Tag Archives: mental illness

hope is not enough

BY EMILY DICKINSON“Hope” is the thing with feathers -That perches in the soul -And sings the tune without the words -And never stops - at all -And sweetest - in the Gale - is heard -

There comes a day when you open to Hope, examine its feathers, begin to hear its song.

23843599_10214476329163299_5196544792506332245_nWhistling very quietly you make plans for him, and even for yourself. Not big plans, small plans like a Service Dog for him, and a divorce for you. The dog will ground him, and he will keep getting better. He will work, he will find stability and he will have times where he is happy. For you, it’s just a small hope, a little house, a little life of your own, a means to live this life you imagine.

The call comes, just as it always does. The call after the successful holiday visits, after your biggest worry was how to pay for a dog for him. Aside: you mistype dog as god and consider leaving the typo. Spoiler: you never get to figure the pay for it part out. The call after everyone has assumed that he is now Better and Everything Will Be Okay and are secretly so fucking relieved because having to keep hearing about his struggles was rather exhausting, and they would like the much easier task of thinking all is Just Grand now.

The call comes and he is unstable, he is very ill and he is back in a hospital. You’ve had this call dozens of time, you still whistle and hold Hope’s feather between your thumb and first finger.

Then silence. Silence for days and days and you don’t know where he is and no one is answering your messages. The silence perches in your stomach. The silence does know how to whistle.

The new call came this morning while you were drinking coffee. The new call included the phrases,

  • He needs another level of care and they’re not it. They had Been It for four years. You thought they would Be It when he got his dog (or typo god). You thought this is where he might feel happy because you know what really sucks? What REALLY SUCKS is being 22years old and struggling with a serious illness for the last 11 years. An illness that people judge and blame you and your family for. Nobody wants that.
  • He needs a  ‘Long-Term Therapeutic Living Community”  Info: 1. they are Capital E Expensive, but 2. You have good insurance! but 3. they have very long waiting lists. Aside: He has good insurance only for another few years under his dad’s plan.
  • We’ve practically been keeping him for free / We can’t adopt him / What did YOU think was going to happen to him long-term?! This is where you mention the dog, the work, the bit of happiness and feel foolish.
  • We don’t know what more we can do for him / This is the best he can manage / He isn’t going to get better than this.

He isn’t going to get better than this.

The feather is gone and you are trying desperately not to sound like someone who is sobbing into a couch pillow between mumbled replies.

Then you hear the voice that said to you years ago that if you ever tried to leave, to divorce that you would be destitute and live in a ‘rat infested shithole’ which is now somewhat funny because of the current news. Still, how can you possibly think of divorcing, taking money for your little house when your son will need it for the rest of his life. How can you think about yourself when you realize he will not get better and you will be in charge of him for the rest of your life. IMG_20171202_011100_116.jpg

ghost

IMG_5568

I love you

I got a call from a ghost today.

The call display said Montana, and  I almost didn’t answer, I don’t know anyone from Montana. The call was from a father that I didn’t know. A father that I will never meet. He told me his son was dead, and for a moment I had to think which dead son is this, which dead child is this about.

Then I understood.

This was Kevin’s father. Kevin who was dead. Kevin, the young man who made a small party my son’s first birthday in Arizona, far away from home. Kevin, who arranged for a decorated ice cream cake and twenty candles. Kevin who ordered pizzas with everything that Graham liked on them. Kevin who took pictures of Graham blowing out the candles and sent them to me because he knew how sad I was about not being there for his birthday. That Kevin who took care of my son when I could not. That Kevin who within six months of the party had relapsed, and shortly after had died.

I had sent his phone a text after he died. More of a prayer in text form. It read something like I’m so very sorry, and thank you. I was so sorry he had died, and still so grateful to him for taking care of my son. I sent it, and like a prayer, I never thought anyone would ever know about it.

I do understand that to his father when he finally got his dead son’s phone that my message would be a mystery. I imagine how many times he must of read it before he worked up the nerve to call me and ask just what I meant texting a dead person.

Today he called and we found out about each other, although we never even exchanged names. I told him that I was so sorry, that his son had been kind to mine, and kind to me, and how much that meant to me. I told him that my son was still alive and still clean and sober. I don’t know that was comforting or painful for him. I think it could be both. Maybe I should  have said in October my brother, John, and many years ago my father, Alan died of the same disease his son did. Maybe, but that’s not the same as a child. Nothing could be that.

He seemed content enough to have his mystery solved and we said goodbye, and then I sat there and cried for all of us, for those who have died, and for those of us who loved them. I cried, because there is nothing else I can do for Kevin, for John, for Alan, for any of the dead ones.

