Rochester Flowers

The flowers in Rochester are in full bloom. There are different flowers than the ones I see each summer in Lincoln. I’m rather surprised at the Rochester flowers’ hardiness. We’ve had days of hot, humid weather. The kind where even the outdoorsy people are seeking the solace of dark, air-conditioned rooms. The flowers, however, seem unaffected.
Mom and I went to the Mall of America today. I was thinking that the distraction and exercise would do me good since I’ve basically been lying in bed the last couple of days with the overwhelming fatigue, nausea, aches, chills and sweats. But, of course, I got caught up in things at the mall and ended up so exhausted (and hot!) that I gave myself a migraine, plus extra pain. I seriously need to figure out how to pace myself. I might have done a bit better if I had gotten in a good meditation this morning…
Also, I’m supposed to only be taking two doses of Imitrex a week. Period. No ifs, ands or buts. And since my neurology appointment I’ve had two doses. I don’t have the rain to blame anymore so I have to break the chain, otherwise I’ll keep getting daily migraines because my brain expects the drug.
Last night I was thinking about how central physical pain has been in my life and how I still have fears and expectations about it. As in, expecting that if I have to sit in the sun all day I’ll get a migraine. And then that thought or expectation generates fear of the pain to come. Some of my expectations are true, some can probably be overcome. It will take a lot of self-discipline, though. Meditation helps, too because then I learn to disassociate from the pain. I notice it, but I don’t have to be identified with it. This is a crucial journey for me as pain has been a major factor in my life since I was little and pain will most likely continue to be a part of my life until I leave this body.
Tomorrow are my last appointments unless the doctor decides to do another biopsy. This depends on how yesterday’s blood work looks. I hope we can go home, at least for awhile. I miss everyone and everything, Mom even more and I hope we can go for her sake. Also for Ginny who is very lonely. I got her some things at the mall, though they can’t really soothe my guilt over causing so much stress these past five weeks. Daily I must learn to forgive myself for things I cannot help.
I’ve been thinking a lot about what I should do with my life now, provided I become relatively healthy. It stresses me out because there are so many different things I want to pursue but, not having experienced them fully out in the “real world” I don’t know what would be the perfect fit. I know, then, that it’s all in God’s hands and I just need to follow my heart day by day. The right opportunities will be presented to me when I am ready.
But then think of all the projects I already have going or need to get done! Day by day, I tell myself. Life is very different now and it will continue to change. I must be gentle with myself in this time of change and adjustment. Day by day, moment by moment.

Read more...

Books books books

You would think I’d know better than to overload myself with reading expectations, especially when I’m doing the reading for stress relief or for learning to care for myself better. I become so overwhelmed by what I “should” be reading that I start too many books at a time and can’t give anything the attention it deserves or that I want to give it. Thus, days can go by without me getting any substantial reading done and I feel empty and frustrated.
So, I am affirming that I will keep it simple. Yes, there are a lot of wonderful books in the world that I would undoubtedly benefit from but I will go through them one or two at a time and trust that Goddess will bring the right books into my life when it’s the right time for me to read them. “When the student is ready the teacher will appear.”

Read more...

Mothering The Body

“In a way, mothering is the task before us all-to nurture ourselves while vigilantly nudging ourselves forward. This requires a balance between self-discipline and compassion.”-Natalya Podgorny, Editor’s Note, Yoga International Magazine, Spring 2011.

I know this concept well. Not because anyone taught it to me but because it is a lesson taught by human experience. Those who learn and apply this concept experience a balance in their life between rest and ambition (or whatever term you choose to express the healthy stress in your life). As someone with chronic pain and an incurable disease this concept applies to my life most often in a physical, illustrative sense.

I must nurture, care and listen to my body, treating it with love and respect. Sometimes this means forcing myself to rest for an hour in the middle of doing housework and sometimes it means taking it easy for a whole day. The self-discipline side of things come both when I “force” myself to take a break and nurture my body and also when I tell myself I’ve been lying down long enough and I should go outside and take a walk (I know I’ll feel better for it).

