My apologies for the long delay. I think it won't happen again. I have been dragged kicking and screaming onto Facebook, and Susannah is starting to use Skype, so we should be part of the 21st century before it's over.
In the last month or so, Susannah and I have been blessed to receive an amazing outpouring of support: prayers, food, job security, money, furniture, kitchen goods, cat-sitting, tree-doctoring, landscaping, cleaning, and all manner of other things. Thank you, everyone, so very much. There is no way to even imagine negotiating all this without your love and support, in both the most general and the most specific matters.
I want to express something more than just gratitude, though. We have been deluged in generosity, and it's something we've had to think and talk a lot about. Our culture has an odd, almost paradoxical relationship to helping. “It is better to give than to receive,” as it says in Acts, and somehow this is translated, in American culture, into a notion that helpfulness is a sort of zero-sum-game, in which one person is ennobled and another is humbled. So much political rhetoric revolves around those points: the virtue of helping others, but the possible viciousness of receiving help.
I'm not trying to analyze this politically. Not here. Susannah and I have been lucky enough in our lives to be in the position to help many other people—many of you, perhaps. We have been struck, lately, at how hard it is for us to receive your help graciously when we need it, and to graciously decline it when we don't need it, or when it would be too difficult to accept.
This last point is really important, because we now have something of a timeline for Susannah's treatment and recovery. And it is one that will both require all the support you can give, over the long haul, and it will also place very serious restrictions on how we can accept that support.
OK, so...... Essentially, Susannah will go into Dana Farber in early January (we think), where she'll undergo about a week of very intense chemotherapy, designed to wipe out her current bone marrow (and with it her immune system). Then she'll be given a marrow transplant. This is referred to as “Day Zero,” and then we count up from there. For a long time after Day Zero, her new immune system will be fairly weak, and so she will be at an extraordinary risk of infection from dust and model and other vectors that the rest of us would...ah...just sneeze at. She'll be kept in Dana Farber for several weeks, at least, and probably cannot receive any visitors during this time. Then we will return to South Hadley, making frequent follow-up visits to Dana Farber. In the summer of 2010 we will likely return to Vermont.
However, for about a year after the transplant, we will be in pretty serious seclusion. We will not be able to receive casual visitors, nor will we be able to accept things like food, or clothing, or books, or really any other objects from outside our sterile world. Even things that are presumably sterile, like shrink-wrapped CDs, become one more thing to dust once they're here. We most definitely cannot accept any living things (e.g. no plants, no cut flowers, no marmots). We anticipate that most of these restrictions will taper off over time, but for many months, at least, we are going to be living “in a bubble.”
We're not entirely sure about all the restrictions will be in effect next year, but here are some germ-free things we would definitely be grateful for: electronic correspondence of all kinds, recommendations or links to books, websites, movies, and music. Pictures of you and your family and the world.
We love all of you and you are very important to Susannah's recovery, and to both of our continued(?) sanity. So we are going to have to get creative with things like Skype and Facebook and this blog and who-knows-what-else. Because we really, really, will not be able to give you a hug and break bread together. For quite a while. And even then, we might need to wipe you down in alcohol first, or just boil you for awhile.
In the last month or so, Susannah and I have been blessed to receive an amazing outpouring of support: prayers, food, job security, money, furniture, kitchen goods, cat-sitting, tree-doctoring, landscaping, cleaning, and all manner of other things. Thank you, everyone, so very much. There is no way to even imagine negotiating all this without your love and support, in both the most general and the most specific matters.
I want to express something more than just gratitude, though. We have been deluged in generosity, and it's something we've had to think and talk a lot about. Our culture has an odd, almost paradoxical relationship to helping. “It is better to give than to receive,” as it says in Acts, and somehow this is translated, in American culture, into a notion that helpfulness is a sort of zero-sum-game, in which one person is ennobled and another is humbled. So much political rhetoric revolves around those points: the virtue of helping others, but the possible viciousness of receiving help.
I'm not trying to analyze this politically. Not here. Susannah and I have been lucky enough in our lives to be in the position to help many other people—many of you, perhaps. We have been struck, lately, at how hard it is for us to receive your help graciously when we need it, and to graciously decline it when we don't need it, or when it would be too difficult to accept.
This last point is really important, because we now have something of a timeline for Susannah's treatment and recovery. And it is one that will both require all the support you can give, over the long haul, and it will also place very serious restrictions on how we can accept that support.
