Subject: My Problem and how I solved it, "I broke the law to save my son."

I broke the law to save my son

by Cheryl Johnson*

We're the most normal family you could imagine. We mail in our taxes on
time, and we always stop at red lights. We never take more than ten items
through the express checkout lane. We've got a basketball hoop out front
and a swimming poo1 in back. I'm a troop leader for the Girl Scouts. And
every morning, I send my 17yearold son to school with marijuana in his
backpack.

Never in a million years would I have chosen to do this. But in my heart I
know that marijuana is helping Simon get on with his life. You see, he has
Crohn's Disease, an incurable and painful inflammation of the intestinal
tract that can cause lifethreatening complications. Simon is plagued with
nausea and vomiting, and the only thing that relieves them is marijuana.

So, Simon uses marijuana with our blessing. I even bought him a lipstick
holder in which to keep his daily supply though he has to be careful no one
sees him using it. A law was recently passed here in California permitting
the use of marijuana for medicinal purposes, but federal law still forbids
its sale or use under any circumstances.

I think it's important for people to know that my husband, Dave, and I
aren't weird, or overly permissive parents. In addition to Simon, our
middle child, we have two daughtersMarie, 19, and Julie, 11. We live in a
middle class neighborhood in San Jose. Dave is a manager for a computer
company, where he's worked for 16 years, and I've been a radiology
supervisor at a hospital for 21 years.

The first time Simon got sick, he was 6 years old. His firstgrade teacher
told us he was trying to avoid doing homework by faking stomachaches. But
then he
started throwing up so often that his doctor had him admitted to the
hospital. After three weeks of tests, the results were inconclusive.

Simon spontaneously recovered, and went on just fine. He was an outgoing
kid quick with clever oneliners, someone who cheered you up just by being
around him. His medical ordeal seemed over, and we gratefully put it behind
us.

It wasn't until he was 13 that he began complaining of severe stomachaches
again. Over a couple of months, I'd begun to notice that he was getting
really pale and lethargic. Then he started throwing up, and I took him to
the doctor, determined to get a definite diagnosis.

Simon's condition worsened, and he was hospitalizedthis time for a
month. Finally, we were told he had Crohn's Disease. We'll never know if he
had the illness when he was 6 and his doctors simply missed it or if he had
ulcers, which was their best guess at the time. In any case, we now knew
for sure that he had a devastating disease, and we were very worried. The
doctors said they didn't know if the disease was hereditary. As far as we
can trace, there's no history of it in our family. Simon was put on
Prednisone, a powerful steroid that controls the inflammation but can be
taken for only a limited time.

He would improve while on the drug then get sick when he had to stop
taking it. When Simon was 15, he developed other symptomsa high fever,
pancreatitis, anemia, internal bleedingany of which could have been
fatal. For two months, he lay in a hospital bed being fed intravenously.
Dave, Marie, and Julie would come to see him every afternoon. I rarely left
the hospital. All I could think about was how unfair it was that my sweet,
funny boy was going to have to deal with this cruel disease for the rest of
his life.

Finally, the doctors put him on a drug that seemed to control the
disease the immunesuppressant 6Mercaptopurine. Unfortunately, it
exacerbated the nausea and vomiting. Simon tried a number of prescription
antinausea remedies, but they either didn't help or made him groggy. After
his release from the hospital, he had to stay home from school for a month,
and was so sick and depressed he didn't want to be around anyone. Who could
blame him?

On his own, Simon found a way out of his misery. While still in the
hospital, he'd heard that some cancer patients smoke marijuana to relieve
their pain. It's not hard for a high school kid to get marijuanait's
everywhere. He bought some from a schoolmate, and tried it.

We began to notice that he seemed to feel better at times, yet we didn't
understand why. But Simon didn't want to answer our questions; in fact, he
started to withdraw from us more and more. He became secretive, someone we
hardly recognizedsneaking out of the house at odd hours, barely talking to
us at all. He was also hanging out with kids we suspected were drug users,
and his grades dropped drastically.

Dave and I found out what was going on in the worst possible way: A school
counselor found Simon sneaking a puff behind the tennis court and called
the police, who came and arrested him. He was immediately expelled and
reassigned to another school in the district.

The moment I found out about the marijuana, I went ballistic. I screamed
and yelled and lectured Simon, without giving him a chance to explain. All
I knew was that we'd always taught our children that it's stupid to use
drugs, and here, I thought, was my son getting stoned!

My reaction scared him so much that he couldn't tell us the truth: that he
needed the marijuana and feared we'd take it away and start watching his
every move. In a calmer mood, Dave sat down with him and told him he had to
give it up. At that, Simon cried and said he couldn't and why.

