What I’ve Learned So Far

For what it's worth:

1. When you get the bad news (be it cancer, MS or whatever), let it sink in--but not so long it endangers your health. The immediate first reaction of loved ones is to push you toward a course of action in the next five minutes. Obviously. They love you. Your obvious reaction is to push back NO. Why? Consider that the diagnosis has just knocked the wind out of your sails and, if I might suggest, given your sense of control over your own life a thorough whuppin. You don't need anyone else micromanaging your health, thank you. Acknowledge that, respect it, but then take control back, not by inaction but by resolve.

2. Read Lucky Man by Michael J. Fox. He takes you through all the denial, avoidance, and acting out you're ever going to do, in a compellingly honest way (about his Parkinson's). I cried reading that book because it just felt like he had watched me over the past year and was calling me out as a mother, as a person with a future, and pushing me to both acceptance and battle by telling his own story.

3. Recognize that acceptance is not the same as defeat. In fact, it is the first step to winning your battle, whatever that victory is going to look like for you. I had to stop working with clients. I had to give up my business for the time being. I had to admit to friends that I wasn't invincible. All of which s*cked. But it was time to accept it and move on. I so strongly believe that you can only get to your next place in life when you let go of things that can no longer help you, no matter how comforting it may be to hold on. My next place, unfortunately--and fortunately!--was here. My place after this will not involve working with clients, something I could only have concluded as a result of this happening. The next half of my life will be something different, and I'm now glad I finally managed to let go of my other "stuff-that-defined-me". Something new is going to define me, and I'm still figuring out what that will be. It won't be what I used to do for a job, and it certainly won't be aplastic anemia.

4. Ask family and friends to help you out--and then trust that they will. I didn't lean on my friends for a long time, partly out of (see above) denial, and partly out of perhaps a latent suspicion that I'd be asking too much of people who I knew loved me--but why really push the issue, huh? The hardest thing I've done with this is be open to--and accepting of--help (see control issues above!). But it must be done. And sometimes, only in your saddest and weakest moments, do you realize how strong are the bonds that surround you. And, ironically, something about that makes you feel more optimistic and more in control.

5. On the same note, feel free to set limits about where others belong in your life, when you want to talk, what you want to talk about. I used to always stop my Dad mid-sentence when he was regaling strangers with our health issues with, "Can you please not discuss me in the third person like I'm not even here? This is my business!" Just yesterday, in gross unwellness, I said to a visitor, "Can you please just stop chatting?!" The talking was hurting my head and I just needed silence. Sit and visit if you want, but silencio por favor. And I also set limits on what people should say around Bambina. No one is allowed to call me "sick" because I don't want her to think that if she or anyone gets sick, like a cold, that they'll end up in the hospital. We use the words "aplastic anemia" even though it's probably like that Charlie Brown grown-up "wah wah wah wah" voice to her, because I don't want her to think that if someone goes to the hospital for something else and perhaps doesn't survive or comes home without an arm, that that will happen to me. My situation may be public but I have the right to ask others to speak to my child in the way I prefer. Whiners and naysayers get shown the door.

6. Finally, a thought from the Hasids:

I fear the things that cannot hurt me;
I yearn for things that cannot help me
What I fear is inside me,
and inside me too is what I seek.

And finally, finally: feel free to disregard this whole post. It's your diagnosis, your choices, and your life. I'm just some schmucko chatting into your poor hurting headache.