JORD watch giveaway

JORD watch
While I was sick I had to quit a lot of gigs. I left design teams, I returned products and money for posts I’d agreed to write, there were a whole lot of opportunities I had to let go of in order to get healthy. That’s hard on a whole number of levels. It’s hard to have your work suffer, it’s hard to feel like you’re burning bridges or letting people down, it’s hard to admit your limitations. Everyone was nice and understanding, but there was one company that went so far above and beyond that I have to brag about them at the same time I brag about their product.

Months ago, like maybe around Mother’s Day, the folks at JORD watches approached me about reviewing their product and hosting a giveaway. I went through my usual screening process, checking what the corporate values were, if the product was sustainable, and of course, whether I would actually spend my own money on the product. JORD is committed to using sustainable resources in the sourcing of their products, and when I first started learning about them they had just released a special watch design with proceedes going to the Pujols Family Foundation, a charity dedicated to those living with Down Syndrome and those in poverty in the Dominican Republic. The watches passed all my tests so I asked them to send me one that I could try out.

For real – it is indescribably gorgeous.

I love it. I truly love it. Wood is such a beautiful material that I love having something so fine to celebrate it. It’s not cold and it doesn’t trap my arm hairs like a metal band, but it also doesn’t sweat like a leather band. I wore this throughout a sweaty summer and felt just fine. It’s surprisingly light, and it’s so unique I get comments every time I wear it. It’s the best thing I’ve gotten in ages.


So even if all that happened was that I got a beautiful new watch I was totally besotted with and recommended it to you guys, it would be a successful partnership. But how the marketing manager I worked with treated me was what bumped this up from a post about showing off something pretty to an unqualified rave.

Like I said, everyone was nice. All the corporations wished me a speedy recovery, they all held doors open for me to come back, everyone was understanding and supportive. But they also have a job to do, so most of them went for the quickest resolution to our relationships. One company emailed me several times a week to make sure that we settled on square terms – not really easy for me to deal with when my health was such a concern, but never rude or unwarranted. JORD, however, just sent me support and well wishes and told me to take my time, they’d check back in around the holidays. They never suggested that I send the watch back – which would have broken my heart but they would have been well within their rights to do it. I never got an email that didn’t first address their support and concern for me, and by the way, could I just give them a timeline, and also, if they could do anything to help me they would.

I’ve worked corporate marketing jobs, so I know that one individual nice person can only go so far. That nice person has bosses with their own timelines and agendas. They want to know how their marketing budget is working out, where to put their future marketing dollars, and see some return on their investment. The fact that they set all that to the side, along with the concern that I’d never fulfill my agreement to them and just keep the watch with no marketing at all, meant that they prioritized respect for people over their business agenda.

How rarely does that happen?! As major chains make their employees come in on Thanksgiving, it’s getting harder and harder to find companies that make you feel like you’re putting your money in a good place. I’m so happy to recommend a company that makes a beautiful product made by good people.

wooden watch
And you can have one too! JORD has earmarked another of these beauties to give to one of my readers. Just leave a comment and I’ll pick a random winner on Black Friday. Good luck!

**Disclaimer** JORD gave me a watch to try but all thoughts and pictures and opinions are my own.

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Developments for Atticus

AtticusCan

In keeping with this crappy year, I am not the only member of our family facing medical problems. For Atti’s whole life we’ve been watching his hips to see if they would be damaged by the tight spasticity of his muscles, and that time has come. His hamstrings are so tight that they’ve pulled one of his hips out of its socket. It’s so far out you can actually tell by looking at him when he’s crawling around pantsless. It’s like his own muscles are drawing and quartering him. Sorry. Gruesome, but you get the idea.

Eventually Atti will need a total hip reconstruction. But before that can happen they need to get the spasticity under control. It wouldn’t do to reconstruct his hip only to have the muscles pull it right back out of socket again. We did a test last month for a muscle relaxant for him and it went really well, so later this week we’ll have a final consult about what the plan will be before having a surgery to implant a pump into his abdomen.

