The Struggle of Medical Cannabis Patients in Malaysia – Part One

CANNABIS CULTURE – Canadians, Americans, Europeans in many jurisdictions consider that they have oppressive laws.

Sometimes we don’t know or realize how really bad off many of the world’s people have it considering the cannabis laws in those oppressive regimes.

I have known Malay activist and spokesperson Yuuki Setsuna (pictured above with her son) for about 6 months, and met her in Thailand very recently.

She presents her story here. I will tell you, it made me cry. I cannot believe the courage in some people to persevere against powerful forces of oppression.

Mrs. Setsuna says I am an influence for her, well, I am awed and humbled by her big courage and commitment to our plant, our medicine and the dignity of all people.

Our Lives as Medical Cannabis Patients in Malaysia, Part One

by Mrs. Yuuki Setsuna

My story is definitely a Malaysian story that could only happen in a country like mine. Don’t get me wrong, I love my country and my people, but I despise my government and their abusive policies. I think I am a good citizen. I have a job and pay the taxes, and I have a family.

My sons, one is 21, now serving six months in Sungai Buloh jail house for possession of a tiny amount of cannabis – and my youngest son, 18, is partially blind. Listed as an OKU (registered disable person), he’s been sick since he’s been born. I spent the first three month of his life nursing him in University Hospital, Kuala Lumpur. His conditioned was so bad the specialists were telling me that he will be blind, mute and paralyzed permanently. Over the years, miraculously, he slowly recovered. He’s no longer mute and he’s able to walk and run but he is unable to see clearly. It’s ok, as long as he is with me, alive, I’m grateful.

I have hypokalemia. That is low potassium; hypokalemia refers to a lower than normal potassium level in the bloodstream. Potassium is a chemical (electrolyte) that is critical to the proper functioning of nerve and muscles cells, particularly heart muscle cells.

Normally, one’s blood potassium level is 3.6 to 5.2 millimoles per liter (mmol/L). A very low potassium level (less than 2.5 mmol/L) can be life-threatening and requires urgent medical attention. I’ve had this condition since I was 21. I don’t even know of this kind of sickness existed until one day I am suddenly paralyzed. I woke up that morning, unable to even move my fingers. My family rushed me to University Hospital of Kebangsaan Malaysia (HUKM) and I was diagnosed with this sickness.

There’s no cure for it. My doctor used to tell me, “just accept it. You are going to have this ailment to your grave.” But I was a young girl back then. I liked outdoor activities. I liked to swim, to go on long walks with friends for hours, or to enjoy myself dancing. I can’t do all that anymore. Too much exertion can bring on paralysis. A few years after that my condition got worse. I was then diagnosed with serious and life-threatening diabetes. My sugar reading once shot over 18 and I’m now taking insulin for it. Twice a day, 38 units per time.

Not long after that, my specialist told me than my kidney reading was getting worse. She said, if I lose another 3% of my kidney function, I will have to do daily dialysis. I was in pain everyday. I almost lost my ability to walk and was depending on a painkiller. Lot’s of it. And the only painkiller my kidney can take is dehydrocodone. I was taking 10 to 12 of those pills daily. Those pills were horrible. I lost my sense of taste. Everything tasted like paper. I was always high in that bad opioid way. I would lose my focus and get frustrated and temperamental. What made it worse is that the pills were not doing the job they were supposed to and I was messed-up mentally but still in pain. I felt my body was so heavy. At the time, I’m 28 years old, overweight by 78 kilograms. I was always grumpy, insomnia was normal to me back then and I had lost all of my life-affirming attitude.

Everyday I prayed to die: “I can’t take this pain anymore.”

My husband is the one that suggested cannabis for me. The first time I inhaled, all my worries were immediately gone! Everything was calm and for the first time in years and I ate two plates of rice that night. I had 12 hours of quality sleep and woke up feeling great. I have never looked back since. I stopped all those pills and insulin and only used cannabis! I began to walk and then slowly I learned how to run again. I’m 56 kilograms now, my proper weight, and am always positive now. No more whining or scolding others.

But I live in Malaysia, and my government has other ideas to control me and my fellow citizens who are denied this life-saving medicine. Indeed we face some of the most extreme punishments in the world.

My husband now is my second husband. We have been married for years but we can’t have our own children. My condition at that time was weak and I was on insulin so no chance for me to be pregnant. Until one day three years ago, I suspected I was pregnant. I went to HUKM to get it confirmed. They were shocked. Looking on my file they said, “It’s not possible for me to be pregnant.” That’s when the hospital finds out I have not taken their medication. I was using cannabis all this while. The specialist can’t believe her ears but then she told me whatever I was doing was clearly working for me. My pregnancy continued until I reached six months.

