Reizen per OV naar Brussel een avontuur of een hel! Travelling per public transport - an adventure or a hell!

Normally, I write in English there my English better is than my Dutch as I grew up in The States. Today, I start in Dutch and the English version follows the Dutch below.

Normaal schrijf ik in het Engels omdat makkelijker af gaat en mijn geschreven Engels is taalkundig beter. Ik ben namelijk opgegroeid in de VS.  Deze keer schrijf ik eerst in het Nederlands en tevens hieronder in het Engels. 

Amai, wat een dag, wat een avontuur, een verhaal dat me lang zal bij blijven!  Als ik had geweten wat ik deze dag zou meemaken had ik direct de auto gereden naar het Nationaal Congres voor Chronisch Zieken, Kunstberg, Brussel.  Als voorzitter van een patiëntenvereniging wou ik toch de ervaring opdoen om te reizen met de trein in mijn rolstoel. Brussel Centraal is volgens de NMBS rolstoeltoegankelijk. Het is ook ongeveer een jaar geleden dat ik alleen met mijn rolstoel voor enkele dagen naar Stockholm namens de vereniging ben geweest.  Op beide luchthavens in beide landen was alles goed geregeld, maar het OV in Stockholm is in vergelijking met België een Walhalla ervaring!

AAN DE BILLEN OMHOOG GEDUWD

Donderdag ochtend vertrok ik met volle moed in de auto richting Diest Station.  Na het parkeren van de auto, heb ik mij direct aangemeld aan het loket voor de speciale assistentie die ik enkele dagen voordien had aangevraagd.  Normaal moet je minstens 15 minuten voor vertrek aanmelden, maar ik was vroeg vandaag. Een NMBS medewerker vroeg of ik nog kon stappen en als vervolg toen de trein aankwam tilde hij mijn licht-gewicht rolstoel op de trein.  Al hoewel het een sneltrein was naar Brussel, was de wagon nog zo een hele oude, je kent ze wel, één waar je letterlijk omhoog en naar binnen moet klimmen. Met mijn EDS is dat niet evident zonder je schouders, heupen of andere gewrichten te ontwrichten. Ik was dan ook vergeten hoe moeilijk dat was voor mij sinds ik al lange tijd niet meer per trein reis. Het moet een zicht zijn geweest.  Stel je voor, een volslanke vrouw in een rode jurk die probeert omhoog te klimmen en een NMBS man haar bij haar billen van onder omhoog aan het duwen is.  HAHAHAHAHAHAHAHAHAHA.  Gelukkig sta ik vrij positief in het leven en probeer ik de humor ervan in te zien.  Ik heb mij ziek gelachen, maar de meeste mensen zouden het als genant hebben ervaren.  Ach de man was erg vriendelijk en behulpzaam.

Aangekomen in Brussel Centraal werd ik snel van de trein gehaald met een brug en de medewerker legde uit in Frans waar ik de lift kon vinden.  Tot nu toe geen probleem.  De lift kon alleen één verdieping omhoog en ik bevond mij op een tussenvloer die naar verschillende uitgangen leidt.  Ik zag Horta, Kunstberg, Magdalene, enzovoort.  Ik probeerde ook te letten op tekens voor een lift of voor handicap tekens. Moeilijk te vinden.  Dan maar richting Kunstberg waar ik moest zijn en dan zou ik wel zien hoe ik boven raakte. Onderweg kwam ik gelukkig een vriendin tegen van een andere patiëntenvereniging. Als ik haar niet was tegen gekomen weet ik niet hoe ik tot de Kunstberg was geraakt, of in welke staat eerder. Ik ben geen opgever, ik geef niet snel op, ben eerder koppig en al moet ik kruipen ik zal ergens raken als ik mijn hoofd ernaar toe zet.  Geen lift te bespeuren, wel een roltrap. Gelukkig kan ik nog stappen zo ik stapte uit mijn rolstoel om die verbaaswekkende mirakeleuze genezing te ondergaan, stapte op de roltrap en nam mijn lichtgewicht rolstoel de roltrap langzaam en voorzichtig omhoog zoals je een kinderbuggy zou meenemen.  Ook niet echt evident.

EEN BERG VAN DRIE VERDIEP HOOG

De uitgang kwam uit op straat precies aan de onderkant van de Kunstberg.  Mijn getrainde oog liet ik dwalen over het terrein om naar de ingang van het Business Center te speuren. Het kon toch niet waar zijn dat we helemaal boven aan de heuvel drie verdiepingen hoog moesten klimmen om met een glazen lift drie verdiepingen onder grond te moeten gaan??????  Ja dus, er zat niets anders op om de nogal gladde heuvel samen te beklimmen.  Mijn vriendin duwde me langzaam omhoog, terwijl ik als een gek meehielp draaien aan de wielen en proberen mijn schouders niet uit de kom te draaien zoals ik meestal doe.

Zelfs in de sneeuw is Stockholm toegankelijk

Het was een mooie locatie voor een congres, maar semi toegankelijk.  Niet evident voor de meeste rolstoelstoel afhankelijke personen.  Veel heuvels op, lift in op en af tussen de verschillende zalen en niet veel ruimte voor rolstoelers.  Ik was blijkbaar ook de enige rolstoelgebruiker die de uitdaging aanging om naar het congres te gaan. De toilet was het meest rolstoeltoegankelijk.  De rest was toegankelijk maar niet echt gebruikers vriendelijk.

Ik had al voorzien dat het congres zou uitlopen. Maar assistentie moet je minsten 24 uur van te voren aanvragen en voor de zekerheid had ik de trein van 16u19 richting Diest aangevraagd. Dat houdt in dat ik minsten om 16u04 mij moet aanmelden bij het aanmeldpunt, in Brussel Centraal is dat aan loket 1.

EIGEN BODYGUARD EN ZOEKTOCHT NAAR LIFT

Rond 15u35 was de afronding nog bezig en besloot ik zonder vriendin richting Centraal te vertrekken om zeker te zijn mij op tijd aan te melden.  Op de heenweg had ik geleerd dat het niet evident was om op de juiste plaats van het station met een rolstoel te raken en ik moest ook nog mijn jas uit de vestiaire halen. Aan de vestiaire stond een beveiligingman en ik vroeg hem wat de snelste en gemakkelijkste manier was om met een rolstoel naar het station te raken. Hij vroeg of ik alleen reisde en ik  bevestigde. Resulaat, ik krijg mijn eigen bodyguard om mij naar het Station te vergezellen. Wat een dienstverlening en wat was ik dankbaar want het was niet evident om daar alleen naar toe te rollen en ik had zeker en vast minstens één schouder uit de kom gehaald laat staan enkele vingers of een pols! De beveiligingsman rolde me tot aan de onderkant van de fameuze heuvel en bracht mij zelfs tot aan de overkant van de straat. Ik bedankte de man in mijn gebrekkig Frans en hij wenste me een fijne dag is zijn gebrekkig Nederlands.

