A.S. Face 1838: Walter Geuens

My dear illnesses,

I will be talking here about a great part of my life. This means dealing with illnesses both mental as physical who I came along on my way in life. It has been a journey of ups and downs but this all made who I am today. A person who loves to help other people with my advice and by standing next to them who need it. It’s not because I am a physical invalid that I can’t mean anything anymore for people surrounding me. At this moment I am 52,5 years old and still full alive and kicking my way trough the amazing road called life. Here we go. I was born on the 9th of April 1965. So I’m a true Aries and is mind and soul and proud of it. When I was a small kid I had already troubles with aggression in my head. Where it came from I didn’t know that at the time. Because I was a kind of different from other children, because I loved to go school and learning about everything and I still do that because you never can know enough, I was bullied a lot and didn’t have any real friends. Much of the time I just stand alone and played on myself doing weird stuff in the eyes of other people but I was exploring my inner self and my creative thinking. I’ve always loved to create things. When I was 9 years old I received the news that my dearest Godfather died with his plain over The Black Forest in Germany when he was flying to a meeting in Geneva for the European Atomic Council. He was at that time my only and real dear friend. For me he was a God. He was and still is an example how I have led my life by helping other people anyway I can no matter what. From than on it went downhill in my head and behavior. I had very bad nightmares, could be violent suddenly without any reason, became depressed and suicidal. A lot of night when everyone was a sleep at our house ( not my home never have felt like that), I took alcohol and pills and tried to kill myself, but I never took enough because in my subconsciousness I wanted to stay alive and would be so up to today. When a dear friend of mine died when I was 16 years old I totally crashed in my head. I barely ate food but loved to drink a lot of beer and heavier alcohol. At a moment it was so bad that I have been committed in psychiatry for the first time to get me calm in my head again and stopped drinking. I was youth in a closed ward with almost nothing else than adults. So not the greatest environment but after 2 or 3 weeks I don’t know anymore I came out again. With a lot of pills to take and that would become a part of my life from here on. After that I went to the school of the arts attending the course of art photography. One of the study’s I finally cloud finish because of my mental illness at than. But when I was there on my second year something totally different happened. I was about 18 years when I came out of my bed with a hell of a pain in my lower back and I really had to go to the academy because I had an exam. So I got dressed and went with my bike to there ( the pain getting worse and worse). When I finished the exam I just couldn’t get up anymore out my chair. I fell to the ground with so much pain. I have never felt liked that before at that time. The ambulance came there to bring me to the hospital. We are talking over the 80’s so the beginning of the scanner and that hospital had one, lucky me. There they saw that I had disc-hernia on L5-L6. I had to stay about 1,5 weeks in hospital before sent back to my folks. I had to stay in bed for 3 months than because way than that was th treatment a lot of rest and light exercises with the physiotherapist. From than on the pain came and went. Wen I went to go for my higher study’s in chemistry the troubles began on physical level while even I had really bad times with my psyche of very deep ups and downs, anxiety for losing people, and so on. On a morning I could barely walk anymore. My whole body was in pain but far most my spine and the feeling in my legs. I needed a stick for walking and even than stayed with a kind of limb. At first they didn’t find anything but because the symptoms got worse the send me to a neurologist because they were starting to think that I had M.S.. I knew than already what that meant because my girlfriend’s father at that time had M.S. I took for me a lot of time before the neurologist said it wasn’t M.S. but I had some bad responses in my nerves. They started more test and at some time they said it was in my head, it had to do with the mental illness what wasn’t diagnosed completely at the time.
So more psycho session but the pain never left me. My psych sends me to a reuma -specialist . They saw some inflammation in my blood so he gave me inflammatory medication to get that in control. I went up and down than. More scans and X-rays and nothing they said. I was sick of hearing that so I went back to the neuro-churgeon who handled my hernia. He had an idea what it could be. So I needed to give spine-fluid to make some examinations on it. After a few weeks the results came back and had to go to him. There he told me I had Bechterews Disease or A.S. and I needed intensive treatment and physiotherapy. I had to stop my study’s at that time because I was fallen behind too much. I searched for work and find it as a salesman for photography equipment. I did that for a few years with a lot of sick leave. But at than I struggled trough everything. I saw a lot of my reumy and psychiatrist and psychologist (that still wasn’t totally diagnosed) At that time I got married with the girl I met at a party at the academy. We moved along at a steady pace with a lot of ups and downs on my side. Being at time very verbal aggressive but never physical except to myself. But never ever to a person. I became a salesman on the road for photo-equipment. That was a great job to do but because of my bad health I got my resignation a year later. Because of that I became very depressed and spending a lot of money just to feel better. That depression gave than more inflammation and so I came in a sort of circle until I broke the ring that kept me there and started my own business as a studio-photographer. First I started that at my home but after I year that was to small so I had to move and bought a building and designed it into a highly technical studio with really everything in and on it. There could drive cars in there and so on. It went great I was a lot abroad and just doing my thing I loved the most. And always being with other people (models, designers, assistants, make-up