The Baclofen pump works in the same way as an insulin pump. It’s implanted in the abdomen, just under the skin, with the medicine going into the spinal cord to avoid the side effects you’d get if the medicine went to the brain in large doses. The dosage is fine-tuned to get the best results for each patient, and more medicine is filled by injecting through the skin into portals in the device. I’ve heard all the miracle stories, and during the trial it was obvious that Atti was relieved from discomfort and pain he lives with as part of his normal. It’s all going to be a good thing.

And yet, this is grieving me like nothing else. The thought of him having this hockey puck sized protrusion from his sweet little tummy… the thought that it might hurt him if we play Bongo Belly like we have his whole life…his sweet smooth little belly scarred up…I’m just so deeply sad.

It’s kind of arbitrary the stuff that really gets to us. He’s had so so many surgeries. He has scars, he uses devices other kids don’t, he’s already “different”, but braces and scars never bothered me before. I don’t know why this one makes me so sad. I have scars on my face, on my feet, and a giant one on my own belly courtesy of Atticus himself, and I never even think of them. It’s part of being a human and they don’t trouble me in the slightest. But I guess this is the straw on the camels back. I’ve been brave and pragmatic about everything else. This one I’m just going to face weeping.

Compounding my grief about the implant is the knowledge that we are running out of time. His entourage always used to talk about his future with the worst case scenario being “IF” he doesn’t leave the chair. It was expected he would walk, anticipated, planned for. Now I’ve seen them all subtly shift to “IF” he walks. It’s still something we’re hoping for, working towards, but it’s become the long-shot. I tell the doctors and nurses and therapists that he’ll be seven in February and universally their faces fall as they cast worried glances at each other, wondering if they’re going to have to break me the news. They don’t. I understand. 8 years old is the benchmark. After that the pre-pubescent changes begin and there’s no keeping up with them. His growth plates are closing, and so is our window.

Living a whole life in a wheelchair is hardly the worst thing that could happen. With more wounded veterans in wheelchairs, maybe by the time Atti is grown there will be more accessibility, or even new devices. My Father-in-law is always talking about how one day they’ll implant microchips in our brains and disability will be a thing of the past. It cracks me up, but he’s not crazy. If Atti had been born ten years earlier he and I would both be dead, so who knows what developments will occur in between now and his independent adulthood.

But still. It’s hard to let go of dreams. It’s hard to let go of that vision in your head of your child in a jersey or on the track. To accept the fact that life will be harder for him. There will be places that will be inaccessible. That he will know pain and have his body scarred. But all those things have been true for me and I wouldn’t trade my life with anyone. In the future maybe he’ll have a microchip in his brain, maybe he’ll have one of those walking exoskeletons, maybe he’ll be part cyborg. I really don’t care as long as he gets to have the fulfilling, independent life that is my heart’s true dream for him. This surgery is the next step there.

Both to independence, and to being part cyborg.

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Here comes the sun

SunThroughClouds

Hiya friends. So, it’s been a little while.

I have gotten so many wonderful loving emails and FB messages and blog and youtube and instagram comments, you guys mean the world to me. Truly. Thank you for thinking of me and reaching out and caring.

This has been a really really really rough year. Which means it was the best possible time to go on massive fertility drugs. I’ve been on Lupron three times before without incident, but this time, hoo boy. Was quite different. For the last five months I’ve been spending all my energy on trying not to kill myself. I know that sounds so dramatic and shocking, but it was. And I feel the need to speak it plain like that because when I would ask for help people would often blink at me, terrified. No one knows what to say or how to help other than, “Please don’t do it.” But I didn’t *want* to do it, my brain was trying to kill me.

