Moments of Engagement

When I find out a couple is splitting up I panic. Being married is like being in a club. Marriage can be awesome, but it is also constant work and sometimes it really sucks. When someone else’s marriage ends, even if that person is a stranger or a celebrity it is frightening. If that person can’t make it, how will Z and I? Marriage is the hardest and the best thing I’ve ever done. But there is strength in numbers. Because the knowledge that it could suddenly go south looms large.

When someone loses their battle with mental illness it feels the same way. When a talented, beloved, financially secure, success loses his battle with mental illness it is debilitating. A week and a half later and he is still in my thoughts for much of the day.The pain that his wife and children and close friends are in is so overwhelming it nauseates me. I mourn him. He was a  stranger, but I also welcomed into my home regularly through the television. He never knew me. I mistakenly thought I knew him.

I didn’t know him, but I know his disease intimately. I understand the hopelessness that led to his decision. The fog so dense it physically weighs you down, the agony of moving through another day, the feeling of utter uselessness, knowing with clarity that your loved ones would be infinitely better off without you as a weight around their neck.

The chance for another episode of severe depression is greater for me compared to the general population because of my history. I look at my sons, my reasons for working so hard to be well, and I know if I became depressed again there wouldn’t be a damn thing I could do to prevent it. Manage it, yes. I am lucky enough to have a deep support system. But I cannot control my mental illness. I cannot will it away with sheer force or moxie or by pulling myself up by those bootstraps. More than 20 years with an anxiety disorder has taught me that much.

I am not depressed right now, but this news has settled over me like a heavy blanket, making it harder to take a deep breath, or engage in the word that feels fuzzy and just out of my reach. My constant companion, my anxiety has been more present. I worry. I worry about him, about where he is now, about if our souls go on, about what, if anything, comes after life. I worry about me, about my friends who suffer from mental illness, about my family who puts up with so much to help guide me through this life, about my still innocent sons who don’t understand mental illness, who shouldn’t have to understand it for a long time, but who will become very familiar with because of me. I feel guilt for the burden I am.

There have been moments of engagement over the last week and a half. I am holding on tightly to them. They aren’t always what I expect will snap me out of the darkness I feel.

Saturday morning I was dressing when C started screaming and crying downstairs. I knew he was probably ok, but the small part of me that imagined blood and destruction won out. I pelted down the stairs naked from the waist down and as I ran past the front door with the windows along its side I felt pretty damn sure no one would be ringing the bell at 10:30 on a Saturday morning. C was fine. Pissed at his brother, but fine. As I walked away from the boys the doorbell rang. The utter absurdity of the situation shook me out of my stupor.

The adrenaline rush of being stung by a bee just as I was finishing a particularly good run strangely made me feel joy.

The panic surrounding C when he pooped in his underwear while we were at friends’ for a cook out frustrated the hell out of me, but engaged me fully.

Reading the first chapter of the first Harry Potter book to T and watching his delight as he used his imagination to see what I was reading filled me with pure happiness.

My sweet, wonderful, hard working, speech delayed C looked up at me this morning as he said, “You go run?” His talking is enough to help me shake off the cloud of unease, but his recognition that running is part of who I am (after a life on non-exercise) made me proud.

So I hold on to those moments. I will mourn an extraordinary life lost as long as I need to. My lack of faith in religion will not stop me from hypocritically praying that the depression will never reoccur in my life. I get up every morning for my boys. I dress them and feed them and sometime even manage to take them to the zoo. They need me. And they motivate me to fight against the anxiety and the threat of depression. By needing me they have given me a priceless gift. The reason to live my life instead of hiding from it.

leonard men beach 2012

These three guys. I want to be my best for each one of them.

ice cream mess

A moment of delight from several weeks ago. He even managed to get ice cream in his eye. What a nut.

t jumps off diving board

One of the best moments of our vacation. It was so hard for my guy, who is anxious himself, to screw up the courage to jump.

The Bitch is Back

At three miles and change my throat felt full and I dry heaved a little. Home was over a mile away. I’d run almost two and a half miles away from the house to force myself into doing 5. It was a punishment run to make up for a shitty performance the day before. And instead of finishing I had a long, slow walk of shame back to the house. The best thing that can be said is I didn’t cry.

