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.