2014 in review

I should probably post more – like the three essays that are still sitting in my journal – yep, getting on that…. thanks for the love and support 🙂

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 3,000 times in 2014. If it were a cable car, it would take about 50 trips to carry that many people.

Click here to see the complete report.

inspiration

and sometimes
when I would be doing other things,
I write words inside my head.

I write words for you as I inhale,
words for you as I exhale.

I write because of your warm hand, the way it felt on my shoulder
I write so I do not close my eyes, and lean back into that comfort
I write so I can leave without reassurances.

I write the words so they brush lightly across the page, touching sightly; I write til I can lean into their comfort.
till the rasping of my pen on this page calms me
till the blank space is filled with words
and within words, I can relax.

you, as I inhale
you, as I exhale

and if
I write for long enough, I will not want to
lean back and rest against your body,
place my head by your neck, close my eyes and breathe.

instead
I lean into words, into the rasping of pen on paper, into the large letters curving across my page
here, in these words, I rest and close my eyes.

 

But then begins a journey in my head

me with quote

The Irreconcilable Differences between Mind and Body had become so profound
they were heard in the Court of Judicium. The usual reserved Attendants
were appalled at the excess of emotion and were given to making small ‘tsk
tsk’ sounds behind handkerchiefs and fans whilst disapproving eyes squinted
down at the proceedings.

Mens Mentis represented Mind, Corpus represented Body.

Mens Mentis presented an extensive past history of failures to illustrate
the likelihood of the present endeavor ending in heartbreak and
humiliation. An impressive parade of witnesses came forward to give
evidence to support the case. One spoke of stretch marks, belly fat, and
sagging breasts, another of age and foolishness, and yet another spoke with
passion about the need for caution and restraint in all affairs..

klimt danaeCorpus, not to be out done presented extensive physical evidence, stomach
sitting too high in chest, heart becoming larger, beating more quickly and
thus increasing blood flow, of the increased occurrence of deep breaths
with extended exhales, the memory of skin on skin, and the presence of a
hopeful smile. All these events occurred despite the extensive evidence
presented by Mens Mentis, argued Corpus, and therefore must be given more
weight.

Mens Mentis moved to strike from the record any memories because they
occurred within the Mind and not the Body.

Corpus then moved to strike all memories of past failures because they did
not occur in the Body.

Both motions were overruled by the Most Honourable Judge Iudex, stating
that both motions included events that could not be solely related to
either Mind or Body, and thus where considered Joint Property.

The proceedings have been going on for weeks, at times it appeared the Mind
would prevail, but then events would occur and body of Body’s evidence
became increasingly stronger. Each time this happened, Mens Mentis would
argue that Body was incompetent to stand trail and should be removed and
placed in protective custody. The Most Honourable Judge Iudex has, so far,
overruled each of these objections, but the talk among the Attendants is
that with the passage of time and without fresh physical evidence
(memories, everyone knows, after a time become increasingly unreliable)
that the Judge will rule in favour of the Mind.

Meanwhile the jury continues to absorb the proceedings with passionless
expressions.

It’s four o’clock in the morning, Damn it*

stl0006_20010216At four o’clock this morning I’d been asleep for 5 hours.

Today I took him to the airport.

Four nights ago I drove him to the hospital with an empty bottle in my pocket. Four nights ago I was already in my pajamas and wanted only to go to bed and to sleep, when he showed me what he’d taken. Four nights ago he said he reached his bottom and was ready to recover, but that’s not why I took him to the hospital.

I was not sitting in the ER once again, with my son hooked up to monitors because of the street drugs he had been relapsing on for weeks.  I wasn’t there because of the altered state he went into the previous week during his birthday dinner, in the nice restaurant, surrounded by nice families. The altered state that was caused because he had stopped taking his prescribed medicine two weeks ago. I was in the ER because of cough syrup. Cough syrup he’d been drinking by the bottle, cough syrup that contained Tylenol. I took him to the hospital when I realized he’d been taking massive doses of Tylenol unintentionally with the cough syrup,  because a Tylenol overdose doesn’t kill you right away, it kills your liver and your kidneys first, and it does it slowly.