Earlier this week another mom in C’s preschool class who is an accomplished runner and I were chatting because we were both geared up for a run. I told her I was doing speed work. “By yourself?” she asked. “Yup.” I replied. “Wow.” she said, clearly impressed.

I felt like a total fraud. Here is what I wanted to blurt out: “I get so anxious when I’m doing a challenging workout that I don’t sleep well the night before and have hideous diarrhea up until the moment I actually get out the door. Yes, I have performance anxiety without an audience. If I actually had to do speed work in front of other humans I would probably shit out an organ.”

I’ve been working on not saying the crap that would make near strangers horrifically uncomfortable. Pat on the back, Karen. Instead of that word vomit, my tongue was bitten and I vaguely mumbled something.

The October Half Marathon? I’m not going to be doing those 13.1 miles in a vacuum. In fact, one of my best friends in the world signed up so we could tackle it for the first time together. She and her family came up from Brooklyn to spend the weekend with us and help us celebrate Z’s birthday on Saturday night.

On Sunday we went for a run together. I was so anxious I almost shit out an organ beforehand. I was so anxious I was running about a minute slower than usual. I’ve been assured by many that running with a partner is great fun. You get to chat and the time flies by. Um, right. I huff and puff with such vigor that I was unable to string more than three words together. Man, I was disappointed in myself. I felt awful for my friend who wasn’t getting much of a workout at all. It was humiliating.

Thankfully my friend loves me no matter what. She knows about the anxiety. As usual, she was nothing but kind to me. That bitch anxiety did not have A’s lovely manners. She told me I was an embarrassing, pathetic mess. She lied and said that A was regretting signing up for the half with me. She told me no matter how great life was right now that she would dog me for the rest of my life.

Unfortunately that part is true. Life is going well for our family, we are in a good place. But I am overwhelmed and ashamed of how my anxiety colors everything. Leaving the house is still hard every day. Why do we have cook outs in our backyard? So it’s guaranteed I’ll attend. Our friends have been so accommodating about letting us host, but I still feel terrible about it.

Z has a work fundraising event on Thursday. I’m already spun up about what an awkward fool I’ll be there. Yesterday my friend’s family and ours went to the Zoo. I managed to have a pretty bad anxiety event there. Last week I had to cancel my therapy appointment due to a babysitting snafu. I’m sick to my stomach over the makeup appointment on Wednesday because I feel so guilty about canceling and I just don’t want to face my therapist’s disappointment. And let’s not get started on the nausea I feel when remembering the panel I’m on at my first academic conference in June.

How ridiculous is all of that? What a staggering waste of time.

That’s what an anxiety disorder is. A sickening waste of time that makes you feel like a failure and a disappointment.

But here’s the thing. I will not let this fucking thing own me. I will not. Tomorrow is a rest day, but I will be back out there running on Wednesday. And Thursday. And Friday. I will go to Z’s work event on Thursday. I’ll drag my ass to therapy on Wednesday. And even if it takes all the Imodium on the eastern seaboard I will be a part of the fucking panel at the conference. Goddammit, I am doing a half marathon in October.

That bitch anxiety might be with me for the rest of my life. But I will not let her destroy me. I will not.

a and k post run

Still managed a smile at the end of the jog o shame.

sad and lovely elephant

Sad and lovely elephant we got to touch at the zoo. Her name is Siri.

luke fights palpatine

Luke Skywalker and Emperor Palpatine battling in the Death Star.

 

 

Who You Are

“So how do you feel?”

“Better. Good. I mean, I still cry a half dozen times a day…”

“What makes you cry?”

“Oh, you know. News stories. Stuff I read on the web. Every single time I watch Frozen.”

“But that is just who you are.”

It was a throwaway comment on the part of my therapist. At the moment I didn’t realize how much it would affect me. “That is just who you are.” The new medication is going well. And yet I am still who I am. What a tremendous relief.

One of the reasons the mentally ill are loathe to try drugs is because they don’t want to become someone else. They don’t avoid drugs because they think that their crazy defines them, or makes them unique, or gets them attention which are the reasons a lot of people assume are behind drug reticence. It is because they don’t want to lose who they have been at their core for their entire lives. I don’t want to lose who I am. It’s not like I’m so fabulous. But I’ve been me for 37 years. I’m used to myself.