This balance comes from a healthy relationship with our bodies and our minds. The mind-body link must be established through listening to our body’s signals and learning from past experiences. The practice of meditation comes in handy here when we need to slow down and let our body tell us what the next step should be. For instance, I might tune into my body which is saying, ‘remember how good a nice stretch feels in the morning?’ and my mother-self says, ‘yes, let’s greet the day with spirit and movement’ but my child-self says, ‘nah, let’s just sit in bed until we feel more inspired’. Here is the mother nudging her chick to the edge of the branch to fly. The chick’s spirit wants to fly, her body wants to fly, yet her mother still has to give her a nudge in the right direction.

Sometimes I fall off the bandwagon for a day and I realize at the end of it that I really wasn’t listening to my body and spirit. Maybe I ran off with all sorts of things to get done when I should have taken more breaks or maybe I stayed in bed all day when I should have gotten in some more activity. In pain rehab at Mayo Clinic we called this ‘moderation and modification’. Everything in moderation-activity in moderation and rest in moderation. Modification means fitting your moderation to meet your body’s individual needs, which brings me back to the practice of tuning in and listening to the body. Everyone’s body is different and they each have their own individual needs. Only you know what is truly healthy for you and you can only find that out by experience and listening to your body.

Nurture and love your body by mothering it as you would a young child- with compassionate discipline. As I continue to practice this I know that, even though my body has its share of troubles, I am giving it the best chance I can to overcome them.

Read more...

Poetry

Well, I tried:

Not a Poet And I Know It
by Becca

Today there was sun
and chammomile tea
I got out of my room
to be seen and to see.

"Comin' out of my cage
and I've been doin' just fine"
is the lyric I think,
so those words aren't mine.

Not very good at this poetry lark,
but thought I would try
and at least make a mark.

I turned on the light
to write this all down.
Adjective, verb,
conjunction and noun

Getting this far,
I think it's apparent
why poems are something
I usually dare't.

Is that even a word?
I think that I'll stop
before I get caught
by the poetry cop.

The Visit
by Becca

No one ever visits
the sick anymore.
Why am I the one going
to other people's door?

This isn't a game,
it's not trick or treat.
Life isn't so tidy,
or simple, or neat.

All alone by myself,
day after day.
I would love to just see you.
Please, won't you stay?

I don't really think
I'm asking that much;
not making excuses,
not using a crutch

Almost five years
is a long time to wait.
So you'll find I'm still here,
it's never too late

To just drop by
for a quick spot of yea
to help pass the time,
together with me.

Read more...

'Neil', A Song

I know, I'm not very good and these videos are certainly not the picture of musical perfection. But it was really just for fun.

Read more...

12th Liverversary

March 17th, 2011

Today is my twelfth year with this liver. I was transplanted on St. Patrick’s Day twelve years ago. I remember it well. It was 1999 and my mom, sister and I were living at my Gramma’s house. My parents had just separated and my sister and I were going to my mom’s old school in her hometown of Lincoln, Nebraska. I was currently sleeping in the basement on the fold-out couch. I heard a small noise and was instantly wide-awake. I don’t think I was sleeping so well those days due to the disease and stress of the move. I sat up in bed and grabbed onto a frog stuffed animal I had been sleeping with. I thought I heard the phone ring and looked at the clock: Six AM. Who would be calling so early? As I waited to hear another sound that might clue me into what was going on I heard my mom’s voice very faintly. She sounded like she was talking to someone. I quickly put two and two together and my heart skipped a beat. Hardly able to believe it I made my way to the stairs at the top of which was the phone and my mom. I climbed quietly, slowly and unbelievingly up the stairs on all fours, stuffed frog still in hand. My mom finished her conversation on the phone and, after hearing it I was sure. I climbed the rest of the way up the stairs at the top of which my mom’s nightgowned form appeared.

“My liver is here, isn’t it?” I said.

Mom, who had a strange look on her face, replied, “That’s right. Get dressed quickly and get your stuff. We need to get to the airport.”

