Okay, so I have not written as much as I planned to this past week (or at all). I've had a rough week and can't wait to go to the neurologist tomorrow and find out what he thinks. I was thinking about this appointment and how much I actually want to go and (hopefully) get some relief for some of my problems, and it reminded me how many appointments I had early on that I would've done anything to avoid.
I was pretty ambivalent about my radiation treatments until my hair fell out. It took me a long time to admit how upset I was about that. I don't know if there are phases or stages or whatever to that, but mine went something like this: make jokes about it. Watch the baldness grow with morbid fascination and cheerfully save it all for the wild birds to nest with. Become very irritated about the neverending clumps of hair on pillows, sink, etc. When radiation ends, wonder why it's still falling out. Fantasize about your friends and loved ones with their hair cut off. Promise God you don't really care about your hair... try to believe people when they tell you they hardly notice, they still think you're pretty, and they admire your hats terribly. Resent your hair for deserting you and your culture and your people for teaching you to care if it's there or not.
What is it about women and their hair? Why am I so vain? God did not create me so I could go around having hair (although he really did give me pretty nice hair. It's still in my desk drawer; I was just admiring it one more time). He created me so I could go around loving Him, praising Him, and loving everyone else in this messed up world. He gave me gifts and talents and people to love who love me. He made me to be His friend, I who know so little about loving or being a friend, and so that He could teach me how. He never meant this body to be permanent (nor yours, for that matter; just sayin'), never meant my hair on this earth to be eternal. it's all just dust and ashes and gone in a blink... okay, that actually does make me feel the tiniest bit better, BUT...
Unfortunately, guilt is not very effective on me, or at least it's not an effective deterrent to self-pity. I was (hey, am) still walking around feeling WEIRD without my hair. Oh! and don't forget the big scar that the absconded hair is not covering. When a couple of months had passed post-radiation, my hair had come in pretty quickly on the side without the scar, but the right, where the radiation beams' foci all exited my head and where the remains of my brain tumor lie (shhhh, they're sleeping!), I had only squeaky scalp.
Now, anyone who has ever lost hair will know what I mean by "squeaky scalp." There's a sort of hair-growth cycle wherein the scalp itself is naked and squeaky, then as hair begins to grow, it feels either prickly (if you shaved it) or downy (if it stopped growing and has to start again).
My church has an annual holiday that we celebrate and share with other churches with which we have an affinity. Friends from Atlanta and California came this year. I spent the Wednesday before the festival began frantically searching for hats. I finally found several and bought some trims to dress them up a little (it's a dressy occasion, at least the first night). Through all the preparations, I tried my best to stuff down these awful feelings I was struggling with--I was feeling ugly, gross, and just wrong. I knew people would look at me and see my illness; I knew they would be reminded what had happened to me this year and worse yet, I knew some of them would apologize, cry, or ask a lot of questions.* I was getting into what I refer to as a "state" and some people would probably call the beginnings of a panic attack.
So I did the only thing I, my good old natural self, knew to do. I went running to a Village mom, "snot and tears flying" as my Grandmother Joy says, and tried to unburden myself by getting it all off on her. Amazingly, she did not have the Magic Solution I was looking for. I have to explain, for Love's sake, that she did try to help me feel better. She told me all of the true things I had already been told: I'm still pretty, I wear hats so well!, everyone loves me, it'll pass, etc. These were sincerely meant to make me feel better, but if God wanted me to feel better, frankly I think He'd've spared me the cancers. She also offered me the best solution a human parent can often offer: to be with me, so I wouldn't have to be alone and embarrassed. She and two other friends came and got hats and scarves from me so they could wear them, too.
Was I satisfied? No. Please believe me when I say I wasn't just being selfish. I'm a logical person (but NOT by any means a rational one). My friends' long, beautiful hair showed under their hats; their dramatic, shiny, or curly twists and flourishes proved the hat was optional, an accessory. For me, it's necessary. It's how I keep people's eyes on my face when I talk and not my head; it's how I prevent idiots in Krispy Kreme from staring for five minutes, then asking me if I had an "operation on my head." I could not bar the ungracious thought that my friends could take their hats off after this one night and not be bald, sick, and wondering where their real selves had disappeared to back in March and if they were ever coming back. My friends, no, my sisters, tried to help me feel better, but I was not satisfied.
This has troubled me ever since. How am I such a horrible, ungracious wretch that even acts of love and solidarity don't move me, can't make it better? Seriously. It's scandalous, really. This is where I've been. But tonight I received a massive revelation: it's God's fault. It's all His fault.
(I'm still here, in case you're wondering. No lightning.)
God has unfinished business with me. There's a lot I haven't taken to him of my suffering. When something like cancer comes to a Christian, we know it passed through His hands. This made it really difficult for me to feel like I could cry to Him about it. I have a lot of questions, doubts, and complaints about what I've been through in the past year, but I didn't feel motivated to take them up with Him until I could find no other outlet for this deep and brooding dissatisfaction. This yearning, empty feeling isn't about hair or vanity or being embarrassed. It's about fear and suffering, and... I need solace. I think He wants to show me what love and friendship are, too. Even though I had an exchange with Him in the hospital the night before my surgery that changed everything I think and believe (and pretty well took away my doubts, permanently. I'll explain another day), I haven't exactly felt all easy and free with Him since. It's been a pause-giving thing to come to know without a doubt that God is real and to realize that means that He let me get cancer both in the same moment.
