Verse of the Day

Sunday, June 22, 2014

Of Anniversaries and Angiomas

Last night, my husband and I went out to dinner (thanks, Mom) to celebrate our 21st anniversary. How amazing that we haven't killed each other by now! But in the course of dinner and conversation, we inevitably talked of this lovely disease--- cavernous angioma-- and how is frustrates me to to end. I expressed my desire to find an expert in the field who could answer questions, and give me some perspective to the disease.

That's when my husband made an interesting comment that echoed in my mind all through the night. He said, "This isn't a disease to understand or manage. There's not much to do, and Dr. Willis has answered your questions. All that can be done is crisis intervention."

Crisis intervention. And I guess that's right. A doctor can give you seizure medications if needed. A doctor can track progression or regression of the disease. You can take steroids to reduce edema. A patient can opt for surgical resection or radio surgery. But really, there is not much to do but crisis intervention. There is no cure; there is nothing that can prevent the disease. For a person who likes answers---concrete answers-- this is difficult to swallow.

I have said to another friend that this disease is feels like you're waiting for the other shoe to drop. You just never know when the next wave of crisis is going to threaten you. You try to relax and trust the Lord, but your body defies you--- you're on constant alert.

Because the brain is plastic or dynamic, symptoms constantly change. One day feels like perhaps you're making some overall progress; the next day feels like the numbness has worsened. For emotion-driven people, like myself, not focusing on how you feel is very difficult. Telling yourself that you can not trust your symptoms seems so counter intuitive. How do you go on with the day, acting like nothing is wrong when in reality, you're treading water, emotionally-speaking?

The only way I can try to understand life right now is by viewing this whole dilemma through the Word. We are told to walk by faith, not by sight. We are told not to fear. We know we are never going to really understand all that we want to understand--- and that has to be okay. It has to be okay.

But this does bring me to another point of this post. If you do have cavernous angioma, it is imperative that you sign up on the international registry ( and get genetic testing. That way, you can participate in the gathering of information and on going research to aid in the hopeful discovery of a cure or treatment for this dreaded disease.

Until medical progress is made, and definitive treatments are discovered, I (we) must remember the only true hope we have (or really ever need) is the Lord. He must be my hope, even if a cure is found. So I wait. He will give me what I need.

Psalm 130

A song of ascents.

Out of the depths I cry to you, Lord;
    Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.
If you, Lord, kept a record of sins,
    Lord, who could stand?
But with you there is forgiveness,
    so that we can, with reverence, serve you.
I wait for the Lord, my whole being waits,
    and in his word I put my hope.
I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.
Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
He himself will redeem Israel
    from all their sins.

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