My MS journey (English concept)
The biblical meaning of the Hebrew name Boaz / בעז
“in him is strength”
When reality hits you…
It’s 10:15 on an idle Thursday morning. While typing this story I’m lying in my hospital bed. I was admitted yesterday. Seems no point anymore in hiding my distressing secret that I was carrying with me for over 3 years. Within 4 weeks my MS suddenly got very aggressive and now I’m hospitalized. It started with a bit of foot drop in my right leg. I was hoping it would be temporary and that it would pass in a couple of days or weeks like my other MS symptoms usually do, but it didn’t. Instead my ability to walk has been ripped away from me. I can barely move my legs due to painful spasticity, muscle weakness and tremors all at the same time and I’m losing grip and control in my left hand and fingers which makes just typing this story a real challenge. My prospects aren’t looking good since it’s not normal for the disease to be that aggressive so early on after diagnosis and at my age. Deep down inside I always knew this day would eventually come, but not this soon. Usually it takes 20 to 35 years for an average MS patient to reach this point. I’m just 31 and I should be in the prime of my life with endless expectations, ambitions and dreams of a joyful grown up future perhaps with kids and what so ever. It shouldn’t be about slowly slipping away, ever declining psychical and mental abilities and getting worse and worse by the day, week, month or year and eventually ending up in a nursing home which at this point seems very likely to me….
I guess the above may seem hopeless and terrifying to the outside world and it sure is. MS is a chronic, progressive, incurable, unpredictable and often disabling disease of the central nervous system with no real hope of a normal future for most patients. But to me it’s not hopeless, because I will never give up hope and I will always look for solutions and possibilities. That’s just the way I am. I’ve set my mind that I will and can beat this disease and now I have possibly found the way to do so with a pioneering treatment called autologous hematopoietic stem cell transplantation (HSCT) . Later on I’ll explain the rationale behind this treatment, but first let’s take a look in retrospect how I came to this point in life in which I have to make this rigorous life altering and hopefully lifesaving decision with all the potential life threatening risks involved.
Beginning of the end?
After a though week of carnival in my home town me and two of my closest friends decided to take a little break holiday and ‘recover’ in Beirut which actually involved even more eating, drinking and smoking cigars in other words ‘Living the good life’. Up till then my life consisted mostly out of work hard and play even harder almost like any other 27 year old who just started his professional life after University and was living in Amsterdam. I had a job as an Acquisition and Development Manager at one of the major international mixed use real estate development companies and I was loving my fast paced life. Well all that working and partying didn’t offer much of in depth relationships and probably a lot of people perceived me as this kind of shallow and cocky prick. I wasn’t thinking of the bigger things and goals in life yet. I probably assumed that will come later on in life when I finally grow up and it did came but not in the way I could ever imagined. Things changed quite rapidly after that week in Beirut…..
What’s happening to me?
March 2012 – June 2012
I noticed that my left eye started hurting. I didn’t think much of it, but the pain was quite persistent. Eventually after a few weeks the vision my left eye got blurred and I had gotten a black spot in the middle so I couldn’t read. I went to my GP who gave me some sort of lubricating ointment to smear on my eye and if that didn’t help in a couple of weeks I should come back. My vision actually became worse so my GP referred me to the eye specialist at the medical university hospital. They diagnosed me with optic neuritis and told me not to google it. They said that I could read a lot of terrifying stories relating to Optic Neuritis as a symptom of something else while it could just pass and then that would be the end of it.
So when I came home the stubborn, want to know it all and impatient Boaz Googled it:
“Optic neuritis is the name for inflammation of the optic nerve. This is the nerve that carries messages from the eye to the brain. Although optic neuritis is associated with MS, not everyone who has optic neuritis will have, or go on to develop, MS. Many people will have optic neuritis with no further symptoms.”