After five months of white knuckling, relying too much on stressed out terrified friends and family, and finally finding a psychiatrist in my area, I ended up starting an outpatient psychiatric program. For six weeks, five days a week, six hours a day I would sit in classes and group therapy while my meds were tweaked and reactions monitored. It really did save my life, because you know when you watch those pharmaceutical commercials and they talk about the huge list of problems it causes including thoughts of suicide and you think, woh, the cure sounds worse than the disease. That was true.

For some reason, this time on the Lupron I went into the deepest, darkest depression I’ve ever known. I was tortured with thoughts of needing – not wanting, I did not want it – to die. I would hold Atticus as long as he would let me and cry and cry and promise that I was going to be brave like him. I would move from the bed to the couch to the bed and count it as a good day because I made it through. My psychiatrist put me on some new medications, and day by day as I got further away from the drug that so affected me, I clawed my way out of that depression with a teaspoon. Slowly, slowly, slowly, I got better as the last Lupron shot ran its course. And as I got better we lowered the medications again until now I’m back where I started from.

Med changes are always hard. For a person with Bipolar Disorder the reactions can be unpredictable. Obviously, since three previous times on Lupron were a cakewalk and this time things all went kerflooey. It was really invaluable to have structure, support, professionals, and peers to rely on while the medications did their thing and we figured out what my brain needed to stop trying to end me. Turns out, it needed to not be on Lupron.

Before I go on, I don’t want to scare anyone. Lupron has been a miracle drug for me. If you need it I’d drive you to the doctor myself. It’s just that due to changes in my brain chemistry, I had an adverse reaction. It happens, it would happen for me again, but I’ll get to that. It probably won’t happen to you. This drug rescued me from disability on four separate occasions. It’s a good thing.

Four weeks into my treatment I started having shortness of breath. I thought it was anxiety, so I took more anti-anxiety medications. I developed a persistent cough, I thought it was seasonal allergies, so I took that stuff. I felt this ball in my throat like I was choking so I thought it was GERD and took antacids. Nope. That globus feeling – the feeling like something is stuck in your throat – became so intense I was gagging and dry-heaving. Turns out I was allergic to the new medicine too. A fraction of a percent of people develop swollen glands and shortness of breath, and guess who was lucky enough to be in that percentage. This gal! I’m a medical marvel! If there was an olympic sport in medical oddities, I would be Michael Phelps.

Luckily by the time the symptoms got so intense I couldn’t take the medicine anymore, I was doing really well on my own. I was far enough away from my last dose of Lupron that my moods were stable enough for me to stop the medicine causing the allergic reaction, and after a few more weeks taking things easy, regulating my sleep, and slowly resuming my activities, I’m feeling pretty much back to my typical self. I did it.

I’m so grateful for the people who support me, for having access to mental health care, for a family who could make sacrifices and pick up slack to help get me through, and I believe that the best way I can repay all of that is by first, taking care of myself, and second, being honest about my challenges to help remove the shame and stigma so many of us feel about our mental health struggles.

I’m an accomplished, successful person, and I also live with mental illness. The truth is that most of us do of one kind or another, and if we don’t then we are definitely touched by a loved one who lives with a mental health condition. It is a fact of our modern time. Our brains have not evolved to be able to deal with all the stimulus of our day. We have to stop being ashamed, stop hiding, and recognize that these are physical conditions.

I made it through, and if you are struggling, you can too. If you need help, there are people trained to help you. Please reach out.

1-800-273-8255
National Suicide Prevention Lifeline

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Sprout

Sprout

This was my Mother’s Day present from Atti, and it’s a pretty fitting metaphor for what I’m up to right now.

Remember when I talked about Therapeutic Boredom? And how being forced to slow down because of all the crazy hormones was forcing me to learn stuff? I had no idea.

I work really really hard at being emotionally healthy, I think that’s clear. And most days I feel like I’m pretty on top of things in that department. I know when to rest and when to push and what cues to listen to, and I make it a real priority. That’s how somebody can come from my kind of background and wind up as the person I am. A lot of really hard scary emotional work.

