You are single with three children. One day when your daughter is seven and a half years old the left side of her face is suddenly paralyzed. She can’t talk, swallow or breathe properly and begins hyperventilating. She can’t blink and saliva is running from her mouth. You rush her to the emergency room, but before the doctors have an opportunity to see her, the symptoms are gone.
After that it continues coming back and you ride the ambulance with your daughter many times. It takes the doctors one and a half years of testing to conclude that your daughter is epileptic. After that the medication begins and the side effects are severe. Your nine year old daughter goes lost as she begins scratching and biting herself and is aggressive towards you. You no longer reach through to her. She has problems sleeping, she has memory gaps and tics. She wakes up in the middle of the night with panic attacks and runs around the house screaming until she falls asleep of exhaustion many hours later.
The doctors want to continue medicating, but you see firsthand how the medication is driving your daughter to the brink of committing suicide, so you look for other alternatives. On the internet you find a lot of first hand stories from parents in similar situations whose children have been greatly helped with non psychoactive cannabis oil. It is oil that doesn’t get you high; it only has medical effects. You buy some oil and try it on your daughter and keep her off the medications. As you do so the daughter that you haven’t seen for the past year comes back, smiling and eager to play. During the following six months that you medicate her with cannabis oil she doesn’t have a single seizure and life as a family is good again.
But then you run out of cannabis oil and you don’t have enough to buy more. After two weeks your daughter has another seizure. You rush her to the emergency room where you tell the doctor about the remarkable recovery she has done on cannabis oil. The doctor orders a drug test which is sent to the girls regular doctor who then reports it to the social services. So now social services are going to determine if you are a fit parent for your child.
What is right and what is wrong in this case? What would you do?
This is a story of pain, frustration, hope and despair.
A story about the struggle for better health.
A story of medical cannabis.
This is my story.
I would say that I am a rather ordinary man in my upper 30s. I live in the countryside with my wife and our daughter. On weekdays I work as operations manager in health care. I have an interest in diet, exercise and health, both mental and physical. In my spare time I like to watch movies and series, travel, go to dinners, watch ice hockey and socialize with family and friends. I’m a typical average Joe I guess.
What separates me from most others is that I broke my neck in a motorcycle accident at the age of 15, which left me completely paralyzed from the chest down and partially in the arms and hands. Today I have been sitting in a wheelchair for 21 years and my need for assistance is around the clock. Despite my disability I have never seen myself as especially different. I have always had a positive attitude towards life and I have lived it like most others.
My spinal injury was a gigantic shift in my life and has brought with it a lot of hard work. In addition to the paralysis I have many problems that have to do with the complications of the injury. My biggest problem is neuropathic pain (phantom pain in the paralyzed areas), spasticity, inflammation and overworked shoulders, twisted stomach, sleep problems, urinary tract troubles and prostatitis. When these complications become too intense and protracted, it happens that it goes to the psyche in form of anxiety. And then sometimes the anxiety results in depression. These periods have been the worst in my life. They are something I never want to experience again.
At its worst my neuropathic pain feels like a tank ran over me, from my nipples down to my toes. Pain in varying degrees are a part of my everyday life. It has been so for over 20 years and the pain has gradually increased over the years. I rarely show my pain outwards, but it’s hard to hide it from the family. On days when you can barely get out of bed it is difficult to hide it from anyone.
I am very careful with my health. I eat healthy and controlled. Earlier I rarely drank alcohol and now I don’t drink at all. I exercise regularly. Having no synthetic drugs (which incidentally is very rare among people with spinal cord injury), except when I become seriously ill, as with a urinary tract infection which requires antibiotics.
I have during my years had very high standards for what I expect out of the health care system. I have always been involved in my health. I’ve talked, listened, proposed, nagged, argued and cried to get the help I need. Some doctors listen. Some understand. Some give out pills as if it were Easter candy. All doctors have had one thing in common – no one has yet been able to help me. I have tried most drugs and treatments for my pains and other problems. Lyrica, Gabapentin, Sobril, Tradolan, Tramadol, etc. The side effects of each of these drugs have been terrible and unacceptable when compared to the little relief they have given me. In a last attempt to help my pain I got a referral to a pain clinic. I was called by a senior physician who simply said: “We see in your journal that you have tested most traditional treatments. What we can do for you is to offer you a treatment with Methadone. There is unfortunately nothing else we can do.” That was the verdict. It may sound strange, but you didn’t misread that. All they had left to offer me was Methadone.