So I sat there, dead tired, not because of heroin, or cocaine, but because of Tylenol. I sat there while a nurse roughly scrubbed down his arm and called him “dirty”, while she told him was going to die, while she rammed an IV needle in his arm, intentionally causing him pain. He bore it quietly. Her harsh words and her painful treatment of him. I bore it too, even while a part of brain was saying how wrong it was.

They keep the curtains open in cases of overdose, they also take all your clothing and belongings to make sure you don’t try to sneak out before your mental health is properly assessed.

This boy. This boy that the angry nurse purposely hurt. This boy used to bring me dandelion bouquets, used to sit for hours on my lap while I read him story after story, this boy who always tried so hard to fit in. This beautiful boy was still there in the hospital bed, with the sore arm, with all his belongings taken away. My little boy, who I could still occasionally glimpse in a gesture, in an expression, he was still in there.My boy, who’s brain chemistry has worked against him for the last ten years was still there, still trying. He has been fighting against a mind that contains beasts and horrors and realities only he can see. A mind, that when he became overwhelmed with its noise, he tried to quiet with drugs, and they worked. The drugs settled his mind, the drugs helped him make friends, let him feel like he belonged and was accepted. How can you blame him? He was 15, and his brain worked in ways that none of us could comprehend.

I saw that he was in pain, and I tried to fix it. I tried everything I could think of, sports, clubs, mentors, social workers, doctors, life coaches, tutors, psychiatrists, psychologists, peer groups, retreats, camps. I tried, but none of these worked as well as drugs and so the drugs won. I lost my boy by degrees, and he became the kind of patient a nurse thinks it’s okay to shame and to hurt. He became someone I didn’t know anymore. He became the young man in the hospital bed before me.

I stayed till 3:30am. I stayed while another mental health assessment was done. I stayed till I knew he would be safe and survive the night, and then I went home. It was 4am when I pulled into my driveway, when I slowly got out of my car and started walking through garden to my front door. It was 4am when I noticed the songs of the night birds, and while I’d would have rather have done anything but spend a night in hospital with my drug addled son, the bird songs, an owl hoot, and my dog waiting up for me were comforting.

He was in hospital for four days. Four days that I spent negotiating with insurance, four days trying to find him something, someone, somewhere to help him. Four days crying in my car where no one could see me, four days asking for help, four days not sleeping or eating enough, and this morning I drove him to the airport.

Today he flew across the country to a residential treatment center in California called Michael’s House. He says it’s incredibly beautiful there. They’ve taken his phone now, and I won’t be able to talk to him for 7 days, but he seemed hopeful and happy tonight, so I will hold on to that.

 *Lyrics by Bernie Taupin from “Someone Saved My Life Tonight”

instructions for mothering an addict

 

Alex Colville, 1954 Horse and Train

Alex Colville, 1954 Horse and Train

  • pray often. whatever that means to you
  • try to get enough sleep, even though usually you won’t
  • put your own oxygen mask on first, you cannot help anyone if you fall apart
  • don’t give up. never, never, never give up. don’t give up especially when that’s all you want to do
  • learn to ask for help, and then learn to accept offers of help
  • keep living your own life, try not to feel guilty about the times you do things you enjoy
  • when it feels as if the world is crashing down on and around you, take one small step, then pick another small step and keep inching forward no matter how difficult
  • try not to be angry with people who do not behave as you would like them to. they are doing their best, and sometimes their best is not what you wish it would be
  • tell him you love him each and every time you talk to him. especially when you are frustrated and don’t want to. tell him you love him because life is short and uncertain and you never know if it will be the last time you will talk to him
  • do not curl up into a ball and give up, even though the heartbreak and the stress is more than you think you can bear. Bear it, if not for yourself, then for him, for you other children.
  • only let a select few see the pain you’re in, do not fall apart in public, cry when you’re alone in your car, in your bed, when no is there. the rawness will overwhelm most people and they will back away
  • do occasionally bring his clothes home, wash them, dry them and fold them, do not think about how you used to do this when he was a little boy
  • remember all the reasons for not letting him live with you, the relapses, the broken promises, the unbearable behaviour. remember these when all you want to do is wrap your arms around him and bring him home
  • do not listen to the song Bring Him Home unless you are alone so no one will see you cry
  • when you pick him up at the shelter, do not dwell on the dilapidated building, the sorrowful residents. sit with him in tiny hallway where tired mothers carry crying children, sit there till it is his turn to apply for medicaid
  • take him to pick up his antipsychotic medications, and while you’re there get him toothpaste, another toothbrush, sunscreen and antiperspirant. say yes when he asks if he can have gum when you are in the check out line
  • give him the money so he can take you out to lunch for mother’s day. order extra food and give him the take out containers to take with him. thank him for lunch.
  • buy him clean clothes from time to time and throw out the ones he’s been wearing for two weeks straight
  • do not picture him on the shelter floor on a thin pad while you are on your comfortable couch, or your warm and safe bed. thinking of this will only eat you from the inside out
  • when the enormity of what you have to manage becomes too much, it’s okay to put your head down on your desk and close your eyes, but you must lift it back up again and keep going
  • when he asks to come home, say no, even though your chest aches, and your eyes are filling with tears, say no, and tell him you love him.

