Khaled Speaks Out On Epilepsy And Life In The Kingdom

By American Bedu
1 September 2010

Soon, Ramadan will be coming to an end. As Ramadan is the time which is to reinforce acts of kindness, tolerance, patience, generosity and understanding, I felt it was very appropriate to post a very special interview during this period. This month American Bedu had the opportunity to interview, Khaled. Khaled is a Saudi man who has come forward to share aspects of his life and perspectives of growing up into a man in Saudi Arabia. He has allowed American Bedu to ask him some very personal questions on what it has been like growing up in a Kingdom where those who have been born with ailments or disease do not have all the resources or treatments available to them and in some circumstances, are therefore shielded from Saudi society.

I’m honored to have this opportunity to interview you, Khaled. Let’s begin first with some background. Which part of Saudi Arabia are you originally from? How many brothers and sisters do you have? First American Bedu I would like to thank you for taking time out of your day to interview me and I hope I can shed some light on what life is like for Saudis born with a disability or ailment. I am originally from Hail City which is in the Province of Hail. The city is mainly known for its agriculture, especially wheat production. As for my family, we are a large family consisting of 10 brothers and 7 sisters, all from 4 wives. My father had 4 wives which personally I think is common in rural places such as Hail. His father also had 4 wives and so did many of my forefathers. I am number 16 out of my brothers and sisters and we all have somewhat of a good relationship with one another, although things could be better.

How would you describe your childhood? What were your typical activities? What kinds of things were you able to do with friends? My childhood was a hard one. I was hidden from the community and rarely seen at social gatherings. Once in a blue moon I was allowed to leave the house and go play with the other kids but only during the evening and for a short period of time. At home my activities were limited as I was indoors but nevertheless I loved to read and write. I would get my older brothers to bring me home things I could read which even included manuals for machinery I had no idea about. I sought refuge in the religious books and materials my mother brought me from different places within Saudi Arabia. My love for books grew as I could become lost in them and in a world where everything was perfect. I would close my eyes and imagine a life where I wasn’t sick and that I too could play outside during the day while chasing little animals and birds like the other boys did. I didn’t have any friends as I was always hidden from guests and other members of the community which included the local kids. My mother would tell me to stay in my room and play with my toys or read a book, but under no circumstances was I allowed to leave my room while there were guests in the house. During the evening, permitting the house was empty, I would go outside into the back of the house and run around feeling the evening breeze on my face. I would run back inside and wash my dusty feet before my parents got home so they wouldn’t know that I had been outside. I remember one Ramadhan night I felt so bored being stuck inside I went outside without permission and ended up being punished for it when I got home. From that day I learnt to never get caught.

At what age were you initially diagnosed with epilepsy? How were you diagnosed? What was the recommended treatment plan by your doctor? Well I was diagnosed at the age of 3 while on vacation in the capital Riyadh. My parents took me to the hospital where I was diagnosed with epilepsy and told that there is treatment but it is mainly for adults. Taking into account the year was 1973 and medical treatment wasn’t all it was back then. So we finished our vacation and we all went back to Hail where I was to live the next 17 years hidden away inside a house. My father was very uncomfortable of trying western medicines so my parents tried local herbal medicines and other forms of treatment. I remember when I was 10 years old, the seizures were pretty bad by then and out of control. My father was approached by a local traditional healer who told my parents I was possessed by the devil which of course I wasn’t. It was just people being superstitious and ignorant. They tried to get “rid” of this supposed devil inside me but all they found was that their theories were a waste of time.

How did your family react to the diagnosis? In fact, what was your reaction? What exactly were you told? Initially my parents, being the kinds who fear what others may think of them, tried to hide it altogether. They thought that if they didn’t see it then the problem wasn’t there. I just wish they had tried western treatments available at that time before dismissing it so easily. My siblings were taught to do the same. No one spoke about it and if they did there were harsh consequences. To this day I don’t understand why my parents feared my condition so much. I would think you would do anything to protect your children and that you wouldn’t let idle gossip stop you from getting the best medical care that you could afford, but sadly my parents chose to run away from the problem rather than facing it. Growing up I was told that I have “shakes” which happen and no one knows why, but I have to hide it and never tell anyone about it otherwise people will come and take me away from my bed and I would never see my family again. This certainly was what I was led to believe for many years before realizing that no one was going to come for me.