Multiple Sclerosis?! Oh my god I hope not. The first thing that naturally came to mind is a future in a wheel chair. But then I thought it’s just optic neuritis. Maybe it will pass and it will be the end of it, but it never really did go away. At first the blind spot did diminish, but I still had a bit of blurred vision. At that point I thought I had recovered well enough. So after a few weeks of taking it easy I was ready to celebrate and go partying again. Those were a happy few weeks with a lot of hangovers, but then I got a blind spot in my right eye……
July 2012 – December 2012
This was the end of my normal careless life and the beginning of my MS journey. In time I also developed other symptoms like weird sensations in my legs and painful electrical shocks all over my body when I nodded my head (Lhermitte’s sign). Since I already read and researched the whole disease and knew all the inns and outs and to me it was already clear I had MS. I never wanted to study medicine, because my whole family are doctors and when I was young it bored the hell out of me all that talking about medicine. However the disease pulled me right into the field and it’s actually quite interesting…
Because of the accumulating symptoms I eventually had to go to the Neurologist and they made MRI scans of my spine and brain in other words my central nervous system (CNS). The results were quite clear. At least 9 white spots they call lesions and plaques which are scars in my brain and in the nerves running through my spine. It’s actually kind of weird, terrifying and confronting looking at MRI pictures of your own brain and spine and seeing there’s something totally wrong in your own body and there’s nothing you could have done to prevent it. I had definite MS. My family was shocked and devastated which of course is normal. To me it was more like of a confirmation of something I already knew, but desperately hoped for it not to be true.
“Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.”
“Four disease courses have been identified in multiple sclerosis: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and progressive-relapsing MS. Each of these disease courses might be mild, moderate or severe.”
I initially was diagnosed with a mild form of RRMS:
“RRMS — the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — also called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely and there is no apparent progression of disease. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS.”
My supposedly future in 20 years time:
“Secondary-progressive MS (SPMS)
The name for this course comes from the fact that it follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses.”
Next to my family I only told of couple of close friends about my illness and probably a few random people in bars when I got drunk and emotional. I didn’t want anyone else to know since I could effect my personal and professional life tremendously. During that period in time the company (MAB Development) I was working for was hit hard by the economic crisis and my fixed time contract wasn’t extended. My employment would end in November and my employer gave me all the time in the world to look for another job or make other plans. With all this spare time on my hands I mentally entered a very dark and grim period. I wont go into any specifics, but I can ensure you it was probably the most difficult, disturbing and depressing period in my life. The huge probability of a living a life in which the disease would slowly debilitate me drove me nuts and full of fear. I’m always looking for solutions as a positive thinking problem solver, but for this problem there wasn’t any (yet). What the doctors could offer me was, what they call, disease modifying drugs which could possibly (and arbitrary) slow down the disease progression by roughly 30% on average. However as a self reclaimed MS specialist these drugs with all their side effects didn’t offer me much comfort. It would entail daily injecting myself with a substance of which the doctors don’t even know how and why it even does what it supposed to do.
The only thing that kept me going in that period was the girl that I started seeing.To me she was like this little ray of sun light in a very dark tunnel I was going trough and I think she wasn’t even really aware of that. A girl who ironically had the same treatment (HSCT) that I’m pursuing right now over 20 years ago when she was a little kid and was fighting for her life because of leukemia. I guess I felt sort of manic depressive. One the one hand butterflies in on the other hand terrified and depressed at the same time. It was confusing….
Also in that period I actually did accomplish to get a great job opportunity which I kindly declined because I had a created bucket list. Yes, that is correct a bucket list on your 28th. One of the things on it was to live and find a job abroad while I still was able to since my symptoms at that moment were quite mild and manageable. I already had a plan in place to move to Sydney so I packed my bags and got myself a one way ticket…
December 2012 – January 2013
Newly diagnosed with a horrific disease, turning down a great job offer in the middle of the financial and real estate crisis and moving to the other side of the world to Sydney leaving everything and everyone behind without any real prospects of finding a job over there. You could perceive this as running away from your problems and I really did needed to get away, but one of the things I do best is making well thought out plans involving multiple scenario’s. Like I said before I’m a positive problem solver. If someone tells me it isn’t possible I make it possible. To me it’s all about setting goals and I like challenges. However I’ve learned now the hard way that going trough life is an incremental process in which you cannot plan everything and that life actually happens while you’re making plans.