artists) I felt so at home in that kind of world but at regular times I needed shots in my spine against the pain and inflammation but at that time that couldn’t stop me. But I neglected my wife and our relation became kind of death because of me always being with other people and we went for divorce. At a kind of way it also felt like chains falling of me. The woman I was with from than and I went living together. Than I got a very severe depression looking back at it was life-threatening. I stopped eating, drank a lot, became verbal aggressive,,, and wanted to die…. The psychiatrist decided than to put me in a sleep for 3 weeks on baxters with very high doses of anti-depressant. I came out of the sleep just a bit better but had to stay on the I.V. for high doses of medication and had to take a lot of other medication orally. At some time I was taking about 25 pills a day just to get along. Another female doctor saw me walking there like a zombie and she called a specialized center of mentally illnesses and asked me and my parents if I would let me take in there to get some proper help. I went there first In observation and building down my pills so I came back to earth again on a very hard way. I became back very anxious and very quiet. But from time to time coming on the surface again. I had to do a lot of test psycho technical, IQ, and so much more than I can’t still remember because from much of the time I don’t remember anything anymore. I was devastated again after a bad letter I received and had to pull me up again and go further with my therapy I was getting there with a lot less medication. Slowly I came back on my feet again and after the therapy of about 8 months, I started from there to do some voluntary work. I went to work to give legal advice for people who needed answer about the hiring-laws. I did that for about 6 months and went on living apart in a house with other patients to adapt again to society. After being there for about almost,5 years i met the woman I am married today. We had some great times and also up and downs I went back working for IKEA Belgium. It went fine until the stress finally got back to me again. That was the really bad start of my AS what ended up in being an invalid ( but for me it is just a name) for having a chronic illness. About the diagnose at the mental-hospital that was Borderline Personality Disorder and chronic depression. The bps developed mainly because the way my parents raised and took care of me. At this time after the death of my mum due to cancer I totally turned away from my so-called family and that was one of the best decision I have ever taken. This can sound hard for many of you but from than on it went for the better with me. Still with a lot of ups and downs but so much less than. On a time a was hospitalized again for my AS I became getting also other symptoms and they also found out that I also had Psoriatic Artritis so 2 for the price of one. It went very much ups and downs until on one time I got Enbrel to inject to give me a lot of relief. But last year-end of October I got a lot worse and the pain started to come up again and getting worse by the day. I started also to fall because of loss of strength in my legs. I went back to a neurologist with a lot of tests, MRI and that 3 times in about 6 weeks. They saw a lot of broken discs in my spine and neck and started giving me morphine and other painkillers and went in for re-validation. I started walking better again but with a sick again until today. But last week after a lot of back pain again I went to the Netherlands to get CBD-oil ( in Belgium only MS patients are getting that) but there a reviewing it to give it also to reumys. So I started that last week and the results are great for me. I sleep much more, a lot less pain (I downsized on morphine by half on a week time), I can walk better again, I had to do that a lot sooner. I now know a place where I can go here near my home they give you counselling and legal protection because there is a law in Belgium that says that a doctor can give a patient a therapy he sees as necessary. So going there next week to get me registered there. And my psyche : I am real good since last year November when my Psychiatrist gave me a new medication and since than it is only going better and better on that side of the road…….Now I have the agreement to have all the kind of medical Cannabis.
A few weeks a go I collapsed against my back and going backwards again. I’m also loosing a lot of weight (Prof. said that’s a red flag). The morphine is gone up again with again a lot of other painkillers and NSAID and the usual medication. I’m going to have a number of examinations now to see why I’m loosing so much weight and why my spine is having little cracks in it. I’m having a spine of someone older than 90 years. So I’m back on a journey again where I don’t know where it will end. Last Wednesday I had to give up some voluntary work what was very hard for me to do. I find that even harder to do than the pain I’m in at this moment. I will always get up again and go on with my life no matter what. As long as I’m walking around here I will try to help other people; for that are one of the last thing I can do good. For the people who have read my story know that there is always a kind of hope in life. I’m almost all the time smiling because that is also very good against the pain. Crying doesn’t help me any further. I wish everyone who is chronicle ill or just ill both mentally as physical, hope for a good future and know that there are always people over there who want to help and will support you. Know that what the doctors learn from us they will be able in the future to help other people. For me it will be too late for a cure or a manner to go along with AS. In a good and pain-free way. That’s why I also let the doctors take all my info and so on for medical research. I wish you all  the best in life and that you all will be free of pain one day in your life. But always remember to keep an open mind and never give up on your dream.

Walter Geuens, AS, PsA, BPD, Chronic Depression.

I am alive and kicking!!!

Belgium, Europe

2 Responses to “A.S. Face 1838: Walter Geuens”

  1. Dear Walter,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thank you for sharing your story I think we all have much to offer despite (or in spite of) our illness. I love your attitude and willingness to help others.
    Elizabeth Face 40

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