We changed our minds once we saw that the marijuana really helped to
control his nausea and vomiting. And Simon didn't have to get high he
could keep the dosage at a relatively low level.

Simon's troubles were hardly over. He was afraid to take the marijuana to
his new school, where he often felt so sick he'd have to put his head down
on his desk. He tried to explain why he couldn't raise his head, but the
teacher thought he was just being disrespectful. And because he'd entered
the school on probation, it took only these minor incidents for him to be
expelled again. I was furious, and decided we had to make school officials
understand what Simon was up against. Together, Dave, Simon, and I called
on the principal at Simon's first school and explained his illness. He was
accepted back. Soon his grades improved, he got a parttime job, his
friends changed. He was our Simon again, the boy we've always loved.

We limited how much marijuana Simon had at any given time because we
didn't want him to get into trouble or give any to his friends. He started
keeping a small amount in a plastic Baggie in his room, and that's the only
place in the house that he's allowed to use it. He takes a few puffs in the
morning, another dose middayalways off school premises and a final one
at night. I keep a larger bag in my room. He knows where it is, and he's
proven to us that this is something we can trust him with.

Now that our family is pulling together, we've become a tighter, tougher
unit. We've made every Tuesday evening family night, no matter what. We
either go out to dinner or a movie or just sit around playing a game. We
know we can count on each other when it matters.

Dave and I have explained to our daughters what Simon is doing and why,
and they've been very supportive. Simon's older sister, Marie, used to
drive him to school every morning and would have to stop on the way so he
could throw up. When he was in the hospital a couple of years ago, she
answered questions about his health from teachers and kids which was
tough because she was scared he was going to die. Now, she's become his
champion; in her last year of high school she wrote a paper explaining why
she believes that marijuana should be legalized for medicinal purposes.

Because we hated the idea of Simon having to buy marijuana on his own, we
started taking him to the Cannabis Cultivators Club in San Francisco. It's
a 90minute drive each way from our home, so it takes the whole day just to
get his medicine the kind of errand most people can do by just popping
into the corner drugstore. We take the girls along on these monthly trips
and make a day of it by going shopping in the city or taking in the sights.
The club requires a doctor's letter, which we got from Simon's
gastroenterologist.

We got scared early last year when state drugenforcement officers raided
the club and shut it down. For awhile, we thought we'd be forced to buy
Simon's marijuana on the street, risking arrest and God knows what else.
When I told my friends and coworkers about his problem, a number of them
came up and whispered that they could get marijuana for me. It seemed as if
everyone knew how to put their hands on it but me!

But in November 1996, after California residents approved Proposition 215
allowing the medicinal use of marijuana, the cultivators club reopened.
Still, we're in a catch22: Though a doctor in California can now
"recommend" marijuana as a health care regimen for a specific ill ness, the
American Medical Association warns that a doctor who does so risks having
his license to prescribe any drug revoked by the Justice Department $ Drug
Enforcement Agency.

I have to say, when I look at Simon's plastic bag, I don't see something
legal or illegal. I see medicine medicine my son needs to live a full
life. And that's what he s trying to do, under tough circumstances

Simon has a special gift for under standing other people's pain. Recently
he heard about the wife of a friend of mine who was suffering from nausea
brought on by chemotherapy. Her doctor had recommended marijuana, but she
didn't know where to get it. Simon knew what this woman was going through
so he divided his supply and gave half to her. I was proud of him.

The idea of any of us being arrested by federal drug agents and going to
jail is terrifying. But if there are options out there that we haven't
tried, I'd like to know what they are.

These days, we're just happy that Simon is busy with the same things as
other boys his age. He's starting his senior year in high school now. Me
likes to dunk basketballs on the court out front. Even though Simon has
tried to explain the situation to his friends, they don't always get it.
Sometimes they tease him and say, "You're so lucky. Your mom lets you smoke
pot." He has mood swings like most teenagers days when he seems to need
his family and days when he doesn't want anything to do with us. He doesn't
like his parents telling him what to wear or hanging around when his
friends are over which sounds like your typical 17
year old. He loves computers and plans to attend a computer training school
after he graduates. Hopefully, he will have a normal life span most
Crohn's patients do.

Simon still has serious medical problems. The 6Mercaptopurine can
cause liver damage, so he has to have his blood tested monthly. The current
plan is to keep him on the drug for as long as it continues to be effective
and doesn't harm him. We're keeping our fingers crossed. We do a lot of
that in our house.

I've never thought of myself as a crusader. But I know I'm not crazy, and
I'm not a criminal either. I'm just a mom who's doing the best she can for
her family. Because that's what moms do. *

* Names have been changed to protect privacy.