How did having epilepsy impact on your life in Saudi Arabia? What resources were available for you? How much understanding was there by Saudi society to your condition? Epilepsy restricted how much interaction I had with the outside world. I was home schooled because of my condition which did result me in being afraid of outside people for a period of time. It wasn’t until when I turned 20 I left the family home in search of my own life. I moved to Riyadh where I really did begin with what I had on my back and in my pockets. I struggled to find work for the first few months but as I got use to the city I gained more confidence and struck up a friendship with a fellow Saudi. He too, like me, had left his family home to escape the hard life his condition brought him. We shared a one bedroom apartment where we looked out for each other and became really close friends. It was very hard for me to hide the fact that I had epilepsy due to the frequent seizures I would have. This resulted in me being fired from many jobs due to either safety issues or just pure ignorance and lack of understanding. I must admit it did put a lot of pressure on me when I went to apply for jobs. They would ask me if I had any medical conditions and I would always reply with a quick no. The majority of employers were very kind and considerate, but there were the few who would throw insults at me for not telling them about my condition. I do not blame them, but I had to survive and for me not working was not an option. Some jobs lasted longer than others but overall I managed to work through more than 25 jobs over a period of 5 years before I got fed up and decided to get help for my condition.

What did you find as the general behavior and attitudes of the majority of Saudis with whom you came into contact when they learned you had epilepsy? Why do you feel that they held the views and behaviors exhibited? What, in your opinion, needs to be done to remove the false stigmas people attach to those with disabilities or diseases in Saudi? As soon as someone came to know I had epilepsy their shock was follow by the word “maskeen” meaning poor. It was an expression as if to say they felt sympathy for me. They also would refer to me as “broken” or “crippled”. They also saw me as half a person, as if to say I wasn’t a whole human being. I would get the sorry looks and the occasional irrational reaction of someone not wanting to touch me in case they got epilepsy as well. I began to feel like a leper which inside me tore me apart. On the outside I would laugh about it to my friend but inside it was eating me up. I couldn’t understand the people around me and felt so isolated. It wasn’t until I turned 28 in 1998 that I approached the local council to ask for help in medical expenses and treatment. I asked the local council to send me abroad so that treatment may be carried out. My request was refused twice before I decided to go to the king himself to ask for help. I submitted my claim and wrote a further 3 letters of inquiry before I received the news I had been hoping for. I was sent to the UK and France for 6 months to receive medical treatment and to also have my health assessed, all paid for by the Saudi government. To me this was the turnaround in my life. I began to gain confidence in my everyday tasks and I also felt like life was actually worth living. When I returned back to Saudi Arabia I felt that I had to at least have a go at changing the opinions of Saudi people towards people with disabilities and illnesses. There is an Arab saying, that if you talk about something then it will come true. The Saudi people have this fear that if you talk about a certain ailment then it will come true, therefore people who DO suffer from certain illnesses are often left alone in times of need. If no one wants to talk about it and no one wants to hear about it, then how can we move forward? We will be constantly living in a land where people fear things such as epilepsy instead of understanding it and learning how to deal with it. I think schools in Saudi Arabia should teach their students the different illnesses and disabilities out there that affect many lives. I personally believe that if you learn about something then you have no reason to fear it.

Another point I would like to make is that I am very happy with the mandatory blood tests that couples have to undertake before they get married. This has forced Saudis to deal with the fact that yes close family marriages can lead to hereditary illnesses being passed on generation to generation. If my parents had had these tests, they would have at least known there is a chance that they may have kids with certain illnesses. In saying this there are those who say that it is Allah’s will whether someone is born with an illness or not and that no one can see the future. I agree with this but are we not taught in Islam to look after our health? Are we not told to remove ourselves from things that may bring us harm? For example, you may buy a house in a dangerous area and say to yourself it is Allah’s will whether I get burgled or not. This again is true but you knew at the time of buying that house that you are entering a dangerous area. Why would you do that to yourself and the people you love?