MMMMmmmmm, nu binnen het station raken.  Men had mij verteld waar ik de ingang kon vinden, zo vrolijk rol ik op de even stoep naar de ingang. BOEM PATAT!  SH*T, pardon voor mijn taal! Zodra ik binnen sta, zie ik de hoofdhal en de loketten waar ik mij moet aanmelden.  Nergens bespeur ik, jawel weer met die getrainde ogen van mij, een ingang zonder trap. Hoe raak ik daar binnen? De trap was halfopen en veel te stijl om met rolstoel of te voet naar beneden te gaan.  Ik heb thuis een traplift staan om op de bovenverdieping te raken en deze trap was nog stijler en langer dan thuis! Tenzij ik heldhaftig mijn rolstoel over de railing gooi en hoop dat in het proces de rolstoel niet op de hoofd van een toevallige voorbijganger zou neerstorten en ik op mijn billen naar beneden stuiter was er geen ander optie mogelijk. Was het niet voor de toevallige voorbijganger had ik mij gewaagd voor dit avontuur, maar dat risico voor iemand anders zijn leven wou ik niet nemen. Dan een andere ingang proberen en een anderen. Nee dus! De beste optie was direct naar de tussenverdiep te gaan. Daar kon ik met mijn rug tegen de trapleuning als ondersteuning met mijn rechterhand langs de trapleuning, langzaam als een slak stap voor stap naar beneden stappen, terwijl ik met mijn linkerhand op een handvat van mijn rolstoel heel heel erg langzaam naar beneden stapte.  Gelukkig was er een Waalse moeder en dochter die mij naar beneden hebben geholpen. Hartelijk bedankt totaal onbekende engelen van vrouwen. Het was druk aan het station en de meeste mensen hebben een druk eigen leven zonder zich te bekommeren om een medemens. Jullie wel, hartelijk dank bij deze.

VAST IN DE LIFT

Toen ik mij terug in de stoel had geïnstalleerd en een paar keer diep had geademd om bij te komen, ontmoete ik voor de eerste keer, wat later bleek, mijn derde reddende engel van de dag. Hij in slecht Nederlands en ik net zo slecht Frans hebben toch met elkaar gecommuniceerd.. Super vriendelijke jonge man, beeld je voor een jonge man tussen 25-30 jaar type eco-man. Hij hielp mij naar de lift. Blij dat ik op tijd was rol ik de lift in en druk op de knop naar boven. Niets gebeurde, deuren blijven openstaan. Ik had toen gewoon moeten vertrekken, maar ik begreep ondertussen dat dit de enige lift naar boven was. Nog maar eens proberen. Ahaa de deuren gaan dicht, goed nieuws. Dacht ik toen.  Er gebeurd niets, deuren toe, geen beweging naar boven of onder. De deuren willen ook niet meer opengaan. 10 minuten zit ik daar vast, van alles aan het proberen. De alarmknop werkte niet, of tenminste wat een alarmknop moest zijn. Ik kan me niet herinneren hoe de deuren opende, maar heb wel een voorbijganger nabij de knop buiten zien staan, misschien heeft hij wel op de knop geduwd voor mij (een andere engel?) Zodra de deuren opende vloog ik met mijn stoel naar buiten. Het was niet dat ik in volle paniek was, maar echt prettig was die ervaring niet.

Ik begon maar rond de verdieping te rollen zoekend naar een eventuele lift, eender welke oplossing uit deze situatie. Ik wou naar huis. De trap op klimmen met mijn rolstoel was geen optie, zeker niet met mijn kapotte knie. Ik had het al overbelast, maar als ik dat had gedurfd lag ik nu in het ziekenhuis. Een trap af is gemakkelijker voor mij dan een trap op. Reddende engel twee, kwam op mijn pad. Een technicus of een NMBS klusjes man. Een kleine Franstalige man die zeer goed Nederlands, weliswaar met accent, maar hé ik spreek ook met een Nederlands accent. Weet je wel, type klein maar fit en goed gespierd. Mevrouw, ik zal uw helpen naar de lift en kijken of die kapot is. De man test de lift. De deur gaat toe, het gaat omhoog, vervolgens omlaag en komt weer terug.  Madame ik denk dat het weer werkt, maar ik zal u boven begeleiden.  Wat was ik die man dankbaar. Samen gaan we de lift in. Hij drukt op een knopje en de deuren gaan toe. We staan stil. 'Geeft niet mevrouw, even geduld hebben, het zal zo vertrekken' zegt de man enkele minuten later.  In andere woorden geen paniek, het komt goed. Ik blijf kalm. Na een drie tot viertal minuten begint de man op allerlei knoppen, weliswaar in een kalme en rustige manier, te slaan. Niets, precies zoals ik eerder meemaakte.  De man besloot dan maar als een ware tarzan de deuren open te forceren. De eerste keer lukte niet. Zo meneer belt alvast naar zijn collega's via zijn telefoon/walkie-talkie en meld mij ook alvast aan dat ik er ben.  Hij had heel snel Frans gesproken, maar ik denk dat hij had geregeld dat iemand mij verder zou begeleiden en dat ik nu ook aangemeld was. Tegen deze tijd zijn er al enkele meerdere NMBS medewerkers buiten de lift aanwezig, een soort hoofdconducteur en ik weet niet wie allemaal. Mijn sterke klein meneer probeert nogmaals zijn na 5 minuten VAST tarzan truc en de deuren openen. Ik zie ook dat redende engel nummer drie ook al kwam aanvliegen, je weet nog wel, eco-man. Tarzan legt uit dat eco-man mij verder zal begeleiden.  Zo geen lift naar buiten of naar spoor 1 waar de trein richting Diest vertrekt, maar wel een lift die naar spoor 3 gaat. Mijn Frans is niet goed maar heb daar maar rustig gewacht.

TREIN NAAR NAMEN

Dan komt er plots een trein aan en ik wordt richting de trein geduwd. Huh even paniek dat is de trein naar Namen??!? 'Le train apporte à votre à la gare du Midi où ils vont vous prendre à la gare de Diest.' Aha deze trein brengt me naar Station Noord waar ik zal overstappen op de juiste trein. Aangekomen op station Noord woord ik in allerijl van de trein gehaald en in sneltempo (lees bijna rennend!) naar een industriële lift gebracht, via de ondergrondse tunnels voor medewerkers en normaal niet toegankelijk voor reizigers en een tunnel waar je op ieder moment gigantische ratten verwacht zich te laten zien, om uiteindelijk op de trein richting Diest te worden geduwd. De trein richting Diest heeft op mij moeten wachten omdat de perronverantwoordelijke meerder malen over de walkie-talkie hoorde roepen of het nog lang zou duren al van voordat ik de lift inging.  Gelukkig is deze lift niet vast komen zitten.  De trein naar Diest had dus 12 minuten vertraging door mij. Mijn excuses aan mijn collega reizigers op de trein. Maar joepie, ik zat uiteindelijk op de juiste trein huiswaarts. Het was een lange en avontuurrijke dag.

