life with addiction, mental illness and stigma

It started about 9 years ago with a handwriting tutor.  In grade three Graham’s handwriting was terrible. I found him a handwriting tutor and drove him there three times a week until we realized it wasn’t having any effect on his handwriting. Over the next year it became clear it was something more than sloppy penmanship, it was like his brain was going way too fast for his hand to keep up. I found him a psychologist, had him tested and to absolutely no one’s surprise he was diagnosed with ADHD, and so started a long and inglorious period where I became an expert on 504 education plans, communicating with teachers, school social workers, and psychologists. I learned everything I could about the –constantly changing - prescribed medications and while I was at it I tweaked his already pretty healthy diet in an effort to improve his concentration and focus. At some point he told me he was seeing colours that weren't there, I had his eyes checked – all normal, and chocked it up to an intelligent and creative kid’s imagination.

During his middle school years I got even better at working with his teachers and school staff. He now had an organizational counselor who met with him a few times a week in an attempt to keep him from losing track of pretty much everything. I worried about him not fitting in, but I told myself a lot of kids have trouble in middle school and end up just fine, in high school things would be better, I was sure.

I can’t remember when he first told me he heard voices, but it was somewhere in his second year of high school. Again, I attributed it to a very active imagination and by this point his relationship with facts was off and on, so I didn’t pay too much attention to it. In high school there were many more pressing things to worry about. It wasn't easier, it was harder, so  much harder. I got to know a lot of teachers, became very close to his guidance counselor – who eventually memorized my phone number from the sheer volume of calls he had to make – the school social worker – who still hugs me when she sees me, and I got to know, quite well 3 separate school Deans.  He struggled through school, painful to watch because he was so bright, just not in a way the he could show. Things seemed to be getting better the summer before his junior year and he was hanging with people and going out and seemed generally happy.

And then his junior year. Small things at first, some dishonesties, stories that didn't quite seem to make sense, but he had friends and seemed to be enjoying himself, so I told myself. He was seeing a ‘very cool’ social worker who kept assuring me that everything was fine, and that I needed to back off and ‘give him some space’. Then I found a pack of cigarettes. I was appalled. This was the worst thing that I could imagine, how could a child of mine start smoking, where had I gone wrong? I got over that soon enough. Shortly after the cigarette discovery, I found out he had been selling his ADHD drugs at school and buying marijuana and cigarettes with the money. I found out he’d been stealing from just about everyone. Suddenly the cigarettes didn't seem so bad. His new friends? Customers. He had found a way to deal with his social awkwardness.  His ‘very cool’ social worker? He knew about everything, all the drugs, the dealing. He didn't seem so ‘cool’ anymore. All the signs pointing to something more much more serious mentally going on he attributed to me being an over protective mother, and he told me so several times.  I stopped taking him to that social worker, but some serious damage was done, from that point on Graham blamed me for taking away ‘the one guy who understood him’ and wouldn't cooperate with any new counselor, or social worker that I found for him. Graham still talked about the voices, but at this point I assumed everything he said was questionable – and generally this was true.

His behaviour became worse and worse. One night after 11pm he jumped out his bedroom window and ran

off into the night, just because. Catherine and I were each driving around for over an hour trying to find him. It was surreal. Eventually he showed up and we never did figure out why he did it or where he went. Within a few weeks his behaviours became concerning enough that I called the police, starting what was to be a long and complex relationship with Naperville Police Department and my son. We got lock-boxes and locked up everything of value in our home – money, medications, jewelry. During all this craziness I was taking him to a recommended drug education and prevention program. That was a colossal failure, and two drug counselors later, residential rehab was suggested. I drove him to the facility in Rockford and managed not to cry until after I was in the car coming home alone. For the next 35 days I was in constant contact with the facility and the school to participate in his recovery and to keep him from failing his school year. I drove back and forth twice a week. The nights I was gone my daughters were on their own. For the next year Catherine took over driving her sister to appointments because I couldn't.

Still we were confident that we had acted quickly enough and effectively and soon enough Graham would be well.

After he came home he started an Intensive Outpatient Program, four nights a week for 4 hours in Downer’s Grove. Back and forth I drove, again, the girls were left to fend for themselves. We did this for 11 months. I was also taking him to NA meetings most nights. Our life revolved around Graham his recovery program, his meetings, and his school work. I hired a private tutor and a life coach to try and save his school year. There wasn’t room for much else. He still blamed me for taking away his first ‘cool’ social worker, and wasn't working well with anyone.

