It has been a strange couple of weeks. At first, I thought I was just having an unlucky moment of existence. But then, I realized that a) I don’t really believe in luck and b) nor do I believe in coincidences. As for why all the shit started hitting the fan at the same moment, I am still not sure.
The first event that occurred had to do with financing the SGN treatment. (Side note : I have to say that my parents are the best, most helpful, supportive people a girl can have. I can’t imagine how I would deal with all this insanity without their cool, business-minded heads and loving, nurturing bodies.)
From the beginning of this situation, it has been a difficult, tumultuous road. I don’t understand why the pharmaceutical company, the shipping people, the Israeli government and the Israeli Health Department are all so set on making this as challenging as possible. The red tape runs from here all the way to the moon. It’s insane. And let’s not mention the incredible additional costs of shipping the medication.
After weeks of bartering and fundraising and talking to banks and people and anyone who will listen, we have found a way to get the treatment to Israel, so I can begin. (Yay!) Who knew that you have to be business savvy and an effective haggler to get life-saving medications? I know this world is a crazy place, but this level of insanity is difficult to wrap my head around.
For each moment of dizzying bureaucratic nonsense, there is a beautiful person standing there helping me along the way. And I am so deeply grateful. I am not alone. (We are never alone.)
The second event of questionable sanity has to do with Israeli Social Services (called Bituach Leumi). Back when I was first diagnosed and starting treatment, I was assigned a social worker named Areej. She immediately became absorbed into our family unit and I see her more like a cousin than as my social worker. At first, my family and me were confused about what was happening and we didn’t know how to navigate the system. Areej was helpful and she made us aware of my entitled rights from Social Services as someone coping with a difficult illness. In Israel, the person is considered disabled and given a small, monthly stipend to help with expenses, considering the difficulty of working during treatment. In my case, I was given 100% disability by my oncologist.
Every year, there is a committee meeting at Social Services, where they re-evaluate each patient. Every year, I go in there and I’m honest about my current disposition. If I’m feeling bad, I say it. If I’m feeling well, I say it. I think cancer is enough to deal with, without me having to lie about feeling unwell.
This year, after my committee meeting, they decided I’m not sick enough. We received a registered letter stating that all my rights have been revoked, because I seem fine.
To get these rights from Social Services, you have to get a letter from your doctor and social worker. It’s not like a private person can go in and decide they want rights for being ill.
Strange. Very strange.
Of course, this will be remedied, but WTF?
And finally, the last weird event that happened this week. Yesterday, I received an email from a friend asking if everything was alright, because my blog (this very one) was deactivated due to a violation of the terms of agreement. I had to see for myself and it was true. WHAT?? How does that even happen? I understand that WordPress would be upset if I was doing illegal activity through my blog, but all I do hear is write whatever comes into my head and out of my fingers. I didn’t realize I was so offensive.
I wrote them immediately and they said it was a mistake and my account was reactivated.
So far, two out of three strange events were solved. Just one more to go.
But it sure was strange. And somehow, I’m happy that they all happened together, because it made me laugh. You can’t really be upset when it all happens at the same time. I felt like I had to let go. And smile. The universe is a strange, complicated mistress.
On a lighter, sunnier note, I went down to Kibbutz Lotanthis week. I lived there for a while as younger, more naïve version of myself. I love going down there and soaking up the sun and quiet. The desert is a magical place with very strong healing energy.
I love seeing my dear friends who have known me as I went through all the stages of adolescence. It’s home and a chosen family. My mother joined me for the trip. It was the first time she had ever been and we had a great time.
Kali was also part of the festivities. And she had a fantastic time. Here’s the proof.
This is evidence of her getting the best gift of all. Snuggling in our bed.
And here is Kali’s impression of the Sphinx. Notice both of her positions. No wonder French Bulldogs are called Frog Dogs.
It was a relaxing and nourishing couple of days. I’m feeling better and more optimistic. Wishing everyone a similar feeling of gratitude and nourishment.
love,
Healey