With the right drug/s (and yes, finding the right drug/s can be a mighty struggle) you are still yourself. Just a functioning version of yourself.

Yesterday this post about a mother’s internal struggle with medicating her 10 year old who needed help showed up in my facebook feed. My heart ached for the anonymous author and for her son. As someone who needs drugs to function and sometimes to survive, as someone who worries I have passed my anxiety along to one of my sweet sons, I viscerally empathize with her.

At the same time I felt sick to my stomach by the time I finished the piece. I felt embarrassed and defensive and angry and hurt.

How do you give your child a controlled substance, addictive drugs, and act like it’s a normal thing to do?” she asks. She writes with brutal honesty about her struggle and I admire the hell out of her for it. But that question made me feel small and broken. I take an addictive controlled substance. I have every day for over a year. It is normal for me. I mean, what the fuck is normal anyway?

This mother. She is thoughtful, she is doing whatever needs to be done. “But on the other hand, how do you not try everything in your power to help your child who struggles every day of his life with demons you cannot beat down through sheer force of will and all the therapy money can buy?

Part of what hurts so deeply about the piece is she nailed it. All of it. How frightening and awful mental disorders can be. The fact that resorting to drugs makes you feel like a failure.

Psychotropic medication is a land mine of a topic. Controversy surrounding the over medication and diagnosis of kids with ADHD or adults with depression is well documented. And anecdotally who among those of us who went to college in the 90s or 00s didn’t know a dozen people who were given prozac at health services? The issue is real and a concern, but that isn’t what I’m talking about here.

I have mild asthma. When I occasionally have an asthma attack I use my inhaler and my attack stops. Every night I take a pill for my asthma/allergies. It effectively prevents attacks from happening the vast majority of the time. In fact, it is so effective that I started to believe I was taking it unnecessarily and let my prescription lapse. Two nights later I woke gasping for breath in the middle of an attack.

Brain drugs don’t work that way. Each brain responds differently to the type of drug, the amount, the time of day taken. And many drugs are prescribed off label, which means not for the use they were approved for originally. We just don’t know as much about the brain as we know about asthma.

Beyond the clusterfuck of finding the right drug is the fact that even if you have struggled with mental illness for years you have the nagging thought that you aren’t really unwell. You are just lazy and a coward. Progress is being made, but the idea that you should pull yourself up by your bootstraps and simply stop being sad or anxious or manic is prevalent in our society. Self loathing goes right along with many mental illnesses and it is hard not to buy into that, hard not to believe that you are making it all up.

And then there is the “what did I do wrong?” or “this is my fault” component.

During my lifetime I hope we get to the point where being treated with drugs for a mental illness is destigmatized and perceived as “normal” as using an inhaler for asthma. I hope it for the mother who wrote about her son, I hope it for that boy who is struggling, I hope it for myself.

mothers day

My sweet T and me on Mother’s Day.

c cow

Z took the boys to a big truck event at a local park yesterday.

t truck

T looks like a different kid with his short hair.

2 and 4

Two and Four for a little while longer. 2 wouldn’t look at the camera and 4 is doing all sorts of poses for the camera these days.

 

Zoo at the Zoo

Couple of weeks ago I was taking one of those time wasting “what are you?” quizzes that have been all over facebook recently. A handful of questions and it tells you what color you are. Z was reading over my shoulder. As the curser hovered across the choices he’d say, “Oh come on. Obviously you’d nap if you got a free day to yourself!” or “Go to a party or spend a night alone? Please. Alone every time.” My biggest concern was that I’d get orange (for newer readers I have an orange-phobia), but nope. I got black. The description was something like “you are in a bad place, but it is temporary”. It’s a stupid online test that clearly has a problem with introverts. It isn’t real in any way. But it made me feel pretty awful.

Life has gotten better this spring. The seasonal affective disorder that colors the first months of the year has lifted. I’m on new meds that (fingers and toes crossed) seem to actually be working. School is over and I met my deadlines. I’ve been managing my anxiety through expectations-the trip to New York and the UN was hard. I knew it was going to be hard going in and was ready for it.

