(Vorige aflevering van “Het eerste jaar in brieven; nu ben ik het met u eens”)
“living with MS has taught me you have to get over not wanting to ask for help. I calculate the dangers of doing nothing to be far more risky than not trying to achieve your dreams.”
Mary J. Mullarkey, Supreme Court Chief Justice of Colorado, in InsideMS, 2006.
Het werd een brief, die, zoals ik later begreep, een jaar afsloot, maar ook een nieuw begin inluidde. “Begrijp het nou”, riep ik naar anderen, en ook naar mezelf. In augustus 2008 hadden we een paar dagen bij een vriend, Peter Green, in Washington DC gelogeerd. Het was drukkend warm, ’s nachts sliepen we onder traag zoemende plafondventilatoren, overdag vermengde de hitte zich met onze speculaties over Hillary of Obama als nieuwe president van Amerika. Ik wilde nog steeds Hillary; voor het eerst een vrouw als machtigste persoon van de wereld. We bezochten de estate van George Washington, slenterden over de mall, door de oude wijken en verbaasden ons over het enorme assortiment voedsel bij Whole Foods. Tussen de bedrijven door handelde Peter wat zaken af en zagen wij voor het eerst de flinterdunne MacBook Air laptop van Apple. Het was Amerika, maar er was ook MS, al was daar geen ruimte voor.
Weer terug in Brussel hadden we nog geregeld kontakt, alhoewel mijn ziekte geen grotere plaats innam dan; “I’m fine, how about yourself?” Ondertussen was duidelijk geworden dat mijn MS zich niet stil had gehouden, na lang touwtrekken waren de spuiten toch mijn leven binnengedrongen. Toen Peter op dat moment indringender vroeg hoe het met me ging en of hij me kon helpen zette ik mijn gereserveerdheid aan de kant. Ik beschreef mijn wanhoop, maar ook hoop die sprak uit de woorden van een aantal Amerikaanse schrijvers.
From: DE LEEUW Julie
Sent: Friday, February 20, 2009 3:39 PM
To: ‘Peter Green’
It has taken me a long time to find a peaceful moment to reply to your letter. I am sorry about that, but I didn’t know how to reply to your kind words. MS is a horrific diagnosis to receive, it still is too big for me. They tell me that it is normal if it takes years to come to terms with. When we met this summer I was still holding on to the optimistic opinion of my neurologist. After all I had for more than 25 years been living very successfully with this disease. But despite these assurances I did not feel well and when another MRI scan was made at the end of December it became clear that the disease was active and progressing. They detected two new lesions, and one had disappeared. This was the reason to start a therapy. I am now self-injecting daily. This treatment does not cure the disease but can slow down its progression and reduce the damage. There is no cure, but the specialists are optimistic that within my lifetime there will be a cure.
What makes it so difficult is that all parts of your brain can be attacked; you never know what will be next. You could loose control over the same instruments that you need to fight against the disease. It is not only motor and sensor functions that may suffer, but also your cognition and emotion. I thought long about how to describe it, but what comes closest is a feeling of being thrown into the ocean under a black sky. If I do not swim I will drown, if I swim slowly I will never reach the coast, but if I swim fast the disease will win. It will paralyze the same arms and legs that I need to reach the shore. We understand that by being optimistic and enjoying life we give our immune system the best chance to remain in control. Yet, depression is both the beginning and the end of MS. Not only as the reality of MS is difficult to accept, but also since the damage itself may be a direct cause for depression.
My belief is that by using all my nerves I am in the best possible position to keep MS under control. So I try to be as active as possible. I do brain exercises, have started to learn Polish, do a lot of physical exercise (I hope to pick up my long distance running again) and work as hard as I ever have. I have also changed my diet by cutting out saturated animal fats and take some plant extracts. Only my close family and I are aware of something happening to me. Maybe the disappearance of that one lesion in my brains is the result of my efforts. But the neurologist does not confirm this; to the contrary he told me that it is rare and poorly understood why lesions disappear.
Another difficult thing is that I, as a medical professional, can understand what is happening in my brains, and this creates difficulties for my neurologist. He does not know how to react to me. I have understood that normal practice is not to tell the patient everything that can happen to him immediately from the beginning. So, the answers I received were not complete. This left me utterly confused. But I am reading a lot, and the information for example from American MS websites is very helpful (National Multiple Sclerosis Society). I have also read the books by Jeffrey Gingold, a litigation attorney who had to leave his own law firm. These experiences help me a lot to come to terms with reality.
It is the fear and uncertainty that make it so difficult. Yet, I have learned that there are many famous people living an active professional life despite having MS. I have read about a female justice in your country that suffers from MS, Mary J. Mullarkey. She was the first female justice and finally the Supreme Court Chief Justice of Colorado. She told Inside MS that “living with MS has taught me you have to get over not wanting to ask for help. I calculate the dangers of doing nothing to be far more risky than not trying to achieve your dreams.”
And there is another lady, Wendy Booker, who since her diagnosis has run several marathons and is planning to climb the Mt Everest as her last of ‘the seven peaks on seven continents’. I have seen her jogging in a Youtube video, you can see that her walking is effected. She wrote herself that her left side is numb. To me these people show that even with a certain level of invalidity you can still be very active.
I am writing a lot to you, not to complain, but to explain why I had difficulty to answer your letter. Very few people know about my predicament, and when someone offers help I can get quite emotional. You suggested some of the complementary therapies, like herbal treatments or acupuncture to help relieving symptoms. But I am a bit afraid of therapies that could stimulate the immune system. In fact, there currently is a trial ongoing based on a Tibetan caterpillarfungus, (fingolimod), with very promising results so far. This caterpillarfungus is a traditional Chinese medicin! But it is very powerful and if used wrongly could result in fatal complications as the tests are showing. So, for the moment I am concentrating on the daily self-injections and a few plant extracts like Gingko biloba, vitamins and diet. Maybe at a later stage I will explore other therapies. But I would like to thank you for your offer and would like to come back to it when I am ready for it.
I hope that Mary and you are still doing fine, good to hear that you enjoy Hong Kong so much. Must feel wonderful to be truly able to live in a global world.
With love, Julie (and family)