And other than what it takes to live with my mental illnesses, I feel like I’m pretty sorted. The stuff of my childhood doesn’t grieve me like it used to. Entire weeks will go by without me thinking about what used to cause me tremendous pain. I didn’t see a breakthrough coming because I didn’t think I needed a breakthrough.

But apparently I did. And forgive me for vague blogging again, but for once it’s too personal to blog about. I didn’t think I would have a limit, but what do you know? I do!

It’s actually all great news. Once upon a time I would have come up against something that brought the grief back and I would have taken to my bed for a week. This time, I actually feel better. I feel like a literal weight is off of me. I feel proud of myself for being strong and brave enough to face hard things, and proud that I can use the tools I’ve acquired to take care of myself. I’ve been meditating, and taking long baths, and seeking quiet and candlelight, and making myself as physically relaxed and comfortable as I can be so that I can do the hard interior work of facing the worst, darkest, most terrifying corners and scrubbing them clean.

This might sound twisted, but I’m actually enjoying it. My body is not healthy enough to let me use it to feel powerful. No marathons or unassisted births for me. But this? This feels powerful. I am healing myself with the power of my own mind. I am sorting through old scripts, beliefs that don’t serve me, things that other people believe about me that I don’t, casting them all away, and watching as it’s so effective I feel it physically.

I don’t know why it is I seem to need hard horrible times to learn lessons, but I do. At least I can be grateful I’m learning the lessons. Maybe then I’ll never need to go through this again.

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Atti goes Boom

Atti in the fountain

Atti and I were out running errands together, and like any six year old boy he was testing my patience. We were in Bath and Body Works picking up some presents for Bear’s staff, so I had him in his wheelchair and had the unenviable job of trying to shop, listen to saleswomen, keep an eye on my kid, and block the doorway against a sudden sprint to the parking lot. Imagine a six year old with the bodily experience of a toddler. That’s what I’ve got. Experimenting with independence, learning consequences, asserting his will, but with twenty extra pounds and wheels.

One of Atti’s early therapists drilled it in to me that I can’t treat him like he’s made of glass. His body is no more vulnerable than anyone else’s, he just can’t control it. In fact, he’s actually MORE impervious to pain than a typical kid because of the way his nerves don’t talk to his brain. This kid bounces.

So it’s a running joke with all of my mom friends that I blithely sip my cocoa while they’re nervously hovering afraid he’s going to fall off his chair. In the words of that therapist: “:shrug: Then he’ll learn not to do that.”

Of course, the rest of the world didn’t get that memo.

At Bath and Body Works I was loading the car while Atti was in his wheelchair on the sidewalk. I was talking him through watching where he was going, looking out for the curb, being patient until I could help him, but like most kids, he didn’t listen. He saw the wheelchair ramp and decided to try and do it all by himself, but one of his wheels went off the curb and he fell forward into the parking lot right on his little face.

Experienced moms know, this sucks. When you’re talking skinned knees and not blood or broken things, it sucks way more for mom than it does for the kid. You have to console your child, you feel the typical “I let my baby get hurt” guilt, but since it’s just skinned knees and everyone’s fine it becomes one more pain in the neck hassle you have to deal with in your day. If it was serious you’d drop everything and run to the doctor. But since it’s not serious it’s just aggravating.

But when your kid is in a wheelchair, the world thinks that every fall is serious. When Atti fell over he started crying, but I knew it was an angry cry, not a hurt cry. So because the day had already been long and there were still four more errands that had to get run I was frustrated. And then I saw the people running and I had to put on my show for the public. People were sprinting from across the parking lot, a lady ran out of the store with her basket she dropped in the middle of the sidewalk, all because a kid fell from a sitting position onto the ground. The wheelchair makes it look scary.