At what point in your life did you learn that you had had a brother who also had epilepsy? Why do you think your parents chose not to share with you his existence or condition? At what age did he pass away? I don’t remember exactly when I found out about my brother but I remember being very curious to find out more about this brother. I pestered my mum to tell me more but she would dismiss me so I would leave it for another day when I would have the chance to catch her off guard. I was told he died at 4 years old due to a severe seizure he had. No one spoke about him and I doubt if my brothers and sisters even recall him being alive. As I grew up I found it an insult to his memory that no one even had the nerve to acknowledge his life, but then again it must have been extremely painful for my parents to lose their first born child.

How have you resolved your feelings on being ostracized by Saudi society and coming to terms that you had a brother you never knew? I doubt I will ever resolve my feelings on being outcast by society. I try everyday to rise above it and to let those comments pass but somehow someone always manages to upset me or cause me to become angry. At least these days my wife, Diana, is close by and always there to comfort me when I get worked up. As for my brother, I will always wonder what kind of life he would have had if my parents had only sought help, but like they say its Allah’s will and wishing won’t bring him back.

Do you think the experience you have had is common within the Kingdom; ie, withholding information about siblings or family members as well as having to face stigmas if one has a disease or some kind of disability or disfigurement? Why or why not? My experience throughout my life is all too common amongst Saudi families. Many times a person with an illness or disability is kept away from others, either out of fear of them being abused or just out of shame felt by the other family members.

Everyone wants to portray an image of a happy family to the rest of society and sadly some families go to extreme lengths to make this possible. I have heard of horrid situations and witnessed some myself of where families have abandoned a member of their family for having a certain disability or illness. Just talking about this brings back painful memories of how a child with Down syndrome was abandoned by his parents just because he wasn’t the son they were expecting. This sort of behavior is both inhumane and shameful, and not to forget it is also against the teachings of Islam. Those like me who are lucky enough to leave the household and start a new life are often shunned by the rest of society. Either seen as an outcast or simply as someone no one wants to have around. You can imagine what this can do to a person’s mental state.

How old are you now? I am now 40 years old.

How did epilepsy impact on your desire to be married and have a family? Well to be honest I hadn’t thought much about getting married until I turned 30 back in 2000. I felt I was ready to settle down and start my own family so my search for a wife began. I had a steady job at a jeweler and had my own apartment. By now I was living in Jeddah where there are more expatriates. I felt comfortable around different nationalities and since I was on medication my seizures were under control. I contacted my mother who I spoke to every Friday after the Friday prayers. I would ask how everybody is and she would always reply that everyone is fit and healthy. One Friday I called her and told her that I wish to get married. At first she was silent, but after a few minutes she broke the silence by saying “No family will accept you Khaled”. This really tore me apart knowing that my mother thought I wouldn’t be able to get married just because I have epilepsy. I decided to try at least so I asked around and also contacted my paternal uncles to ask if they would allow me to marry one of their daughters. I spent the next 3 years searching for a wife and every family I went to I was turned down. Some turned me down blatantly while others demanded high dowries in order to put me off. As I turned 33 I put marriage on hold and decided to further my education.

I understand you are now married to an American woman. Everyone loves a love story. Please share how the two of you met. Where? How? I can’t help but laugh to myself while reading your question. I must admit I am one of those people who love a good love story and I must apologize in advance due to the fact that me and Diana met in such a cliché way. My trip to the UK had ignited a passion for English within me. I would spend my evenings watching western movies trying to pick up on the words. I also loved the British accent which always left me with this awkward grin on my face. I decided that I wanted to learn English so I started to go to evening classes. Slowly my English improved and I was able to hold conversations in English. I had always loved books so I bought a new book every week from Jarir Bookstore downtown. That is where I met Diana. She had been in the Kingdom for just over 2 years and worked for an estate company. We would occasionally catch glimpses of each other. This is mainly because I am very shy around ladies and often I like to keep my distance. I had gone in one evening to purchase my weekly book and because she was at the counter I became very shy and tried to hide behind a bookshelf. She laughed at me which kind of made me mad. Who was this woman and why was she laughing at me. So I got the courage to ask her why she was laughing at me. I think by now my Saudi genes had kicked in and I was more likely demanding than asking. She explained that she had never met a man who was so terrified of being near a woman. Before you know it we were having a conversation and she was recommending books that she thought I might like to read. We occasionally would see each other in the bookstore but the meetings were purely casual.