...maar het was nog niet over hoor: als een koningin in een koets gedragen

Het station in Diest is enkel toegankelijk vanaf perron 1 normaal, deze keer ook van perron 2, wel eenmalig maar toegankelijk. Als we Diest binnenrijden komen we aan op perron 2. Ik dacht direct bij me zelf hoe raak ik bij mijn auto. Geen paniek Charissa, de NMBS heeft in sommige stations tegenwoordig trappenklimmers, zoals in Brussel Centraal die ik helaas niet persoonlijk heb gezien, misschien heeft Diest wel één. Plots staan er twee grote kerels naast mij die mij van de trein tillen. Twee hele sterke en supervriendelijke kerels. Reddende engelen nummer .... Acht ik weet het niet meer maar de NMBS heeft meer dan genoeg vriendelijke medewerkers en super behulpzaam.  De mannen rollen me naar de trap en wachten tot het volk verdwenen is. Ik kijk voor de trap, onder de trap, naast de trap en geen klimmer te bespeuren. Plots wordt ik met stoel et al omhoog getild. Een heeeeeeeel eng gevoel, als een koningin in koets gedragen. Brrrr vond het maar niets. Ik zei toen dat ik wel wat kon stappen en als ze mijn rolstoel konden tillen, kon ik misschien wel heel langzaam de trap afgaan, alleen de trap omhoog aan de andere kant is een ander verhaal.  Desnoods liet ik mij met mijn kont op de trede één voor één naar beneden zakken.  Nee dat mocht niet van de mannen. En zo met twee mannen aan mijn zij stap ik heel langzaam naar beneden, lees wordt ik practisch naar beneden en later weer naar boven gedragen!  Je had de mensen op de perron 1 moeten zien staren naar dit komisch zicht. Ja deze engelen stonden er zelfs op om mij helemaal naar mijn auto te begeleiden en zelfs om mijn rolstoel in mijn auto to plaatsen.

WAT IK DIE DAG GELEERD HEB

• Er zijn nog altijd meer dan genoeg super vriendelijke en behulpzame mensen op de aarde. De aarde is nog niet verloren.
• De medewerkers van het NMBS zijn vriendelijk, behulpzaam, en klantvriendelijk
• De infrastructuur in België is alles behalve toegankelijk: gebouwen of het openbaar vervoer
• Het is triest gesteld om onafhankelijk te zijn van anderen als persoon met een handicap!
• IK NEEM NOOIT MEER DE TREIN EN VERPLAATS MIJ MET AUTO ZO LANG IK NOG KAN! IK HEB GEEN ANDERE KEUZE ALS IK WIL RAKEN WAAR IK WIL ZIJN!

THE ENGLISH VERSION:

Yeez, what a day, what an adventure, a story I will always remember! If I had known what I would experience and come across that day I would have driven the car to the National Congress for Chronically at the Kunstberg, Brussels. As president from a patient foundation, I wanted to experience myself travelling with the wheelchair by train to Brussels. It is almost one year ago that I travelled by plane and public transport to Stockholm, Sweden. Both airports were accessible, but the public transport experience is a “Walhalla” in comparison to Belgium!

PUSHED UP (BOTTOMS)

Thursday morning ready to go I took off to Diest train station. After parking the car, I checked in at the tickets window as instructed for the special assistance I requested several days earlier. Normal procedure determines that one must check in as instructed location at least 15 minutes prior to departure. An employee from the Belgian Rails asked if I were still able to take some steps and I confirmed that. A while later he lifted my light weight active wheelchair on the train. Even though the train was an express train, it was an old model train, you know the kind, one where you need to climb and pull yourself up to get inside. It is not simple with EDS to climb without dislocating any limbs like a shoulder, finger or hip. I had also forgotten how difficult it was to climb in such a train as I haven’t travelled by train in years. It must have been a quite comical site! Just imagine:  A not so skinny woman (I could lose a lot of pounds) in a red dress being pushed Bottoms up!  HAHAHAHAHAHAHA. It is fortunate that I am a positive thinker as well as try to see the humor of life.  It must have been hilarious to watch, I know that I laughed myself! However, most people would rather have experienced as a most embarrassing moment. Oh well, the man was friendly and helpful!

Upon arrival at Brussels Central station, I was quickly helped from the train by a special bridge plank and the employee explained in French how I could find the elevator. Till now no problems.  The elevator could only go up one floor and I found myself at a sort of in-between floor that lead to several exits. I saw signs for Horta, Kunstberg, Magdalene, etc.  I also tried to look for signs for an elevator or for handicap signs. Difficult to find.  I decided to follow the exit for Kunstberg as I needed to go there. When I got to the exist I would figure out the next step. On my way to the exit, I ran into a friend from another patient foundation. If I had not met her I would not have known how to get to Kunstberg in one piece! I am not a quitter, I don’t give up, I am rather stubborn and even if it means that I have to crawl, I will try to get somewhere once I made my mind up. Near the exit not an elevator to be found, there was an escalator. Luckily I am still capable to take some steps and I decided to undergo the miracle healing, got out the wheelchair stepped on the escalator and slowly went up the escalator holding my chair like you would a child’s stroller. Not a simple job!

A THREE-STORY MOUNTAIN

The exit ended across the street from the station at the bottom of the Kunstberg (Arts Mountain). My trained eye scavenged the territory searching for the entrance of the Business Center.  It could not be so that the entrance would at the top of the hill, three stories high climb to enter the glass elevator to go three floor underground?!?!? Oh yeah, no choice but to climb the slippery hillside. My friend helped to push while I as a mad woman turned the wheels around while trying to keep my shoulders from dislocating like I usually do.

It was a nice location to hold a congress, but it was semi-accessible. Not easily negotiable for most wheelchair users. Lots of hills up, elevators up and down to reach different rooms and not so much room as a wheelchair users. Apparently, I was also the only person with a wheelchair who attended the congress. The toilet was the most accessible of all. The rest not so accessible and not wheelchair friendly.

I had foreseen that the congress would go over time. Special assistance must be booked at least 24 hours prior to departure and just in case, I had booked the train from 4:19 PM departing to Diest. That meant that I would have to check in at the special assistance meeting point no later than 4:04 PM at Brussels’ Central Station.

MY OWN PRIVATE BODYGUARD AND SEARCHING FOR AN ELEVATOR

Around 3:35 PM the congress was in its final moments, however, I decided to leave early so that I would get to Central Station in time to check in. On the way up, I learned that it was difficult to reach the right place at the right time at the station as it was so complex and many stairs, and I also had to retrieve my coat at the cloakroom. While retrieving my coat, I asked a security man what the fastest and easiest way to the station was with a wheelchair. He asked if I travelled alone, I confirmed. OUTCOME: I had my own bodyguard that brought me to the station. What a service and I was grateful because I would have at least dislocated one shoulder on my way there negotiating the hills and slippery paths. The bodyguard brought me down the mountain and even crossed the street. I thanked the man in bad French and he wished me a nice day in bad Dutch.