Let me pause here in case I sound totally callous. Atti’s fall was roughly the equivalent of a kid sitting on a swing not in motion, and falling out onto their stomach. This happens on playgrounds everyday so frequently that notes don’t even get sent home about it. I asked my mom friends what they do in this situation and they said, “I say, ‘whoops! hop up!’ so they know it’s no big deal.” I’m talking your typical kid learning how to use their body and not paying attention kind of fall. And since Atti fell in his chair, the chair takes most of the impact.

But to people who don’t see wheelchairs every day, it’s terrifying. So then it becomes about their emergency, not my son’s.

Atti was pissed off that he fell over. He was mad he didn’t navigate the wheelchair ramp by himself, but he was WAY MORE upset that a crowd of people were standing around gawking at his humiliation. So he’s screaming and crying because he’s embarrassed, but the crowd of people think he’s crying because he’s hurt and want to help the little disabled boy and his mom, and I want to tell them all to shoo and let me tend to the hurt feelings of my little guy. Atti won’t stop crying until they go away, and they won’t go away until Atti stops crying.

In that moment I feel the burden of representation. That’s my show for the public: the educator. The charming and approachable advocate of disability. The adorable little boy who makes disability not so scary. And in that moment when I want to tell them all to go away I think about my little friends whose disabilities carry disfigurements that make the world not so kind to them. I think of the kids without parents who can force a path in the world for them. I think about all the people with disabilities who are invisible to the rest of the world, who are pushed aside, who are unwelcome in public, who are vulnerable, and I think that doing a little education is not such a burden.

So while my child is crying I’m explaining Cerebral Palsy to the crowd. I’m helping them understand Atti’s speech and that he’s telling us how mad he is he fell on the ground. I’m showing them his chair and how lightweight it is. And inside I’m torn between wanting to respond to these people’s kindness with kindness of my own, and just shoving them aside to tend to my child.

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Feeling Rebirthed

Easter 2014
We had a quiet Easter over here. Just the three of us with a no-frills ham dinner, matching clothes courtesy of Old Navy so I didn’t even have to work at that, the first hour of church and then a visit to Bear’s work to check in on the patients and spend the holiday with his work family, then home for a nap. It was exactly the speed I’m running right now.

Last week I went in to get my second shot of Lupron and they couldn’t give it to me. The medicine got recalled and they didn’t have any new stuff. They seemed to feel that the dose I got didn’t apply to the recall, but I’m wondering if that’s why things have been so different this time. Why my emotions are on overdrive and completely disconnected from my brain, why I’m still feeling pain a month in, why I’m still living with the worst of the endo symptoms and the worst of the Lupron symptoms at the same time.

But all this time being forced off my feet has been so good for me in so many ways. I’m a big believer in what Joyce Carol Oates calls “Therapeutic Boredom.” That it’s only in the still and quiet times that healing can take place and discoveries can come to light. I’ve made a whole bunch of changes behind the scenes that are too inside baseball to bother talking about since they won’t change much about the blog but change everything about my workload. I’ve spent time examining my goals to see if what I’m spending my time on is what I really truly want out of life or if it’s where I’m spending my time because it’s “enough” for me. I’ve asked myself if I’m doing what I really want to be doing or if I’m doing things as a distraction from taking the risks I really want to be taking. And I’ve found some new horizons for myself.

Like I said, all this vague blogging won’t change a ton here, and it’s all too early to discuss even if it would, but I’m writing about it because I feel like I’m not alone.

I worked at a M&A firm back in the early 2000’s, and when the economy dropped our work dribbled away from a crazy torrent to a whole lot of nothing. My boss at the time called me into her office to talk to me about how much time I was spending on the internet and she said something that’s stuck with me, “We have to be careful not to let the work expand to fill our time. We have to let our time expand our work.” It was a great reminder then to use our slow time productively and to work just as hard in the slow times as I did in the fast times. But I also think about it a lot in my motherhood.

I can get so obsessed with getting a recipe right that I go a whole week without making dinner for my family. I can take something like a Halloween costume and make it as time consuming and important as the Oscars. I can have a big idea or a big dream and put it off for months or years while I work on holiday decorations or printables. None of those things are invalid or wrong by themselves, but they are a distraction if they’re not what I truly want for myself.

