Thursday, May 26, 2016

why do you weep? what are these tears upon your face?

Thursday, 05/26/16, 9:59am

Grief is hard.

Yesterday I did a lot of normal things. I switched off runs in the morning with my sister, got in a shower, attended RG's presentation on the Smithsonian Museums, ran some errands with TK, talked with another mom after the bus pick up, tried to get our passports taken care of with the whole fam, went to MNO (Mom's Night Out). And yet. The grief was there every step of the way. I grieved while talking about Adam with my sister since I hadn't seen her since before we went to Chicago. I grieved as I thought of Adam on the run, alone with my music and my thoughts. I grieved when I saw RG's teacher and she gave me a few hugs, asked about us, and offered her condolences. I grieved when the cashier at the grocery store asked how I was doing, and after my long pause, and "ok... ay", I felt the need to answer that we had a death in the family. I grieved when I didn't feel like I could go to MNO because I was feeling depressed. I grieved when a friend encouraged me to come, in whatever state. Then I grieved when I had to share a bit of Adam's story with my Uber driver (because driving was out of the question given my state of being and emotion). And I grieved with my fellow mom friends. With each of their hugs and their kind words of support and their listening to me talk about it. I keep needing to talk about it and share my grief with others.

I think grieving so openly yesterday made me seek the safety of home today. And being out there, doing normal stuff, I feel like I can't hide my grief so I share it. It took a lot out of me.

I skipped an exercise class with my sister this morning. Maybe it would have helped in some ways. But being around a lot of people all day again sounded exhausting. The idea of it made me feel anxious. I'll still get my exercise in since Audra is being kind enough to come over and watch TK while I go for a bike ride. But I've got to be around people later today and that's the goal. To make it to and through that. There might be some crying again with the people, hugs and condolences do that to me, and that's ok. I'm not expecting to not have that. But the goal is to get there with just the grief, and none of the anxiety and depression.

Having grief on top of a mental illness, specifically depression, is... I don't know what to call it. Let's just say I don't know how to navigate it yet.

The closest I came to a full-blown episode was Sunday morning in Virginia. It was the morning after the wedding and I didn't get enough sleep which I'm sure didn't set me up well. But I think I'd been keeping myself so busy that the depression hadn't had a chance to catch up with me.

I said something to Nasser, in my lowest point, that I wished it was me who'd been hit by the train. That terrified him because I meant it then. I do feel guilty sometimes for being here when Adam isn't. I feel guilty that I couldn't do more to help him. I should have been able to do more, coming from a place of sharing a stigmatized mental illness. And I know rationally that I couldn't. Oftentimes the worry was of making it worse.

I never shared my blog with him. I will always feel guilty about that because I wonder if it could have helped in any way. Of course it could very well have made things worse.

It doesn't help to think of the "what ifs" but they do come and go.

This morning I feel like it's unfair for me to be functioning so badly. What right do I have to take the grief so hard when I'm not the sister or brother or father or mother and I only knew him for less than 9 years? And I didn't support him as much in his illness while others did so much more?

But then I always felt this closeness in sharing a mental illness, even though everyone was always reminding me that "yeah but they're different". They are and they aren't. I suppose I'm much more high functioning than he was. But my illness does fall into the "chronic" mental illness category of never really being "in recovery". And I know what it's like to feel stigmatized, even if my mental illness is better accepted than his is. I know what it's like to have expectations of yourself that "you should be able to handle this better" without needing help. And I know what it's like to have foreign, extreme thoughts that frighten you to uncontrolled sobs.

Although we will never know exactly what happened on the tracks the night Adam was hit by that train, most of us agree that the mental illness contributed to his death. He wouldn't have been in that place at that time, perhaps if he had his judgement would have been different and he wouldn't have been crossing the tracks. I do blame the illness. I blame the mental healthcare system in our country for failing him.

I hope that someday we have a better scientific understanding of mental illness. I had hoped that day would come in Adam's lifetime but I suppose it wasn't to be. I hope that better treatments come and I hope that the people in our world become more compassionate and more empathetic and more accepting of people with mental illness.

Tuesday, May 24, 2016

home, home again, I like to be here when I can

Tuesday, 05/24/16, 10:29am, 1:57pm, 3:21pm, 4:49pm

Today I am grateful.

I am grateful for beauty in my yard this morning. I was so happy to see that our irises didn't all bloom while we were out of town.



I am grateful for my delicious, healthy, nutritious breakfast.