He started his senior year – having passed his junior year just barely – with plans of doing well and finishing strong (a tag line from his life coach). I got to know yet another school Dean, and we had more unpleasant adventures.  He still talked about the voices and this time I decided to see if there was more than addiction going on in his brain. More doctors, more tests, much more money, more arguments and appeals with insurance companies and we ended up with a sobering result. Graham has bipolar disorder. By this time we had taking him off all ADHD stimulant meds because of their negative effects in an addictive brain and although he had been mostly cooperative with rehab and all the doctors and testing he decided the meds for the bipolar didn’t work and he stopped taking them.

Before the Christmas break it was pretty clear that he couldn't continue at his school and he was told he needed to attend an alternative school. He wasn’t pleased, but he adapted. A couple of months into that school, we were told he couldn’t continue to attend, that his behaviour needed a more controlled environment, and so with tremendous resistance he was sent to another very structured alternative school – where the staff “are trained to restrain” I learned during orientation.  He managed to graduate from high school. He managed this with tremendous support from countless professionals in the schools, in the recovery and medical communities, and from his family. Our lives continued to be dictated by his needs.

The day of his commencement arrived and I couldn't believe he would actually graduate. I thought we’d done it, we’d won, from now on it would be easier, the worst was over. I was so grateful and relieved and so very proud of him. He looked so proud in his gown, I don’t think he thought he would ever graduate either.

Sadly it was after he graduated that things got much worse.

He turned 18 right after graduation and was legally considered an adult. By the end of June we had to do the unthinkable, we told him that because of his behaviour he could no longer live in our home. The lying, stealing and erratic behaviour was more than we could bear. We gave him 45 days to change his behaviour, participate in his recovery, to start to take his medication, and at the end of the period if he had not moved forward even slightly, he would have to find somewhere else to live. To come to such a decision was excruciating, to follow through even when his behaviour had only deteriorated was worse. For the months after he moved out I was felt I was the worst parent ever. How on earth did we get to this point? It broke my heart to send him out – even though I spoke with counselors, his NA sponsors and several professionals about how to navigate this with firmness, boundaries and with compassion. That he was loved was never in question, it was the behaviour we couldn’t tolerate. There were late nights where he tried to break into the house long after I should be asleep and I would sit curled up in my room just listening to him try to get in through a locked window. We stayed in contact, sometimes I would hear from the police, sometimes from one of his friends. Near the end the police were looking for him, but because he was now an adult they wouldn’t tell us what for.  In the fall I received a phone call from one of his friends saying that he had tried to walking into traffic to kill himself and that he had been taking to Lindon Oaks. This was his second suicide attempt – the first happened at home when he swallowed a bottle of pills. There was no warning for either, they seemed to be completely impulsive. He was in ICU for the pills and straight to Lindon Oaks (LO) for walking into traffic.

This fall we started the cycle of in-patient admissions and outpatient programs. After his discharge from LO

he moved back in and agreed to take medication and participate in treatment. There was more driving back and forth to Outpatient programs and to meetings. There were 3 more admissions to LO, more outpatient programs after he was discharged. He was diagnosed with rapid cycling Bipolar Disorder, an Impulse disorder, Anxiety, and with Psychosis Not Otherwise Specified. It was decided the suicide attempts happened during manic phases, which is common with Bipolar disorder. At the beginning of December I received what was becoming a very familiar call – Graham was being discharged from the outpatient program and was recommended to a higher level of care – residential specifically. I found him a bed in Chicago and drove him in on December 5^th to his second residential rehab – which also specialized in dual diagnosis patients. While we were waiting in the lobby he pulled the advent calendar from his bag and ate his chocolate for December 5 – this, more than anything else broke my heart. He stayed there till the end of January with one 8 hour pass for Christmas day. While he was on a waiting list for a spot in a halfway house, I got the all too familiar call saying he couldn’t stay at Gateway anymore and they had sent him to the psych ward of Mt Sinai hospital. He had been planning a suicide attempt. Much scrabbling and a many phone calls later I found a halfway house for him in Elgin. During this time I was driving to Chicago, and in Elgin every week to participate to support him and make sure he was receiving acceptable care.

