily. The double decker busses reach the outer suburbs with great frequency and connect well with the well-organized Tube system. But almost unknowingly you tend to walk long distances at some Tube stations. Fortunately there are many cafes or trendy coffee houses to take a load off. And the London Cabs can take you anywhere you need to go. There are many great museums with a wide array of specialities, that are often free of charge, have comfy chairs and are all wheelchair accessible. There is a small detail of this capital that I like; the public restrooms have warm water which is welcome in the winter (Holland, unfortunately believes that we should always wash our hands with cold water).

It’s a pity that I am not able to walk the streets of such a nice city for an entire day anymore. But there are plenty of option to use my energy efficiently. That is why I visit London so regularly. So how RA-friendly is your city?

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

Ferhaan Kajee, September 2010

Reumavriendelijk

Tijdens de meivakantie zijn we naar Londen geweest. We hebben een erg leuke tijd gehad, mede door het bezoek aan familie en vrienden. Natuurlijk hebben we deze grote stad zelf ook verkend, zo zijn we maar liefst twee keer naar het National History Museum geweest. In dit museum is een ontzettend gave dinosaurus expositie en Khalil is op dit moment helemaal weg van dino’s.

Londen heeft ontzettend veel te bieden op het gebied van cultuur en creativiteit, niet alleen in musea, maar ook bij winkels en andere bedrijven. Het is bij uitstek een plek om inspiratie op te doen. Die inspiratie geeft me nieuwe energie, alsmede het zien van bekenden. Maar daarbij ligt er ook een gevaar op de loer; overbelasting. Tijdens een bezoek aan deze bruisende hoofdstad produceer ik meer adrenaline en moet ik erg oppassen dat ik niet te veel doe.

Gelukkig scoort Londen goed op mijn ‘reuma-vriendelijk-schaal’. Het goede openbaar vervoer net maakt het makkelijk om je te verplaatsen. De dubbeldekkerbussen rijden met grote regelmaat vanaf verre buitenwijken en is goed te combineren met het overzichtelijke metronet. Ik merk wel dat je bijna ongemerkt veel loopt op sommige metro stations. Gelukkig zijn er vele cafés of hippe koffietenten om even te kunnen zitten. En de Londense taxi’s kunnen je natuurlijk overal brengen waar je maar wilt. Musea’s zijn er in grote getale, op allerlei gebied, zijn vaak gratis toegankelijk en hebben veel zitmogelijkheden. Een klein detail, ik vind het erg fijn dat ik mijn handen met warm water kan wassen in openbare wc’s, vooral in de winter is dat erg prettig.

Jammer genoeg kan ik niet meer de hele dag door zo een mooie stad wandelen, maar er zijn genoeg mogelijkheden om mijn energie goed te verdelen. Daarom blijf ik er terugkomen.

As I drive through town, Boekgirl calls me and to my surprise I hear Boekkid in the background. He was woken by the din in the neighborhood. “Did Holland win, Daddy?” When I tell him that unfortunately we lost, he becomes very sad. Now I want to get home as quickly as possible to comfort him, but when I arrive fifteen minutes later, his Mama has obviously done so already. We give each other a hug and talk about the game a little bit. “Spain was naughty, right Daddy?” I agree and notice he has put the matter to rest.

I am amazed how quickly he has worked through his grief and I wonder if I am avoiding the sense of disappointment. In the car I had turned off the radio, at home I refrain from turning on the tv and online I stay clear of the media sites. I do not want to see the footage. I do not want to listen to the interviews. I do not want to read the commentary. Every day I confront the pain that is caused by RA and regularly I seek the margins of it. It has a place in my body and my life. But on this day I am avoiding the pain of the loss of the Dutch nation football team. I am reminded of a line in the song “Laat me slapen” (Let me sleep) by the awesome Dutch band Acda&deMunnik. The protagonist gives the newspaper back to the delivery boy, reasoning that if he does not read the news it has not happened. In my convoluted mind the Fifa world cup 2010 ended after the semi’s.