I am grateful for the time I was able to know Adam, my dear dear brother-in-law. 
from left: Adam, Nasser, me, Laila
This was the day after (04/19/2008) Nasser and I got married, awhile before Adam's illness manifested.


 Adam's high school graduation. (05/2010 ish)
We think he might have had some paranoia symptoms starting by this point.


from left: Lorri, Nasser, me (holding TK), Adam, Laila
Adam's 21st bday (11/24/2012) and obligatory shot while we stopped at the house 
before heading back to another bar. This was after Adam's diagnosis and 
he probably shouldn't have been drinking like he did since 
I think he purposefully skipped his medication for a few days in order to be able to drink for it. 
It felt great to really celebrate his birthday though, it felt normal.

I am grateful for being able to share my children with Adam, their uncle, before he passed away 11 days ago.
from left: Amu Adam, RG
This was soon after we brought RG home from the hospital (08/2008). 
My mother-in-law had a conference in Denver at that time and she, 
my father-in-law, and Adam were in town visiting with us. 
I'm glad to have the memories of Adam being there in that special time.

from left: me, RG, Teta Vida, and Amu Adam

from left: me, RG, Nasser, GG, Grampa, Judoh, Amu Adam, Grandma

from left: RG, Amu Adam
From RG's baptism (02/2009). Adam was his godfather.

from left: RG, Judoh, Amu Adam
RG had just turned one and we did a trip to Napa with most of Nasser's family (08/2009).
I love this picture of them so much.

It destroys me that I cannot find pictures of Adam with TK. There is one I posted on my last post, the Sunday after Adam died, but it's not just them and they are on opposite sides of the photo. I will update if I find any some day. Unfortunately, TK didn't see him much as Adam's illness got worse and worse as TK started to form memories. He didn't get to see him much in his life, and for that I will always feel sad.

I am grateful for all the dear friends and family who have shown such support and shared in our grief these last 11 days.

I am grateful for my parents for the amazing help and support they've always provided, but especially in these last 11 days. They drove our kids to Chicago so that Nasser and I could be there a few days without them and be able to help with various arrangements and be with family. They are even helping me today in my errands as I try to get to our new normal.

I am grateful for my sister for bringing flowers to come home to, as well as a stocked fridge.

I am grateful for our friends and family who have helped pick us up again. Our dear people who gave us rides and booked us rental cars, who provided air mattresses in Chicago, who came to the wake, who sent their condolences and offered prayers, who kept us in their hearts and thoughts these last 11 days, who went on runs with us and gave us some distraction, who donated to the memorial funds we've set up in memory of Adam, who talked with us on the phone and over texts, who shared stories of Adam or their own personal stories, who helped take care of our kids, who bought us lunch or dinner, who brought us snacks and cut our grass, who offered to help with kids and cat and anything, who shared in our grief or even just listened. I know that so many people have done even more than all that. All these people have provided us comfort in these past days.

I am grateful for our friends who got married on Saturday in Virginia. Although it made for some stressful travel and it's not like we were just going to stop grieving, I'm glad we went. Many of my best friends from college, who welcomed Nasser into our circle 8 years ago, provided such support and comfort and listening ears in the last few days. Even the happy couple expressed their appreciation many, many times on their wedding day to us for being there, and offered listening ears in the midst of their celebrations. The weekend was just what we needed.
from left: Heather, officiant, Pete, people's heads.
Although it's not the best picture, I took it. I was there to witness their lovely union.

I am grateful we were able to experience some of Washington, D.C. Sunday night and yesterday. My good friend, Jigna, and I took an evening walk Sunday night by the Capitol building and some of the Smithsonian museums, and we stopped in an Irish pub near our hotel while Nasser stayed with the boys after they fell asleep. It was a rainy walk, but beautiful and peaceful. My favorite part was walking through the United States Botanic Garden. We stopped and smelled the various flowers and herbs and appreciated the meticulous care of the garden, by various projects who help disabled people through garden therapy. Yesterday, we were able to go the Natural History Museum and the Air and Space Museum on the Mall. The kids really needed that special time to do things they enjoy.

 Jigna in the rain







 from left: Jigna, me
We were "blinded by the light" of my phone flash. 
My eyes look so big and I'm totally not looking in the right place.









Nasser holding TK
This is on the train after flying back late last night. 
Poor TK finally fell asleep towards the end of the flight.

I am grateful for RG working on his project independently while I finish my blog. I guess we could have started it a little more before going out of town, but we still hadn't started the weekend after Adam died, so oh well. Of course we wanted to include pictures from our trip, which weren't printed until today while he was at school. He is going to talk about the Smithsonian Institutions, especially the museums we went to. I love my kiddo and am so proud of him.