For the families and loved ones left behind, sorry is not ever going to be enough. Sorry can’t heal the kind of pain this is, but is all we can do. We say sorry and we then hold space for someone’s pain. We say sorry and we hold space in our words, in our actions, in our lives, and in our hearts for them. We let them feel their pain without judgement. We surround them in as much love as we can. This is what we do for the living,

because there is nothing more we can do for our dead.

not my first rodeo

IMG_7450This is not my first rodeo.

Not the first time I’ve received this call. Not the second, third, or fourth time either. I don’t know what number I’m on. Not the first psych hospital I’ve dealt with. Not the first time we’ve talked about suicide.

I do know there is always that part of me that exhales at the sensation of the sky finally falling. The, Ah, there it is! sensation that you couldn’t quite put your finger on until the phone call.  It’s not that I think about it all the time, I don’t, it’s just always there, hanging over me, just hanging around in the background, waiting. One moment it’s clear blue, and then the sun disappears, and purple-black clouds fill the sky, my skin gets cold, the wind picks up and I realize that they were always just at the edge of my vision, waiting. For what? It’s hard to say. Hope? For me to say “he’s doing well” a certain number of times, and to start to believe it?

The shift in me starts with the caller ID, I start to feel cold, to watch the sun disappear. As details and events become confirmed (confirmed, because part of me is always waiting for this call) I become still, focused, logical, organized, and pragmatic.I do what needs to be done. I call people, I email, I research, I take notes, lots of notes, notebooks full of names, places, numbers and details. I go through the check list, he’s alive, check, he’s safe, check, will he remain so long enough for me to sleep tonight?

I’m tired. Just really tired. Maybe repeated combinations of sad, afraid, anxious, pessimistic and optimistic eventually just register as tired. I do bits of the Kübler-Ross tango, but more quickly and with less intensity than before. Really I’m just tired. And no, generally I don’t want to talk about it.

Over the years we’ve let a lot of things go. When you talk about your kids and their accomplishments, their dreams and hopes I generally stay quiet. What could I possibly add? That our successes are measured on a much smaller scale. Is he alive? Is he safe? Does he have times where he feels happy? School, grades, girlfriends, cars, jobs, these are things that fell away.

What thou lovest well remains,
the rest is dross
What thou lov’st well shall not be reft from thee
What thou lov’st well is thy true heritage

– excerpt from Canto LXXXI by Ezra Pound

And so it is.

hindsight

I likely shouldn’t be writing this, I’m tired, am nursing a migraine, and am not wearing my glasses; god knows what spelling mistakes and poor choice wording options I will make, but here I go, because it’s been too long since I’ve put words to a page or screen. Last night was the senior class party at the high school. My youngest, much to my surprise, is a senior this year so I, being the plucky parent I am “volunteered” (it was “mandatory”) to set up on Friday, and work part of the evening Saturday. It’s a big, fat, hairy deal. Twenty three different themed rooms, food, food, food, blaring music, and of course 700ish teenagers making their way through the whole thing. From my spot, in the pool hall (yes we had pool tables, and hoops, and foosball – I told you, it was a big deal) I watched various groups of kids swarm in, out and about. For a while it was really interesting, seeing kids that I had first seen in grade 1, now with facial hair and/or makeup and a bit of swagger. For moments it was poignant, the kids who had self injury scars that showed just below their T-shirts, the kids that were obvious trying really hard to fit in, and for a while it was painful, when I would see that kid who reminded me of Graham. That smiling, awkward kid, with the baggy pants, the baseball cap, and the bit of over the top swagger and laugh that may have been a cover. When I would see that kid, my heart broke a little. Graham was too messed up to go to his senior party, I can’t remember the particulars, but it was not even a consideration.  Ironically, (maybe there’s a better word), he called me while I was there. And then I came across this video on Facebook this morning, and it did me in What started Graham down his troubled path, was kids hitting him up at school for his ADHD drugs. He had problems fitting in for years and years, and only recently I found out how badly he was bullied on the school bus, but selling his ADHD meds was the way he found to fit in, to not be that outcast, to make “friends”.  If you read this blog, you know where this lead him. So the video. In the video I saw all the places I could have done more, should have known sooner, should have tried harder, defended him more, but truth be told, I really had no idea really, what he was going through. Hindsight. He is doing better than ever now. Nine months clean and sober, and the meds he takes seem to have brought the unbearable mental battleground in his head under control, but it’s a long hard road. He recently was bullied at the place he stays, and put up with it for way too long, told no one, because that’s the only way he had learned to deal with it. Thankfully it was addressed, the aggressor removed and Graham is now being taught how to advocate for himself, five (at least) hell filled years after he was first bullied in school. When they told me about it, I wanted to say, hey, I really tried to teach him that, really. I did, and I had counselors, countless social workers, guidance counselors, psychiatrists, psychologists, life coaches, tutors, addiction therapists, group therapists, martial arts instructors, peer groups, even a neuro-psychiatrist to help me, but it was not enough. I wanted them to know that I wasn’t that parent who buried their head in the sand, that I tried with everything I had to help him. That the times I sent him out and let him live homeless ripped out a piece of my heart that will not heal. That I look into the eyes of every homeless person I see so I can see what my son endured. That I read every day about the deaths, and the agonies that addicts and their families endure and remember what it was like, and feel so very, very lucky that my son is still alive. I wanted to say all of this, but I let it go, and talked about where he is now, but it still sits in my head, and in my heart. What could I have done better? differently? What did I do that made it worse? Could I have prevented this? I know the answer. No., I could not have prevented it. I know this in my head. I know I am far more fortunate than so many of the families I still am in contact with. I know this.  My heart still hurts when I see these wounded kids. I know I’ve put this up before, but if you have the time, it’s worth watching again