How soon into the relationship did you know she was the one and you wanted to marry her? I think after about a year of knowing Diana I decided to let her know about my feelings towards her the next time we met. We talked about so much on the phone and during our meetings that I felt totally captured. I told her I had epilepsy from the beginning and she told me that it can never affect our friendship. I think that’s when I realized that I was beginning to fall in love. I spent hours that Thursday morning trying to make sure that what I said to her sounded correct in English. We hadn’t spoken for 2 days so I initially began to get very worried so I called her phone and found that she was really busy with work. I arranged with her to meet up so I could tell her how I felt and I also wanted to ask her to marry me. Since I was working at a jeweler, I chose a golden ring with an emerald stone, to match Diana’s eyes. I made sure to engrave the words “Ahebak maut” which means I love you to death. We met up and just like I had practiced, I poured my heart out. By the end she was in my arms softly sobbing while I comforted her with sweet Arabic. We planned to get married as soon as possible but like everything else in Saudi Arabia, it wasn’t straight forward.

How much did your wife know about Saudi Arabia prior to your marriage? What was your family’s reaction of your marriage to an American? Diana being close to my age had spent a number of years working in various countries so adapting to Saudi life was not as big of a challenge as she thought it would be. She dressed modestly and recently has taken to wearing the Hijab and Abaya when she decided to convert to Islam. I have to point out that I did not pressure her into this decision. She was born an atheist and all her life she had no religion in her life. Once she had seen the religions of the world, she had made her observations and was still learning about different religions and cultures when I had met her. In the end she chose to convert to Islam out of her own free will and I supported her fully. Her knowledge of Saudi Arabia grew from the many books she purchased and the experiences she lived every day. My family responded variously to me getting married to Diana. My siblings didn’t really seem to care who I was marrying, as long as we were happy. My parents were very skeptic at first and did not want to admit that their son was marrying an American. My father was the more stubborn one and never did approve of my marriage. My mother on the other hand soon changed her mind when she saw how much happiness Diana brings to my life.

Was it easy for you and your wife to get the appropriate approvals to marry and live in Saudi Arabia? Can you describe your experience with the marriage approval process? Getting the permit for the marriage was very tough indeed. We filed the relevant paperwork and I was called for questioning. I was asked questions such as, “Why are you marrying an American?” and “Why are you not marrying a local Saudi woman?” I answered their questions calmly and in the end I told them that I had spent years searching for a Saudi bride but every family turned me down on the basis of my condition. I met Diana and she never once saw me any less of a human being let alone of a man. She accepted me for who I am which is all I need. We spent months waiting for a decision until I decided to again approach the king personally and request his permission to get married. I wrote in total 8 letters before 2 years passed and soon enough we were granted the permission to get married.

How do you feel about the many young foreign women who have met Saudi men outside of the Kingdom? Many of these women believe he is the ONE and trust every word he says and even if he is a Saudi student abroad, that he is able to acquire permission for marriage. Are these women realistic? Do you think most of the Saudi male students are sincere and true to their words? I feel any young woman meeting any guy should always express caution and not fall victim to lies and deceit, but then again how does a person know what the future has in store for them or what a person is really like. I say to those young foreign women, please observe the behavior of those young Saudi men and ask yourself, is he really who he says he is? I must admit I am saddened at the fact that many young men from the Gulf (not just Saudi Arabia) go abroad on student visas in search for a bit of a fling. I always say to these young men, you wouldn’t like it if foreigners came to the Kingdom and messed around with your sisters or female family members, so don’t do it to someone else’s daughter/sister just because they live in a country where there isn’t gender segregation. I also feel that there are plenty of young Saudi men who perhaps look too much into the whole marriage abroad scenario. I don’t know how these young men are getting their hands on permits, maybe through connections in high places, but nevertheless they need to think about how marrying a foreigner will impact their lives. Introducing someone into a whole new way of living and even thinking is a big step and if a woman is willing to do this to be with her husband then I reckon the husband is a foolish man for even thinking of messing her around. Overall I do think that a majority of young Saudi men who go abroad go there with good intentions and carry Islam in their heart. It’s just that small minority who seem to ruin it for their fellow countrymen.

