Did you see Sue Klebold on ABC’s 20/20 last Friday? I watched it twice.
Happy 2016! It’s February, I know, but I’m finally ready to share my new and improved blog with you. I hope you like the new design, with more images, video (coming soon!), and a fresher, cleaner, more positive look. It matches my improved outlook on the blog, and on advocacy. I’m tired of advocacy that screams about the dangers of the severely mentally ill for the shock value. I’m tired about being angry. Time to talk about compassion, advocacy, and hope.
This year will bring weekly new content, and ways you can get involved. I hope you like it.
I dislike this time of year. It’s not because summer is waning and, here in the Midwest at least, leaves are starting to fall from the trees. It’s not because summer hours at work are drawing to a close (not that I have much opportunity to use them anyway). It’s because I feel like such a beast being resentful of all of the pictures of my friends’ children going off to college.
It’s petty, I know. But it’s a reminder of what will never happen for Tim, and it starts the cavalcade of mourn for what Tim will likely never be able to experience:
I thought I could go off of my meds. I thought I was stronger than depression. But the black dog is back and he’s sitting on my chest, daring me to leave him off leash. I tried. I thought the exercise would be enough. But five weeks off my meds and his teeth are bared and I keep thinking that ending it all would keep him from getting me.
I don’t know why admitting it to myself is so defeating. I’ve spent years giving others the lecture about getting treatment and that mental illness is nothing to be ashamed of.
So today, I go back to my shrink today and admit defeat.
Before I recap, I should say that Janssen Pharmaceutical paid for my travel, hotel, and meal expenses to attend the conference, but all images, comments, and opinions are mine and are not sponsored.
We started Friday night with a reception and dinner to get to know each other. There were bloggers and activists there representing cancer, diabetes, arthritis, autoimmune diseases, IBD and Crohn’s Disease, HIV, schizophrenia, and a few others. I was excited to meet in person fellow mental health online advocates Dr. John Grohol of Psych Central, Melanie Jimenez of Understanding Schizophrenia, Ashley Smith of Overcoming Schizophrenia, and Lisa Lambert, of the Parent / Professional Advocacy League.
During dinner we heard a moving speech from Clare Martorana, Executive Vice President & General Manager, Consumer Health & Wellness at Everyday Health, about what drew her to a career in online heath and how special this first-of-its-kind conference was. Her talk left me excited to get to the meat of the conference on Saturday.
Saturday was packed full of interesting speakers about diverse subjects. First up was ZDoggMD, or Dr. Zubin Damania, who gave an amazing talk about how he gave up a career at Stanford Medical Center to test how concierge medicine could change patient outcomes and the cost of healthcare by using an integrated, pay-for-membership model much like a gym membership. His test bed, Turntable Health, charges just $80 a month and includes not just urgent care, but preventative health, therapy, and even yoga! In his “spare” time, he creates dope YouTube videos like this one (“dope” is still a thing, right?).
Session One – Compassion Fatigue
The first session discussed the fatigue that can come as part of being an online health advocate. When you have an online as an advocate, you often get very close to people who reach out to you for help, support, and camaraderie. Carrying the weight of everyone’s stories can be overwhelming, and requires another level of self-care that I know I am prone to forget. The session was hosted by diabetes blogger Kerry Sparling and leukemia blogger Dr. Brian Koffman, and included several questions to ask ourselves and strategies to reduce compassion fatigue. I came away from the session understanding I have some real decisions to make about other sites I have been blogging for. More on that to come.
Lunch Speaker – Trends in Health Technology
Over lunch, Susannah Fox of the Robert Wood Johnson Foundation shared with us some interesting facts on how technology is advancing healthcare and advocacy. There was great discussion with the audience as well, and during her talk, I really came to realize how much leverage we have as advocates together – not just for each illness, but collectively as the voice of the patient in healthcare. I think there’s something there that I will be exploring more over this year.
Session Two – Legal Issues in Blogging
After lunch we heard from Jimmy Nguyen, a lawyer and blogger himself on some of the legal pratfalls we need to avoid as bloggers. I learned a lot about libel and I was glad to hear that I am on the right track when I use images for my blog – they are all either taken by me or have a Creative Commons license. I also learned that I may have a little beef with Janssen over their Mindstorm video on schizophrenia – I may be able to claim they are violating my trademark, since my blog as been around nearly two years longer than that video!
Session Three – Measuring Success
The third session featured Tim Cigelske of Marquette University and was all about how to use tools and services online to make posting easier, and measure the reach of our advocacy. There was some twitter murmur from the attendees that if you’re measuring your success in terms of number of readers or followers, you might be in it for the wrong reasons, but it was interesting to learn how to see what my twitter followers are in to, and if I am reaching people who are interested in mental health (no newsflash – I am).
Session Four – Advocacy as a Career
I’m sorry it’s been so long since I’ve posted. Winter is long and cold here in Chicago, and frankly, I am, as much as I hate to admit it, I am prone to seasonal depression which makes me pretty much hide out, eat, binge watch Netflix, and shun bearing my soul to, well, anyone. But I stepped on the scale about seven weeks ago and started to bawl. I’ve never weighed this much in my life. Ever. I literally weigh twice as much as I did when Tom and I got married nearly 25 years ago. I know how it happened. It was years of giving myself permission to self-medicate with food. I could literally eat 4,000-5,000 calories a day and nearly never move. I got a Fitbit in early December and if I broke 2,000 steps a day it was a miracle.
