FROM JOHN:
The problem with increasing your self-awareness is that it could lead to becoming self-aware. It can be daunting in the best of circumstances.
I think I can make a good argument that Uma's circumstances are not ideal.
It has been truly miraculous how people have responded to her need for this rehabilitation. People from every facet and time in her life have given a precious resource to help her try to put her life back together.
I know that my writing, Erik's writing, everyone's texts, tweets, and facebook posts have inspired a large contingent of love and donations. But I don't think anyone would have given anything if they didn't believe Uma would do everything in her personal power to participate aggressively in this process. She is doing that.
She is digging in, showing up, trying, struggling.
For those of you with no trouble in your life, no bad habits, and nothing to improve, just skip the next two paragraphs.
Imagine yourself at a place that is not your home, away from family, and pretty much in one building 24/7. And in this place you are going to attend with deeply active participation and cooperation about 35 hours per week of work. The work you'll do will be to delve straight into every single area of your life that is troubling you. Imagine your worst traits, habits, secrets (even the ones you keep from yourself) all being exposed in front of many people and therapists for the sole purpose of improvement/healing. Imagine that you have no earthly idea how long this is going to go on and that for every 90 days of intense work you move an "inch" toward fulfilling your goals.
Now imagine that your "trouble" is that you can't open or control your right hand, can't turn your right wrist, jog, sleep very well at night, remember things said/taught to you yesterday, or read this sentence.....and imagine that you know that a lot of the brain you were born with is permanently gone, but that you remember precisely what it was like to have all that brain intact.
Uma is awakening to the bitter truth of her existence. She has been working incredibly hard for years but is now in a place where there is no "escape" from rehab. When she's done with her grueling day she doesn't come home to me. She realizes that after more than six weeks at Core she is improving but it is slow. After 6 weeks she is speaking somewhat better and her hand is looser, less spastic. But she still can't do so many things. The slow pace of her progress is the result of the severity of her injury and the physics of the human brain. Nothing about stroke recovery is exponential or immediate.
What is emerging, what is most difficult for her, is her renewed awareness of the passage of time. There were so many things lost for her after her brain injury and this was one of them. She had less awareness of the effects of time. This is changing and it's not all good right now. It's mixed. The "long haul" of this is weighing on her. She's always had an awareness of the amputation of her full function, but now she is facing it, her eyes are fully open to it. I don't believe you can emerge into something like this without significant growth and courage. She has both and is not giving up, slowing down, or caving in. She still can't wait to go to the next session.
Watching her go through this is very mixed for me. I so wish she could've been spared this struggle but know that, for her, there is either this struggle or a non-life.
There are two miracles: she lived through her burst brain aneurysm, and she has been supported by all of you. The rest is trench warfare.
I thank you again for helping to put her at Core. (I wish I could invent a word besides "thanks" that carried the weight of all my gratitude. Sometimes "thanks" seems so light). We have funding 'til about the middle of July. We will need it for much longer than that.
I'm leaving for New York for work this weekend but promise to find a way to post video and photos of my last visit with Uma. I think it will help show you that she is, in fact, going to make it.
Love,
John
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