Life with addiction, mental illness and stigma

DUUC Editor's Note: Our fellow congregant,Ruth Elliott, has graciously shared with us her family's journey of addiction, mental illness and facing the stigma that goes with each. Ruth previously shared this story with our congregation and we appreciate her sharing it again here.

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 colors 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.