Piecing it all together

A piece of hand written white paper has been scotch taped on my kitchen pantry door for a few weeks. It says, "once we accept our limits, we go beyond them".


I have been struggling with limitations since February. I'm done with chemo. Done with radiation. I'm not medically stupid - I didn't think it would be smooth sailing from here on out, but I was so ready to get back to life and get back to living again.


Then the radiation fog descended on my little harbor, and ships couldn't sail in or out. Worse, the lymphedema train arrived at the same time, and chaos and frustration met - well slammed might be the better word here - on the loading docks of my brain.


For a lot of years of my adult life, whenever things were not going well, I would go digging. Gardening was more than an act for me, it was therapy. It was a gift given to me to work out the kinks in my brain. It was a gift given to me to work out the kinks in my soul. I used to tell my kids when they were home, that "gardening took the meanness out of me", and they readily agreed and gave me broad allowances to practice it.


If I could give a gift to my kids and grandkids that would help them understand life, deal with life, understand God and wrestle it all out in your soul with God - it would be gardening.


For many years, I considered myself a professional Bible School Teacher. I loved it. I anticipated the call from Violet Fisher every year inviting me to help teach again. I always thought it was something that the church actually got "right" - the idea that you load up the car with a bunch of neighborhood kids, take them to church, make it fun, teach them some songs, do a few crafts that mom might end up keeping forever, and tell them a few stories about how much God loves them.


Even more importantly was the idea that the teachers needed to make sure they were reflecting God, because it might literally be the only time that kid ever hears about God - and you don't - do not - want it to be a poor or bad experience in their minds forever.


With all that in mind, I was the one who benefited. The songs going through my mind at times are songs we taught the kids. "anywhere with Jesus I can safely go, anywhere He leads me in this world below".... Or the stories that some of the teachers told.


I remember Violet Fisher standing in front of maybe 600 kids one morning in her garden boots and garden dress - she always wore a dress, much like my mother, even when working, but she was standing up on the nicely carpeted stage holding a huge weed - complete with roots and dirt still attached.


She said "boy and girls, this is what sin looks like in your life. It might look nice for a bit, but look how big the roots are and I tell you what - it's really hard to pull it out once it gets started!" And everyone laughed seeing violet laughing and red faced from working hard already that morning; and I don't know how many kids remember that, but I sure do.


Gardening holds so much of life's wisdom. The only thing it cannot help me with, is not being able to do it now.


I have a lot of meanness piling up.


So when I got the above quote in the mail, I taped it up on my kitchen pantry door so I see it every time I have to get my pills out. I see it every time I reach for a super-healthy-non-sugar snack. I see it when I can't stand to look out the window, fully viewing my flower beds I have sweat and worked over year after year, that I'm not supposed to work in much this year, so I turn around and look the other way.


And there's the quote.


The anonymous 'quoter' was nice enough to add the source: Albert Einstein.


That makes it all the more worthy to me.


If Albert Einstein spoke or wrote about limitations, who am I to question the worthiness of walking that path?


***


I thought the path post-treatment would be easier.
My brain seems to be on vacation. Long Siesta. I could hang a sign that says "gone fishing". It's difficult to explain, but it just feels like the firings betwix my neurons has stopped in some areas, and my brain is searching out ways to go around those "road closed" signs that swing up when trying to do some things.


Sometimes, I feel like instead of going straight down I71 to Columbus, my brain has to do a huge detour to get to the same destination that was much easier a couple of years ago. The detour seems to head north to Toledo, then straight south through Dayton, to Cincinnati -- then maybe, maybe if the brain sparks enough, I might end up at my Columbus destination.


People who understand a bit, look at me kindly and say "it will just take a while". People who don't understand usually say "I'm the same way!" - only they're not - I've felt absent minded before, I've forgotten things before, but this is different - it's not just the traffic having to be routed to a different lane for a bit of road-work -- this is a three state detour going on inside my brain mapping system.


You lose so much to cancer treatment. Your health. Your hair. Body parts. Bodily functions. Friends.


All that I kind of factored in at the beginning. What I did not see coming and kind of hit me on my soft side, was that I would lost some brain function.


