LEMON-AIDE

This week is “Blogging for Blood Cancer” week.  I learned about the organization, Friends of Heroes and their call to bloggers, from ”My chronic life” a terrific blog about life with chronic illness, written by a brave woman named Connie who fights her own daily battle with chronic illness.  Connie not only blogged for the cause this week, she lives the cause, in honor of her sister who died at the age of 32 from Leukemia.  Her sister left behind two young children, her husband, mother and father and sisters and brother who loved her dearly.  Her death followed her diagnosis by only six months.

I blog today in honor of my dear friend who lives with a chronic form of blood cancer and has for over twenty five years. (She is a bit of a medical miracle as the prognosis of her illness is ten years).  She is one of the most courageous woman I know, not just because of how she lives her own journey with blood cancer, but because of how she has lived with the loss of her son to Leukemia when he was just nine years old.

I feel like I knew her beautiful, wise- browned eyed, little boy from the stories she has shared.  His bravery and his acceptance of death at such a young age, have touched me deeply.  They were a hardworking young family with four young sons before the Leukemia struck.  They had to work even harder after his diagnosis, both parents worked long hours in order to pay the medical bills to fight for their son’s life.  At the same time they cared for their terminally ill son.

I don’t know how they did it, and today I am inspired by their courage, their tireless sense of humors, caring spirits, steadfast faith and a “never quit” attitude. 

Friends of Heroes is dedicated to finding cures and being there for families who are effected right now by devastating blood cancers.  You can visit Friends of Hereos web-site at http://www.friendsofheroes.org/ for more information or to make a donation.

Thank you Connie for sharing ”blogging about blood cancer”.  You can read about Connie’s sister’s story and the love of Connie’s family in fighting for her, at My Chronic Life. 

A Hum or Two

Pooh Bear has found me

Came knocking at my door,

Under the pretense of craving honey,

But I suspect there is more.

Perhaps he heard that I, too,

Have become of little brain,

And fluff between my ears

Is all that remains.

Between spoonfuls of honey

He offers me a hum or two,

And tells me that hums and poems

“Have to find you.”

And now finding myself

A poet left with little brain,

I wonder if in the fluff

The poetry remains.

For if poems and hums find Pooh–

And Pooh found me,

I might stop pining for my brain,

And let the fluff just be.

Kerry Ryan

This little poem came to me after working with my youngest daughter on an English project about AA Milne’s’, The World of Pooh.  After I reread the book, I felt a bond with Pooh Bear, who talks of the “fluff between his ears” and being “a bear of little brain.”  Through Winnie the Pooh, AA Milne demonstrates (without intending to) the cognitive struggles that often accompany neurological illness. 

Unlike most of us humans struggling with cognitive challenges, Pooh accepts himself with humor and never a judgment.  He likes who he is; “fluff between the ears” and all. He doesn’t let it stop him from hunting a Hefalump with Piglet, mooching honey off of Rabbit or cheering up Eeyore with a birthday present of a honey pot with a well-intended message misspelled beyond reading. 

In the non-fiction world we live in, it isn’t easy being a human with a once reliable brain that is taken under siege by illness or injury. Simple words often can’t be found or the wrong word springs from one’s mouth instead, e.g. “Can you get the plates out of the computer please,”  and “don’t forget to turn off the cupboard!” 

Thinking, …oh boy what a feat thinking can be…to string sentences into meaning…the mental exertion can be truly exhausting.  Memory is effected. What day is it?  What month is it?  Geez, sometimes even what year is it!  Notes to oneself and lists become essential coping mechanisms.

When I hit the cognitive blips that I do countless times each day, I can feel frustrated and embarrassed. Sometimes though, I think of Winnie the Pooh who reminds me to lighten up, and laugh at my silly self.

The Unexpected

The unexpected shatters the march
Of moments lined up into plans
Poof, robes of control
Vanish like the emperor’s new clothes

(by, Kerry Ryan)

The unexpected, life’s guarantee!  Today is an unexpected “slug” day.  One of those days that follows a string of “pretty darn good” days…sneaks up tackles you, and slyly whispers “Ha, got you, today is mine!” 

I was getting a bit cocky, often do when feeling a little better. I start expecting to keep on feeling that much better, cause I want to!  (Hard to give up being able to take a morning shower- put on a cute outfit and a little make-up-get a few things done–hang out with someone I love– now and then completely forget that I have an illness!)

 Ah but the Unexpected has two sides.  What a joy after a string of “slug days” when a ”feeling pretty good day” pops in- or even better a string of them! 