I am grateful that I have a whole ton of people who support me in my life with depression. I am definitely a needy person in my illness. I know Nasser loves me through so much awfulness and I am so grateful to him for it, even though he does it without expecting any gratitude. But then I also need my friends and family who continually support me, those who read my blog and think about me, those who regularly ask about me and offer help, and those that just help without being asked to. I know that I am lucky to have all this support and that it is somewhat rare when it comes to mental illness. I know that Adam had a lot of support as well, but I know too that his illness was less understood by others and it did isolate him a lot. I wish that it had been different in that way. I know too that he didn't have all the right treatment he needed, much because his illness led him to believe he didn't need or want it. And I do have regular easy access to all the therapy/psychiatric visits I need, the medication options are so much better with fewer side effects. I am grateful that I have it "so easy" with my illness. 

This has been an important healing post in my grieving process. To all my readers, please never feel awkward to send me a message or comment on the blog, if you feel called to. It is here not just for me but for all of us. I don't expect others to share their own difficulties (unless they want to), but I hope that I come across as welcoming to all. We have so much work ahead of us in breaking down the mental illness stigma, in educating others and in raising awareness. Our mental healthcare system needs work, and it and all of us need more compassion.

My love to all my amazing support people in life and to my dear readers. I've said it before but I'll say it again. Hold your loved ones close to you today and always.

Again, here is the link to the memorial fund Laila set up in Adam's name. This will be split between brain research and NAMI (the National Alliance on Mental Illness) which does a lot of good towards raising awareness about mental illness, ending stigma, education for patients and their families, etc. You can also donate directly to NAMI for tax deductible donations. I additionally helped set up a memorial fund through Northwest Memorial Foundation. The funds here will also be tax deductible, eligible for company matching, etc. The Northwest Memorial Foundation donations will be going towards schizophrenia research and early interventions. 

Sunday, May 15, 2016

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

Wednesday, May 11, 2016

getting strong now, gonna fly now

Wednesday, 05/11/16, 10:48am

I had an anxiety/panic attack coming on this morning. Anxiety or panic, I'm not really sure. I suppose I should WebMD the two and figure out which one it is I'm having. I'm pretty sure it's more of an anxiety attack, since from what I remember of panic attacks, they get even more physical and are a bit more severe.

Let's be smart and WebMD them together, shall we? And yes, we're using WebMD as a verb, just as we do with Google.

...
    ...
        ...
            ...

Well a couple minutes on WebMD got me even more confused. I can't seem to find much information on "anxiety attacks"; every time I click a link that I think is going to be that, they start talking about panic attacks. And I don't think that's what I'm getting. The symptoms of a panic attack are rather severe and similar to a heart attack. I've never had a heart attack, but I don't want to put what I have in this category because it all sounds worse than what I get. Of course what I get is pretty miserable on its own.

When I feel what I call "anxiety attacks", my body gets really tense. I start ruminating over different issues I see in my life, however irrational they sometimes may be. I do have an increased heart rate, similar to panic attacks, and some of the other symptoms. Actually here are the symptoms of a panic attack, from WebMD.

Panic attacks are intense periods of fear or feelings of doom developing over a very short time frame -- up to 10 minutes -- and associated with at least four of the following:
  • Sudden overwhelming fear
  • Palpitations
  • Sweating
  • Trembling
  • Shortness of breath
  • Sense of choking
  • Chest pain
  • Nausea
  • Dizziness
  • A feeling of being detached from the world (de-realization)
  • Fear of dying
  • Numbness or tingling in the limbs or entire body
  • Chills or hot flushes

I get a few of these- sudden overwhelming fear, trembling (some), shortness of breath, dizziness (some). So yeah, could go either way on whether or not it's a panic attack.

I don't really care what we name these, but from now on I will be referring to these "episodes" I get with anxiety as "anxiety attacks". Someday I need to do a blog post on my personal definitions. How I define depression, mental illness, mental health, anxiety, depressive episodes, anxiety attacks. I suppose that many of my readers have a definition in their mind of these terms, but it's helpful to understand how I define them as well. How you picture a "depressive episode" may actually be very different from how I experience them which may actually be very different from how Nasser experiences and observes them (because he gets the lucky seat of both points of view).

