in my place, in my place were lines that I couldn't change, I was lost, oh yeah

Wednesday, 09/27/17, 10:36am, 1:01pm

Hey there.

As usual, of late, you know, like the last several weeks, haha, we shouldn't put any kind of "standard" on my life of the past many months or years or anything like that... but "as usual", the week, since Monday, has been going rather decently well. Unlike the weekend was. This seems to be my life as of late, shall we say the last month-ish? Because as a quick reminder, I suffer from treatment-resistant depression, and anxiety, at least for like the last 10 years or so, with an additional bout of it when I was a pre-teen.

If you haven't read my whole blog, which I'm sure most people haven't, you may not know my history. If you want a better understanding of how my depression manifested, or just a reminder, read here. As many of my readers know, we experienced a big loss last year: my brother-in-law Adam, who had been suffering from paranoid schizophrenia, died on May 13th on May 13th when hit by a train. I think my depression took a big turn for the worse after his death, and I couldn't seem to recover. You know, speaking of which, I was so lost in my own "worseness" and whatever, I didn't even acknowledge the 1-year anniversary of Adam's death in my blog. In the years before his death, I was medicated for depression and anxiety, I went regularly to therapy, tried to practice various coping techniques at home, and I think I often convinced myself that I was "good enough". I'm not sure that I ever really was, even before Adam's death, but when medications worked, at least a little, it often didn't seem worth it to switch to something else.

Last year, November 29, is when my psychiatrist first brought up "treatment-resistant depression"; this was before he was quite ready to diagnose me as such but when we were going to try one more antidepressant as a last-ditch effort. My post about that, actually, describes my various medication efforts decently well. I've been re-reading old posts more today, hence all the links, mainly because of my memory issues from ECT. If we recall, I've got this weird phenomenon going on called "state-dependent memory", so it's rather difficult for me to really remember how truly bad I was before ECT. I think going through some old blog posts, especially seeing ones I wrote when I was in a bad state, or like when in one of the posts I described how 5 of the last 7 days have been shitty days.

That's not how I'm doing currently. It's changed... significantly... since ECT. It's weird, from that first time I'd ever mentioned ECT, hoping I'd never have to read more about it, to my description of the first treatment, and to writing 5-star reviews of my ECT place on Google, things have changed, just a bit.

I am much, much better. Although the weekends have been tough, over and over again, and this Sunday Nasser and I discussed various treatment changes, we discussed it at length with my long-time, primary psychiatrist, the one I've been seeing for many, many years now. I'd say, for sure, that he knows me, he knows my history, very, very well. Nasser and I, both, trust his medical/psychiatric opinion. When we mentioned the idea of trying a new antidepressant, he was immediately, like, "oh no, I wouldn't want to chase perfection." Because he sees how much I have improved, and really, we have a pretty decent idea of what we need to work on. It's the weekends- whether it's the lack of routine, or ridiculous expectations I place onto to-dos, etc, I do believe it's something we can improve, without changing treatment. It's something we can improve with the help of all the troubleshooting we're doing, with the help of my therapist, with the help of my doctors, and family, and friends. It's not something that feels like the end of the world anyway, because in strong contrast to how I was doing before ECT, I can, and do, improve and recovery within in the same day of dipping down into that depression.

Well. I think that's just about as much as I can handle today with this post. Sorry, dear readers, I am feeling a call and need to relax. Haha. Before I do, I'm going to leave you with a picture from my run on Sunday, the one that really helped me recover, the one in the rain.

Oh, and some pictures of my kiddos doing chores the previous weekend... because despite what I say about weekends being tough, they haven't been all bad.

we’re broken in two from the day we are born, but you’ll not hear any more of this said

Tuesday, 10/04/16, 8:10am, 12:05pm, 1:25pm

I know I've gone off my soap box several times throughout the course of this blog about the stigma around mental illness and the effects that it has on people with it- here, here, and here for example. But until stigma around mental illness is gone from this world (something I don't expect to happen in my lifetime let alone my kids'), I will continue to talk about it, to bring it up and shine light to it.

I've posted this before, but I think it's worth re-visiting. When I googled "stigma", here's what came up:

stig·ma

ˈstiɡmə/

noun

1. 1.

   a mark of disgrace associated with a particular circumstance, quality, or person.

   "the stigma of mental disorder"

   synonyms:

   shame, disgrace, dishonor, ignominy, opprobrium, humiliation, (bad) reputation "the stigma of bankruptcy"

Note, the first example is "the stigma of mental disorder". That's because it is SO prevalent. You don't believe me? Read here and here. Why do I think that stigma is still present? Because people still treat mental illness different from physical illness. They assign a shame around mental illness, making the illness his/her fault.

I've stated some of the statistics before, but what does stigma look like?