Somewhere around that time I felt that the health care system had reached its limits when it came to my pain problems. As they themselves came to the realization that they really could not help me, it was easy to lose hope altogether. For believe me, hell will have frozen to ice before I voluntarily slaughter my body with Methadone.
Since I have always been very careful with medicines that do not drastically improve my health or relieve my pains, I have been interested in alternative medicine and herbal remedies. I have tested herbs, roots, flowers and oils of all kinds. For my pain and my anxiety (that live in symbiosis), I have never found anything that gives me the relief I need.
Many years ago I read an article on Cannabis and the plants analgesic properties. After a bit of research I decided to try cannabis in pain relief. This was 15 years ago. Over a 10 year period I tested cannabis a handful of times. They were different types of “street pot” that I managed to get hold of. I have quite a low tolerance level when it comes to alcohol, tobacco and drugs. The same applied to cannabis. I was uncomfortable and generally felt pretty bad even in relatively small amounts. It did have some effect against the pain, but the side effects were too great. It is said that Cannabis is not for everyone. Cannabis was not for me.
A few years ago I was reading a discussion about neuropathic pain on a forum for spinal cord injuries in the United States. The thread discussed pain management using cannabis containing high levels of CBD. It was a kind of Cannabis without the, in my case, undesired side effect of being stoned. I was very curious and continued my research on CBD and discussed it with the people who use CBD-rich cannabis for their pain. These people used cannabis with a distribution of approximately 1: 1 CBD / THC. CBD unlike THC is not psychoactive and does not cause intoxication. CBD has for example been shown to have anti-epileptic, anti-depressants and anti-inflammatory properties. Together, the CBD acts as a neutralizer of THC’s psychoactive properties, which allows one to take advantage of both THC and CBD’s’s medicinal properties without experiencing any rush.
I came in contact with some people on the CBD Crew, a group of dedicated people who specialize in developing CBD-rich cannabis of that particular type. After long discussions with knowledgeable individuals in the world of medical cannabis and a deep moral discussion with my wife, I decided to make an attempt to medicate with CBD-rich cannabis. I grew my first plant in early 2013. I harvested, dried and cured it. I do not smoke so I made the oil which I planned to eat.
I started at low doses and slowly increased. The result was astounding and I must of course tell you what cannabis is done for me. I cleaned my mail recently and found a message that is written to my doctor at the end of last year that describes this pretty well. I have always had an open dialogue with my doctor about my use of cannabis as medicine. He has witnessed the health benefits I had with cannabis and he has also made notes about it in my journal. Below is the email.
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I am going through my medical records of recent years and thinking about the future and my health. Now it has been more than a year since I started self medicating with my green herbal remedies. It is quite clear when I read my journal what a positive impact this medication has had.
Before I started this, I had several periods of deep concern and on a few occasions it was so bad that I became depressed. XXXX was involved for a while and can certainly attest that I was not feeling great. One period was so bad that I had to be medicated with antidepressants for half a year (by family doctor). In addition to this, I have troubles with among other severe pain, insomnia, IBS and spasticity.
These years that I have had since I introduced my medicine have been the best years for a very long time. I have not had a single day with even a hint of anxiety. My pain is less severe. I have no trouble sleeping any longer. I am basically free from spasticity. My IBS is better. I have more endurance. I am a positive, energetic, happy, and see life with totally different eyes. I have increased my working hours. I have started exercising regularly. The relationship with my wife is wonderful. And the list goes on. My life took a radical turn and my surroundings – wife, daughter and assistants – all say that they see a completely new person in me.
However, my new life comes with a price. According to Swedish law I am committing a pretty serious offense medicating myself as I do. I risk a fine and maybe even prison. I risk my work. I risk my family’s and my reputation. It’s a very high price. At the same time I risk losing all of that if I stop with my medicine, because I dare not even think about how I felt 2 years ago. In addition to this, it is not easy to always have access to my medicine. It is becoming an impossible situation of trying to have enough medicine available. It is also a constant concern that this information ends up in the wrong hands.
[Lots of text where I beg my doctor to let me try Sativex, one of the few approved cannabis medicines in Sweden.]
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CBD-rich cannabis works really well for me, to say the least. Thanks to cannabis I have an opportunity to live a life I never thought was possible. A life where I wake up every morning and look forward to getting out of bed. A life that no longer revolves around trying to cope and survive the day. A life where my health doesn’t hinder me and my family’s lives. A life where I can work, contribute and be part of society. Without noticeable side effects.