So with this slow down I’ve been forced to take, I’ve been asking myself some hard questions and reshuffling my priorities. And then a funny thing happened. I rediscovered my love for what I’ve been doing all along. I longed to come back here and talk through all my thoughts, I felt my creativity revving back up, but I also found the drive to tackle the big dreams. I had just let things get out of order and putting everything back where it belonged helped me rediscover my love and enthusiasm for all of it.

So hopefully soon I’ll have the big dreams far enough along to share, but in the meantime I still have some great things coming up. I’ve finally begun tackling the Master Bedroom makeover I’ve had as a crafty goal for more years than I can count and I have some pretty amazing results to share with you. And a whole new attitude while I do it.

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Hormone Crazy

Hello my dear friends. Thanks for being so patient with me during my unexpected hiatus. And thank you ever so much to those of you who emailed to check up on me. You folks are good people and the world is better because of you. Thank you for your kindness to a lady from the internet.

I’ve gotten walloped by a bunch of bad things in a row and I just plain reached the end of my resources. The final straw was starting this new course of medication. It’s not new to me, this is my third round of Lupron and it’s been a miracle drug for me every time, but this time around is totally different. Lupron often comes with some pretty gnarly side effects, and until now I’ve been lucky enough to largely avoid them. But this time? Holy crap. My brain has been snatched and replaced with that of a 12 year old girl. It is marinating in hormones so powerful that I cry because I’m lonely when my family is in the room, I cry because I love them so much, and then I cry again because I miss Atti when he’s asleep. I cry because it’s raining, I rage because I have a food craving I can’t satisfy, I laugh hysterically at how ridiculous I am, and then I cry at how ridiculous I am. I’m weak and lightheaded with hot flashes that keep me up all night and then fatigue that nails me to the couch all day.

These three weeks were exactly what I needed – the permission to just deal with what I need to deal with and to disappear for a while. I’m not yet over the worst of it – I get a shot every month and I’m hoping that the second shot will bring me a little equilibrium – so I’m still going to have to take things a little easier than I used to, but at least I’m rested now and not at such a low emotional ebb. And who knows, maybe at the end of all this I’ll not only be healthy, but manage to get a little baby out of it all too.

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Welcome Back Endometriosis. You weren’t missed.

Pills
I’ve had to come to a tough realization over the last couple of weeks: The endo is back.

It never truly goes away. Whenever I finish a course of the drugs that put me through menopause I start right back up with the slow growth process. Eventually I have to admit that midol won’t get me through my period. And then slowly I’ll go from having one bad pain day to having a bad pain week when I’m on my period. And then eventually I’ll have pain around the time of ovulation. And now I have to admit that I’m having pain every day.

This really blows.

Aside from the obvious, pain hurts and that sucks, it’s hard to manage my life when I have to be on serious pain killers. Right now I have to wake up and rush through any work that requires my faculties. Any writing, any thinking, any interviews or public speaking, I have to do it all while gritting my teeth until I have to cry uncle and go take the drugs. And then I have to deal with all the guilt and shame that comes along with chronic illness – feeling like a waste of space, feeling guilty for being a burden, feeling intense intense shame over being stoned in front of Atticus and not present for him. Every day I have to decide, do I want to be in pain? Or do I want to be functional? Which is a higher priority? And because a mom taking prescription drugs is such a ridiculous cliche, I try as hard as I can to never let people see me medicated. I’ll talk about it publicly on my own terms, but I don’t ever want a teacher or bus driver to see me altered. And I obviously never drive on medication – duh – which puts another crimp in my life management plans. No trips to Target for diapers or to the grocery store when the fridge is empty.