What answers should a foreign woman have before committing herself or having any kind of an intimacy with a Saudi student towards knowing he is sincere? I say foreign women should ask themselves, are they ready to enter their partner’s world? Most of the times the Saudi student will take his wife back to Saudi Arabia where they will begin their life together as a married couple. Is she ready to cover up? Is she ready to be part of a large extended family where perhaps her mother-in-law is a strong figure in the family? Is she ready to deal with the norms and customs of an Islamic country? There are so many questions that a foreign woman has to ask herself before committing herself to a Saudi man. As for intimacy, I strongly believe that sex before marriage is a big no no. I may sound hypocritical because Diana and I had spent time talking before we got married but we never had any form of sexual contact. I always made it clear to her that I am a Muslim and that my religion is a big part of my life. She respected that and I think we both felt more comfortable knowing that nothing will happen because we both respect each other’s values and customs. I recommend that foreign women be aware that any young Saudi man looking to get intimate is probably going to end up disappearing after having his fun. He certainly wouldn’t do this back home in Saudi Arabia for the restrictions but as soon as that plane departs from Saudi soil his mind changes. I also have to say to those young Saudi men, what goes around comes around. If you go around sleeping with women and taking advantage of them, don’t be surprised if the same happens to someone you love and cherish dearly. No smoke without fire guys.

How have you and your American wife been accepted into Saudi society? It’s funny because I think me having epilepsy has allowed Diana to be accepted into Saudi society more. People always thought that no Saudi woman would marry me and that anyone who does must be a foreigner. They think, “Oh since Khaled needs looking after then its fine, he has his American wife who is humble and will look after him. We didn’t raise our daughters to go and look after a sick husband”. There comments I know will never end but Diana is a very loving and understanding woman who I know will never let them get to her. She has taught me so much about how to deal with society’s views and attitude towards people with disabilities and illnesses. I feel like I am a new person because of her and I will cherish that for as long as I shall live.

Am I correct that the two of you will also be parents soon? Is your wife undergoing any kind of genetic testing as a precautionary measure? Yes Alhamdulillah we are expecting the pitter patter of tiny feet in November. Diana and I had discussed the fact that our baby is more likely to be born with a hereditary illness so we put having a child on hold. Then at the start of the year we found out we were expecting a baby and I remember the feeling going through my body. I felt so warm and alive. I felt my heart racing so fast and that I was feeling dizzy from all the excitement. It took a few days for the reality to sink in but I was just so happy I couldn’t stop myself from being overwhelmed. We did not have any tests done due to the stage of the pregnancy but we are certain that whatever happens we will deal with as a family and we are praying very hard that our baby is born healthy. Soon inshallah we are going to be a small family, one where there are no hidden skeletons in the closet.

Are there any additional comments you’d like to add? I would like to thank you again for giving me this rare opportunity to answer your wonderful questions. I have enjoyed answering each and every one of them, going back to make sure my English is correct, and yes I know I have had plenty of help with the grammar and spelling from my darling wife Diana who I would like to thank for bringing serenity into my life and lighting my soul. Keep on writing American Bedu and I wish you a speedy recovery.

Thank you again for sharing, Khaled. In closing, I wish you and your wife and future bundle of love and joy all the very best! I hope that you will allow me to do a follow up interview after you become a Dad!

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Published by

Tara Umm Omar

American married to a Saudi.