Two months after this mail, January 22, 2015, was the day when everything came tumbling down. I was eating breakfast when there was a knock on the door. Outside were two men in plain clothes waving their police badges. They asked to look around and began asking questions. I understood that lies wouldn’t help me, so I told them my story about how and why I use cannabis as medicine. They took my three plants and a small amount of finished medicine that I had left. A brief hearing was held and they left our home. I won’t go into detail about the encounter. The police were respectful and the whole thing was quite un-dramatic.
Once the initial shock subsided came the shame, anxiety and feeling of being very small and insignificant.
After a few days the pain began to come back, the spasticity increased and my sleep was disrupted, my stomach began to fuss and I began to be reminded of how my life actually was before. A life that I can no longer imagine for myself. After two weeks I caved. In sheer panic I called my doctor and said that I refuse to give up and I do not accept to live this way.
I now have Sativex on prescription, but not subsidized, which my doctor had tried to fix. Sativex is incredibly expensive. So I took from my savings, bought Sativex and hoped that it would work as well as I thought it should. I followed the entry stairs dosage and gave it a decent and honest chance. The effect I got was extreme fatigue, difficulty concentrating, and total incapacity to manage my work and my life. For my health Sativex did nothing else than reduce my spasticity.
The disappointment was complete.
The neuropathic pain is worse now than ever, my IBS symptoms are out of control, I have urinary tract malfunctions, I have high levels of anxiety and my sleep problems reinforces all these ailments. Without reason. There is help to be had. I just do not have the permission to use it. 1 step forward and 2 steps back pretty much sums up my current situation.
Now I will be prosecuted. I will be tried and punished.
They are going to punish me because I have chosen to help myself to a better, healthier and more dignified life. I have chosen to defend myself against the illness. That choice is based on the fact that the healthcare system cannot help me. It is a choice based on the first hand knowledge that heavy narcotics cannot help me.
It’s not enough to take away my medicine, my health and my dignity. I should also be punished, at any price. There is something very warped and inhuman to it.
I have committed a crime, I know. A crime in which there are no victims.
But the bigger and more relevant question is, have I done something wrong?
Is it wrong to refuse to feel bad?
Is it wrong to relieve pain and other health problems?
Is it wrong to work, contribute to society and have a decent life?
Is it wrong to be a better father, husband and friend?
Is it wrong to think for yourself and dare to challenge?
Is it wrong to choose a good health?
Is it wrong to choose life?
Is it wrong to use medical cannabis in order to achieve the above?
My answer to the question is hopefully quite clear. I have finally found a medication that works for me. A medication that has given me my life back. For me it’s about survival and the right to a dignified and healthy life. I have been asked if I regret my choice. The answer is no. How could I? Now I know that there is help for me. After so many years of suffering, there is hope. The hope of a better life.
My battle starts here. I intend to stand up straight and do everything in my power for the right to better health. I choose to take the fight because I feel a responsibility to myself, my family and my friends. I also feel a responsibility for all the sick, persecuted, oppressed and vulnerable people who can or will not stand up for their right to a humane life. I am far from alone. There are too many of us suffering in silence. Without reason.
I risk being slandered, attacked, questioned, discredited and diminished. But I will never give up. Never.
What really matters and can make a difference in the end is what you think. Next time it could be you, your best friend or your loved ones who are denied the right to health. Your opinion, like mine, means something. I will be happy to answer questions.
Share. Comment. Tag. Mail. Call. Make your voice heard. Say what you think. Question. Criticize. React. Act.
Thank you for taking the time to hear my story and an extra big thank you to all wonderful people who have supported and helped me along the way.
People have always searched for the higher meaning of existence. In their search they have had sensations of the highest divine and tried to name that which cannot be named. They have sacrificed to Zeus, thanked Freya, asked Shiva for focus and God for mercy. They have searched inward and outward with dance, prayer, singing, yoga and meditation.
One of the oldest traditions in order to get in touch with the highest divine, and with the other realities that surround us, has been by using plants. In the beginning humans were very close to nature and talked with the sun and the plants, the wind and stones. Nature was a teacher who shared its wisdom, but who also helped humans to be able to get in contact to other realities.