But what I’m really struggling with right now is the fear. I’m afraid it will get as bad as it was in my 20’s when I was completely disabled. Back when I first started blogging because I was on pain medication every minute I was awake and I could go weeks without talking to a human besides Bear. I lost a decade already to this disease, it’s terrifying to contemplate going back there.

Of course, this time I actually have health insurance. I have a doctor who doesn’t think I’m crazy or that periods are supposed to hurt. I have a treatment plan in place and I just have to wait until the medicine is available at the right time in my cycle. It shouldn’t be much longer before I’m complaining about hot flashes and food cravings again.

But for today, I’m mourning. I’m mourning my own limitations, I’m mourning the pain I feel and all the emotions that come with that, and I’m mourning that I can’t be the kind of mom I want to be. I guess the good thing is that in just a little while the pain medication will kick in and I’ll find it all hilarious.

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How to cope with suicide

Atticus looking at the light

Someone close to us killed himself two weeks ago, and we spent the end of last week traveling down and attending the funeral. It is tragic and heartbreaking, but out of respect for the family I’m not going to talk about that. Instead, I want to talk about how to cope in the aftermath.

As someone who struggles openly with mental illness, I want to speak for those who commit suicide.

There have been times in my life with the threat of suicide was very very real. Times when I had a plan and the only thing that kept me from enacting it was people who helped me when I reached out to them. So I feel like I can speak from experience when I say: no one does this because they’re thinking rationally. Teenagers have their own unique dilemmas that threaten suicide, but if we’re talking adults? They do this because the disease they are living with – depression, bipolar disorder, addiction – has overcome them. It’s the disease that ends their life. Suicide was just the form it took.

That distinction is crucial in every way. When we process a loss, we all go through the anger stage. This is a normal and healthy part of processing our grief and isn’t something to be avoided. But when it’s suicide that complicates that loss, the anger stage contains a specific component that blames the loved one. We talk about the person “giving up” or say they “couldn’t cope.” That they’ve abandoned their family or sneer that suicide is a “permanent solution to a temporary problem.” Well, sometimes that problem is temporary – the problems that often affect teen suicides can be temporary – but sometimes it isn’t. Mental illness and addiction are not temporary. And if someone dies from suicide after a struggle with a permanent problem like that, it’s not because they couldn’t cope. It’s because the treatment failed.

If someone had cancer, and they had good care from doctors and fought through chemotherapy and they still died, we would never say it was because they couldn’t cope or lament that they weren’t stronger or criticize them for being selfish. We would say the treatment failed. That despite every effort the cancer did not respond to chemotherapy and it took their life. That’s how we need to treat mental illness and addiction. (I keep saying mental illness and addiction because I want to pay special attention to addiction. It is, in fact, a mental illness and should be taken every bit as seriously.)

I am extremely lucky because in a nation where it is far from the norm, I have had access to mental health care including prescription medications. And I’m lucky again because the medications work, and I am absolutely diligent about staying healthy with the help of supportive family and friends. Not everyone has that string of luck.

We have no real treatment for addiction. There is no medical treatment, there is no cure. We have some excellent therapeutic tools, but we have no way to change brain chemistry or structure in a way that consistently and reliably counteracts addiction. Which means that every person you know who is sober and living with addiction is performing a mind over matter feat of strength that should humble us to our core. Unless we can use our mind to lower our cholesterol or blood pressure, how dare we judge an addict whose disease ends their life?

Blaming a victim of suicide for being weak reinforces the stigma surrounding mental health and feeds into the diseased mind that tells us the world would be better off without us, that we’re too much of a burden on our loved ones, that we shouldn’t reach out for help, that we’re not capable of coping.

But it also is a tragedy for the people left behind.

Your loved ones didn’t commit suicide because you didn’t love them enough. They didn’t commit suicide because they didn’t love *you* enough. They didn’t do it because you enforced boundaries or consequences or to teach you a lesson. They did it because the disease overwhelmed them and the treatment failed.

