My wife and I are in a one-of-a-kind situation.

Lots of people are forced by circumstances to be caregivers for their spouses. Some are also working full-time jobs. Not many have to do it while trying to navigate the government’s insanely convoluted and onerous medical marijuana access program while keeping one eye on someone who could go into full, life-threatening convulsions at any moment.

For me, it all started in the autumn of 2001, after a sensible and responsible dose of three different medications sent my epileptic wife into cardiac arrest.

Christine has a rare form of epilepsy. There is no deformity in her brain to be repaired or removed, no surgery that can be performed, no pharmaceutical that can moderate the seizures.

She has what’s been described to us as “a generalized electrical problem with her central nervous system.” Part of this condition is that her brain is, for lack of a better term, “out of phase,” so every light she sees flickers the way you and I see a flickering fluorescent tube that’s about to burn out. She describes every bus ride, mall visit and doctor’s waiting room as “a rave,” and often wears a blindfold in public.

Feeling sick and bloated from pharmaceuticals and still experiencing seizures several times a week, she began using cannabis in 2002. Her seizure count went down from just over 60 (of various kinds) in the first five months of 2002, to 13 in the remainder of the year. The next year she had only 13 seizures in total, some big, some small. The year after that nine, and just five in 2005.

She’d go 156 days with no seizure at all, then 189 days, then 276 days!

She could go out alone, be left at home alone. Our worries faded. The doctors were astonished as the trend continued right through to the early months of 2008.

On March 24 of that year, however, things took a dark turn. A seizure came. About 10 minutes after the first one hit, she had a second. Twelve minutes later, a third. It was then that I made a decision that I have been second-guessing ever since: I called the ambulance.

By the time they got to our home, Christine hadn’t had any more seizures. But they were keen to shoot her full of Ativan all the same because she was squirming in the stretcher chair and might go into convulsions again.

She had more seizures in the ambulance. Inside the ER, a full-on hospital drama unfolded. I stood there in shock. She had 10 more seizures that afternoon – or maybe it was just one long seizure they couldn’t tell after a “load dose” of Dilantin.

I took her home the following morning, against doctor’s orders. She has been having anywhere from eight to 20 small seizures and one grand mal per month, every month, for over eight years. She wets herself in public sometimes, so we spend about 95 per cent of our time in our 544-square-foot apartment in Ottawa.

Although cannabis has failed to entirely curtail the seizures, it has helped minimize their frequency and ferocity. We dare not risk going without to see how much of a difference it makes.

She has had a licence for medical marijuana from Health Canada since 2003. I have had one since 2004 for fibromyalgia. In 2007, I got out of the wheelchair the doctors said I would be tethered to for the rest of my life and two months later walked from Bronson and Queen all the way to Major’s Hill Park in the Million Marijuana March dressed as Jesus.

We have, over the years, grown in our apartment and had designated growers supply medicine to us. We helped found the now-closed National Capital Compassion Society, spending many months prior to that running an informal compassion club out of our apartment. But it was unsustainable. Not enough patients to cover the overhead, and unlike in Toronto and Vancouver, we couldn’t do it out of a storefront, so hardly anyone knew of its existence.

Although there are a lot of pot users in Ottawa, the city remains culturally anchored somewhere before 1964 where cannabis is concerned.

In the spring of 2014, after the Harper government passed new medical pot regulations and our designated growers were no longer permitted to grow for us – we were left holding the empty bag, so to speak. Many medpot card-holders filed lawsuits against the federal government demanding compensation after the program was shut down and replaced with Marihuana For Medical Purposes Regulations. Our suit calculated the cost of an ounce of pot per day (enough for the both of us) at $15 a gram, indexed, for 40 years.

We have been living on marijuana charity ever since. On ODSP and trying to reduce our collective symptoms by spending almost all our money each month on the healthiest food we can afford, we have basically $50 a month in a good month to spend on our medicine.

Many marijuana patients and suppliers across the country have come to our aid, sending vials of Rick Simpson oil, hash, dabbing goo of various kinds and bud – all of it top-shelf and totally free of charge.

One guy even sent us a baby food jar with 28 grams – a full ounce – of high-octane shatter. That jar sat on my desk next to my vape pens for weeks, and every time I felt like going off and drinking myself into a towering stupor, I would have some of that dab and the feeling would fade.

These donations have literally saved our lives.

But what the future holds is anyone’s guess. The government has just passed new medical marijuana regulations that will allow medpot users to grow their own, within certain limits.

The new Health Canada regulations, however, say no one can get pot legally from a dispensary. We can’t get it from other patients or growers. And growers and patients can’t sell their medicine to other patients. We are only allowed to buy marijuana from government-authorized licensed producers. Even accepting charity, we would be in violation of our permits. Our choice is between suffering and violating the regs.

Russell Barth is an Ottawa-based medical marijuana user and activist and co-author and illustrator of the children’s book Mommy’s Funny Medicine.

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