During the two months at the halfway house he had three separate psych hospital admissions, all for voices and panic attacks. He was compliant with his medications by this time, but it’s a difficult thing to balance and it can take years to find an acceptable balance between effectiveness and acceptable level of side effects. Less than a week ago I got the call from the halfway house, he could no longer stay there and was being discharged within the hour. Graham has relapsed on marijuana and LSD. From there he found his way to what would be his 6^th or 7^th emergency psych hospital admission. After that admission I drove him to another Gateway residential rehab in Lake Villa. Six days into to that he was back in hospital, the voices were telling him to kill himself. After a day of negotiating Gateway agreed to take him back, and within 6hours of returning he was kicked out, this time for good, the voices had told him to harm his roommate. After this hospitalization I had no more ideas or resources. When he was discharged from hospital and they called to see who was picking him up I had to tell them no one was coming, to discharge him to the homeless shelter. While we was at the Lake County shelter I helped him apply for Medicaid and started the process for Social Security Disability (we got an official rejection letter before we even finished the first application). These could both be long processes. He went back into hospital last week and was supposed to have a bed in a state run rehab, but at the last minute they turned him down, and he was discharged once again into another homeless shelter.

In the last 3 years he has had at least 8 emergency room visits, 10 admissions to hospital – a couple of months total time, 1 ICU stay for 2 days, 4 separate outpatient treatment programs – totaling 16months, 3 residential programs totally, so far 4 months. You can imagine our insurance horrors and staggering bills we owe to many separate institutions. He has also been homeless and lived on the street or in various shelters. He has slept on the street, in people’s garden sheds and the occasional friend’s couch. The time at friend’s houses never lasts long, his behaviour makes it too difficult for people to accommodate him for long.

Graham has an illness. A chronic, debilitating, life threatening illness (and no, I’m not being dramatic, we have been to funerals for children with these diseases). Mental illness and addiction don’t have ribbon campaigns, there are no fun runs, no fundraisers where everyone feels good about helping out.

During the months and months of time he spent in hospital, during the last 2 ½ years of our life Graham received 2 cards – total. He had 2 visitors who were not family. During the months I had to leave my daughters to fend for themselves it felt like there was no support from our community. We were hurting, we were so very tired, and we were on our own.

I write a blog. Often I write about what living with a person with addiction and mental illness is like. I wrote about how no one brings you lasagna when your child is an addict. I write quite a bit actually because I am tired of the stigma and fear associated with these illnesses. If Graham had a medical illness with corresponding amounts of hospital admissions it would have been a different experience.

There have been acts of kindness and support which helped tremendously. A friend showed up one day with two books she thought I would enjoy, and batch of homemade cookies and then just hung out for an hour and chatted. A couple came by around Thanksgiving and raked my yard and brought us pumpkin pie. During the 11 months of driving to Downer’s Grove 4 times a week several church do gooders helped out with some of the driving. Some of Graham’s young adult friends from camp mailed him homemade cookies, and 2 even went through the multiple and inconvenient steps to spend an hour visiting with him while he was in Lindon Oaks for the last time. I will never forget these acts of kindness.

Some of the things that have not been helpful :

• ask if there is anything you can do, and then do nothing.
• ask if there is anything you can do, and not mean it a word of it.
• ask if there is anything you can do, and then gossip.
• ask if there is anything you can do while wearing a fake smile and (literally) walking away (body language – it’s not always subtle) – yes, this has happened, a few times.
• tell me “I did something right” because, at least, my girls are doing well.
•   If you think addiction or mental illness is a moral failing, that’s fine, it really is, but please, I don’t need to hear about it

What does help

·         Treat us like a family with an ill family member, we are going through many of the same things families of

people with cancer go through, except we also deal with the negative stigma associating with mental illness

·         be a benevolent witness to the grief and the pain, this doesn’t mean fixing anything, it just means bearing witness with compassion and without judgment.  And I do mean grief – I grieve for the healthy son I thought I had, for the life I thought he would have. The hopes and the dreams I had for him will never happen, they have been replaced with much smaller more basic hopes, like I hope he survives this, I hope he finds someway to be happy with his life.

Sue Monk Kidd has a passage in her latest book – the older sister who has resigned herself to never marrying is watching her younger sister get married. She describes the feeling like walking into an empty room that you forgot was there. In the room you had planned so many things, but now it is essentially empty. It’s not a room that you visit often, and you don’t dwell there when you do, but every now and then you find it, and you remember what you had hoped it would be. When I hear about or see Graham’s old friends, and his peers I step into that room. I see all the potential that’s gone, I see just how lost my boy is.

·         If nothing else, be kind to my girls, they are marvelous, courageous and loving people who should not have to go through any of this

These diseases have, on one hand, devastated our family, and on the other brought us closer and made us stronger. I have sat up countless nights curled up certain that I cannot bear this a moment longer, that I have nothing left to give, that I have done everything wrong, that my life and my children’s will never be normal, will never be without this pain. And yet, each morning I get up and go through another day.