there goes my hero

Graham 2

“There goes my hero, … Foo Fighters

“The mind of an addict is cunning enough to convince the body that it is not dying” – Michael Lee

The mind of the addict.

Sometimes I miss him so much it is physically painful. It comes when I am thinking of other things, and then it hits, and I can’t imagine how I could ever not be thinking about him. Like tonight when I was shopping at Walgreen’s and I remember the time I took him shopping for basics while he was living at the homeless shelter. I wrote about that here.

He is on Step 4. Three and a half years into this hell, and he made it to Step 4. I talked to him last week and I actually heard my son, not the addict, not the mental illness, but my son, my beautiful, funny, loving boy, I talked to him. He is working so hard, so very hard. He is clean and he is sober (four months now), but the psychosis is hanging on with a tenacity that has not let up, not even for a moment. Until now he could not cope with it without drugs.Without finding someway to escape the voices in his head, voices caused by biochemical imbalances in his brain. He is coping with the chemical imbalances in his brain chemistry clean and sober, that alone is heroic. But it is not enough yet.

If the biochemical imbalances manifested themselves as cancer, or organ malfunction in his body this would be an entirely different story I’d be writing. People would see the battles he’s faced. As heartbreaking as Robin William’s death was, it put a real face to how deadly mental illness can be, and he (Robin Williams) did everything he was suppose to, he was clean and sober, he took his medication, he saw a psychiatrist, and it still killed him. People don’t want to believe that mental illness is as debilitating as physical illness. It’s so much easier to stigmatize someone with a mental illness, so much safer, so you can find reasons why it could never happen to you, or people you love.  In a Mental Health First Aid class I recently took I learned that severe depression is as debilitating as quadriplegia – as quadriplegia. No one told Christopher Reeves to suck it up, and just get over being paralysed. He was seen as a hero for coping with such an overwhelming disability with grace and courage.  Robin Williams was no less a hero. People who overcome addictions and other mental illnesses are as deserving of the praise, love and support we give to cancer survivors. People in recovery need as much love and support as those undergoing major medical treatments. All are heros.

When we talked I told him how proud I was of him, and encouraged him to keep moving forward. He still has so much to overcome, so much work to do, and there are no guarantees that he will ever be well.

A friend of mine sent me this article. I am that quiet mom who doesn’t say much when people brag about the accomplishments of their teenage and young adult children. My son is never going to Princeton, he will not go to graduate school, he is likely not going to do most of the things I hear other parents bragging about, he may never be able to live independently. But he IS clean, and he IS sober, and he is working as hard as any honour roll student, as hard has any top athlete, and I am just as proud as other parents whose kids are in Princeton, on Varsity teams, whose kids are doing wonderful, exciting and accomplished things. I just don’t talk to many people about it.

He is using the support network he has to deal with the terrifying psychotic episodes directly. He is taking his meds. He is doing everything he is suppose to do. He is trying so hard, and it still holds him by the throat. He is on his umptenth medication combination to help his mind become more balanced, and stable enough so he can continue to recover. It may not be enough. He had to leave the wonderful place he had been staying in for the last 2 months and  in to go back into a “higher level of care” to get his medications and episodes stabilized.  I haven’t heard from him, or anyone since the transfer last week.

I look at the sky, and try to decide if this is colour it turns in the moments before it falls. (modified from Shane Koyczan’s To This Day Poem).

I don’t know how this turns out. I don’t know if he will get well. I don’t know if I will ever see my beautiful boy again, or if this disease will take him from me completely.

So sometimes when I am doing other things all this comes rushing back to me. The last few years that when I look back on them, I cannot imagine how we lived through them.

Michael Lee is a performance poet and a recovering addict and alcoholic. I listen to this poem a lot.

I miss my son. I pray that this is not the colour the sky turns in the moments before it falls.

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.