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

© Ferhaan Kajee, August 2010

During an editorial meeting of In Beweging, we were discussing how the world was getting increasingly digitized. It seemed not too long ago that we were using index-cards to organize catalogues, but now we are already so used databases and search engines. I learned at university that a sound structure is needed to form the basis for a good (non-virtual) database. If the foundation is sound and simple it is easy to build upon it. Many IT-professionals will agree that great websites, apps or software packages start of as a sketch on a sheet of A4.

The Reumamonitor (RA-monitor) of the Dutch Arthritis Federation is a prime example of a well built site. RA patients can monitor their disease activity and daily functions on this website. The Reumamonitor (http://www.reumamonitor.nl/) is based on the DAS (Disease Activity Score) and is very user friendly. On an illustration of the human body, you click the joints that are painful and/or inflamed. You fill in the latest lab results of your ESR and on a sliding scale you determine how you feel, ranging from good to bad.

It was not difficult to translate the essence of this monitor to a sheet of A4 and adapt it to my needs. I added two other scales, for pain and mental fitness. I’ve hung it on the magnetic board next to my bed and start most days determining how I feel, by sticking red magnets on this low-tech RA monitor. By doing this I find it easier to determine what I can do that day and it gives me a sense of control over this disease. It has also proven to be a great way to teach Boekkid about RA. Because it’s visual and so simple, a four year old gets it. Somehow it made more sense to go low tech on the Reumamonitor, than showing it to him online. And it works! Sometimes he will come into our room and mark the monitor for me, asking me which joints hurt and how much ‘ouch’ I have. It’s ‘fun’ for him to do and gives him a better understanding how RA affects me.

I’m very grateful Boekgirl and I have been able to explain RA to him, without burdening him with it. It’s a given for him that I have this disease and sometimes I feel he accepts it more than I do. As he grows up I’m sure I will have to disappoint him on occasion, because of a flare. Both of us will have to learn to deal with these disappointments.

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

© Ferhaan Kajee, June 2010

The gym I go to twice a week is staffed solely by physical therapists. I ended up here after I followed the RAPIT program (Rheumatoid Arthritis Patients In Training). The PT’s put an exercise program together which followed up on my RAPIT schedule. Sometimes the exercises are quite tough and I suffer regular setbacks. But in the long run, there is no denying that exercise has benefitted me greatly, and I could not have achieved this progress without the help and guidance of my physical therapist. I’m in much better shape, my joints are reasonably loose and I have become quite a bit stronger. I think exercise can benefit every RA patient.

That is why I was surprised that a fellow RA blogger claimed the opposite a few months ago. This blogger is convinced that there is a group of RA patients who are in such a bad way that exercise is impossible. Critical questions have rightly been asked about the general advice given by doctors telling patients to ‘just exercise’. A lot of readers have commented on this post, some advocating exercise others saying it is not viable. Good arguments have been made, but I can’t seem to shake the feeling that the group who do not believe in exercise seem to be looking for any argument to not exercise. It could also be a question of cultural difference. An arthritis researcher told me that Dutch rheumatologists promote exercise much more than their North American counterparts. The position in the Netherlands is formed strongly by the success of the RAPIT program, which has benefitted almost all the RA  patients who followed it.

Which is why I am interested in what you, the reader thinks. Please vote on the poll.

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

© Ferhaan Kajee, May 2010

First of all a sound anti-virus software package (medication) is absolutely necessary. Unfortunately this can slow the system down (side effects) even more. Secondly, it is essential to download the newest and correct downloads (healthy diet). Make sure you don’t browse sites that can interfere with the system (doing too much) and it’s important to defragment the hard drive at least once a week (exercise) and in doing so, remove temporary and old files (work up a sweat).

If you follow these instructions, an old pc can function for some time. But I’m just treating the symptoms here. I’ll never be a new computer, I’m stuck with the obsolete one (RA).

I wish I was more mobile, I wish I was a Macbook pro.

Thank you for your time, take care of yourself and remember to keep passing the open windows (OS X of course..).

© Ferhaan Kajee, March 2010

When I’m not able to actively play with Bookkid, we’ll read a book together or browse the website of Sesame Street on my Macbook. This means I do not have to get up. But at other times I can’t resist his charms and his ‘Come on, Daddy”s. Then we’ll go up to his room where, sitting down, I play along with whatever game he thinks up with his stuffed animals or dinosaurs. What we love to do most though, is wrestle on the big bed, build a ‘pillow tower’, do somersaults and of course hide under the covers when Mama walks up the stairs.