Days that are for the most part, happy and are filled with love. What I have learned is just how resilient people can be, how even when faced with disappointment over and over again, we still find ways and things to hope for. I have learned that adversity and pain can make you softer and more compassionate.

Poetry gets me through some of this, this poem in particular by Oriah Mountain Dreamer

The Invitation

It doesn't interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life's betrayals or have become shrivelled and closed from fear of further pain.

I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, 'Yes.'

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

"I'm not young enough to know everything"

“It takes a long time to become young.” - Picasso

So, last night I was happily hanging out with my son watching Doctor Who, and ruining a perfectly good piece of watercolour paper with watercolours, when my phone beeped to say someone on facebook had messaged me. It was Fred - OMG.

this was the coolest think I'd ever seen

Alright, to understand my last sentence we have to go back 34years, to my high school years (I know what you're thinking, and yes, I was only 3 when I entered high school being an especially precocious child). It was the end of the seventies, I had, or tried to have, Farrah Fawcett hair, bell bottoms, toe socks and a red and blue Adias bag (see BNL "This is me in Grade 9"). We saw Saturday Night Fever, ET, and Jaws in a movie theatre, which was the only to see movies then, we listened to ABBA before Momma Mia was even thought of, and after school we watched the Brady Bunch and Gilligan's Island, me, on bright orange shag carpet in our hip basement family room.  We were groovy and we knew it, well, we tried. I tried very hard, and generally failed spectacularly. These days they have 'product' for thick wavy hair, in high school I had a hair drier that made my curls frizz and a curling iron that made them flip in different directions. The waists of my jeans was 3inches above my belly button, I wore Earth shoes and scoop neck t-shirts.

NOT how my hair looked

It was the best of times... wait, who am I kidding? My high school career was like walking a mine field. It was divided almost in half, grade 9 - grade 11 1/3 were in Dundas, Ontario at Parkside High School while I lived with my mom, brother and stepfather. Grade 11 1/3 - grade 13 (yes we had 5 years of high school) were spend at Port Arthur Collegiate Institute in Thunder Bay, Ontario while living with my father and step-mom. The circumstance of my changing  residential parents and locations is story I may one day write, but not here.

I started grade 9 in a Saturday Night Live inspired outfit that I can only cringe at the thought of now, and rejoice that my mother was not the type to take first day of school photos. I was shy, awkward, and not exactly popular. I had a small group of friends, and thanks to facebook have reconnected to many of them. I did well in school, but pretended I didn't in an attempt to be cool, it didn't work. I met my first ever boyfriend, Lance, who gave me my first ever kiss on my girlfriend's Jodi's front porch. That relationship didn't end gracefully, or more exactly it ended typically for 14year kids in high school who had no idea what they were doing. One of the amazing things about facebook is 30years later, Lance found me, and sent me a friend request. I was stunned, but curious, so I accepted. We exchanged polite bits of small talk, and then one day he sent me a message that was an apology for how he had acted after we broke up. I was now speechless - quite a feat. It was amazing how that letter brought up that old hurt (and all the new hurts that I had neatly stacked on top of it) and took it away. It shifted how I saw myself, in high school, and now. I don't know why he did it, but I am very grateful he did. Also, Lance it turned out, had grown up very handsome indeed, ah those wasted years!

It's funny what you hang on to from high school, perhaps it is because it is such a formative time of development. Who you are, where you fit in the world, and if you didn't thrive in high school, if it was a painful experience for you, it seems to stay a part of your psyche through adulthood. Maybe that's why reunions are such charged events.

Okay, now we can talk about OMG Fred. Fred was my first high school crush, He was tall, played basketball and I don't know, was just that perfect combination for teenage girl idolatry. About a year ago I saw that he was on facebook, and in a fit of bravery sent him a friend request - 30 years later, I was still that goofy teenage girl. I didn't know if he would even remember me. He accepted, we really didn't chat, but I got to peek at him as a grown up - still good looking, married with two boys, it looked like things had worked out well for him.