Anyway moving to Sydney was a well informed decision and not an impulsive action. My former CIO had lived and worked in Melbourne and still had a lot of connections in Australia. I asked him if he could get me in touch with a couple of people just to get acquainted and to see if there were any options. So he sent out my resume to all the people he thought would be of interest to me and a lot of them happily agreed to set up a meeting. Before I even was present in Sydney I already managed to set up a couple of meetings with some high level real estate decision makers. I also had met a friend who lived in Sydney and where I could stay in the meantime until I got on my feet. A couple of the other things I do best, meeting new people, connecting ideas and creating opportunities. So all the ingredients were in place for a successful adventure and I landed in Sydney a week before my 29th birthday.
Leaving family, close friends and the girl I was seeing behind was quite tough. However I set my mind to finding a serious job in Sydney and figuring out whether it would fit me to live and work abroad. Next to that in Holland winter was coming and in Sydney summer just started. Imagine being in my situation without a job, newly diagnosed and the dark, short and cold days of winter in front of you. Sounds pretty depressing wright? So a couple of months before I had made myself a promise yes or no MS diagnosis you are going to Sydney no matter what. If my world is going to be turned upside down I might as well be lying on a beach reading a book while slowly looking for a job. I had saved quite some cash so I wasn’t in a hurry to find a job at all, but I can tell you Sydney is damn expensive and of course I wasn’t in Sydney without a purpose.
Time flew by in Sydney. Two friends from University dropped by and we did an awesome road trip all along the East coast in 3,5 weeks. During and around Christmas all the companies in Australia are closed since it’s the summer holiday season. That meant that undertaking job interviews just wasn’t possible anyway. So we enjoyed summer intensively. After my friends left I started to settle in. The job interviews were all lined up, I was following a course about leadership development and made a lot of new friends to hang out with. At the same time I did a lot of research about my disease and how to control it without medication. I forced myself into high intensity training, a rigorous Low Fat diet and mindfulness meditation according to the Jelinek / Swank regiment called overcoming multiple sclerosis. A lot of people seem to achieve great results with it and I too became quite fit, but still we’re all individuals and therefor we need a personalized approach in health and disease prevention and management. Medical science however just isn’t at that level yet.
Progress in every sense of the word
February 2013 – March 2013
Making progress normally sounds like a successful chain of events / consequence of something you initiated or as the free online dictionary states:
1. Forward or onward movement, as toward a destination: We made little progress on our way home because of the traffic.
2. Development, advancement, or improvement, as toward a goal:The math students have shown great progress.
I did make progress in my job hunt. I’ve spoken with various companies, head hunters and other real estate professionals and had a couple of serious job interviews. However the CEO of Barangaroo I met on my 2nd day in Sydney emailed me if I could do a presentation about all the work and developments I’d done in the Netherlands. I remember making an appointment with him via email for a cup of coffee. I thought it would be like an introductionairy meet up, however if you go for a cup of coffee with someone in Australia it means you’re having a job interview. I wasn’t aware of that.
My plane landed in Australia 13 hours ago and I was heading to the head office of the Barangaroo delivery authority for my first meeting. I arrived an hour early. I guess the jet leg was kicking in just fine. The secretary told me I could wait downstairs at the coffee bar since the CEO of course was very busy. When it finally was time I went upstairs and the CEO welcomed me in and said:
” Hi Boaz (Beau Ass Sperm On, the best phonetic pronounced name ever in an English spoken country) nice to finally meet you. Jan, my former CIO at MAB, highly recommended you.”
That was kind of weird, because I never worked closely at all with my former CIO, but we did had a very good relationship though. I guess again it’s all about likability factor and the willingness of people to help you out without directly expecting something in return. Anyway I followed the CEO into the Barangaroo delivery authority office and we entered the Board Room. The whole Board of Directors were sitting at the table with my resume in front of them. That’s the moment I learned a cup of coffee in Australia isn’t just a cup of coffee. I wasn’t prepared at all for a job interview which actually was more like an inquisition, however I always like a challenge so I thought bring it on. Lets just wing it like I usually do and take it from there. At least I was wearing the only suit I brought with me. It was wrinkled a bit and I wasn’t wearing a tie, but at least I was wearing a suit.