Stigma is the wave of embarrassment when you talk about crazy Uncle Louie who suffers from biopolar disorder or cousin Steve's crazy ex wife who suffers from schizophrenia. Stigma is shifting your eyes away from the homeless person you see on the corner, mumbling to themselves. Self-stigma is the refusal to seek treatment when you suffer from a mental illness because you think you should be "strong enough" without it. Stigma is when Donald Trump can suggest that military service members who commit suicide do so because they "can't handle it".

Stigma is this internet meme (there's a part of me that doesn't even want to post it, to give it any notoriety).




Oh that meme makes me so angry (and trust me I know the benefits of the outdoors and I recognize that antidepressants are far from perfect), now I've gotta post the correction meme to this.



The thing is antidepressants can mean that difference between suicidal and not for many people, for some they may take the edge off, for others they might not help much and the side effects may make it not worth it. And then of course for some, they can cause suicidal thoughts, so I agree, when that happens, they're shit. But it isn't fair to discount all the good they do for so many people. And it isn't weak to take medication, it doesn't mean that someone "can't handle it"; it simply means that person has chosen to medically treat their brain. Just like you would with any other organ.

I hate the stigma, I hate my own self-stigma. It makes my depression that much more difficult to battle. I'm fighting that stigma, continually, and I will as long as I'm on this earth. I fight the stigma everytime I write openly about my struggles, I fight the stigma when I request or accept help from others, I fight the stigma when I raise my kids to believe a mental illness is an illness not a character flaw.

and I'll be your friend, I'll help you carry on

Monday, 08/08/16, 12:58pm, 2:05pm

I shared my last post on facebook, since I was "fulfilling the Love your Spouse Challenge". And, like most of the times when I share a bit more widely, I felt some of that vulnerability hangover that I've felt before. That sick to your stomach feeling of oh crap, I just shared some really honest things about myself! And the inevitable does everyone who reads my stuff just think I'm nuts and what they read confirms the stigma around mental illness? I hope not, but I don't often get much feedback. So far it's been all positive, but I wonder if the negative opinions have just been keeping their mouths shut not wanting to say it because they know I'm "delicate" with my emotions. More likely people don't know how to respond to the things I write about or don't feel comfortable doing so. And that's part of what I'd like to break down in writing about mental illness.

Is it a question of you don't know what to say? Personally, I just like knowing that there are people out there who care about my well-being, who support me with thoughts or prayers or good vibes. Whether that's a quick email/google chat/text/facebook message/+1 to the blog post to say how are things going today? Or just a smiley face to say thinking of you. It's hard to know how to support someone who is going through something so unfamiliar to you, or even familiar, but has a stigma. And supporting someone who is a bit emotionally volatile. I guess I am that, although it's hard to admit.

It was hard to support Adam, my brother-in-law who many know suffered from schizophrenia. He was often emotionally volatile, and there were the added side effects of his illness; you often competed with the voices in his head.

Sometimes supporting is staying out of that person's issues until called on for support. Sometimes it's offering kind words on a random day. Sometimes it's watching their kids for them to get in a run or bike ride or therapy appointment. Sometimes it's sitting with them while they cry. Sometimes it's chatting electronically so that they can hide their lows comfortably.

For those of you out there who worry about me but aren't sure how to express it, please know that I am trying as hard as I feel I can when it comes to my mental health treatment. I get that the state of my well-being sometimes is scary, but those times don't magically disappear with a pill, even if it's the right one. I'm working on it, we're working on it, and support from you means the world to me and helps me improve.

Lots of love to all my readers, wherever you may be. I hope that you all have a strong support network for the struggles you go through in life, whatever they may be. Whatever support I may provide in writing, I hope to provide it. I am humbled by those who have told me they find comfort in my words, and only wish to continue doing so. If you are having a tough day or hour or year, it's often hard to remember that it gets better. But it's true, it gets better.  And if it doesn't, get help. From those who love you, from the girl blogger from cloud cuckoo land, if there's any way for her to help. ;)

I never said goodbye

Tuesday, 07/26/16, 4:21pm

I was feeling sad about Adam today. 

Before he died, I had envisioned this possibility of the future. A time when our kids are older and we amazingly have more time to focus on us and other people. A time where maybe Adam would live with us or decide to live in a group home in Colorado. A time when we'd see him regularly and the kids would have really important relationships with their uncle. But. I will always have this horrible pit in my stomach feeling that we never did enough for Adam before he died. Never did enough to help him, never did enough to show our love for him.

Those feelings will forever haunt Nasser and I even though we know that sometimes we didn't do more because we were keeping our kids' safety in mind. And sometimes we didn't do more because Adam wouldn't accept the help we tried giving. It's still hard even after we try to balance our what if thoughts.