No other cause of death has us feeling so guilty. We wouldn’t tell ourselves that if we had put up with the cancer better than our loved ones would have survived. If only they loved us more they wouldn’t have been overcome by the tumors. If we had loved them better than they never would have gotten cancer in the first place. All of those thoughts are absurd, but when you replace cancer with addiction, they are commonplace.

Mental illness is a disease. Addiction is a disease. And losing someone to it is tragic, but it does not make them, or us, weak. All we can do is rest in the knowledge that their fight is over and try to leave room in our hearts for the knowledge that whatever length of time they managed to fight this disease was heroic.

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Atticus finds a soulmate

Atti watching Jellyfish
We spent the weekend off on a business trip for Bear that happened to be at Pebble Beach. So, yeah, that happened. The girl who lived in her car and learned to keep orange juice in the glove compartment because it didn’t go bad as fast as milk now has an opinion on which luxury resort spa has the better masseuse. I just…it’s too bizarre to fit in one lifetime.

But while I was getting massaged and pampered, and while Bear was off playing a world class golf course (all on his company’s dime), Atti was off spending time with his grandparents. They drove up from Orange County to watch Atti for us and they decided to all have a little vacation in Monterey while the parents were away.

When we first brought up the idea of going to the aquarium, Atti thought we were offering him goldfish crackers and got super pissed off when they never arrived. I’ve been taking him to zoos for years and he’s just reacted with the bored expression of a teenager being dragged away from their cell phone, but the last time we tried there was a petting zoo and he could not get enough of those goats. I figured he might be ready to at least not be sullen and screamy as my inlaws enjoyed a walkthrough.

Not living close by and having daily contact with Atti, they’ve struggled to learn his communication style. They have other grandkids they see much more regularly, and all but one are typically developing, bright little funny kids. And even the other grandkid with challenges interacts with them and speaks to them in his adorable little voice. Then they see Atti a few times a year, he doesn’t talk to them like the others do, and it’s easy to make assumptions. Most people do. When we’re together I have to spend a lot of time reminding them to not put limitations on him, to pick up on his cues, and to remember that he understands everything going on around him.

According to the inlaws:
There was one room in the aquarium that had a lot of statues of different things, but they weren’t really paying attention to them because they were surrounded by sparkling sardines swimming around the whole of the room. Grandma kept asking Atti if he was ready to move on to go look at the jellyfish, and he wouldn’t go to them. Instead he’d wheel his chair over to one of the statues and pat it. Grandma would let him look at the sardines some more, and then try to get him to leave to see the jellyfish again. So he’d go back over to the statue and pat it. Grandma said, hitting herself on the head as she told me the story, that it took her about four times before she realized that the statue he kept patting was a jellyfish. He was showing her he understood.

Grandma took that picture up there. He was entranced with the jellyfish.

Later in their visit they stopped by the octopus tank where the uncooperative octopi would only show the crowd their suckers vacuumed on to the glass. Atti was not so entranced then, but in the next room they got to hear one of the biologists talking to a group of kids about octopi. The speaker had an octopus with her and was explaining how an octopus’s body functioned. She showed the suckers on the tentacles and Grandma showed Atti how those were what he had seen in the tank. The biologist explained how smart octopi are – all the ways they can distinguish between trainers and even do tricks – and Grandma told Atti that the octopus was smart just like him. The biologist explained that octopi are very shy – how they can camouflage themselves and ink and swim away super fast – and Grandma told Atti how the octopus was shy just like him. She said, “The octopus is just like you, Atti! Very smart, and very shy.” As she told him these things, Grandma said that Atti’s whole face lit up and he just beamed. Grandma kept going, telling Atti stories about the octopus and how great it was to be shy and smart, and Atti was in heaven.

She was so touched to see it. He communicates so much to me that sometimes I forget how rarely he uses words or does it in a way others understand. But at the aquarium, Grandma saw it, and so did Atti. He stared at those animals until it was time to meet us, grateful to have somebody else in the world to understand him.

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