When we pulled into the Zoo parking lot this morning there they were. Six full sized school buses with a river of children pouring out of them. The parking lot was crowded with their parent’s cars. As we wound through the congested pathway towards the entrance my heart climbed out of my chest and into my throat. By the time we got to the octopus display my throat was squeezing shut, doing its best to crush my heart. My pulse raced, I was lightheaded, my eyes burned and filled with tears.

Our zoo is usually empty when it opens. I assumed it would be today. The crowds caught me off guard and triggered the first full on panic attack I’ve had in ages.

The funny thing is I’d been doing so well lately that the stupid voice in my head has piped up with her opinion. She seems to think there has never really been anything wrong with me. My mental illness is an excuse in my head to be lazy. I don’t really have trouble leaving the house or dealing with large groups. It’s a lie I tell to get out of stuff. Because I’m a terrible person.

This morning I was reminded that I really cannot handle crowds, especially when I’m not expecting them. Of course the voice just changed her tactics. She told me it was pathetic that I couldn’t deal with a couple of buses worth of kids. I kind of agree with her.

When C started crying in front of the octopus tank I was ready to grab the boys and get the hell out of there. Instead we stayed for more than an hour. I’m not saying I will win any mom of the year awards for that hour. I was short with the boys. The damn tingling in my arm that accompanies the lightheadedness never went away. I fought tears until we were safely back in the car. But the boys did get to run around a bit. And I didn’t give in to this stupid disorder.

t in k hat

He pulled the hat right off my head. Yup, it’s still chilly here in Syracuse.

cadbury creme egg

This beautiful kid can destroy a Cadbury Creme Egg.

Back in the Saddle

If you’ve been kind enough to read here for a long time you’ve basically read this before. If you are my friend you have heard this before. I’m bored with this subject even before I begin writing…

The anxiety is really bad.

I’m having a hard time.

I hate myself.

I’m ashamed that I need drugs to function as a human being.

I feel like a bad example for my boys.

I feel guilty for occupying space in this world.

Someone as privileged as I am does not deserve to have a mental illness.

I’m trying a new drug.

Are you yawning yet?

I’m not doing very well. But the flipside is I’m kind of fine.

I’m taking care of the boys. I’m keeping up with my schoolwork. I make dinner. We host gatherings at our place regularly. When Z was part of a demonstration with Kronos Quartet I went and then went out to dinner with them all. I sat next to David Harrington and made small talk. I went to a fucking conference at the UN. I spent an evening with one of my best friends in the world and laughed and talked and felt….happy. Ok, so the jogging hasn’t been going well for about a month and a half. Last week I was only out once and this week twice. But god fucking damn it is March 23rd and right now it is 21 degrees with a biting wind. There was an inch of fresh snow on the roads this morning. And twice this week I took my kids to the doc’s (strep) instead of going for my jog. Life happens. And this weather is…well come on.

It would be easy to just wallow in how awful this disorder makes me feel without giving myself credit for progress. But I’m a Mom now, I cannot afford to be that self indulgent. I have worked hard and I am fighting back. It would be easy to stay in the place where I just hate myself and berate myself. Self loathing is one of the most comfortable states of being for me. I believe it with my whole heart, I’ve had years of practice.

This anxiety disorder isn’t something that I can fix or cure. It’s as much a part of me as my brown hair and freakishly pale and moley skin. That doesn’t mean I give up. In fact, I don’t give up anymore. I am in a really bad place, but I am fucking getting shit done. Do I cry a twenty times a day? Yup. Do I go to Z and tell him I can’t I can’t I can’t do it? Yup. Do I spend evenings after Z comes home in bed sure that I have strep myself, or a stomach bug, or cancer? All the time.

Do I finish my readings for class? I do. Do I turn in work late? I do not. Do I pay our bills? Mostly on time even! Do I make sure my boys feel loved and cared for? You bet your ass I do.

Things are not great. Z has to bear the brunt of it and I feel awful, guilty, ashamed. But I am also getting shit done.

The anxiety disorder didn’t just happened to me one day. It’s something that has always been. T has recently learned to say “Excuse me” after he burps or farts. I remember learning the same thing when I was his age. I also remember feeling terrible guilt and dread about all the times I burped and farted before I knew about the excuse me thing. After my parents tucked me in at night I would whisper “Excuse me” over and over and over to make up for those times I didn’t. I thought something terrible would happen unless I made up for my unknowing rudeness.