Over time some people have however made the experience more academic than spiritual. While the original spirituality was based on every persons own experience and their own contact with the highest divine, nowadays many people are content to believe in a constructed religion. They do of course overlap, but I’m guessing that most religious people today do not have a personal experience of contact with the highest divine, but are satisfied with believing others’ descriptions of it.
To me there is big group of illegal substances that is intimately connected with spiritual exploration – mostly those we would call natural psychedelics. I’m talking about plants and preparations such as Ayahuasca, San Pedro, Peyote, Cannabis (semi-psychedelic), psychedelic mushrooms and Iboga.
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Ayahuasca is a preparation made from a jungle vine and another plant. Shamans have probably used it for more than 6,000 years to have contact with other realities and heal people. It is used almost exclusively in ceremonial contexts, but is banned in Sweden because it contains the natural substance DMT, which is also found in the human brain and appears to be heightened and released by prolonged meditation, sleep, and at the moment of death.
San Pedro and Peyote cacti are used in similar ways and in similar contexts, for deep transformative and spiritual experiences. As far as we know the knowledge to work with them is probably more than 4,000 years old, but as with all these substances it might very well have been used for much longer than that. Today the knowledge is kept alive by South American shamans and North American Indians. While the cacti itself is legal in Sweden, it is illegal to consume it because it contains the natural substance mescaline.
Cannabis is regarded in Hinduism as a gift from the god Shiva to mankind, created from his body. It has been used for more than 4,000 years, both spiritually as medically in Hinduism and Buddhism, but more recently also in religions such as Islam and Rastafarianism. It is celebrated for its spiritual, mystical properties, but also because it allows people to see through illusions and lies. In the drug context cannabis is among the least dangerous substances, much less dangerous than alcohol or tobacco, but it is being fought with tremendous zeal. The active ingredient THC is easily spotted with a quick urine test.
Psychedelic mushrooms are available in hundreds of varieties and on every continent. The most famous Swedish psychedelic mushrooms are the Liberty caps, used by witches and shamans. In Europe, however, the Christian mass murder of dissidents makes it difficult to track past use. The mushrooms produce similar deep spiritual experiences including contact with other realities, past lives, a connectedness with nature and with the universe. Liberty caps are commonly picked in cow meadows after the first frost, but if you do so you are a criminal. All mushrooms containing the natural ingredient psilocybin are forbidden to handle.
Iboga is a West African shrub that contains the illegal natural substance ibogaine. It is documented to have been used in Africa in a spiritual context since the 19th century, but before that it is difficult to say. It gives deep transformative experiences and having taken Iboga one will often lie down for an entire day. Nowadays Iboga is most famous for its medicinal properties, as it has been proved to be able to break even deep rooted addiction with only one or two trips. But to do so is illegal.
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These are just a few of the illegal substances that have been used in spiritual practice for thousands of years before such recent phenomena as Christianity came along. Natural psychedelics are found on all continents, and maybe even in all countries. The tradition of using them in order to get in contact with other realities and with the highest divine has been preserved in many places in the world – by shamans in South America, witches in Europe, yogis and shamans in Asia and medicine men/women in North America, Africa and possibly Australia. However, they have for long periods been forced to go into hiding, because above all Christianity has violently persecuted them. Today this continues with the help of the disrespectful and discriminatory drug laws.
Drug laws thus not only violate minority rights, but also each person’s inherent right to their own spiritual experience and journey.
There are those who argue that these plants should only be used in their original cultural contexts, that is only the shamans of the Amazon should be working with Ayahuasca, and only the medicine men/women of North America with Peyote. With that logic the Liberty caps should of course be legal in Sweden. But besides that these people seem to overlook that we live in a globalized world and that the spiritual search has never let itself be confined to places or cultural context. Just as religions spread across the world and have borrowed freely from each other’s cultural contexts, shamanism is also worldwide and practitioners are inspired by each other. There have also been new substances used in similar ways, with similar spiritual effects and with similar healing properties – LSD, MDMA and Ketamine, to name a few.
Some people speak of religious freedom. I guess that would be the freedom to settle for believing in other people’s descriptions of the highest divine. I’m not interested in religious freedom. I require spiritual freedom – the freedom to have my own spiritual experience and my own contact with the highest divine. If my spiritual path happens to involve working with plants and in a tradition that is older than any religion, that is my business as long as I do not harm anyone else. A law that tries to stop me from doing so is nothing more than oppression and discrimination institutionalized.