I have read two books in the last 19 months. I used to do that in three weeks. My reading comprehension is negligible.


My friend from book club sent me a book title and told me it was time to come back. She picked one especially easy for me to read - double spaced lines, less than 200 pages - and I read it. I really read it and couldn't believe I had read it. But I did.


Then we met to discuss it - and most of it was gone. I kept filling my mouth with yogurt so my mouth would be busy - I had forgotten most of it. What was even worse, I had just discussed it with my husband during the 40 minute car ride to the restaurant.


I have become comfortable using phrases like "remind me", when someone asks me if I remember something from last week, last year, ten years ago.


Sometimes, a prompt is enough.


Sometimes, I walk out of the room and cry a little.


When they cut my brain up for autopsy, I can tell you the very spot they will find damaged - I can point to it - it hurt a lot last spring during the last couple of months of my six months of Taxal/Carbo/Ro chemos.


I would wake up with blinding headaches at the same spot.


Last week at my three month oncologist visit, I wrote down a list of questions to go over with the two nurses, one study-drug coordinator, and my oncologist.


I got through the whole list, saving one question for last. I told her that I knew I would cry when I talked to her about it, so I saved it for last.


When does my brain come back?


When does it start thinking correctly again?


When do I quit waking up with a headache every morning?


Are those memory files I cannot access now gone forever?


Then I cried.


The memories of my children at home when young, are foggy. The memories of sweet things they said, sweet things they did do not recall easily now. There are gaps that I am afraid cannot ever be retrieved.


Every time I think about what is missing in my mind, I cry. I can't stand that - take some flavors of food from me - take my garden - take my books - take my ability to sit in front of a desk for time lasting more than an hour - take the sugar - take the wine - take the beef - take all that - just give me back my brain parts. My whole mind.


The part that makes me, me.


I told her I could not even balance my own checkbook. I told her I looked at a stack of mail on my desk every day and get overwhelmed and cannot stay in the same room with it.


I told her I could not remember my multiplication tables.


I asked her if it was from the radiation because after radiation is when it seemed to get worse. She told me it was more from the chemo - and that maybe I was just getting better and noticing it more now.


She patted my hand and told me I had nine months of chemo last year, ending with five weeks of radiation this year, and that it can take 24 months sometimes to heal your brain from the chemo.


I know some of my nerve endings are fried. I know my feet and hands twinge at times and react at times when they shouldn't.


All that I can live with. I can even live with the various "re-routes" I have had to do on my driving excursions - too many times I look at a sign on the highway and it takes too much time to realize I got off on the wrong exit.


I am just having great difficulty adjusting to a brain that doesn't have good reading comprehension. A brain that loses too much information. A brain that feels like a tornado touched down and wound a treacherous path too scary to look at.


***


My sweet doctor patted my hand and told me to start doing some brain exercises.


While I was in Columbus during radiation, I was quite the gad-about - imagine finally having white blood cells recover enough to where I could get out and walk into a store full of germs I had been forced to avoid for a full year. It was like being released from a prison - there were shelves full of glorious things - people everywhere - I would look and look and look and look.


And smile and talk to people.


People. My world had grown so small the previous year, then suddenly, it opened up again. Colors enthralled me. People talking turned my head and I would listen to private conversations of other shoppers.


I didn't even realize what I had missed, until I experienced it again. The "hello" from the clerk on the front register at World Market. The textures of the rugs hanging in a rack.


My sense of home style started to awaken a little again. It was awesome to think of something else other than blood-work and chemo after-effects and nausea meds - my eyes full of wonderment must have honestly made me look like I had just stepped off of a plane from a third world country.


When Dr. M. told me to do some brain exercises, I told her honestly that "I have been doing some". You betcha. I bought a book at Barnes and Noble on sale for $6 that was full of "brain teasers".


I hid it under the couch after one week.


I should have bought the geriatric, large print one that I lingered over instead.


So, fingers drumming on the table, my brain realizing it needs to repair, I reach into my ancestral DNA to think up a project - sewing! My mother and grandmother were champion quilters, and even though I have not quilted, I have made comforters, and I thought the discipline of figuring up how much material would be needed to make a couple of comforters for the "baby-room" would be the ticket to brain training.


