The Void and The Sun

"Moon of my Life."

Kahl Drogo

"My Sun and Stars."

―Daenerys Targaryen

What do you do when you sun, moon, and stars disappear from your sky? I am so sorry for not keeping this up. The last year has been very bad for Mr and Mrs Zebra. We have been waiting for my disability to come, and we got another denial letter, this time denial for an appeal. Mrs. Zebra had finally gotten into a therapist to cope with her anxiety, and as of Jan 1, had both health and mental health available. This is why we moved here: so we could both have the help we needed. But she couldn't hold on I guess. 

After planning Thanksgiving dinner with close friends, after holding me and telling me how much she loved me, after tell me I was "her big heater" and "I'll see you when you come home" after all of this, I found our home empty of the warmth and happiness that is my Mrs Zebra. Nothing but a note: "I am leaving you. I will not be back. I am safe." I have not heard from her since 9am on 11/27/13. She is avoiding everyone's calls and voicemails. I hope she really is safe. 

After speaking with our doctor, because we share one, all I could come up with was that she was more depressed than she let on. Maybe it is because she didn't want to bother me, or pull me down. I hope some day I will know. But when they changed her meds, she got so much worse. She must be in so much pain, because I know I am. I just want to hold her and stroke her hair and love on her. Her well being is all I care about. I only want to improve myself so I can be the pillar on which she can lean. I want to be her strength when she is weak. 

What do you do when your sun, moon, and stairs are suddenly gone from your life? The gaping maw of a black hole left when best part of you is ripped away with no explanation, no advance warning, and no immediate recourse? Without my love, my darling, I am a shell of a man, condemned to wander the endless void, looking for my lost soul mate. I know people say that you must be your own person, and I think maybe she lost herself in me, but I lost myself in her, weaving myself in her magical fibers, bathing in the wonderment that was her mind and body. When we touch, when I hear her smooth, silky voice, my world is complete. I can die happy each and every time she whispers in my ear "I love you. I will never leave you." She told me over and over I would never come home to this. But I am, and I am left to hope that she will contact me and someday, we can work this out. 

Almost 10 years of being with the most wonderful person I have ever known. She wasn't perfect, but I had learned and was learning to accept her for what she was, and in that she was perfect. -IS- perfect. The maw is so deep, it so fracturing my crushed soul, it feel as if she is lost for good. But if there is to be any repair of the bridge that connected our two hearts, she cannot come home to a broken man: the broken man who didn't realize he had become dependant on her to prop my illness up. No, not again. I am going to a therapist on Monday. I know he cant give me the answers I need. Only she can. But maybe he can help me find the man she married again, and present that to her again some day. Maybe she will get over her pain and anxiety, or learn how to communicate her feelings to those who want her to be happy. All I know for sure is I love her deeply, deeper than the deepest oceans, and I will not give up on us. I will give her the time she needs, and pray to whatever is out there to tell her I love her and miss her. 

What I know is that my sun, moon, and stars are gone. And the void is here. Deeper and darker than ever before. I want to tell her so bad, the feelings I have inside. To borrow from Staind:

My love, 

You're my world, the shelter from the rain
You're the pills that take away my pain
Youre the light that helps me find my way
You're the words when I have nothing to say

And in this world where nothing else is true
Here I am still tangled up in you
I'm still tangled up in you
Still tangled up in you

You're the fire that warms me when Im cold
You're the hand I have to hold as I grow old
You're the shore when I am lost at sea
You're the only thing that I like about me

And in this world where nothing else is true
Here I am still tangled up in you
I'm still tangled up in you

How long has it been since this storyline began
And I hope it never ends and goes like this forever

In this world where nothing else is true
Here I am still tangled up in you, tangled up in you
Im still tangled up in you
Still tangled up in you

Come back, my love, my wonderful wife. The best wife in the world, no matter how hard I was on you. I am working on that, I have been. I promise that I am fixing it. Cushing's or not, I will find a way to not let those rages affect you again. You saw I was working on it. I was getting better, and will get better. If disability wont help me, I will work what I can. I will provide a living for us. I will not let this sickness devour me anymore. I will do anything just to hold you in my arms. Please, my wonderful sweetheart, please talk to me. 

Without your love as my anchor, there is nothing but the void where our story ends. Please, dont let this end like a hollywood tragedy. Lets make this a sappy love story, where we both work on ourselves and come back and talk. Please?

If you can read this, my love, know I will keep the home fires burning. I will move mountains to be with you again. Whatever you need, as long as we can be together. I mean that. 

What a week.

I had the most amazing week of my life, and it was only for two days. I can't go into too much detail, but I will try my best to fill you all in.

I was in Phoenix teaching a nationwide team of medical professionals how to teach Drs, nurses and insurance companies how to use whole healing through treating the patient's whole as a person and not just their disease. It focused on patients with Cushing, a rarely diagnosed type of brain tumor in the pituitary gland . I had to go alone, as we had no one to watch the cat while gone.

It was amazing how interested and goal oriented each member of the sales and patient advocates were. They were so grateful for our input and really validated what we've gone through. They agreed with us that this type of tumor doesn't just wreak havok on your brain. It effects your whole system and subsequently your whole life. Therefore, the medications, radiation and chemo shouldn't be the only defense against this disease. It's so exciting to KNOW that there are real life angels out there that are on our side and fighting for us. Our disease usually falls through the cracks because it is so rarely diagnosed, that the diseases that are more rampant like breast cancer, leukemia, and heart conditions get the most attention and response due to the per capita patient to assistance ratio they get treated first because it's easier and more profitable.

I went with a fellow cushie and we met two others when we landed. In the two days that followed, I met many of you who read this blog. They were sales reps who are going to teach doctors about us, and about how many doctors have Cushing patients and don't even know it.

They each had to go through a month long "diagnosis" simulation where they got a glimpse of what it's like to just try and get validation. Then, they were walked through a 30min rundown on each of our lives using a sales app and our stories. Finally, they were treated to a very brief 45min talk where we shared what Cushing's has done to us and how hard living day to day was.

And afterwards, they called us heroes.

Let me repeat that. They. Called. Us. Heroes.

It still shocks me.

Heroes don't suffer like this.
Heroes don't get the shift like this.
Heroes do something to better others lives.

But I guess we are doing that last bit.

Between the steroids that the stress of it all caused to flow through my veins, and the extreme feeling of hope I feel again, I'm still coming down off of the high it created. Being in the midst of people, normal healthy people, who care about you, who believe you, who believe IN you, was something I have never experienced in my life.

Those of you who know what company we helped, please know that from the first email through my getting off the plane back home, I was treated with more dignity, more care, and more understanding than the vast majority of the health care profession. And I think I know why.

The man who diagnosed me was THERE! He left practice to consult with the people who are reaching out to doctors to re educate them on the reality of Cushing's. I was so upset to see him go, but he is truly doing "the work of God" as the saying goes. And it seems he is much happier too.

If I hadn't gone, I think I would have completely lost hope. I was close, for sure.

And in a way, I have. I got to meet someone who has been "cured" for years, and she explained to me that she never really got better. She just didn't get worse. So my goal is no longer getting better. My goal is to rearrange my life to suit this disease and what it has done to my body. It isn't ideal, but it is possible.

And it's a good step in the right direction, right?