This, my fine feathered friends, is why I am still awake at 3:02 AM. It's a lot to work through, but it's such a relief to get it off on Him instead of carrying it around one minute longer.
Oh, one more very important thing: my Friends Who Wore Hats, I love you and in no way mean to demean the offering you made me in friendship, love, and solidarity, but I have discovered that He is a jealous God who won't allow us to be satisfied by each other instead of Him when He's calling.
I'm not proofreading this until tomorrow, but if I don't go ahead and post it now I might chicken out then. Please forgive any errors.
Love, Ashima
*Since I'm still waiting for "normal" me to show back up any second and feel quite brittle about how long she's taking, I dread the questions. And the crying is awful because I already feel bad for all my friends and family (worse than I do for myself by a mile) for everything they've been through on my behalf... awkward!
What if you woke up today with only the things you thanked God for yesterday?
Labels: cancer, gratitude, ingathering, prayer, shammah
One of my FB friends posted this query two days ago. It's one of those questions to which my first response is "ouch!" because i just didn't have a very grateful day. It's not so much that I was feeling UNgrateful as that I was just... busy. I was on a roll with an important (read: last-minute, down-to-the-wire, procrastination-limit-fully-reached) project, and I pretty much worked on it until my time for the day ran out. I was pleased with my progress and only had a little left to finish the next day, but it (I) didn't leave much time for other things.
Now, sometimes the work of our hands is surely a prayer, and in the case of this project, it most emphatically was. Remember the two people with cancer from my first post? This project was a scrapbook for #two, Paul Pavao. All of my love and concern and sadness and hope and desire for God to let me (selfish) and Chloe (still kinda selfish) and humanity (an unselfish afterthought) have a little more time with him are bound up in those pages. However, I wasn't giving vent to a real flood of thankfulness for the time we have already had in there, mostly just begging for more. It wasn't until we sat together in the woods with the Pavaos at our evening gathering that I was moved to gratitude for a weekend with them.
See, I find it is much easier to be grateful for the good things I have right now, or for the end of hard things I've been through, than for ever having been given good things that appear to have run out for now. THUS, to be perfectly candid with you, I have not yet come to a place of being thankful at all that I ever had cancer. Maybe one day I will; I certainly admire the heck out of my brothers and sisters who can find the grace to think that way. This is a major difference between me and Paul: I'm merely thankful for how God brought me through and out of my diagnosis and treatments, while Paul embraces his and thanks God for whatever it is He is invisibly, profoundly working in Paul's life.
(For me, it's like I can see that some good things happened (to/for me and to/for others) because of my medical crisis, but when I try to make the equation come out even, I still see negative numbers, impossibilities, null sets. Paul comes up with a perfect, elegant equation stretching miles beyond my imagination's boundaries. I'm still tangled up in the basics of trying to balance out just two sides.)
Fortunately, it was the first day of our Ingathering holiday, a festival our church observes once a year that includes lots of time to be together, a love feast at the Lord's table, and singing and dancing, especially in the company of bunches of people we love but whom we don't live near or see NEARly often enough, like our friends from Atlanta and California. I'm a reformed enough heathen at least that I remembered to breathe a prayer of thanksgiving when I saw my dear friend Ariel, for example.
If I had woken up the day my friend made her post with only the things I had thanked God for the day before, I would have (drum roll, please!):
So what would be on your list today if you woke up with only the things you thanked God for yesterday? A little food for thought. I'd love to hear your answers!
Love, Ashima
Now, sometimes the work of our hands is surely a prayer, and in the case of this project, it most emphatically was. Remember the two people with cancer from my first post? This project was a scrapbook for #two, Paul Pavao. All of my love and concern and sadness and hope and desire for God to let me (selfish) and Chloe (still kinda selfish) and humanity (an unselfish afterthought) have a little more time with him are bound up in those pages. However, I wasn't giving vent to a real flood of thankfulness for the time we have already had in there, mostly just begging for more. It wasn't until we sat together in the woods with the Pavaos at our evening gathering that I was moved to gratitude for a weekend with them.
See, I find it is much easier to be grateful for the good things I have right now, or for the end of hard things I've been through, than for ever having been given good things that appear to have run out for now. THUS, to be perfectly candid with you, I have not yet come to a place of being thankful at all that I ever had cancer. Maybe one day I will; I certainly admire the heck out of my brothers and sisters who can find the grace to think that way. This is a major difference between me and Paul: I'm merely thankful for how God brought me through and out of my diagnosis and treatments, while Paul embraces his and thanks God for whatever it is He is invisibly, profoundly working in Paul's life.
(For me, it's like I can see that some good things happened (to/for me and to/for others) because of my medical crisis, but when I try to make the equation come out even, I still see negative numbers, impossibilities, null sets. Paul comes up with a perfect, elegant equation stretching miles beyond my imagination's boundaries. I'm still tangled up in the basics of trying to balance out just two sides.)