I ended up needing 70 - 14 inch squares. Or 72 - 13 inch squares. You see the problem here. And in case you wonder, sewing is not cheap.


Not at all.


I could not afford the mistakes I was making.


But I kept trying. Scott bought me a rolling-cutter-thing, which was like the most wondrous invention of the last century - I honestly don't know how my grandmother lived without it all those years cutting out quilt squares.


(and yeah, the biggest miracle was not the fact that I managed to *not* cut my fingers off, which is very bad for lymphedema, but the biggest miracle was that Scott walked into JoAnn Fabrics with me and didn't feel the need to explain to me thirteen times how "this store has to be the seventh layer of Dante's hell".... that was the miracle on 32nd street in Wooster, Ohio a couple of weeks ago, folks...)


***


A friend of mine started a quilt some months ago. She has never quilted before, but her mother-in-law agreed to show her how. They bought fabric and decided that the MIL would do some fancy quilt squares and the DIL would do some log cabin squares, then they would all go together in one quilt.


The DIL worked diligently cutting out the fabric, then sewing all fifty-some log cabin style squares. They looked pretty good. But her MIL had also sewn her share of squares for the quilt - perfectly - and the DIL's squares were sadly not the exact, right, measurements.

They would not work together in the quilt. She had to rip them all apart and re-sew them to exact measurements.


I told her in my world, those 1/8 inch off squares would suddenly become "baby blankets", or a small couch quilt. I told her I wouldn't be ripping out fifty thousand seams.


But she did.


I told her last week that her quilt is a parable of her life - she spent much time shaping her faith and doing a lot of church work for a lot of years - all the right things Christians do - and yet she felt her faith was not what it should be. She has spent the last four years buried in study that would make a rabbi look lazy, rebuilding her faith.


She had her quilt squares all sewn together and they looked really good, but they didn't match up to the master quilter and had to be redone.


I could expand on this for pages and pages and might some day, but it's enough to say sometimes we have to examine our faith for flaws, or untruths, or just shady un-Biblical thinking and rip it apart, then sew it back together again so it matches up to the master's squares.


There's a lot of fallout from that - you lose some fabric because it cannot be handled and ripped that much. You lose time and regret that you ever had to measure up to another's measuring stick. You spend time making extra sure your measurements are correct this time around.


But the end result of a shared pieced quilt is stunning.


Her newfound knowledge of God and the very words of God - the Bible - are pretty stunning.


***


I put the comforters together. I still have to work laboriously over a piece of paper trying to figure out answers that I used to do easily in my head.


Now I have set my sights on something that caught my eye in Pinterest - "vintage-sheets strip quilts". It's absolutely brilliant - I can rip up vintage sheets that I get for $2 at Goodwill to my heart's content.


I am ripping them all into 6 inch strips. Some of them are 5 inches. Some turned out to be 7 inches. I don't stress over it too much - it cost me $2.


I'm trolling resale shops for printed sheets to go with the ones I have already ripped.


As I rip, something cathartic happens in my brain - I am taken back to watching my grandmother and mother rip the fabric for their quilts.


I am remembering.


I remembered how to square up a piece of fabric by ripping it on its grain. I remembered how some cottons just can't be ripped and you lay them aside for something else. I remembered how to foggily plan how these might end up going together.


So maybe the parable can go even further - maybe it's what is happening in my brain as well. It was all pieced together nicely, but then torn apart, and now I am needing to piece it back together again.


It's taking far longer than I anticipated. It makes me frustrated, confused and angry more than I like to admit.


While cutting notches in a sheet the other day getting ready to rip it, I asked Scott for the tenth time that afternoon what was 6 x 7? He looked at me and told me I would remember it.


I turned abruptly, thought about kicking his chair, then sat down and wrote down the 6's again.


42. 6 x 7 = 42 because 6 x 6 = 36. Adding 6 onto 36 isn't any easier than multiplying, but for some reason I wonder if that is how I memorized them all those years ago. I don't know.


All I know is that I'm ripping, and if you see any mostly cotton, printed sheets somewhere for $2 - let me know.