Easter Baskets

We think we know what defines joy and yet we run through the days at light speeds missing each occurence.

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Easter Baskets

I kissed you today-
And for a moment it was as if nothing had ever broken.
The sun was all around your face and I felt like laughing.
I wanted to stay there- fixed, encapsulated, unchanged.
The heat of my happiness set off  explosions in my brain and I remembered you- drunk and smiling, dropping the Easter baskets all over downtown.
That day you were beautiful…you even pissed your shoes!
We think we know what defines joy and yet we run through the days at light speeds missing each occurence.
You’re sleeping now and I check and check
and check again, to see dark hair strewn across a pillow,
and one foot out of the covers,
While the stretch of your arm reaches out over my absence.
I want to pull you out of the bed and onto the floor.
I want to hold your face and cry out now!
It is now and we may not always have it!
Just today the cymbals were crashing and I’ll stay up all night to feel this in love.

Kimkoa 2010

 

Sing It Loud, Say It Proud

I don’t do this for myself. I do it for my children. For my daughter who will have her own children one day and may suffer as I did.

You never know what will happen when you reach out to someone. Not everyone is ready for a true friend. It’s taken me a long time to realize this. I still don’t understand it and take it personally more often than not.

I’m a transparent person. I have hurdles I have to overcome, battles I need to fight and I am an imperfect person something I don’t try to hide. I worry sometimes I come across as a toddler yelling “I make mistakes!” with a wide sunny grin as though it were a gift. Perhaps I do come across that way sometimes however I don’t think that’s something to apologize for. One thing about making mistakes is at least you know you’ve tried to DO something. You’ve tried to make a thing happen even if you bungled the entire operation from start to finish. Some mistakes are worse than others obviously. Still we learn from them, however hard the lesson.

My continual need to reach out to other people and share my story with them and hear theirs is just part of me, it’s who I am because of how my life has been. The joy I’ve experienced when I share what I’ve been through and someone else shares what they’ve been through with me and we each accept, forgive and love each other despite those scars is nameless. It literally cannot be touched. Because of this however, when I see an opportunity for that level of happiness and my attempts are met with a firmly closed door, or worse a mere dismissal as if my olive branch never existed I am so crushed, I feel so rejected that it’s hard to LET IT GO. I can’t MOVE ON. I want to know why I couldn’t reach them. Why they wouldn’t let me in.

The truth is, it isn’t about me. It isn’t about me at all. There are a million and one reasons why someone keeps the doors of their life closed and the shades of their heart drawn even against the brightest, most beautiful days. It’s their right to take solace behind a locked door. Just because I want them to feel the sun with me doesn’t mean they have to and it doesn’t mean that sunlight is any less beautiful. It’s just the way of things. It’s the way people are. For someone who is used to hiding, used to pretending to be “perfect” my openness and consequent awareness is off-putting. What? They say. How do you know me so well? Only because I am you I think. Only because I used to try to hide too.

This is how it is battling bipolar disorder. Battling anxiety, depression, self doubt. Battling any mental illness really. Once you accept that you need help and you ask for that help and you receive it, you want to share it with everyone else. And you become adept at spotting the same illnesses, the same broken pieces in others. You want to help them too. Even when they don’t want anything you have to give. Because part of the struggle is learning to break open that rusty lock and connect with others who feel the way you do.

I’m on a journey. I used to take a multitude of pills just to stay stable. Things are different now. It’s important to note I have been working with medical professionals and no one should ever EVER just stop taking their medication. I just happen to have a big mouth and a refusal to accept a regimen that isn’t working for me (restless legs, 50 lb weight gain, the inability to write, etc) So I used my big mouth and about a thousand phone calls and I now take one pill for my bipolar (lithium), one (will likely become two) pill for my raging ADHD (vyvanse), two for the anxiety brought on by OCD (gabapentin & klonopin) and one for sleep (lunesta). I actually tried ambien and had a psychotic reaction to it so if this has happened to you you’re not alone. I took the pill and 30 minutes later I told my husband- “The eye told me you have bodies buried in the yard.” Needless to say I never took it again.

Sleep is so elusive but my God it’s so vital especially when you’re battling mental illness. But who can sleep when there’s so much to do, so much to think about and everything whirls around in my head like a carnival ride you can’t get off of. It’s important to note that sleeping pills are EXTREMELY dangerous. The wrong one can change you into a psychotic mess. And if you’re extremely depressed, in large doses they will kill you.