MMmmmm, now to try to get into the station. I had been told where to find the entrance, so very innocently I rolled toward the entrance.  BOOM  BANG! SH*T, excuse my language! As soon as I entered the hall, I see the location of the main hall and the check-in point. How on earth do I get there? The stair was half open and far too steep to take my wheelchair by the hand and slowly step negotiate foot by foot down the stairs. I searched again with a trained eye and nowhere I see any entrance without a stair. How the hell do I get in there? At home I have a special stair elevator to help me upstairs. Unless I threw my chair over the railing and would my chair then crash on the head of an innocent passer-by and I would bounce on my bottom from step to step, I saw no other option. Where it not for the innocent passer-by, I would have chosen this option, but the risk of injuring someone else is not on my list. I searched around the outside for other entrances, tried several but found none. The best option was to go directly to an transit floor. To go there I could slowly go down the stairs one step at a time while supporting my body through leaning against the staircase wall and bannister with my back and right arm, while holding the wheelchair with one hand. Luckily a mother and daughter helped me with the wheelchair while I slowly walked down. It was very busy in the station and most people were too busy leading their own lives without considering other people. You both did, thank you for that.

STUCK IN THE ELEVATOR

After I installed myself again in the chair and after deep breathing a couple of times, I met for the first time, what would seem later, my third guardian angel of the day. He talked bad Dutch, I talked bad French, but we were able to communicate with each other. He was a very friendly young man, imagine a young man between 25-30 years old, the Eco Man type. He escorted my to the elevator. Glad to be still on time, I entered the lift and pressed the button to go up. Nothing happened, the doors remained open. I should have followed my intuition and leave, but stubborn me kept trying as I realized that this elevator the only way out was. Ah the doors finally closed, good news, I thought. But nothing else happened. The doors remained closed and no movement to go up or to go down or for the doors to open.  About 10 minutes stuck I was, trying everything to get the thing to work. Even the alarm button failed! I can’t remember how the doors opened but I remember seeing a passerby come close by, maybe he pushed the open button (another guardian angel?) As soon as the doors opened, I flew out of the elevator. I was not in full panic, but it was not a great experience either.

I started to roll around the floor looking for another elevator or any other solution out of this situation. I just wanted to go home. Climbing the stairs up with my chair was no option, especially with my  busted knee. I had already done too much and if I had dared at that moment to carry my chair and myself up the stairs, I would have ended up in the hospital. A stair down, is easier to negotiate than a stair up. Guardian angel number two, walked toward me out of nowhere. He was a technical Belgian Rail handyman. A short French speaking man who could speak decent Dutch, with an accent, but he I speak with a Dutch accent as well. You know the kind, a short, fit, muscle man. “Madam shall I help you to the elevator and look to see if it is broken” he said after I explained my situation. The man tested the elevator. De doors closed, it went up, it went down and came back. “Madame I think that it works again, but I will bring you upstairs.” How I appreciated this man. Together we entered the elevator. He pushed a button and the doors closed. We stood still.  “It does not matter, madame, be patient, it will depart any moment” the man said a few minutes later. In other words, don’t panic, all will be all right. I remained calm. Three to four minutes on, the man started pushing and hitting all kind of buttons, but in a calm and fashionable manner. Nothing happened, just like I experienced earlier. The man decided to open the doors Tarzan Style. It did not open the first try. The man then called his colleagues to discuss the situation in French faster than I can understand, but I think that he checked me in and called others to come retrieve and help me on.  At this time there where several Belgian Rails employees outside of the elevator. My little strong man tried the Tarzan solution another time after we were about 5 MINUTES STUCK. The doors opened and at the same time I see my guardian angel number three, Eco Man arriving. Tarzan explained that Eco Man could help me further and ensure that I could get on the train. No elevator to outside or to track 1 where the train to Diest would depart, but there was an elevator to track 3. My French is not so good, so I decided to wait patiently and see what would happen.

TRAIN TO NAMUR

A train approached and I was pushed toward it after it stopped. He, quick temporary panic through my head: the train to Namur?!?!? ??!? 'Le train apporte à votre à la gare du Midi où ils vont vous prendre à la gare de Diest.' This train will bring me to the North station where someone will bring me to the right train to Diest. As the train stopped at the North station, someone urgently retrieved me from the train and in quick pace rolled me to an industrial elevator. (read ran me to an elevator) We entered underground tunnels, and I expected to see large rats at any moment. It was usually only for employees but today also for me. At least the elevator did not get stuck. The train had been waiting on me even before I entered the tunnels downstairs. The track responsible kept calling to the handler if we were already or almost there, the train had a 12 minute delay because of me. Sorry fellow travelers for the trouble I may have caused.  But yes, I finally was aboard the right train and going home! It had been a long but adventurous day.

...however, the day was not over yet: like a queen in a carriage carried

Diest train station is usually only accessible from platform 1, however, this time exceptionally from track 2 as well. Approaching Diest, we disembarked at platform 2. Hell, I though, how am going to get to my car? Don’t panic Charissa, remember you read that the Belgian Rails purchased stair climbers a few years ago. Then two big guys lift me from the train and I find myself on the platform. Two very strong and friendly guys. Guardian Angels number… It doesn’t matter, the Belgian Rails has more than enough friendly employees. The men rolled me toward the stairs and waited for the crowd to disappear down the stairs and into the tunnel. I looked down the stairs, next to the stairs, behind the stairs but no stairclimber. Suddenly I was being lifted into the air like a queen on a throne. Brrr that was scary and I did not like it at all. I told the men that I am able to take some steps and maybe I could slowly step down myself. No that was not possible but we reached a compromise.  The two men stood next to me as support as I slowly went down the stairs (read I was stepping through the air). So I carried down through the tunnel and back up. You should have seen the faces of the people on platform 1. It must have been quite a scene! Yes these two angel even insisted on bringing me all the way to my car and even lifted my wheelchair into the car.

WHAT I LEARNED THAT DAY

• There are still more than enough super friendly and helpful people left on this earth. Earth is not lost yet.
• The Belgian Rails employees are friendly, helpful, and customer friendly.
• The Belgian infrastructure is not accessible: buildings or public transport.
• A disabled person in Belgium can sadly not be independent and has to rely on help from others!
• I WILL NEVER EVER TAKE ANOTHER TRAIN AND WILL USE MY CAR AS LONG AS I CAN! I DO NOT HAVE ANY OTHER CHOICE IF WANT TO GO WHERE I WANT TO BE!

Just surviving

It has been quiet on my end. It is a time for relaxation and vacation. Or so it should be!  For me it is all that but also a time to survive each day, getting through, day by day, creatively. 

Last month I ventured with my husband and son to Hungary for our annual vacation. The trip to Hungary would take at least 14 hours by car. The week before our trip I tried to rest as much as possible gearing up for the trip. It had been decided that the trip would be driven over two days with a stopover in Regensburg, Germany. This way, frequent rest stops, would hopefully be less severe on my body and Ronny could do the driving all himself. This way, I would still be human more or less once we arrived in Hungary and I would not need waste days recuperating from the trip! Of course, I left with an arsenal  of medication and my wheelchair as my faithful companion. 