After I stopped crying I decided that I can’t blame it on Tim anymore, or what we went through in 2013, or Wonderboy’s recent decision to distance himself from us. Tim is who he is, and the ups and downs of his stability are never going to get a whole hell of a lot better than they are now. 2013 happened, and it’s over. Wonderboy will, I pray, decide that having parents in his life is better than not having them. I can either eat myself to death over all that, or I can accept what I cannot change and stop pretending. So, I joined the gym at work. I’m lucky that there is one in the building and it is pretty cheap as gym memberships go, and it has a lot of different equipment and personal trainers at a reasonable rate. My first day at the gym was Wednesday, January 28, 2015. I walked 2 miles an hour on the treadmill for 25 minutes. Not even a half mile. I grimaced, showered, and went to my desk. I made it 5,000 steps that day.
This morning I walked 3.2 miles on the treadmill in 63 minutes. It’s 1:15 PM and I’ve walked over 11,000 steps already, on target for my current daily average of 12,000. I weigh ten pounds less than I did on January 28th. And my mood is a hell of a lot better, even though the temperature when my day started was -5 Fahrenheit. I’m seeing my shrink next Thursday, and I think I’m ready to cut back on my antidepressant.
Yeah – it’s great I’m moving and losing weight. I’ve got a shitload of weight to lose, so I’ll be doing this for the better part of the next two years, before I figure out the routine I need to stick to in order to maintain weight loss. But I’m most happy about the unexpected benefit of lifting my mood; really, really, lifting it. I’m making myself hit the gym five days a week because, well, it’s March folks, and Tim hasn’t made it through a March without being in the hospital or residential since he was 10.
I feel like I’ve been stuck in the long, dark, cold December for a long time. But I do have reason to believe 2015 will be better than the years past. I refuse to accept anything less, for the first time in a really, really long time.
On his blog today, Pete Earley posted a recap of a speech DJ Jaffe gave at the New York State NAMI conference earlier this year. DJ Jaffe and his mentor, Dr. Fuller Torrey, are two of the most outspoken advocates for AOT legislation in the country.
I have blogged before about my feelings on what Mr. Jaffe advocates for. He draws a very clear distinction between what he considers, “the most severely mentally ill,” and others with mental illness. I do not. There’s a thin line between stability and instability and I don’t see the point in making a distinction between the two, because a person on one side of the line today can easily be on the other tomorrow.
So, here’s the thing, Dj Jaffe:
Your definition of a “high functioning” person with a serious mental illness is someone voluntarily on their meds and not incarcerated or homeless.
So – what about someone who:
- is actively having hallucinations and delusions, even on meds
- can’t get housing assistance because every waiting list in the state is closed
- is hospitalized every three months
- has an IQ below 70 because the psychosis has eaten away at his brain
- cannot be left alone and requires an aide 24/7
- has attempted suicide in the past year
- can’t hold down a job
- can’t get Medicaid to cover all the medication he needs to keep him even remotely stable
But he’s voluntarily taking his meds, isn’t homeless, and isn’t incarcerated. Does he still count as someone you advocate for?
The difference between him and med non-compliance and incarceration is one day:
- One day when his psychosis breaks farther through is meds than he can handle.
- One day when he has to spend a few hours alone in an afternoon and his delusions lead him to suicide.
- One day when his psychosis tells him his sister can read his thoughts.
It takes an unbelievable amount of energy to keep him on the side where you don’t feel the need to advocate for him. But the difference between persons with serious mental illness like my son and the persons with serious mental illness you advocate for may just be one solitary day.
- The day my appendix bursts and I have to be hospitalized.
- The day his father gets snowed in and can’t get him from school.
- The day the pharmacy has to order his meds and they don’t arrive in time.
- The day Clozaril stops working.
Think about that, please, when you consider who you are advocating for.
What a week.
This week has been Mental Health Awareness Week, as I’m sure you know, and today is World Mental Health Day. This year’s theme is Living with Schizophrenia, something we know a lot about.
Why must I hand hold Tim’s case manager through everything? The man has been a licensed clinical social worker employed by our county health department for at least 6 years, yet he acts as if he has never had a single client before Tim.
Two weeks ago I asked him about permanent supportive housing options for Tim when he turns 21 and his ICG grant runs out next July. He had no idea. I gave him the names of four programs in our area I’d heard of.
He had someone in his office call them and ask, hypothetically, how they work. HYPO-FUCKING-THETICALLY. This isn’t hypothetical. Tim needs an ACTUAL place to live. This dude is ACTUALLY his caseworker.
I swear, I’m starting to believe the reason the mental health system is so messed up is that the people running it all have a collective IQ smaller than my dress size. And my dress size ain’t all that small.
My father always says, “illegitimi non carborundum,” which is Latin for, “don’t let the bastards get you down.” What’s Latin for, “don’t get mad, get even”?