The meeting lasted more than a hour and they asked me all kind of questions like about my bachelor thesis I wrote 6 years ago. I remembered one particular question the CEO asked me.
“How would you professionally describe yourself?”
“I like to work hard and play hard”
I actually said that in my first job interview in Australia. I like to work hard and play hard. It wasn’t a lie, but still, you only have one chance of making a first impression. The CEO did smile a bit though, but I definitely thought I screwed up completely. 7 weeks passed and then finally the CEO contacted me to do the presentation. I was thrilled.
“Barangaroo is one of the most ambitious urban renewal projects in the world today, embodying world-class design excellence and sustainability. It is one of the world’s foremost waterfront renewal projects and showcases Sydney as Australia’s gateway to the world.
The 22 hectare, $6 billion Barangaroo precinct will help redefine the western edge of Sydney Harbour and be a lasting legacy for future generations. Barangaroo will provide space for over 24,000 permanent jobs, generate approximately $2 billion per annum to the NSW economy and provide over 11 hectares of newly accessible public domain.”
Wow, imagine that getting a job at such a huge redevelopment project. That would definitely fit my ambition and match my quest for a high level job abroad. The presentation went fine and they would contact me if they had figured out if they wanted and also could hire me. Hiring a foreigner isn’t easy in Australia since they have all kinds of restrictive and protective laws and policies favoring nationals. So the waiting began.
Weeks passed by and I had a lot of time to think things over, did some soul searching and I read a couple of books about happiness, fulfillment, quaterlife crises etc. Since Sydney was really expensive I came to a point in time that I had to decide what I really wanted to do in life since I was running low on cash and had only one serious job application left at Barangaroo. Multiple scenario’s, remember?
If it really was my ambition to live and work in Sydney than I had to get a part time job to get some cash flowing in while waiting on the response of Barangaroo regarding the job. If Barangaroo didn’t come trough I still needed additional cash while finding that high level job. Also AMP Capital offered me a short term job in Newcastle, but that meant I had to move over there. To me it wasn’t really on option to leave Sydney. Besides that is life really all about work? No it isn’t….
Everything I wrote down here almost starts with I or has I in it, but there isn’t an I in family and / or friends, is it? Well there are, but you catch my drift. I skyped almost twice a day with the girl back home and each and other day with my mom. My dad back then was already 76 and was struggling with his (mental) health, my sister also has an autoimmune disease regarding her kidneys which involves getting a kidney transplant sooner or later and my mom is donating one of hers, I have 6 nieces and nephews which I would miss growing up etc etc. I already decided for myself that I didn’t wanted to have kids while I’m having this disease. If I couldn’t take care of myself in the future how would I ever be able to manage raising kids of my own? Next to the fact who in her wright mind would ever want me to be father of her kids because of my possible future disability, genetic proposition, financial income etc. The closest thing I would ever have regarding kids of my own would be the children of my brothers and sister. I didn’t want to miss out on that.
So what is true happiness and fulfillment? When are you really happy and content? Typical life issues. Each and every one of us define and determine their own parameters on and definition of happiness. It’s just different to everybody and I started to define and determine these for myself while I was living in Sydney. Finally growing up. I guess in that way I also progressed in personal development. I thought to myself what I’m I even doing here? If something happens to my family I wont be there to help out if needed. It’s a 23 hour flight. Not even talking about the annoying 10 hour time zone difference which made just making a spontaneous or necessary phone call home almost impossible.
Also a lot of my Sydney friends were expats and were just living in Sydney on a temporary basis until their assignments were finished. Usually the expats were couples as well and 90% percent of them got pregnant during their stay in Sydney. Living in Sydney is fun if you know you’re there on a temporary basis, with your partner, meeting other expats and that you’ll probably return home at some point. A dutch friend of mine who by himself emigrated to Sydney a couple of years ago also mentioned once that every year he could start over assembling a new group of friends since they left. I saw it’s very hard to start a new life by yourself in a new country and creating new in depth relationships. If I would get the job at Barangaroo it also meant emigrating for several years and thus starting a new life. Surely a very well paid and high level job, but what is professional success and money worth if you don’t have your loved ones close by to share it with? Deep down inside I think I always knew that…..
