Saying Goodbye

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Sometime before the end of this year, I will probably have to say goodbye to my wife.

As most people know by now, my wife Christine Lowe has epilepsy. What most people don’t know is that for one third of people with seizure issues, pharmaceutical anticonvulsants are useless. Worse than useless, in fact, as they offer up a list of terrible side effects while also failing to prevent the seizures. Most of them don’t live long, and the lives they have are spent in hospitals or some other sort of care. Their lives are brutal, short, and sequestered.

When Christine was 21, she was told by a renowned neurologist in Kingston that she had a rare and essentially untreatable form of epilepsy, that the rest of her life would be characterized by ongoing seizures, trying different medications which would likely work for a while then fail, and eventually death from the seizures, the drugs, secondary injuries, or organ failure. That is if suicide didn’t get her first. That is what he told her. That people with her condition rarely see 40.

She spent the next ten years suffering: taking one medication after another, slipping further into sickness and despair, losing job after job, all of which eventually led to a life of boozing and promiscuity in an effort to simply connect with someone.

We met in 1998 and began living together as room mates with benefits in March of 2001. The first morning she woke up at my place she seized hard and peed in my bed. An hour later, when she awoke and I told her what happened, she got up to leave. But I didn’t let her go.

Autumn 2001: Christine took a new medication combo – a low dose and safe combination that any doctor would be perfectly comfortable prescribing – and she died. Having raised chickens and rabbits for meat as a teen, I knew perfectly well what dead felt like, and her light was out. I brought her back with my approximation of CPR in about 25 seconds, and she later said she saw the tunnel of light and her dead grandpa and all that. She told me it was the second time she had been briefly dead from sedatives.

In 2002 she decided – quite on her own – to quit her pharmaceuticals and just use cannabis to fight her epilepsy. I told her that if we were to do this thing, we would have to a) change our diet and lifestyle so that it would be basically beyond reproach, eating only healthy foods, lest our doctors and families think we were just goofing around, and b) go public and become activists to avert any public or police misinterpretations about our pot use. She was already thinking that.

Her seizures dropped off steeply. From over 60 big and small seizures from Jan. 1 to May 5 of 2002 she had just 13 the rest of that year. In 2003, she had fewer. 2004 – fewer still. Eventually, 2007 she had just one, or maybe 2, but they were 276 days apart or something. She had not had this level of seizure control ever in her entire life.

Christmas 2007: Her neurologist – quite reluctant, originally, to sign for her – said he was “astonished” and “stunned” and that she was having better seizure control than “people on a list of medications”. He was glad to sign the renewal.

March 24, 2008, 9:25am: Christine emerges, smiling, from the bedroom and prepares to start her daily routine of medicating with the Volcano vaporizer. Suddenly she goes into a big grand mal. I don’t panic, as it has been a long time since she had one. But then, not 20 minute later, a second came. 15 minutes later, a third.

I call the ambulance. They come, they shoot her full of ativan despite my warnings that she has an odd propensity for dying. “Better fire up the paddles first, guys.” I said. “She’ll flatline on you.” They did it anyway, because protocol.

She was taken to the Civic Hospital and it was a full-on TV-style hospital drama. People were sharply saying a bunch of medical stuff, tearing open packages, shoving tubes into her holes and tying her to the bed. I stood there, watching her urine collect on the floor, thinking: “This is it. She’s dying. Right here in front of me, my wife is going to die.”

But she didn’t. They gave her a “load-dose” of dilantin, she had several more seizures that day, and despite the assertions of the doctor who wanted to take her across town and give her more drugs, I brought her home the following morning. He and I both knew that if she went down that pharma road, she would die, but he was still acting like it was the right thing to do.

Since that day, I have barely left her side for more than a few minutes. She has anywhere from 3-6 “auras” or mild seizures, or beginnings-of-seizures per month, and one or two grand mals per month. We spend over 90% of our time at home. CCAC came in last year, and though the woman said we did – indeed – need some help around here, we fall just outside their boundaries of aid because Christine doesn’t need help getting dressed, eating, washing, going to the toilet or making food. Except when she does. We were handed a list of three services which provide adult babysitting, all of it costly, none of it covered by ODSP.