So, last night, phone beeps, facebook message, OMG Fred! I stared at my phone and open and closed my mouth much like a freshly caught fish does on a dock. I had the same glamorous reaction to Lance's letter, yeah, I'm classy like that - heaven help me if I ever get a shock and someone has a camera. Fred, my unrequited crush, the cool basketball player with the perfect hair that I oogled secretly from the bleachers during basketball games was chatting with me, with me. People who meet me now likely see a friendly outgoing person with non-frizzy not-Farrah-wanna-be-hair (this is after coffee, and application of hair product naturally), but the awkward teenager is still in there, the one who didn't think she was worth loving, or even worth liking.  So here's Fred saying he'd been in Naperville last year, and had he know I was here would have looked me up -- GACK! About this point my generally obtuse son actually noticed the odd sounds and facial expressions I was making and commented that my painting really wasn't that bad. Sweet boy, he made me tea. So what was I to do, thankfully Fred could not see my face, and had only "my trying to sound witty chat banter" to go on. We talked, his kids, my kids, marriages, Lance - whole other story there, life the universe and everything. After about an hour, and one cup of tea later I thought what the hell, and I typed the sentence - "you know I had a huge crush on you in high school" and waited for the world to end. It didn't and we actually talked about it - he was, as I suspected completely oblivious but very gracious - thank god. I ended up chatting with Fred for about 3hours, stayed up way too late on a work night, but I was smiling the whole time.

As an adult, who is raising three teenagers, I appear pretty together, I'm generally clean, remember to put on pants the right side out most days, and can speak with what sounds like general intelligence. Underneath this cunning exterior lives that teenage girl who pops up occasionally. She felt like she was too much trouble to love or to like, that she was inherently lacking in some very basic aspect that the rest of the world had and scorned her for not having. When you see yourself this way it is very easy to find confirmation. No matter how you see yourself, you will find something or someone to validate that - which is great if you think you're not too bad, but not so great if you think you are less than whole.

not us, but pretty close...

Then two months into grade 11, my mother decided she did want me living with her any longer so with a week's noticed packed me up and shipped me to Northern Ontario to live with my dad and his wife. I started at a smaller high school and was exotic for a period of time because I was from Southern Ontario and was about 2months ahead in music trends. This did not last, but by that time I starting drinking and smoking so I could fit in with the cool crowd in Thunder Bay. And here, I met Jim, my next high school crush that continued through the rest of high school, all through university and still lingers today. I look at my 17year old dairy entries - I could tell you Jim's highs and lows, outfits and comings and goings for that year, because that's basically all I wrote about. These diaries are very (VERY) carefully hidden, just in case any of my children are reading this. They say you regret not the things you do, but the things you do not do. My biggest life regret is not my failed marriage, not my present job, not my relationship with my mother, my biggest regret is not kissing Jim when I had the chance (at least I think I had the chance....). I still want to pound my head against the floor when I think about it. I had asked Jim to the girl's choice semi-formal, he had said yes, we had a great evening, he was a wonderful attentive date, we went to after parties and after all this fun I found myself sitting in Jim's car as he pulled into my dad's driveway, parked the car and pulled up the emergency brake and turned towards me. Here was my chance, and what did I do? I babbled, and flopped about spasmodically as I gathered my things and I raced out of that car like it was on fire. Yep, I panicked. I don't know for certain if Jim would have leaned over and kissed me, but I like to think he would have. As it was we stayed friends, he met this gorgeous Scottish girl and married her, and I married my husband, even invited Jim to the wedding (he couldn't come). Neither marriage lasted and I hear from friends he's as good looking as ever. If only he were on facebook....

my second high school, as it was

I've realized I had it in my head that things and people would remain static, no good reason why, and those friends of mine who stayed in the towns they went to school in and raised their children there may not have this notion because they could plainly see everyone growing and changing. Perhaps it is because I had to move so much that I took mental snapshots of the communities I was leaving and stored these static images as my memory of each place. Had I ever got to a high school reunion I might have had this notion soundly thumped out of my head, but alas, I've never been to one. Never had the opportunity to show people that in the end I turned out alright. It was a very bumpy journey at times, and I made many (many, many) mistakes, but in the end I managed to learn from most of them. At 48years old I am more comfortable in my own skin than I ever was in adolescence. At 16 I had a firm flat stomach and nice round perky breasts, long strong legs and arms, none of which had experienced pregnancies, breastfeeding babies, gaining and losing 50-60pounds with each, or had ever been in a violent car accident, or cut open with surgeries, and yet, it's in this body that has it's lumps, scars and wrinkles, roundness where I would prefer firmness that I am the most comfortable. Actually I'm probably in better shape than when I was 16 - because at 16 I was an expert and ditching gym and sneaking off to drink and smoke with my friends (not that I want any of MY kids doing that). Now I practice Yoga and Hapkido and have very defined arm and leg muscles - my abdomen is nearly flat, but is definitely lagging behind muscle tone wise.

So, here I am, older, wiser, with better hair and three teenagers. Not the future I had pictured for myself in high school, but it's a life I can live with. I don't know if I will ever marry again, I see myself on my own with dogs and horses and my kids visiting me, but if I've learned anything it's that I'm not usually the best judge of what will happen in my life.