about that homeless, mentally ill, and intoxicated man

Aside

Homeless Jesus by Timothy Schmallz

Homeless Jesus by Timothy Schmallz

Dear Well Intentioned Friend,

I know your intentions were not unkind when we talked the other day. I’m certain you had no idea the affect your story would have on me, and I’m somewhat ashamed I didn’t speak up more clearly at the time.

homelessOkay, here’s the thing. Your story? About your daughter’s dance class being threatened by a lone homeless man, the one where the instructors bravely hid all the girls (who ‘were practically dressed in bikinis’) in the locker room to protect them? The story where the lone homeless man who may have been intoxicated, who likely was mentally ill  (spoken with your voice lowered), had come into the lounge near the studio and sat down to watch the tv, you remember? Do you remember telling me how horrified you were, what danger these girls were in. Do you remember when you first described the man that I said, poor thing, he was probably just looking somewhere safe to rest?

Here are some things I didn’t tell you. I have worked with homeless people for the last ten years. Yes, many are mentally ill, many are alcoholic or addicts or both. All of them suffer greatly. All of them are human beings, who love and are loved by someone. I didn’t point out that mental illness and substance abuse are medical illnesses, just like cancer, or diabetics. I also didn’t mention the reason many of them are homeless is because of inadequate resources to treat these disorders,and the tremendous negative stigma that goes along with being homeless, with being an alcoholic, with being an addict.

At one point while you were describing in great detail how horrifying and dangerous this man was, I did manage to quietly say, just like my son. I don’t think you caught my meaning. I don’t think you understood that what I was saying was that my son is homeless, that my son is mentally ill, that my son is an addict, that my son has curled up in all sorts of places trying to get some sleep, some comfort. I don’t think you realized that while you talked about saving these girls from this threat, all I could see is the countless cruelties that the homeless, mentally ill suffer, that my son suffers. The diseases themselves and the heartbreak they cause to families are bad enough, but the stigma that well intentioned people attach to them and then use as a justification to treat them badly, as something less than human, and something not worth compassion, or love or comfort, the stigma is the worst of it all.

Change mentally ill to someone with cancer, with diabetics, suddenly it seems horrifying that someone suffering from cancer, or uncontrolled diabetes would be ostracized, would be seen as a threat to children.

Eventually all I could see was someone treating my son with the horror and disdain you very eloquently described, all I could see was the pain and the humiliation he has suffered. All I could see was my little boy being threatened, and there was nothing, absolutely nothing I could do to save him. All I could feel was all the pain and the heartbreak of the last several years as I fought to keep my son sane, sober and safe. You see, my well intentioned friend, I too am a mother, a very protective one, and I do understand the overwhelming desire to protect my children. My daughters took dance when they were young, I did my time sitting in studios, going to recitals, I do understand that part, to this day I would do anything to keep them safe. I also love my son with the same intensity, and I have done, and still do everything I can to protect him. Sadly with his disease part of doing what’s best for him and my daughters is to let him hit a bottom so he can hopefully one day come back to me.