Soon after we were at a place by the airport called Duncan Aviation. There was a volunteer pilot there getting his jet ready to take us to Rochester, Minnesota where the Mayo Clinic was. An hour’s flight later we were driven by a charter car to the hospital. Preparation in the PICU (Pediatric Intensive Care Unit) took a couple hours. Washing in a special body wash, getting an IV started, being hooked up to all the machines and other such medical preps.

I remember being really excited and happy. Even after saying goodbye to my tearful mother and being taken to the ER I was in a wonderland of possibility. I was getting a new liver! Think of how much better my life was going to be! Not to mention all the stories I could tell my friends at school.

In the OR my eyes feasted on the biggest spread of medical equipment I had ever seen in my seven years of medical tests. A nurse was sorting huge buckets full of clamps. “It looks like she’s sorting silverware!” I said excitedly and expressed my frustration that I couldn’t stay awake and watch the whole operation. But all too soon I was falling under the powers of the anesthesia.

After only a week recovering in the hospital I was set free to live the rest of my life. But three years later the PSC came back and so here I am today. That wonderful liver that was such a miracle twelve years ago has been turned against me, although it still fights as best it can. This liver has been with me longer than any other and we have bonded very well. If you’ve never had an organ transplant you can’t understand the special relationship that forms between the organ and the recipient. I can’t quite explain it other than to say that there is constant communication between the two entities. Not only that but you acquire a few new memories that are not yours but that of the organ’s former owner. Even things like hair and eye color change. I got my wavy hair and green eyes after receiving this liver.

My mom never contacted the donor family of this liver and I have enquired of my social working about doing this myself. I was hesitant at first because this liver isn’t exactly being a ‘gift of life’ at the moment. But I don’t think I’ll mention that in my letter. I just want to try and express the gratitude I have towards that family for making the decision of organ donation for their child (I received an entire pediatric liver meaning that the recipient was probably younger and smaller than I was at the time). It’s really impossible to truly express thanks to someone for giving you a second chance at life when there were no other options but the point is that contact is made and this often brings the family closure.

I wish you all a happy St. Patrick’s Day. Please don’t destroy your liver with drinking on this day. Instead, raise your glass of appropriate beverage and say a toast to life. Today I celebrate my life and the amazing privilege I was given to continue living it when my body had almost given up. Life may be hard for me these days but it is, wholly and undoubltably life. And it’s beautiful.

Read more...

Marginalia

When I was a young teen and starting to read more voraciously than ever I ran into a problem. I had precious little money to spend on books and it certainly wasn't enough to keep up with my literary appetite.

My sister and our close friend Jessie often read the same books at the same time. There was no money in either family to buy books in threes and so what we did was see who would pay for just one copy. As our days were spent mostly in each other's company we were able to share that one book, passing it between the three of us.

It was then that we discovered a clever way of experiencing the book together. We would, each in turn, write in the margins of said book or make doodles. Sometimes the notes merely pointed out what we found funny, profound or satisfyingly romantic. Other times the notes took on a philosophical tone. As the book was passed along we would each write our own marginalia and comment on what was previously written.

The books holding these notes became treasures, personalized by our thoughts, written there as neighbors to the original text. Often we would re-read these books months or years later and marvel at how we had changed or laugh at our doodles and jokes. We began to date the marginalia as we started to put in new notes. Through this process these books became more precious than ever.

Now that me, my sister and Jessie have grown and have money to buy our own books the marginalia has come to a stop. I will sometimes write a little note next to a text but usually only as a reminder to myself about how I interpreted it.

When I saw this article, though, I decided that my books needed far more marking up. Who knew that others had discovered the same mysterious way of communicating with other readers that my sister, Jessie and I had? A way of communicating that has a magic that Facebook, Twitter or email can ever replace.

Though not quite the same, I was happy to discover that my Kindle ebook reader had a feature for highlighting and making notes on passages and that these could be shared with other Kindle users.

As long as there are creative readers out there who have opinions about what they are reading I doubt that the phenomenon of marginalia will never die.

Read more...