One night I was bleeding heavily with a sharp pain on my stomach. My husband rushed me to HUKM but the nurse refused to admit me as soon as she saw cannabis medical use in my file. I was in pain and she keep saying things like “You use marijuana? We don’t admit addicts here,” and so on. She failed to examine the fetus inside me that night. She claimed that I was lying about my pregnancy. I was in so much pain but I argued with her. I’m was crying. My husband’s desperate pleading could not get the nurse to help me. My wonderful man then rushed me to another hospital in Kuala Lumpur. It’s about 15 km away. Unfortunately it was too late. I lost my baby that night.

A year after that, my family struggles began. Once people found out I used cannabis, even for what are obvious medical needs, I was an easy target. In this country, if you are found guilty of having THC in your urine, you can be jailed for up to 2 years or a 5,000 Malaysian Ringitt ($1,500) fine or both. Our urine is their business, one might say.

My husband is the general manager of Western Union in one part of Kuala Lumpur (the capital city of Malaysia). Our family rented a hotel room not far from his work place. He had just started the job and while searching for a house we stayed at the hotel. Our room got raided one night. They took my husband and charged him under 39A1 of the Malaysian Dangerous Drug Act. If he was found guilty he could be fined up to five thousand MR or sentenced to two years jail time and mandatory minimum of three strokes of a birch cane across his back. Perhaps you have seen movies where people get the lash as punishment in movies about slaves and prisoners. Here it still a reality. In 2016. Consider that. Think about how you’d feel knowing one you love will be tied to a structure and given the lash – for cannabis.

The trial went on for one and a half years. At the end of it, my husband was found not guilty of possession but WAS found guilty for Sec 6. Sec 6 is for the urine. My husband is now under probation for two years with Agensi Anti Dadah Kebangsaan (AADK) – the Anti-Drug Agency of Malaysia. He’s under curfew by the police. He can’t leave this state and has to send his urine every month to AADK for evaluation. My husband can be jailed for up to three years if there’s a trace of THC in his urine.

Nonetheless, I cannot tolerate this injustice and violation of our fundamental humanity, so our fight for the movement of cannabis medicine and our human rights continues. We managed to get attention. Suddenly medical marijuana is viral on facebook in Malaysia, and medical knowledge comes through the world into Malaysia despite the language barriers. I will not be cowed, but it requires nerves of steel and sometimes it’s a bit much. That is why I look to Marc Emery and his brave endurance of prison as my inspiration. I have followed Marc Emery and his warrior spirit and it gives me strength.

I started a small Facebook page called Malaysia Medical Marijuana. My intention is to spread awareness about cannabis to my people. I try my best to translate every article about cannabis from abroad into the Malay language and then I share it on the page. I want my fellow citizens to know that there’s an option and alternative to their suffering. There may be a cure for cancer too. For so long hospitals in Malaysia have only offered two kinds of cancer treatment: Chemotherapy or palliative treatment. In another words, get ready to be poisoned or go home and die! Now there exists a positive possibility for surviving cancer but the government refuses us this choice to stay healthy and alive.

Even my little facebook page has received rebuke in Malaysian parliament. A politician rose in the parliament and denounced my page, said I should be arrested and ignored our entire medical and human rights approach. He claimed I was trying to get youngsters to smoke weed and pollute their minds by spreading articles about the medical use of cannabis. I deny this claim. People have a right to learn and grow. Knowledge can’t be stopped. Nor will I tolerate the suppression of the truth, particularly when I am alive and well only because of this truth.

We finally managed to get an apartment. My husband now owns two canteens in Perak, which is about two hours from Kuala Lumpur. At this point, I was using cannabis daily. Buying it from a black market, I knew I was risking my freedom every time I did it. If I got caught while buying, I would definitely not be coming home for the next six months to three years. But since I have used cannabis as my medicine, my health is has undeniably improved, my quality of life has been restored. Cannabis is the painkiller for me! I use it to replace the hydrocodone they once gave me. With cannabis I have my appetite back. Food started to taste good again! Sex with my husband is great every time now. We are a happy family. My eldest son had finished his high school and was now helping my husband with our canteen business.