So it is a chronic condition. It kicks my ass over and over and over. It’s been kicking my ass since I was a little girl. And now I’m kicking ass right back.

The drug thing is the hardest part right now. Historically trying new drugs increases my anxiety. Ironic, huh? SSRIs, the class of drug most commonly used to treat anxiety and depression list increased anxiety as a common side effect. That’s how crazy people meds work. It is a guessing game and what is supposed to help you can make you much much worse. Abilify might have augmented the SSRI you were taking beautifully. It made me think I was losing my mind.

I was supposed to try a new drug after last winter’s experiment didn’t work. There was excuse after excuse-C wasn’t weaned, we were traveling, the fall is a really stressful time, the winter is a really stressful time, the spring is a really stressful time. Well, I put my big girl pants back on. New class of drugs, increased anxiety not a common side effect. In scary side effect world there just might be a rash that lands me in the hospital. I know one person who has taken this drug. After a couple of months that person’s hair started to fall out in clumps. But if this one works bald and crazy might be better than a nutjob with a full head of hair. And my Mom told me she’d buy me a wig.

The drug crapshoot began three days ago. If it doesn’t work we will figure something else out. Because even though I’m not doing alright I’m doing alright.

cheese

This little stinker. When he saw me grab my phone he shouted, “Cheese!”

hiding

My poor guy was hiding in the closet because he didn’t want to take his medicine after we got home from the doc’s office. I feel him. That violently pink “bubble gum” stuff smells disgusting.

boys better

Enough meds in both boys so they are no longer contagious or in pain. Strep sucks.

un pass

My UN pass!

Butt Burn

We are in the middle of a late season cold snap. Temps fell well below freezing on Monday and according to the 7 day forecast we have at least another week before we reach that magic 32F. It’s winter, it’s Syracuse, it’s cold. This isn’t a shocker. But our resistance is worn down. We aren’t asking for much, we know where we live. We don’t expect 60F in late February. We would be happy with 32F. You wouldn’t hear a peep from us till April.

On top of the cold it seems I’ve developed a bit ‘o the minor depression. It’s been a decade since the void and nothingness of major depression nearly smothered the life out of me. I pray to any and every god that I will never experience anything near to it again. These days I still feel. I feel everything. The feeling hurts. Even the love for my wonderful little boys is the kind that pierces me with pain. Some days joy is mixed in as well. Some days I can’t get there. But I’m grateful for the feeling, for the frequent tears that are constantly threatening. Feeling is infinitely better than nothing.

It’s cold and I’m sad. Which means I spend the majority of my time hunkered down on the heat register next to our fireplace. After a while of sitting directly on the heat it becomes too much and I move around giving my butt a break and warming my legs and hands. I also like to see how much I can bear. It’s a relief to feel too hot. Who cares if my butt hurts a bit?

Our thermostat is set to drop down for the night at 10pm. The register grows cold and I head to our bedroom which holds onto the heat much longer. Last night I was grabbing some water in the kitchen when I noticed my butt felt weird. I grabbed my cheek and felt a rather large bump.

“Z?” I called. “Can you come and look at this?”

He joined me in the kitchen and I pulled down my drawers.

There was a long pause.

“Oh Karen…….Your ass…….oh man.”

“What?” I shrilly demanded, panic rising in my throat. “What’s wrong?”

He started laughing. “It is red. I mean bright red. And the pattern of the register is deeply imprinted. Here, give me your phone. I’ll take a picture and show you.”

I handed it over as body shaking and uncontrollable giggles erupted out of me. I could barely hold still for the picture.

Sweet Mary. The picture. Suddenly my laughter was so out of control I was crying. My ass was scary red. And the rather art deco-ish pattern was ridiculous. I was branding myself with a heat register.

Listen, being I do still posses a small shred of decency the picture was immediately deleted. See? There are lines that I won’t cross. But I’m a little bummed not to share it with you. It really was fucking hysterical.

This morning Z told me if I got cold I should sit on the sofa with a blanket. “Oh yes,” I told him. “Absolutely.”

Guess where I am as I write this post.

The red butt is worth it. Haven’t laughed like that in a while. And man, it felt good. Really good.

heat register

If you need me I’ll be here.

boys do it too

They are only allowed to have brief sits.

bathroom window

Outside our bathroom window last week.