This morning, I was panicking over everything in the upcoming weeks. We have a lot going on between choir concerts for me this weekend (which means extra rehearsals during the week plus both concerts, which means Nasser has a lot of added evening responsibility), Nasser is getting a boys night with my brother-in-law tonight since it's the night between the choir rehearsal nights and I wanted to give him some time considering all he's doing this week. Then my friend flies into town Monday night, Tuesday is going to be a packed day, we have a concert Tuesday night, and we're flying to DC Wednesday morning. Of course, that is going to be a super packed, super fun weekend, we're going to see a whole lot of people we love, many many friends, some family. I'm excited by everything that we have going on, but it is feeling super packed and stressful.

My wonderful sister, after hearing that I was panicking, came over to help. She took TK, with her son D, to my fabulous parents who will watch boys while she runs. Then I get the day to myself until picking up RG from the bus this afternoon. :)

I'm doing a lot better. And I wouldn't even say that I had a full-blown anxiety attack. I think it was the start, Nasser caught it early and suggested I take my anti-anxiety medication. I've gotten close to getting back into it again when I was talking with my sister, but it hasn't taken hold. I know it's not a full-blow attack, because if it was, it would have then triggered a depressive episode.

The goal today is to avoid that depressive episode. Because that's the worst I ever experience and it can turn really quickly from anxiety attack to depressive episode to full-blown depressive episode. I think if I were to define it now, a full-blown depressive episode brings up all those deep, dark, painful things that destroy my self-confidence and comfort and happiness and self-worth which then leads to the feelings of helplessness and hopelessness about my life. This place, without coping strategies, and continuous rumination, can lead to suicidal thoughts. It's a dangerous path, but I've gone down at various distances down that path many, many, many times. Today, I hope to stay closer to home, not beyond "start of anxiety attack".

I'm feeling really confident that I can do this. This is one of those times where, if someone were to tell me that I have the power to make this a good day, I'd say, yes, you're right. And look at me, I'm doing exactly the right things: blogging, getting ready for a bike ride, I accepted help from my supportive family. But if someone were to tell me that when I'm in a darker place, that statement turns into guilt and shame over being depressed. Nasser is learning to be more careful when he says that to me: that I have the power, that I can "do this". You really have to know which state I'm in, if I'm recovered enough to find confidence in that statement, or if that statement will trigger shame over the "but I don't, and I can't".

Well, dear blog, it is time to get on my bike. I have put it off long enough. Hopefully the weather stays good.

Monday, May 9, 2016

I've had my share of sand kicked in my face but I've come through

Monday, 05/09/16, 2:19pm

This weekend was super busy for us, but overall it was a fantastic weekend. The busyness started Friday really, at least for me and dragging the kids around to Costco, haircuts, and packet pickup (you know, for my 10 miler race on Sunday :) more on that later on). Got close to losing it in the car between haircuts and packet pickup, but I did recover. Then Saturday we had to pack up for the weekend since we weren't coming back again until Sunday evening! Had a friend's crawfish boil Saturday afternoon in the foothills of Boulder, the opera (The Scarlet Letter) Saturday evening in Denver. Then Sunday morning was the 10 miler followed by celebrating Mother's Day with family in the afternoon.

My big highlight I want to tell you ALL about is, of course, my 10 mile race. Every step beyond 9.39mi was my longest distance ever. It was incredible. It was quite hard, and the second half didn't feel great, mostly we think because of that diet Nasser and I started. I was limited by the diet on what fuel I could have and what I brought did not work well for running (they were like energy bars, but low carb. tasty, but quite chewy and didn't digest quickly enough to get energy from). I ended up stealing energy chews from my sister (oh well) and a little while after the race I encouraged myself to throw up, which luckily helped with the nasty nausea. But. I finished. And I'm recovering better than I thought I would be.

Enjoy some pictures from before, during, and after the race.

before the race, from left: the 10miler friends ; MRTT/SRTT (Moms Run This Town/ She Runs This Town) supportive running group- we represented at this particular race!

the start. I look nervous, which I was.

from left: Audra, me, Vida (me and my sisters). close to the turnaround point, after Vida had already turned around and Audra and I were coming up on it. Audra was nice enough to run at my slower speed.

this is one of the professional shots (which we are free to use, how awesome is that?). 
I love that we both actually look like we're running!

this was the point at which every step was the farthest distance I'd ever gone. 
what an incredible feeling!

coming in on the finish!!

me and my sisters :), my wonderful supportive sisters. Vida helped me along on my first 5k after kids and my first 10k just last fall (which was my longest distance at that point). Audra has been training with me and trading runs and childcare off with me since February to get me to this point. Can't believe I've come so far!

the amazing medal. I'm in love :)