You see, dear reader, an EDS patient, gets tired and pain from simply sitting in one position during a car trip. The life of an EDS patient is not simple as we need to recuperate from most things we do. That is why most of us use a wheelchair to help save energy to get through the day and to minimize the pain we experience. Everything an EDS patient does takes far more energy than a healthy person and everything we do causes pain. You can see how we are always living in a vicious cycle.

What most people don't understand is that EDS is far more than just dislocating our joints. Connective tissue is everywhere, in our joints, our organs, our skin. Connective tissue is just that it connects everything in our body, keeps it all together. An EDS patient has faulty connective tissues. For example, connective tissue keeps all joints together. An EDS patient relies on their muscles instead of the faulty tissue, therefore using more energy than healthy people. The autonomic system is under extra stress and gets out of bound sending wrong signals. The digestive system etc does not work as it should. You see EDS is much more than dislocated limbs.

Now you may understand that I focused on getting through the vacation, trying and enjoying it all on my own terms. That meant that I could spend less time with friends, less time with other important things. 

You may think that all I do, I must be healthy. No dear reader you are so wrong. Everything I do comes at a price: pain, discomfort, exhaustion, fevers, deregulated systems..... A price that not only I feel but my family as well!

I choose to give up valuable time for my work as president of the patient foundation. I give up my time and that of my family. I also pay the price heavily. Behind close doors, I have excruciating pain, am at times so tired that lifting my head up is an immense effort. This is what I choose to do not to show the world, not to show friends, not to show patients. But belief me, I am not the super woman most people think I am. I am an Ehlers-Danlos patient who chooses to live life as much as I can and who chooses to pay the price for it. I am trying to live in harmony with my condition and choose to do my suffering behind closed doors.

All I ask from the rest of the world, don't judge a book by its cover. I and other patients may not look sick but we are just trying to survive day by day, hour by hour, each on our own way, on our own terms!

On Saturday 7 September, the foundation is hosting a Bingo Benefit! Come and/or support us, more info here:  http://www.bindweefsel.be/?q=node/117

Incomprehension, lack of compassion, bullying

It keeps amazing me that most people choose to fail to see the realities of the world. Failing to see how people with power abuses them, how they choose not to see the despair and pain in the world, choosing not to see the corruption, injustice and the like. If it doesn't involve me directly it does not matter mentality. It must be a way of surviving, choosing to follow the main flow. I can accept that people choose to do so, it is their lives, right!

But what angers me is that one step further. That step that causes the herd to follow a leader or two. That step when people empower themselves to insult and hurt others so that they themselves will stay clear out of trouble with the mass. Following like they have no mind of their own.

However, most troubling and scary is the fact a group of people choose to bully others who are not like them. Hurt them, humiliate them, belittle, and purposely cause pain to others so that they may feel better about themselves.

You know the kind acting like children bullying others because it somehow empowers them emotionally and they feel better about themselves. Amazing how they think that they do no harm, publicly laughing pointing and worse actions, not thinking about how the other person will feel.

I started writing this because as president of a patient foundation, I witness and hear many things that are outright appaling. Incomprehension of illnesses, no compassion for people in a wheelchair, etc. But actually, this could be about anyone, any person could be a target. A person does not even have to be different!

I choose to have a hard skin, many have tried and failed to touch me in that way, but oh how it angers me to see people close to me hurt through unnecessary remarks, being made a laughing stock.

I have experienced how one gets treated in a wheelchair and how freaky my EDS can be to others! It is therefore no reason to treat another human being with disrespect because one does not know or understand the situation.

It is easy to say not to listen and to tell an EDS or any person that they are beautifull in their own way. It is easy to say that those bullies, even if they are beautifull on the outside, they are down right ugly on the inside!

All I can hope for is that a bully reads this and the next time they think twice before they open their mouths. Maybe next time have some respect for another human being!

So as the world is today, I fear that will never happen as long as people are insecure and unhappy about themselves!

You know I rather have EDS and be happy then one of those insecure ugly people! You know who I am talking about!

Friggin Pain

Been keeping it quit, not complaining much. Not complaining to the people I care about, not letting the world know how I have been feeling.

With tears in my eyes I am writing today, maybe it will help me deal with the pain.

PAIN ...........

The question is rather, where do I not have pain.

I did not want to complain so it would seem that I was trying to updo others in pain, but reality is I have a lot of Friggin pain.

The last thing I wrote was how shot to hell my right leg is. End of June I am getting a second opinion on it. Even with the knee replacement about two years old, my bone structure is also shot to hell. So the only thing to do is walk only in house, the rest in Wheelchair. Hoping that infection and inflamatory reactions stay away, because one day maybe this year, maybe in five years depending on circumstances, my leg will need to be amputated.

So wheeling around has caused my right shoulder, already in pretty bad shape, to further dislocate and my collarbone as well. Both keep popping out, pain and inflamatory reactions.

I:ve been doing much everything with my left arm. Result pain and elbow keeps dislocating causing inflamatory reaction and little bones popping out of place in my hand and wrist as well. Friggin pain.

I am afraid to go to sleep at night, because I keep waking up from the friggin pain and my body spread out like I just jumped of a 12 story building, knee, shoulder, elbow, what not out of place.  The worst pain is the shooting pains in my back, specifically in the lumbar area. Several vertebrae out of place. Friggin pain.

Just back from the physical therapist, stumbling in the house from the pain. Can't walk, can't use the wheelchair, in Friggin pain.

Yet I keep smiling like nothing is the matter, pretending that I don't have pain. Today the smile has dissapeared with tears instead. Nausea from the pain has overcome me.

FRIGGIN PAIN!

And the Jackass of the Month is ....

Every EDS-er comes across at least one to three doctors in their life time who deserves a 'Jackass of the Month' award. You know them. A doctor pretty good in his field, knows what he is doing in his speciality, but when it seems he or her can't help, understand or acknowledge your EDS, he/she turns into the biggest jackass you have ever encountered! Before my reasoning becomes apparent, I need to give you some background info first.

Almost two years ago to date, my jackass determined that my knee was shot to hell. I had been having problems with my right knee for a while and I could only bend my knee about 5 degrees. Around this time two years ago, I was scheduled for a Total Knee Prosthesis operation. I was to remain in the hospital for about 5-7 days. I went into the operation chamber thinking I was getting a Total Knee Prosthesis, but came out with a Partial Knee Prosthesis! I ended up staying about 3 months in hospital with many problems and when I finally left I was only able to bend my knee about 90 degrees.  Two years later I can bend my knee no further.  I always questioned the doctor why he changed his mind to give me a partial. Our Hate-Love relation had started.  Ronny my husband could not stand him, finding him a big mouth, cocky, egocentric man. I agreed with Ronny but still had respect for his work. I think we all know the kind, a know all, don't judge my work I never do anything wrong and I am a god kind of person.