Dumb Dumb Dumb Dumb

A couple of days ago my friend made a facebook group for people trying to run/jog/walk 1000 miles in 2014 and then posted a status update about it asking friends to let her know if they wanted in. There is no way on god’s green earth that I am making it to 1000 miles this year. My jogging has been a solo endeavor. It actually needs to be a solo endeavor. I’m an introvert with a severe anxiety disorder. The thought of jogging with another human makes me want to puke.

So joining a running club or finding an informal crew to go out with isn’t really an option for me. I like being alone. People have explained to me that they chat on their runs with friends and it cracks me up. I’m gasping for breath the whole time. I cannot imagine carrying on a conversation.

All of that said, I know next to nothing about training. The idea of an online community of actual runners appealed to me-I could learn a thing or two. I wanted in.

Yesterday I was poking some fun at my slow running times and another person in the group suggested speedwork to increase my pace. I had to google it. I also was introduced to the fabulous word fartlek (Thanks, Kelly). Obviously the highlight of my day.

I found an article explaining speedwork for beginners and I decided to do it this morning. You want to know one of the most stupid and ridiculous things about an anticipatory anxiety disorder? I was so nervous to try intervals, so uncomfortable about stepping outside my established jogging routine, so frightened to try something new that I had the shits all morning. Like full on IBS diarrhea. The boys were almost late to school because I had to run back to the bathroom for the 12th time.

It is so embarrassing to admit how incapacitated I am by doing new things. Even after all these years of living with anxiety I am still deeply shamed by how hard it is to engage in normal activities. Before every class I take I feel sick to my stomach. My brain is generating a list of possible excuses to get me out of going until the moment I step into the classroom. We went to a birthday party this weekend at a gymnastic place. As soon as T joined the group he ran off to an area he wasn’t allowed to go to, one of the instructors telling him to stop. I yelled at him and immediately felt like a parenting pariah.  I blinked back tears as I stood there with the other parents, unable to make eye contact. Next month through my class I have the opportunity to attended two days of the Commission on the Status of Women at the UN in New York City. It is a huge deal. And I am so scared that I simply cannot bear to think about it other than to hope I am hospitalized with a non-life threatening illness so I don’t have to go.

But.

The classes have been fantastic for me. I am hoping to become a matriculated grad student. I have new career goals. My self confidence has been positively impacted. T and C had an amazing time at the party. I’m glad I got to see it. We are going to start T on gymnastics classes there next month. What a bizarre stroke of luck that I have a professor who is on the board of the largest Right to Food NGO in the world! Who gets to do this shit as a part of class?

So yes, my fear and discomfort when faced with normal life is suffocating. But the difference between the me of three years ago and me now is I am fucking doing stuff anyway. I am putting myself in situations that are uncomfortable because the long term payoff is worth it. Was the fear and discomfort any less three years ago when I was struggling to engage? Nope. It was not. I’m going to have it no matter what choices I make. So why not fucking try to enjoy life? Why not make sure that I get to see my boys’ faces light up with joy as they ran around with a pack of kids and have the best time they’d ever had at a birthday party? Why not GO TO THE UNITED FUCKING NATIONS?

Why not run intervals for the first time?

Because there is a difference between facing fears and being a fucking moron.

The roads were not very clear here in Syracuse this morning. Actually worse today than yesterday because we are in the city where alternate side of the street parking means today’s driveable part of the road wasn’t really plowed well at 9:30am. The side with cars on it was pretty damn clear, though. So I wore my amazing and trusty yaktrax. And found about a .2 mile stretch of flat blacktop. And realized when I got home that I hurt my foot. Yaktrax are magic. I can jog in snow without slipping at all. But trying to sprint in them? Let’s just say that I’m a fucking idiot.

Being an idiot is really the easiest way to get hurt while jogging. As soon as I hit the road I knew it was dumb to try speedwork. But I didn’t want to wuss out. Thankfully tomorrow is my rest day. We’ll see how the foot feels on Thursday….

********************************

P.S. I called the doc’s yesterday. Have an appointment for March 10th. Kinda proud of myself.

C jumps

C is missing the fear impulse. It was so cool to see him flying through the air.

hat hair

Short hair = amazing hat head.

swing

The swing actually resting on the snow.