Fortunately, it was the first day of our Ingathering holiday, a festival our church observes once a year that includes lots of time to be together, a love feast at the Lord's table, and singing and dancing, especially in the company of bunches of people we love but whom we don't live near or see NEARly often enough, like our friends from Atlanta and California. I'm a reformed enough heathen at least that I remembered to breathe a prayer of thanksgiving when I saw my dear friend Ariel, for example.
If I had woken up the day my friend made her post with only the things I had thanked God for the day before, I would have (drum roll, please!):
- a weekend with Hannah, Shammah (Paul) and their children
- two weeks with Ariel and David and children
- an Ingathering
- my sweet beloved daughter, Chloe
- an extra sticky-tape dispenser (in the back of my desk drawer)
- one 2011 CR-V from my grandma
- my bed (complete with awesome sheets and memory foam via Mom)
- and thorny vines plus long thorn clusters for a crown of thorns I made
So what would be on your list today if you woke up with only the things you thanked God for yesterday? A little food for thought. I'd love to hear your answers!
Love, Ashima
I have a story to tell. It's a big story, full of intrigue and adventure, impossibilities made possible, and imperfect people living imperfect lives watched over by a perfect God.
It will move wrong-ways through time and geography. It will start where I am and reach back to where I was, and it'll hopefully continue for a bit into where I am going. I hope you will listen to my story, that it will be some gift to you of encouragement, support, and just plain love, because the whole reason for me to share my story is love.
I'm going to start right where I am right now. This has been a big year for my household (I'll explain what that means in the context of my life later)--two of us have been diagnosed with cancer this year, two of us have teenaged daughters on the brink of supposed adulthood (hah!), and one of us finally(!) got the kind of job he's been dreaming of and working to take for several years. I am Ashima, and I am one of the first and second twos.
I was diagnosed in late March of this year with astrocytoma (after melanoma, and again, more later). One of the most significant characters in the story I'm sharing is My Brain Tumor. That's because I am hoping to come to terms with the experience and aftermath of my cancer partially by writing about it here as my God continues to work it out in me and reveal the way He has used it to show me just how much He loves me and has kept me through it all.
I was talking to a friend this morning (Susan Fitzpatrick, the mother of Jason Fitzpatrick of the Village Global in Mexico), and I was describing how God had worked through the different problems I have had over the past year or two to bring my cancer to light so that I could be treated. Now, every time I tell someone my story, I or they make yet another connection back to Him and things He has worked in my life that led to the amazing and miraculous way he has saved me--and indeed, is still saving me. Each time I talk, I receive a blessing of more assurance that He loves me, He keeps me, He is faithful to me. I REALLY want to avoid meaningless, mushy, religious claptrap in this story, because I want to talk to you as a friend and tell you a true and important story that will somehow be a gift that honors the reader too, and I want you to be able to connect with me and feel like I'm a real person... BUT sometimes I have to use old words to describe my new life, and besides, what is language but an assemblage of old words (more on that later, too)?
I was interrupted by a rather nasty disagreement over an unwashed chicken pot with my daughter, so I'll have to continue later... but I'm very excited to tell you my story, so it will be soon.
Love, Ashima
It will move wrong-ways through time and geography. It will start where I am and reach back to where I was, and it'll hopefully continue for a bit into where I am going. I hope you will listen to my story, that it will be some gift to you of encouragement, support, and just plain love, because the whole reason for me to share my story is love.
I'm going to start right where I am right now. This has been a big year for my household (I'll explain what that means in the context of my life later)--two of us have been diagnosed with cancer this year, two of us have teenaged daughters on the brink of supposed adulthood (hah!), and one of us finally(!) got the kind of job he's been dreaming of and working to take for several years. I am Ashima, and I am one of the first and second twos.
I was diagnosed in late March of this year with astrocytoma (after melanoma, and again, more later). One of the most significant characters in the story I'm sharing is My Brain Tumor. That's because I am hoping to come to terms with the experience and aftermath of my cancer partially by writing about it here as my God continues to work it out in me and reveal the way He has used it to show me just how much He loves me and has kept me through it all.
I was talking to a friend this morning (Susan Fitzpatrick, the mother of Jason Fitzpatrick of the Village Global in Mexico), and I was describing how God had worked through the different problems I have had over the past year or two to bring my cancer to light so that I could be treated. Now, every time I tell someone my story, I or they make yet another connection back to Him and things He has worked in my life that led to the amazing and miraculous way he has saved me--and indeed, is still saving me. Each time I talk, I receive a blessing of more assurance that He loves me, He keeps me, He is faithful to me. I REALLY want to avoid meaningless, mushy, religious claptrap in this story, because I want to talk to you as a friend and tell you a true and important story that will somehow be a gift that honors the reader too, and I want you to be able to connect with me and feel like I'm a real person... BUT sometimes I have to use old words to describe my new life, and besides, what is language but an assemblage of old words (more on that later, too)?
I was interrupted by a rather nasty disagreement over an unwashed chicken pot with my daughter, so I'll have to continue later... but I'm very excited to tell you my story, so it will be soon.
Love, Ashima