I couldn’t tell you any of this. All I could do was to cover my face to hide the tears and run away. When I got to my car I sat for a very long while until I stopped crying and could drive home.

The other thing I didn’t tell you is what I may have in common with the homeless man, I’m an alcoholic. I was raised by one and am related to several. The disease runs rampant in my family. I’ve been told to say I’m a person in long term recovery, meaning I’m sober and have been so for quite some time. I don’t generally tell people this, because unlike, say cancer survivors, there aren’t any coloured ribbons, or fun walks for alcoholics or addicts, even the clean and sober ones. People don’t look at you as someone who has fought – and remains constantly vigilant – against a chronic and deadly illness, and survived, people see a drunk, an addict, someone who has a flaw in their moral character, someone who cant’ be trusted, someone you can’t leave your children with (yes, I have been at the receiving end of all these attitudes) people look at you as something that is less than normal people. That’s why I don’t generally share that about myself. That is also why when you told me about the homeless man the first thing I felt was empathy for him, and the pain he must feel at fear and loathing that he experienced in your daughter’s dance studio, and likely just about everywhere else he goes.

I didn’t tell you any of this, because these things are usually too raw for me to say out loud. These things have brought judgement and negative stigma on me and my family, and some days I’m just not up to saying out loud that this is wrong. This is so very wrong. That it is not okay to view people as less than. No is less than anyone else. I think if people could get that straight in their heads the world could be a more compassionate and beautiful place.

So, maybe, next time you see a homeless person, someone who is mentally ill, intoxicated,maybe, you could let some compassion enter your viewpoint, and not let fear guide your thinking and actions, maybe you could lead with kindness and compassion, just a little at first. Or maybe you could, just for a moment, reexamine the way you view the homeless, the mentally ill, the addicted, the alcoholic. Maybe that could be a start.

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 5th 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 6th or 7th 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 also helps, 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.

 

 

just in case you forgot he is a person

 

 

instructions for a bad day

Image

Love my suffering? I’m not sure I’m quite up to that yet. Today has not been a bad day, it’s just a day, like any other that came with it’s own challenges and it’s own frustrations. It includes people not behaving in ways I think they should, doing things that I don’t like. It has me suffering from the attachments I made to specific outcomes, to ‘things and people as they should be – according to me”. It involves setbacks, my own and other’s. It has me spending a tremendous amount of time and energy on things I’d rather not be doing.

In other words, it’s just a day.

Look To This Day

Look to this day:
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence.
The bliss of growth,
The glory of action,
The splendour of achievement
Are but experiences of time.

For yesterday is but a dream
And tomorrow is only a vision;
And today well-lived, makes
Yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well therefore to this day;
Such is the salutation to the ever-new dawn!

– Kalidasa

It’s just a day, and in the end I get to choose how it affects me. That’s pretty much the sum total of what I can control today, and everyday. I can see what is beautiful, even in – especially in, the midst of suffering. “The bliss of growth, the glory of action” it’s all here, even when I don’t (won’t) see it. There is always more love, I may not always notice, but there it’s always there.

So today, the world is not as I would want it, so I will sit and drink my coffee slowly. I will eat small bites of very dark chocolate, letting it’s bitter-sweetness melt on my tongue. I will make a bowl of calorie laden macaroni and cheese and pour lots of hot sauce on it, and eat it cross legged on the carpet in front of the fire. I will read poetry from worn out and well loved books. I will talk to my dog about the bird-feeder and the state of the snow covered garden, and he will wag his tail and tilt his head to the side to show me that this too is fascinating and important to him. Later I may even tell him about my worries and my fears, and this he will take sagely and without judgement. Today I will think of my lover’s strong and safe arms, and I will close my eyes and rest my head and my heart there.

“There will be bad days.

Be calm.

Loosen your grip, opening each palm,

slowly now – let go.”

I’ll tell you what I want, what I really really want,

Well I never thought I’d be quoting the Spice Girls, but it is a catchy little phrase don’t you think?