Well a couple of weeks ago, my knee started swelling up, getting red and I began getting a fever. Walking around became difficult. At first glance, it looked like a possible infection, but my GP and I remained calm and first started doubling the anti-inflammatory meds and icing the knee. I already have a wheelchair for longer distances, but now I needed to use the chair almost all of the time. The pain is awful and knowing that I have high pain levels.  Luckily I was able to see my specialist pretty soon in a week's time.

The Appointment

I was at my appointment on time and arrived before people who had appointments and also arrived after me. Still, it was extremely odd that they were called in first. I had to wait more than an hour to finally receive my turn! It may have been coincidence but the mood was set! It gave me a feeling that the good doc did not want to meet with me.

He still knew who I was and seemed a bit edgy. He asked me what he could do for me. I started to tell him that I indeed have EDS HT with a possible overlap with the Classical, that I have been having a fever, my knee swelling up, like I mentioned above.  I then proceeded to tell him that it felt like something in my knee was moving around (not my kneecap) and felt like I could feel the prostesis move around in my legbone.

'DON'T YOU DARE STICK IT ON MY PROSTHESIS!'

Excuse me, did I say that the prosthesis was broken? Did I blame the doc for making a mistake? NO NO NO NO, I simply said that I felt like something was moving around!!!!!!!!

The doc went further with his very professional attitude:

'What are those crazy things on your fingers, you are not normal he! I have never encountered anything like it in my life and whole career.'

I explained that I was wearing silversplints and their function, while he just rolled his eyes. As expected he send me for some x-rays. Everything appeared normal, like by most EDS-ers.

Back in his office about 45 minutes later, he informed me that I had no reason to blame his work as everything seemed alright at first glance. He examined my knee further and told me that my knee was completely shot and that I need was of a Total Knee Prosthesis. I asked how to go on further, what the next step is.

'You are a problem patient and I will not treat, operate or follow you up any further. I will not do anything anymore except if you need some anti-inflammatory prescription I will write it for you.'

What!!!!!!!! I am not ready to sit in a wheelchair, something has to happen. Maybe an operation is not the right choice, but I can't walk around with a broken busted knee!!!!!!!

Well this zebra has met her Jackass of the month. I may be an empowered patient but this jackass had me stumped, flabbergasted.  How can you refuse to help a patient? Will I shot your good success records to hell? How about your code as physician to help someone in need?

He proceeded:

'I also don't believe that you can have dislocations of your knees or any of your joints! It is not possible to have dislocations so as you tell me. You are nothing but trouble and I will not have you as patient any more!'

How can an intelligent normally good physician make such statements. I can understand if a doctor does not know how to treat an EDS patient, but to treat me the way he did. Are you saying that EDS in my head is, that I am crazy!

JACKASS! is the only thought left in my mind. Not worthy of the doctor title!

My alter ego/work as chairperson Flemish Patient Foundation HereditaryConnective Tissue Diseases

When I was finally diagnosed with EDS and already disabled unable to return to the work force, I decided to give my life more meaning. I missed the social contact with colleagues and needed something to keep my mind active! In the EDS world, I had made many new friends, some real good and close friends, and most importantly I met my best friend, another soul mate Vicky. Discussing EDS and Marfan issues regularly with each other on the phone or via social media, I jokingly told some friends:

'One day, I will become the chairperson of the patient foundation, you see then my ideas and our ideas will become reality!'

Never in my mind would I have thought that things would change so rapidly, and that I would actually lead the foundation. It has been life changing and given me a feeling of purpose, no longer the wall flower at home. So it came about that I also, a few nights ago, gave my first lecture about Ehlers-Danlos.

An organisation with their main focus on charity had approached Vicky to ask if we gave lectures together with the geneticist from University Hospital Ghent, world renown specialist for connective tissue disease, about EDS. We weren't sure if Ghent could fit such lectures in their overly busy schedules, but to our pleasant surprise Prof. Dr. Fransiska Malfait somehow was able to make time. We are forever grateful to the good doc in helping us spread EDS awareness on her own spare time!

I had practiced that day my lecture at home with my grandson Seamus, 5 months old, as audience. Knowing that Seamus was satisfied and enthusiast about my performance, I left as prepared as could be early in the evening to pick up Vicky. I was not worried that much. Somehow I would wing it like I always do, adrenaline would carry me through the exhaustion. As EDS patient evenings are a struggle and I am not all in my element then. Of course, being especially dressed for the occasion including wearing make-up which I usually skip, Vicky and I gave each other a quick look over and approved each other. We were off to the next new adventure.

We were welcomed and received with grandeur at a posh restaurant. The lecture would be accompanied with a cocktail hour and dinner. A few minutes after our arrival dr. Malfait arrived and the evening kicked off. Between the main course and desserts dr. Malfait gave a very interesting lecture about EDs, the types and subtypes. The audience hung on her lips. As she was explaining the beighton score, Vicky volunteered so that the doc could show how the beighton score was assessed. Both Vicky and I have the highest score possible a 9/9! We both have EDS HT with an overlap with the classical type (HT is hypermobility type or type III). As the doc bend a pinkie backwards and brought a thumb to the wrist, you could hear aws and ahs from the audience. It was very funny as you saw many people trying to do the same! Dear reader just picture ladies between 30 and 75 years old trying to bring thumbs to the wrist or bending their fingers! It was hilarious. After the doc finished the audience exploded in loud applause.

Dessert was being served and a few people went to smoke a cigarette outside. I joint them with Vicky. I must admit that secretly I was very nervous as I did not know how my lecture would be received. After dessert, my turn had come. I was introduced quite elegantly. My adrenaline kicked in.

I gave a witness account of living with EDS as patient, mother and chairperson. I told about the long road to diagnosis, typical symptoms, and our way of life while using myself as example to explain it. I am not afraid to tell about the lesser aspects of EDS in my life but also about the positive aspects it has brought in my life. I told about that patients are often misunderstood as we do not look sick, etc. I tried to use humor and honestly and I was afraid on how it was received. The room was so quiet. Am I boring, is it not interesting went through my mind, but I pressed on. i also described a typical day in the life of an EDS patient. Just after I had explained that with the exhaustion comes not being able to think of the right words or memory loss, I got stuck and a man in the audience helped by reaching out through providing the right word. I thanked him and laughing said:

'You see that is typical EDS'

The audience laughed with me and at the end of the lecture, I read Vicky's poem about her feelings and EDS which I thought would be perfect to close the lecture with. Vicky was a bit surprised, but secretly glad that I had done so.

Oof, finished! It was done and over with. At that moment, I looked directly at the audience, it was so quiet, so still and then a very loud applause! People got up and approached me to talk to me. Apparently, my goal was accomplished and my lecture was a big success! Worries gone!

Not long after, the doc, Vicky and I left again to go home! It was already 11 PM.

Tomorrow another day as patient, and mostly to rest!


At this moment I would like to make a special thanks to Prof. dr. Malfait in being so kind to make time available and to thank the organisation for providing this opportunity to help us in spreading EDS awareness. Thank you from the bottom of my heart.