I've been meaning for quite some time to attend a grief group that I found soon after Adam's death. It's a "sudden loss" group which seemed fitting, but I still don't know how well I'll connect with everyone else because I still have not gone. They meet twice a month, but between travel and summer plans I haven't had a chance to go. I could go tomorrow, but it's also TK's birthday so I don't especially want to leave while we're celebrating with Nasser in the evening. Still one of these days I'd like to attend.

Really I'd like to find a grief group that is deaths related to mental illness, because for me, that's the part that has affected me the most. His illness, the connection I felt with my own illness, everything feels related back to mental illness. Perhaps it would have been different had Adam not had schizophrenia much of the time that I knew him. 

There's a picture I recently came across of Adam. It's one I took on his 21st birthday, at our last bar of the night. Every new picture I see of him, especially one I haven't seen before, is precious now.

why did you have to go

Sunday, 05/15/16, 2:08, 4:47, 6:08pm

Since 12:48am Saturday morning, it's been hard to function.

It was a call from my mother-in-law to tell us that Adam, Nasser's brother, had been walking on the railroad tracks and was hit by a train. He was killed Friday night.

I go into crying fits every so often. When it just feels too overwhelming. And my body won't stop shaking.

Remember Adam, dear longer term readers and friends who have learned the story in the recent days? I haven't talked about him much since my first post many months ago because as I started sharing my blog more, I felt it wasn't my place to tell his story. Now it is my duty to share his story.

Adam was a charming, unbelievably intelligent, cheerful person. He suffered from paranoid schizophrenia in the last 4-6 ish years of his life. We don't know exactly when the symptoms first started to develop, but we think it was during the year he was in college. This is "normal" for schizophrenia, and "psychotic symptoms usually emerge in men in their late teens and early 20s and in women in their mid-20s to early 30s." (Ref: WebMD). The symptoms all makes sense now, but it was awhile before the diagnosis came. Most of us didn't understand what was going on for awhile. It was my mother-in-law who first realized what might be going on and started researching.

Convincing someone that they have an illness, when that illness changes their perspective and realities, is not an easy thing to do. Adam believed everyone was out to get him, so why should he trust anyone? But then he was able to overcome that. Going to the hospital that first time was voluntary. Many of the coming visits would not be.

The next three and a half years after the diagnosis were ups and downs of taking medications, miserable side effects, not taking medications, hospital visits, police calls to the house, Medicaid, getting kicked off Medicaid for not using it because the doctor he already had wasn't available under it, waitlists for groups homes, substance abuse programs, applying for Disability, car and bike accidents, holes in the walls. Despite everything, he did try over and over and over again.

My mother-in-law, as a result of Adam's illness has become an advocate for mental health. She has become involved in local groups that help find and provide housing for people with mental illness and national groups that provide education and support for people with mental illness as well as their care givers. I think the rest of us so affected my Adam's life and illness and death are soon to follow. I suppose that's the only upside. This experience can help us help others not go through the same thing. As much as we possibly can.

Of course a lot of the issue is the stigma around mental illness. If mental illness were treated like any physical illness, mental healthcare would be significantly better around the world. Yet there's this underlying belief that it is somehow the fault of the person who has it. And that belief is utterly and completely false.

I do believe that if there was more funding in the research of mental illness, causes, and treatments, people like Adam could be cared for to live a fulfilling and purposeful life. If more people cared about mental illness as a problem in this world that we have the duty to work towards fixing, perhaps we wouldn't just use mental illness as a scapegoat for mass shootings. Perhaps we can prevent devastating deaths like Adam's if we could get people the care they need when and where they need it.

If any of my readers are called to donate, please consider this fund the family has set up in Adam's memory. From my sister-in-law, "we will give to both NAMI (National Alliance for Mental Illness) and a research center dedicated to brain diseases. by splitting the fund, we are hoping to help with both preventative research, as well as supporting NAMI which is an organization that provides information on coping mechanisms and guidance after a family member has already received a diagnosis."

Every donation is meaningful and appreciated.

I'm going to leave you with some pictures of Adam, since I knew him, which has only been the last almost 9 years. I wish I'd known him much much longer. I do believe I will meet Adam again someday, in whatever kind of afterlife it ends up being. I haven't felt certain or entitled in all those beliefs in a very long time.

Alisa, Nasser, Adam. Muir Woods Nat'l Park, CA August 2009

Adam. Muir Woods Nat'l Park, CA August 2009

RG, Adam. Adam's HS Graduation, IL May 2010

Alisa, RG, Adam, Nasser. Adam's HS Graduation, IL May 2010

Adam, Laila, Alisa, TK, Nasser, RG. Thanksgiving, Adam's 21st bday weekend Nov 2012