March of this past year, our MMAR growers informed us that they would not be risking arrest on the hopes of an injunction maybe happening, so they shut down production, and gave us what was left. We filed a $15.9 million suit against the government pointing out that the Allard Injunction fails to cover us as we cannot grow at home, cannot assign new growers, and can’t change addresses of the grow locations. Judge Phelan ignored this, so our suit goes nowhere, as we had expected.

We cannot sign on to MMPR because if we do, we relinquish any and all claims to our former growing rights under MMAR. Besides, MMPR is far too expensive for our needs.

In May we put out a press release announcing a press conference to discuss this issue, and a guy contacted us from some upstart compassion club, promising us 170 grams of free medicine per week. We cancelled the press conference thinking that the issue was solved or on it’s way to be. We did get 146 grams delivered, but nothing else since. Nor do we expect him to fulfill his very big and very public promise.

Since April, we received other charity from well-wishing friends that has bolstered our medicine supply, and we are rationing well below our prescribed doses, but as it stands now, we have no money, no medicine coming in, and no legal, or affordable supply line, and no options.

To add to this misery, we reach out to friends on facebook, and are given wildly impractical advice like “just grow at home”. When I point out that we have no money, no space, that the stress and space-consumption of an illegal grow would make her condition worse, and that even if we put seed into soil today, the first crop would not come until January or later, long after we run completely out of medicine in the last week of September… I get insulted. Called “difficult” “lazy” and “pessimistic”.

Not all my friends, mind you, but some.

So as it stands now, we are rationing our medicine well below the prescribed daily dose, we sit outside the law and the Health Canada regulations with our use of concentrates (instead of only using dried bud), and at this rate – we estimate we will run out sometime in late September or early October. Then the seizures will come. And with no cannabis to alleviate them, she risks not only injury and continued brain damage, but death.

We ask no pity.
We ask no sympathy.
We ask for no charity, though, if any comes, it will be greatly appreciated.

This was just to inform you that this happened to Canadians.

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About russellbarth

Trying to end marijuana prohibition, and educate people about marijuana, diet, prohibition, and sustainable living.
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10 Responses to Saying Goodbye

  1. Glenda Barr says:

    This is so painful to read, Russell. I hope that relief can come in some form, and that your story will influence the future. I really don’t think I can say that would be helpful in any way, but I feel a need to acknowledge your pain. Please, you and Christine, do the best you can with what you’ve got, and you have a precious gift in the special relationship you share. You are performing a valuable service by sharing your story. Each person who is touched by this adds some momentum to the quest for change. How long it will be before that change takes place is a complete mystery. It has been far too long already. Love to you both.

  2. russellbarth says:

    The morning after i posted this to @ctvottawa, I got bullied by a former friend. Called “drama queen”.

  3. nuttysweet says:

    Your situation is not of the norm. I apologize for your pain and heartache. I feel bad. You should move to Colorado. I don’t believe in the legalization of weed, but I do believe it has medicinal purposes such as in the case for your wife. Best of luck.

    I have a question. If you’re not sick yourself, why do you smoke?

  4. Jay Bergstrom says:

    Russell,
    I’ve truly enjoyed your letters to the media over many, many years. Big mouth, bad attitude – what more could one want? Thank you so much. Had a high school buddy come down with a bad case of stage 4 lung cancer last year. Did what I could, made him RSO goo that was sooo strong… but he died. He was only in Wyoming, so transit was possible. Plus ,I haven’t the ingredients now. Wish y’all were in Butte County, we would take care of ya.

    Christine needs weed! Canada is not that big a place. Well OK – pretty fucking big. But there are people that care about you and yours. If we could get Marc Emery or Erb to wave his scepter in your general direction, it might help. Youse guys are big in the movement, and we should buck up and support our down fighters. Drive a hundred km with a kg, why not? We don’t leave our people on the battlefield.

    Jay

  5. russellbarth says:

    Update:
    Dana Larsen has sent us some medicine and offered to match any donations.
    Other people have helped us as well, and others have promised future help as the deadline approaches, so our deadline has been pushed into November, now.
    Still, this leaves us using amounts well below our required doses, resulting in poor sleep and other symptoms.
    If you would like to help – even anonymously, just email him at dana@danalarsen.com and send an email money transfer. You send him $10, he will send us $20 worth of medicine. That is what he has pledged.

  6. Anne says:

    What is the name of Christine’s epilepsy? (What type of epilepsy is it?)

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