(3/3) Me, myself, Stockholm, a crutch and a wheelchair

This is a continuation of my sole trip to Stockholm part 1 and part 2 

SIGHT SEEING

All the other delegates and friends had left the hotel and my flight was not leaving till 8PM. I was able to stay at the hotel till 6 PM, but I would be foolish not to experience Stockholm. I decided to go sight seeing.

A few kilometers from the hotel was the old part of town and I had read that there was a Christmas market. I decided to venture my way through snow and ice. Bundled up in layers of clothes, I wheeled myself out of the hotel. According to the reception staff, normally it would be about a 15-20 minute walk. The first part I travelled through the train station, so I could roll my wheelchair easily. Just before leaving the station, I took a small rest to recuperate. As I was waiting, still inside the building, a train station employee approached me to ask if I needed special assistant. Amazed I told her no, but thanked her. Turned out that at the exact spot where I was resting was a sign for waiting point for special assistance. Oops, I did not notice the sign previously, but was impressed with Stockholm's service to persons with a handicap.  Once I left the train station I had to deal again with lots of snow and icy roads. It was becoming very difficult to handle the snow and ice with a wheelchair so I decided to use my wheelchair as a walker for the rest of the way. After negotiating a few streets I continued my trip through the main shopping street which was sort of cleared of the falling snow.  Every 10 minutes of walking I took a rest as I cannot walk long distances. It was literally walking at snail pace, resting and slowly shuffling on and resting. It was so icy that I saw many people fall to the ground. A walk that was suppose to have taken 20 minutes had taken me more than hour but I finally saw the old city nearing. It was very pretty, the old buildings and the castle. Proud of my accomplishments, I pushed on.  I walked through the old town soaking up the sites and visited the Christmas market, still resting every 10 minutes or so. At the market, I grabbed something to eat and went back to the hotel to rest before going home. My site seeing trip that should have been a hour or so had taken 5 hours. At the end you can see some more pictures.

GOING HOME

Around 5PM I checked out of the hotel and went to the bus station to take the bus back to the airport. This time the driver was very helpful and helped me get my wheelchair in the luggage bay and at the airport he helped as well. It had been snowing all day, and I was worried that the airplane would have a delay. No worries, even though Bromma Airport is an old school airport where you still have to walk outside many feet to the airplane, the airport is very efficient and adept to the weather conditions. After checking in, I bought some things at Duty Free and waited in the terminal till it was time to board passing time surfing and face-booking.

I was sitting very close to the lady at the boarding gate. Close to boarding time her walkie-talkie went off and I heard her cursing into it. She did not realize that I could understand her and she was really really very angry. The conversation went something like this:

'Those stupid pilots, they are so stubborn. If they are told to park the plane at a certain spot they should not decide on their own that another spot better is for take-off. Stupid Belgian! Tell him to re park the plane at the designated spot because we have a special assistance case and at the spot where he parked we can not get the passenger on the plane!'

As she ended the conversation, the light for boarding went on and passengers started to impatiently cue to be able to get to the plane. The doors remained shut! As the crowd become more and more agitated that they had to wait, looking at their watches, wondering why the doors where not opening, the few passengers that had heard the conversation as well started to spread the story. Oh no, now I was getting angry and agitated looks from my dear fellow passengers as well. Finally 15 minutes later, the door opened but the lady stopped everyone from passing as she told them that a special assistance person needed to board first. Again angry looks coming my way. A nice young terminal employee approached me and together we went through the doors which he shut again after us. People seemed to forget that special assistance persons board first, but we are also the last ones to leave the plane at arrival destination.  The young man wheeled me through the dark, cold and snow to the plane where a special lifting container was waiting to hoist me aboard. Some ten minutes later after the container had been replaced with rickety metal staircase, the other passengers started to board the plane. Some passengers where still angry with me even though the plane departed right on schedule! I was lucky I had two seat for myself and the rest of the flight was quite uneventful.

Around 11PM our plane touched ground and after a long rolling ride to the baggage pickup, I was relieved to find that my bag was first to come through. Most passengers had take-on luggage, but with a wheelchair was it impossible for me. I found a clever way to attach my trolley to my wheelchair and like a little train I entered the arrival hall to see the happy face of my husband!

Around 1 AM, I finally was home and rolled into bed, exhausted from my trip but very proud of my accomplishments. My sole trip to Stockholm as a disabled person was over and I had enjoyed every minute of it. No weather, no wheelchair, no disability stopped me in turning this trip into reality!

borrowed picture taken during day to show airport

borrowed picture taken during day to show airport

Humour makes the Zebra Safari (EDS world) go round!

The last few days were heavy days resulting in a bad night of sleep (read not much sleep!!!), waking up quite groggy this morning! A true BITCH from hell. At least that is how I felt and I must have looked like one as well. Sadly, with a big smile, I have no picture to support the facts.

Luckily, my husband, woke up quite refreshed and good humoured! He helped me look at things and see the funny side of living in a zebra safari.

As I passed him I gave a quick hug and moved on not noticing that he veered backward to lean against me. 'He,' he said, 'I'm not as hyper-mobile as you!' I just helped him catch his balance on time or he would have been horizontal on the floor. That started the banter between us. Before I knew it we were in a stitch about EDS. OK, I realise that the situation may not be funny to you reader, but just imagine the scene in your head like you are watching a comedy on TV and I am sure a smile will appear on your face.

My husband is following a diet to lose a few pounds and I commented that he has no more love handles as I helped prevent a fall. My body, on the other hand, with EDS-HT with an overlap with the Classical, has many bumps and ridges. I'll admit it to you fellow reader, in plain facts, a gross amount of surplus belly skin leftovers from three pregnancies that never came quite right because of EDS. Not a pretty picture, I must add. I commented to my husband that he was nice and tight nothing like my flaps. Bless him as he told me that he loved my little mountains and that they were like rubber he could play with. Little mountains on which he could practice skiing and every day he could change the slope and follow another path. At first glance, my faithful reader, you may think that he meant this as an insult, but if you would have seen his eyes and the loving way he looked at me, you would definitely think otherwise. Dear reader just keep picturing the scene in your head and you will see the grotesque humour of it all. He grapped my tummy and slid the skin from side to side. Just at that moment I lossed my balance and my right leg went sideways with a dislocating knee in the most impossible stand that only an EDS-er can accomplish. Just picture the scene, I losing balance, arms wildly trying to catch my balance, my right hip and leg in a position and my knee bend in the strangest position, like the body of a jumper on the ground but then in mid-air.

Here the giggles came and we lay in a stitch. It was just too funny and too surrealistic like a slapstick. I said yes, I even can change the ski-jump in mid-air. We had tears in our eyes from laughing.

I can think of many such situations. Think about a group of Zebras eating together in a restaurant, all messing up with their food flying through the air while they all have their pinkies in the air like holding a cup of tea. Or the many times, a zebra just falls to the ground tripping over air. Or a zebra that hurts their toe because of an orange. I think any zebra could tell of many funny moments.