What do I really, really want? Well the easy, somewhat entertaining and glib answer is Viggo on a horse, or to win the lottery, to have six pack abs, for my hair to calm, the-fuck, down, for hunky firemen to come to my bidding,  a really good massage, a clean house, my own studio with a ocean view….

Okay, how about a life? A life would be good. A life where I get to do things for myself and put all those grand plans of mine into action. A life where I don’t bounce from one crisis to another. A life that has some security, financial and emotional.

and Viggo on a horse – of course

What I want is something safe, and strong and solid. I want a shoulder that I can put my head on when this crazy life of mine is out of control. I don’t want to be rescued, not really (although… firemen….) I do want something that feels safe.

ImageI feel like a Matryoshka Doll. Layer after layer of a hard wooden, brightly painted shell each covering another inside it with a firm, smooth and solid layer. The biggest with a smile permanently painted on. Life gets difficult? Snap! On goes another smooth, hard, smiling outer layer. People are unkind? Pop, pop on goes a couple of smiling layers. When I’m alone, and rarely even then, that I think about taking off a layer or two, looking at the small doll at the center.

“Beauty comes in many forms–and there is no form more beautiful than you. Just exactly as you are, this minute, right now, without changing a thing…you are beautiful. Beautiful enough to take God’s breath away. You do believe this, don’t you? Oh, you must. You must. How can I believe in my beauty if you don’t believe in yours?” ~ Neale Donald Walsch

Isn’t that great? I need to have it tattooed on my forearm.

Oh god, I’m rambling.

I grew up learning to gauge other’s emotions and adjust my behaviour accordingly. I hid my own feelings for so long I hardly recognize them. I was told, and believed, that no matter what I did, whatever path I would follow I would never be acceptable. I could twist, conform and mold myself to make others like me, but really, it would never work, and eventually people would reject me. I wore masks, layer after layer of hard, resilient masks, all nesting over another. What I wanted, who I was, what I was passionate about disappeared under the layers.

“The most important kind of freedom is to be what you really are. You trade in your reality for a role. You trade in your sense for an act. You give up your ability to feel, and in exchange, put on a mask. There can’t be any large-scale revolution until there’s a personal revolution, on an individual level. It’s got to happen inside first.” ~ Jim Morrison

Inside. Way inside there is that little doll, but the light is dimmed from all the other layers and it’s difficult to see, to feel what she really wants. It’s easier to retreat inside, to not do the work needed to live without the safe, nesting layers. It’s never convenient to do this, there are always more reasons to stay where you are, to stay within the boundaries and roles that have been assigned to you.

Despite this. Despite the layers we all wear, and the roles we all are assigned, despite all of this, we are only meant to be ourselves, that’s all. We, in theory, have the ability to release the pain, to remove the masks and to look into the darker parts of ourselves.

Those who will not slip beneath the surface of the well of grief,
turning downward through its dark waters
to a place we cannot breathe.

Will never know the secret water
from which we drink, cold and clear,
nor find in the darkness, glimmering–
the small, round coins
thrown away by those who wished for something else

– David Whyte

We have been raised to ignore the dark parts of ourselves, the parts about us we don’t like, the parts that we would like to pretend don’t exist. We want the world to see only what is good in us, only the bright shiny outer layer. Except that’s only part of us. The dark and hidden parts, the shattered and broken parts, the really ugly and shameful parts are as important as the bright, shiny and happy parts. Perhaps more important. If you’ve never suffered, you can’t know empathy. A broken heart is more open, feels more, is better able to love.

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.”   – Leonard Cohen

So what do I want? The same as everyone else, I suppose. I want to be happy, to be free from suffering. How likely is this? That depends I suppose on how attached I get to certain desires (cough! Viggo! horse!!), and how open I am to accept and appreciate what I already have. So in the end, I’m okay if Viggo doesn’t show up on horseback, and the firemen don’t show up shirtless looking to rescue me. Well.. mostly okay. I think actually I’m okay with where I am right now. I may even like myself a little more, and maybe I’ll take off a couple of those Matryoshka Doll layers and get to know better the not so shiny and slightly cracked and broken parts of myself, because that is where the light gets in.