I wrote in a past blog about how lucky I was and how much I loved my doctor. Well as usual nothing lasts. This is what we as people who suffer these illnesses go through. I put my entire trust in her and our last appointment she told me that although she was reducing her case load she would never drop me as a client. A week later I got a phone call from her office saying she would no longer be seeing me, I was referred to a new doctor and the earliest appointment would be in three months. I thought well of course that happened. So for the last two and a half months I have become best friends with the certified medical assistants who have been my bridge over this doctor-less sea of side effects and dosage problems. Insurance issues and complete frustration and loss of faith. If you ever see a CMA give them a hug. I don’t know what I would have done without them.

All is not lost however. I found out that this new doctor is an osteopath who specializes in treating people with psychiatric conditions using a combination of traditional western medicine and alternative natural remedies. Hallelujah! Praise the Lord! I may have hit the jackpot! I have been praying for this since I got sick. Because there are not just these diagnoses that hang over me like a witch’s cloak. I have polycystic ovarian syndrome. At the time I was diagnosed with Bipolar 1 I was suffering extreme postpartum psychosis, WHICH can last UP TO THREE YEARS. I also have uterine prolapse so I only ever go two to three days maximum without bleeding like a stuck pig. I also have cysts all over my thyroid so prominent you can see one of them sticking out of the side of my throat! Hmmm. How many conditions could the side effects of what I am going through mimic? How many doctors would want to throw pill after pill at me clueless as to why they don’t work? I’m not saying I’m not bipolar. I really don’t know where I fall on the spectrum of mood and mental disorders. I’ve learned that a pregnancy can shift a mild case of bipolar 2 into a severe case of bipolar 1. I do have many of the symptoms. I also have many of the symptoms of the other conditions I’m suffering. So who knows and really I HATE labels. We’re all humans dealing with different levels of hardship and whatever you call yourself, judgment and stigma must be erased from our vocabularies.

What I’m trying to say is that there may be more ways of treating your condition whatever it may be, beyond just pills. On top of pills. On top of pills.

I know I’m not alone. That’s why I’m speaking out. In the Netherlands their schizophrenic people remain integrated into society. People treat them with kindness. The reorient them into reality as a whole, as a group, rather than locking them away. Studies show they get better! They regain their grip on who they are and what is real. Now I can’t say that would work for everyone. It would be amazing but this society is so diversified and disconnected I have a hard time believing what works in a homogeneous social system would work here in the melting pot that is America. But the lesson is in their lack of judgment. The person is sick. Not evil, not gross, not to be shunned and avoided. Just sick. That’s all. It’s so simple.

When I was hospitalized I went on social media and asked for visitors. I asked for flowers. I let everyone know where I was and that I was lonely for companionship. One loving couple came to see me with flowers and a balloon. My aunt Nycki and Uncle Tom. They brought a card for Alice. Do you know why they came? Because their son suffers from a mental illness and they were not afraid of the behavioral health ward. Which by the way is calm, clean, full of loving nurses and good people. People who are ill just like anyone else. There are children and husbands who come and spend time with their mothers. They bring games and cookies. They bring the freedom of the outside. Their are girlfriends who come to see their boyfriends with paper bags full of sweatshirts, headphones, love letters. They hug each other. Long embraces. Everyone looks away as the tears roll down their cheeks. Usually one of the older female patients will bring tissues. Sometimes a tiny carton of juice. Of course there are the patients who sit in their rooms during visiting hours. Because no one is coming. That was never me. Even though none of my friends came, my aunt and uncle did. And my family was there for every visitation. I even had a birthday cake with real candles in my room surrounded by them. Another Aunt and Uncle sent flowers. A dear friend from high school sent flowers. He was in Hawaii and unable to visit. But he made sure to let me know he cared. But none of my friends came. Most of them ignored my obvious distress. I thought to myself here I am in the hospital, having been diagnosed with a disease deadlier than cancer and hardly anyone seems to care. But that’s how it is. People hear the word bipolar and they want to get as far away from you as possible. Women hide their postpartum conditions out of the very real fear of judgment. And then they end up in the hospital crying over why it has to be this way while their visiting babies fill up the ward with their sounds of new life.

For all of these reasons I sing out my story. I tell anyone who will listen about what I’ve been through, what I’m going through and what I have yet to overcome. I don’t do this for myself. I do it for my children. For my daughter who will have her own children one day and may suffer as I did. I do it for all the other people struggling under the weight of their diagnoses, their medications, doctors who don’t listen, friends who don’t care. I will never be quiet. And maybe just maybe things will change.