OK, so...... Essentially, Susannah will go into Dana Farber in early January (we think), where she'll undergo about a week of very intense chemotherapy, designed to wipe out her current bone marrow (and with it her immune system). Then she'll be given a marrow transplant. This is referred to as “Day Zero,” and then we count up from there. For a long time after Day Zero, her new immune system will be fairly weak, and so she will be at an extraordinary risk of infection from dust and model and other vectors that the rest of us would...ah...just sneeze at. She'll be kept in Dana Farber for several weeks, at least, and probably cannot receive any visitors during this time. Then we will return to South Hadley, making frequent follow-up visits to Dana Farber. In the summer of 2010 we will likely return to Vermont.
However, for about a year after the transplant, we will be in pretty serious seclusion. We will not be able to receive casual visitors, nor will we be able to accept things like food, or clothing, or books, or really any other objects from outside our sterile world. Even things that are presumably sterile, like shrink-wrapped CDs, become one more thing to dust once they're here. We most definitely cannot accept any living things (e.g. no plants, no cut flowers, no marmots). We anticipate that most of these restrictions will taper off over time, but for many months, at least, we are going to be living “in a bubble.”
We're not entirely sure about all the restrictions will be in effect next year, but here are some germ-free things we would definitely be grateful for: electronic correspondence of all kinds, recommendations or links to books, websites, movies, and music. Pictures of you and your family and the world.
We love all of you and you are very important to Susannah's recovery, and to both of our continued(?) sanity. So we are going to have to get creative with things like Skype and Facebook and this blog and who-knows-what-else. Because we really, really, will not be able to give you a hug and break bread together. For quite a while. And even then, we might need to wipe you down in alcohol first, or just boil you for awhile.
Again, and in advance, thank you very very very much.
Thank you so much for the update. You made it all very clear, and I can hear your voice in it, which is endearing.
ReplyDeleteMuch much love to you as you try to stay positive and centered in your Bubble. We will have our faces pressed to the glass.
You two are (and have been) on my list every morning, a germ-free holding in the Light, a wish and prayer for the best possible outcome.
Chris J
Your post graciously distinguishes between ways we can really help you, and ways we can harasses you while feeling really helpful;) Thank you!
ReplyDeleteBjorn was pretty excited about dropping things down your chimney so you wouldn't have to actually see us;) Sounds like that might not be such a good idea...
Sometimes one's life highlights to others their luck and makes them count their blessings (like health). However, in others ways you can inspire people--like your helping others learn about signing up for the bone marrow registry (thanks, I looked into it and did join). And we might think, wow, look at how generous they are in the midst of their concerns.
I don't think the helping-receiving relationship is ever one way. And I bet when you are helping others (be they students or farm workers or whomever) you didn't just feel ennobled. If I have the opportunity to support or give to you in a way you find helpful, I will feel lucky.
You are already on an amazingly rigorous journey and in January you to take it to the next level and have to literally do it alone. But you can know that we are all around you and someone is always thinking of you, so you aren't alone. We hold you both in the Light each day.
Laurel
Hey guys,
ReplyDeleteThe thanks go to you for taking the time to write this blog and keeping it updated. Missing you lots and thinking of you constantly.
Rachel Amosu
Thanks for your beautifully clear post. You have both been in my thoughts and prayers. I am sending beams of strong healing love and Light towards you both.
ReplyDeleteSarah N
Ethan & Susannah, thank you for this. I got out of the habit of checking your blob, but now I will do this often. You are in my daily thoughts. I've been using Skype to stay connected to my grandson Nathan - it's not exactly like face-to-face but it is quite amazing. And knowing the two of you - and your circle of support-, I can only begin to imagine what you will discover as pioneers living a connected, vital life from inside that bubble. Thanks for keeping us in touch through this blog. Peggy (and Shel)
ReplyDeleteSending you love from Cornwall, Ethan and Susannah, Gary Margolis
ReplyDeleteS&E this poem arrived today in my inbox from Garrison Keillor, and for obvious reasons, felt intimately appropriate... blessings from all of us - Alison & Joplin, McKinley & Anika
ReplyDeleteSusanna
by Anne Porter
Nobody in the hospital
Could tell the age
Of the old woman who
Was called Susanna
I knew she spoke some English
And that she was an immigrant
Out of a little country
Trampled by armies
Because she had no visitors
I would stop by to see her
But she was always sleeping
All I could do
Was to get out her comb
And carefully untangle
The tangles in her hair
One day I was beside her
When she woke up
Opening small dark eyes
Of a surprising clearness
She looked at me and said
You want to know the truth?
I answered Yes
She said it's something that
My mother told me
There's not a single inch
Of our whole body
That the Lord does not love
She then went back to sleep.
"Susanna" by Anne Porter, from Living Things: Collected Poems. © Zoland Books, 2006.