One afternoon at about 4PM our apartment got raided by the police squad. There were eight of them. It was the school holiday, me and my husband were about to go out to see friends, my eldest son was sleeping in his room. My youngest son and my husband were watching TV while waiting for me to get ready. The police stormed into our house without showing any ID’s. They refused to answer my husband’s question and in fact one of the police beat him on his face and stomach. They woke my son up and handcuffed all of us. Our apartment is on level 15. We were escorted down by the police squad. My neighbours looked at us like we were criminals.

We were taken to Cheras Police Headquarters and were held there. They demanded our urine and police repeatedly beat my husband. The police then took us to the cells. The investigation officer came not long after that and he was quite surprised to see an entire family in the cells. He asked me to explain what happened and then asked me why I’m using cannabis. I told him about my sickness and he said he would try to see if there’s anything he can do to help me so that I won’t be charged in court. Three of us, which is me, my husband and my son have THC in our urine. The police claim they found a two grams of cannabis in my son’s room and charged him and my husband with possession under Sec 39A1. I, together with my son and my husband, were charged under Sec 6 because of THC in our urine. My 18 year old son however had no trace of THC in his urine but he still had to go with us to another police headquarters in Dang Wangi, Kuala Lumpar for remand before the police completed their investigation and charged us in court.

My whole family spent three days there, including my partially-blind kid that doesn’t even smoke cigarettes. In there, they put me in the women’s cell. The cell is about as big as a tennis court holding about 50 women for numerous nationalities and alleged “crimes”. Most of them are Indonesian, coming into Malaysia without visa and were due to be sent home. Another group was a group of beautiful Nepalese dancers. They danced for a club in Bukit Bintang. The club was raided and they were in jail as deportees. Next to that group was a group of women from China. Most of them were GROs. They were also due to be deported. And then there was these 8 Nigerian women who were simply there because they couldn’t show an original passport. There were also local women in the cell for a variety of offenses.

Remarkably, many women and men in these groups are drug-addicted and their charges include drug charges. Mainly for using methamphetamine or ice or heroin. And then there was me. I never used anything except cannabis. Meth or heroin is not my need but you can find it easily in the cells. The policemen would get a bunch of men that were in the remand as their dispatch boy. This dispatch boy would go from cell to cell asking if anyone wants to buy meth or heroin. Price started at RM 50. You can ask them for a lighter too. Besides the drugs, they also supplied cigarettes and phone for whoever can pay them.

I asked one policeman when he was hanging out at my cell why they sold meth and heroin to these people. He claimed that it’s easier to give the addicts what they need so they are “well” rather than enduring the howling and moaning of withdrawal symptoms in every cell. He had a point but I’m not an addict. I don’t used all these chemicals and the only reason I’m using cannabis is to help me get thru my many medical issues. So why was I put in here? There’s no bed. We slept on the hard floor. Food was bad. Really bad. They fed us with rice and fried fish everyday. The fish was so smelly I almost threw up. I didn’t sleep well or eat well those three days, I’ll tell you. And then my investigation officer discharged me under bail. He let me go for a while. Saying that he might come to charge me at any time because of my THC urine.

My son and I were released on the third day. My husband and my eldest son were sent to Penjara Kajang remand jail for their bail hearing. For Sec 39A1 (urine), their bail is 4,000 Ringitt each and for Sec 6 (possession), my son’s bail was set at 3,000 Ringitt.

My husband was released because his urine was negative. My son plead guilty to possession and is now serving six months jail time while my husband is still fighting his case in court.

That is my story to the present moment. My husband is facing jail, the cane, and possibly a fine. My son in prison.

Stress, yes I have it. Difficulties, we have that too. Am I deterred? Absolutely not.

The warrior spirit lives!

Marc, I’m going to tell you a story about a group of Malay people who think they can make changes in this country.
They are warriors that fight for our human rights. The right of freedom of choice in medicine and who owns our bodies; the individual or the state. The right to use cannabis. Most of them are serving or facing charges for cannabis in our courts. It is a very challenging struggle for us here in Malaysia and I know you care for all your people so I want you to know about us in case some of us don’t make it, or we are never heard from again.

These are the people history may not know but who make the world a better place for all others. Perhaps if I tell you they will not suffer anonymously and in futility. Perhaps, like you, they may help create a better world for their sacrifice.

Your admirer in the struggle for cannabis medicine, human dignity and basic human rights,

Yuuki Setsuna, Malaysia.

Watch for Part 2 coming soon to Cannabis Culture.

Marc Emery
Marc Emery

Marc Emery is a Canadian cannabis activist, entrepreneur, and politician. Known to his fans as the Prince of Pot, Emery has been a notable advocate of international cannabis policy reform for decades. Marc is the founding publisher of Cannabis Culture and Pot TV.