  

Or the fact that you strike a pose, like this picture from this morning and your husband says and places on Facebook:

'Ok, ze zit in een jaren twintig mood :-) dat ze maar niet de charleston gaat doen want dan gaat ieder lichaamsdeel een andere kant uit :-D' 

'Okay, she is fased into the twenties :-) She better not do the Charleston because then every body part will go in another direction :D'





You see dear reader, there is a humerous side of EDS, it is just on how you look at the situation. You yourself can choose to laugh or cry. I choose to laugh as it makes my Zebra life much better to cope with and it makes my Zebra Safari go round!

We are "Super women"......NOT!

Last month, I only published one item. There just wasn't time enough in a day to write or I simply did not have the energy to write more. Time has come to write a new article.

VICKY

CHARISSA

My best friend Vicky and I, were always convinced that we belonged to the "fitter" or "better" Ehlers-Danlos patients. We thought that our bodies were able to cope better and do much more than reality has learned us. That we both are worse off has been made clear to us, but more about that later!

The month January was a hectic month for both of us, in our free time as well as in our patient foundation time. The foundation has been inspirational to us, it has given us the feeling that we are can still mean something in this world. We give ourselves with full devotion and are gratefull to have the opportunity to mean something to others and ourselves. We are convinced that things are going in the right direction with the foundation and that together with the whole foundation's team we will start realising our goals.

Last month Vicky and I went to a seminar about eHealth hosted by the EPF (European Patients Forum).

EHealth, in today's technology, is becoming a standard, even if there is still a lot of work to perfect it. It has become apparent that patients will need to play more and more an active role in eHealth. Every patients has the right to know what is written in their medical reports, even the minute details. Even today, this right is not always exercised properly en should a patient get their hands on a report, it will dazzle the patient with all the medical mumble jumble.

The seminar was also more than just eHealth, "Patient Empowerment" is just another example of important topics that was discussed.

Patient Empowerment is a broad concept. Experience through workshops and discussions has taught us that in general the priority is mainly place on our rights. We have the right to read and look into our files, the right for the correct information, the right over our own bodies. We are not saying that it is not like that, but we have also duties: Patient Empowerment also means that we have the duty to learn how to take care of ourselves, taking care in the broader sense, that is. Coming up for our rights is one thing, but performing and doing things in the right and correct manner is another. Being assertive the right way!

We found it an educational seminar, good speakers, workshops and discussion with people from all corners of Europe. Everything was organized very well by EPF, beautiful hotel room, fine food, etc. Vicky and I have enjoyed ourselves, but mostly we learned a lot of new things and were able to broaden our networks.

Yesterday, we had an appointment at University Hospital Ghent for research and testing to show relationship of a dysfunctional autonomic nervous system and Ehlers-Danlos Syndrome type III. With three we were yesterday. Karen, Vicky and myself. We had several tests to do ... Next week we will go back to repeat everything again and then Kelly will be present as well. We are not going to disclose much of our research results, as we do not want to influence other patients that still have to undergo testing. We also want to give Inge the opportunity to present the results as part of her doctorate. At the end of the studies, we will disclose more.

The experience has again been extremely confrontational and we were forced to face the reality on how debilitating EDS could be. In our minds, we still are Super Women, but yesterday made us realise we are NOT!

Belgian government exemplary in accessibility!

Last week, I went to the Justice building in Hasselt to the Chamber of Commerce to file some updated Foundation paperwork to be in order with the law. It turned out to be quite an adventure!

Last summer most justice departments in the District of Hasselt moved to the new building, and according to their website all departments were now situated at the new site.

There still was a layer of snow on the ground from a winter storm earlier that week. I was not worried, because it had been several days since the snowfall and a government building must surely be cleared.

I arrived by car together with my grandson Seamus.  I had left my wheelchair at home as I had decided to use the baby carriage of my grandson as a walker. I would only have to park my car in the parking garage, go up with the elevator and file the paperwork. It would be as easy as cake!

I followed the signs to the parking garage and to the handicap parking. I was relieved that I had a good parking spot. I placed my grandson in his carriage and I walked toward the elevator.

SURPRISE!!!!!!
"Due to safety precautions, the elevator is not in service!"

 Okay, here I am standing looking at a steep flight of stairs that I need to go down! How the hell am I going to get down those stairs when I have problems negotiating stairs by myself, but now I have my grandson, a baby carriage and a bag?  I was glad that I had left the wheelchair at home. I must have stood there at least five minutes thinking about what I should do. Just as I decided to go back to the car, two young men approached me and offered to help me down the stairs. Holding my grandson, I slowly negotiated each stair while the young men carried the carriage. It could only get better from here. The parking exit was on the side of the building facing the train station, so I needed to walk around the corner to the front of the building. Horrified I realised that the sidewalk nor the street had been cleared and I had to literally skate my way across.

Very slowly I walked around the corner. As I came closer, I realised that I had to negotiate an icy temporary staircase two flight up with my grandson, a carriage and dislocating joints. I asked a city watch employee if there were any other way to get to the entrance. He replied that I could take the delivery ramp around the corner. Pfff, that is about a kilometer walk. I turned around and walked back the way I came to walk a bit further to the beginning of the ramp.

NOOOOOOOOOOO! The road on the ramp had not been cleared of snow, no salt or sand, and the walk way was still more than 25 cm ice snow! I was here, I was going on, did not want my time wasted any further. Slowly I pushed the carriage through the heavy snow and walked centimeter by centimeter on. The ramp was steeper than I thought and even more dangerous than I thought. Danger of slipping and falling, but I pushed on slowly. My hips dislocated 4 times as I walked the ramp. It took me 20 minutes or more as I finally approached the building. Heh, I saw a few cars parked on top, but nowhere a handicapped parking in site.  Just before the building the sidewalk was cleared from snow.

I walked to the front desk and the receptionist send me to the fourth floor where the chamber of commerce was located. Luckily, the elevators in the building were in working condition. Proud that I finally made it, I asked to file the necessary papers. "Sorry miss, but the only department that did not move are the people that handle non-profit foundations. All other departments moved, but unfortunately the information on the website is wrong."

I could not believe my ears, I walked all that way, overcoming hurdles, dislocating a shoulder and my hips four times, just to hear that I was not able to file the paperwork. How could this be? I was livid! No other option then to go back down the ramp, back to the parking garage and go home.

It took me a lot longer to get down the ramp. I had arrived with my car at 09:25 at the garage and I had arrived back at the entrance of the garage at 11:10. So long had taken my walk! How long would I have taken if I had to roll my wheelchair? Longer, that was for sure.

Now I still had to get up a flight of stairs. Luckily, there was a man about my age who was kind enough to help me. He even helped me all the way to my car. At exactly 11:30 I drove out of the parking garage, two euros wasted on parking.

In April last year, I remembered a newspaper article that the elevators were not working, but that it soon would be taken care of. Nine months later, nothing was done to remedy the situation.

Shame on you Belgium, shame on you NMBS (Belgian Railway who is owner of the building and site), Shame on you both, you should be an example to the rest of Belgium how handicap accessibility should be done right, not an example how you should not do it!