During those months in Sydney almost all of my first MS symptoms had gone and I was feeling just fine. I hoped the “Overcoming Multiple Sclerosis” regiment was finally paying off and all that running, swimming, meditating and eating extremely healthy hadn’t been for nothing. However I started noticing small changes in my body. I developed subtle balance issues and I started tripping over small stuff like a little rock on the road with my left foot. Well nothing alarming yet though. Until we went to this Lost Boys party on a old deserted industrial island…..
Lost Boys was an awesome dance party with great techno music and a lot of nice and well dressed up people. The vibe was really good and we had a blast. After a few hours of dancing and of course drinking my legs became so weak I could barely stand up straight anymore. However if I would sit down for a few minutes I was good to go again. This went on and forth a couple of times until one moment I just collapsed. I probably got over heated and the left side of my body shut down. My back side was tilted to the left and I was dragging my left leg. I looked like some sort of a zombie moving forward. The last couple of hours I just sat somewhere until the party was over. I struggled to get myself to the boat pick up point which was quite a walk. Some people I didn’t know noticed how hard it was for me to walk and supported me onto the boat and finally helped me into a cab to get back home. To next morning I woke up the symptoms were gone. Fucked up wright? Well this was only the first time that had happened….
So it seemed my MS was progressing as well, it just had been in remission for a while. In hindsight I’m actually happy I did all that running, swimming, dancing etc. ergo being normal and active. Although it probably didn’t slow the progression of my disease down, I was able to move freely without thinking too much. Enjoy your body, use it in every way you can. Don’t be afraid of it or what other people think of it. It is the greatest instrument you’ll ever own so you better tend to it well. I can ensure you, you don’t know what you’re missing until its gone….
Tell the world I’m coming home!
March 2013 – April 2013
Like I said before during my first few months I didn’t know yet if I really wanted to stay in Sydney. So after the presentation at Barangaroo I also kept my eyes open to job openings back home. Never bet on one horse.
I could go on and elaborate on everything I experienced the last 3 years, but I’ll do that in my memoires after I’m done fighting this disease.
HSCT will be my weapon of choice to defeat this disease.
MS is a life sentence with ever increasing penalties. Every time you adjusted to your new limitations and you find a new equilibrium you think if it’s going to be like this I can handle it, but then all of the sudden you get kicked down again and you have to start all over. This downward spiral needs to be breached one way or the other.
I always said it’s probably going to get a lot worse until it’s going to get any better and that this disease is just a temporary phase of my life. I have to believe it’s going to get better and it’s just temporary. It’s what keeps me going. I also said that if you should get an autoimmune disorder you might as well get MS since it’s the most common AI disease in the world and therefore gets the most attention and the most funds for research. However there are a lot of mixed interests in the pharmaceutical and medical research industry which makes creating a cure for MS difficult and takes a lot of time. Time however is not on my side and I have to act now and go all in. HSCT to me is the answer and is so far the only legitimate medical intervention shown to durably and completely halt (and often reverse) underlying MS disease activity & progression.
I must have faith it’s not the beginning of the end, but that I’m pursuing a 2nd chance at life. I need to keep reminding myself I’m just getting started….
Impossible is nothing and I will fight for a MS free world, because I am Boaz and in me is strength.
“…Accept what is, let go of what was, and have faith in what will be…”
FU MS, I’m going to be just fine….
“So you say everything’s going to be alright now
But how do you really know?
And I know everything’s going to be alright now,
Cos that’s the seed I sow. Woh-oh.
And the universe told me that’s how I
That’s I how I think I know.
So you say everything’s going to be alright now
And that’s how I know.“
Please join me in my fight and help me by donating to pursue this potentially life altering and lifesaving treatment and take back my future. I strongly believe in being a master of your own destiny and if my treatment is successful I will do anything within my power to advocate this treatment and make it available in the Netherlands for my fellow MS sufferers and help end this horrific disease for good.
I will not sit back and let this disease take over my life or those of others. Let us make the ability to walk again for MS patients around the world not a mere surreal dream, but solid reality.
Impossible is Nothing. Let Hope Live.