We both feel a whole lot better after that.

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

© Ferhaan Kajee, February 2010

Generally you start school with a clean slate, nobody knows who you are. The school and the child discover each other with an open mind. And the same applies to the parent. The staff at the school, the other parents and the kids, do not know what you do, what you have done or who you are. In my case this means I am a tourist visiting a country where nobody knows I have Rheumatoid Arthritis. Obviously when I meet someone for the first time, they do not know I have this disease. And walking around town it is, fortunately, not apparent that I have RA.

The situation at Bookkid’s school is different. Here we have a large group of people who I’m getting to know and who do not know I have RA. Standing outside the school with the other parents, I blend in the crowd. Undoubtedly a time will come when this news will become known, probably during a teacher-parent conference or any volunteer work I will participate in. But I think I will try to delay that moment for as long as I can. I enjoy my brief visits to this country where I have no RA. I enjoy the RA-anonymity.

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

© Ferhaan Kajee, February 2010

This excerpt from John Irving’s latest excellent novel, Last Night in Twisted River, reminded me of something Boekgirl said to me a while back about my blog. The posts I have written are about my discoveries, my insights and in some cases, victories, but not about the horrors of RA. Like Danny I have maneuvered around the periphery of my subject, while I am very much aware that, in my writing, there is a lot to harvest from the darkness of Rheumatoid Arthritis. But it is not easy to write about.

I had a painful Christmas this year. Literally. An RA-induced pain. On Christmas day I was not at my best, I was experiencing more pain and stiffness than usual, and I was very tired. It was hard to get going. We were spending the afternoon and evening with Boekgirl’s family, but ended up arriving there late afternoon, because I was moving at a slow pace. Being with the family was great, the food was good and everyone was in good spirits. Quite often when I flare up like I did during Christmas, my mind is closed off. I can’t think clearly and I find it almost impossible to communicate effectively, because it seems my brain is using most of its capacity to deal with the severe pain and fatigue of the flare. Fortunately this time, my mind was operating at an adequate level. Like last year, I was in charge of taking a picture of the whole family and that went well too. But after dinner I felt we had to leave soon, I felt the flare was ready rear its gruesome head and by the time we got back home, it did. The logical thing to do in this case, is to get to bed, but somehow I do not move. There is too much going on in my body to attempt to sleep and I nodded off after midnight on the couch. It was two in the morning by the time I went to bed.

Boxing day was my try-to-get-through-the-flare-day. All I could do was lie down, either on the couch, but most of the time in bed. I rated the pain an eight on a scale of one to ten, one being pain free and ten being hell. I felt it most in my feet, knees, fingers and wrists. Standing for more than five minutes was excruciating. Like the day before, my mind was functioning reasonably well and that made it a tad easier for Boekgirl; we were able to communicate. But this situation did mean she would have to do everything in the house that day. Bookkid had a more difficult day. He’d been bouncing of the walls the past week anyway and on this particular day I found it hard to be patient with him when he was not listening.

In a way I was happy with the pain. the pain was keeping my brain occupied. The pain stopped my brain from thinking of the impact of RA on my life. It stopped me from realizing that I could not take Bookkid to the train museum, the day was after all perfect for it. The pain kept away the thought that this disease would at times prevent me from doing fun stuff with my son and that I would have to tell him regularly that Daddy has RA and has a lot of pain and can’t play. It’s a good thing I was not thinking of any of these things that makes being a Dad with RA very tough. That would just get me down.

I am a big fan of John Irving. Like Dickens, he is a great storyteller. I admire the way he writes and love the characters he creates. My favorite Irving novel is The Hotel New Hampshire, and it is in this book that the Berry family repeatedly tell each other to keep passing the open windows. I interpret this as trying to stay on your chosen path and not being tempted to venture of it, which at times seems easier. Like Irving himself said in a recent interview, his books remind me to be grateful for the people I have around me, who love me and stick with me through the good and the RA.

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

© Ferhaan Kajee, December 2009