Expect the unexpected–gift, curse or inbetween.  It reminds us to let go and that plans are illusive and the unexpected- certain.  Control, where does it fit in?  We can only control how we handle or what we do with the unexpected. 

I’m working on that today…It’s evening and after a day of wrestling with not being able to do a thing, (hating my bed, and my encroaching ”flat back”- “bed head” hair style, staring at my blue bedroom walls, chastising myself for not being able to what I planned to do today, worrying about how I’m going to do tomorrow),  I finally let go and starting having some fun writing this post. Hey, isn’t that a little control?  Nice.

Tonight I took my crocheting out.  I enjoy crocheting, it grounds me and it’s creative.  I haven’t crocheted much the last couple months because of a problem with my eye muscles.  Eye muscle weakness is a common problem with Myasthenia Gravis.  For some it shows up at the onset for others it shows up later.  A couple months ago I began having focusing problems, needing to close one eye to see better, at times experiencing double vision (sometimes they just feel like they’re “freaking out”).  Tonight I tried crocheting again.  I crocheted a couple rows and put my work away again–my eyes hurt.  (For some reason both eyes focusing on a single close up spot makes the eyes have to work hard.)

I’m sharing this because letting go of the activities we most enjoy is a common experience for those of us with progressing chronic illness.  Learning how to flow with this, adapt to it, has been essential to my own coping.  My best friends who are ill are creative people.  Creative by nature and also by circumstance.  Like all people, we have a need to be productive and to fill time with meaningful, enjoyable activities.  Most of us have a lot of time on our hands. Creativity is healing!  Creativity is sanity!

Before I became ill my creative outlet was music.  I played guitar, sang and absolutely loved writing songs.   After a few years I became too weak to hold down my guitar strings or to project my voice, so I found other creative outlets, I drew, painted and mosaiced.  Such fun I had!  Then my arms and hands became too weak to cut tile and my Orthostatic Intolerance too severe to sit up to paint.  I found a new creative outlet- crocheting.  Now, crocheting is becoming difficult…will I need to adjust again to a new, even gentler form of creativity or will I just need to set my crocheting down for awhile?  I don’t know but it’s got me thinking, because I’m not feeling stressed about it.

I think it’s because of what letting go has taught me.   I have developed a trust that I will find something else.  I don’t automatically think…”oh no, there’s nothing more I can do.”  It is because of this “illness” journey that I trust.  I have lost my ability to work, to be physically active, my music, my painting…and it has been okay!…I have found other life giving activities.  I know if I can’t crochet because of my eyes, I will find something else I can do.

I see the same lesson learned by my friends who are disabled with chronic illness.  They don’t give up, they do their creative projects when their bodies allow.  If they progress out of something they loved doing, they find something else to fill their moments and their spirits.

I think this is not only a lesson taught by living with disabling illness, it’s a lesson taught by all adversity…if we survive, we know we can ride through the next difficulty life blows our way.  We survive by adapting, by keepin on a going, by accepting what is.

If tomorrow brought me a cure, I would be jumping around, riding bikes with my family, running, playing my guitar.  I’d plan a backpacking trip for next weekend. I’d get a job–any job (working at a bookstore sounds awesome, or maybe I’d go back to school).  But, I would want to take the lessons with me that I continually learn through these years of illness.  They have changed my life perspective and given me much appreciation for the simple joys and moments of life.   I wouldn’t want to have to choose between a cure or the lessons I’ve learned from having to let to go…I’d want them both!

Today, I had to explain in ten minutes what is wrong with my body. I couldn’t do it. I can’t fit twenty years of complexity, that even I don’t have all the answers to, in ten minutes! I came away feeling as if I’d just relived the past twenty years of medical trauma, the doctors appointments, tests, referrals to one doctor than the next, and the next until you’ve made a circle back to the doctor you started with.  I feel like I experienced again the coming home from appointments to the big hopeful eyes of my children, or my mother’s hopeful phone call needing to hear that help and treatment are on their way.  

The voices of a few especially insenstive doctors resound in my ears, “Sorry, you do not fit into the five diseases in which I know about and treat…therefore I cannot help you.  I can refer you to the specialist next door (oh, that’s right he referred you to me). Okay then let’s refer you to the diagnostic clinic across the country (cost you two years of income), or I have a less expensive idea, how about a psychiatrist?  You never know, progressing loss of coordination on one side, paralysis of the stomach, movement and balance disorders, blood pressure and heart dysregulation, aphasyia, red rash plastered across your face, need for a walker or a wheelchair…sounds like it could be depression.”  (Yes, a doctor can manage to infer all of that with the raising of one eyebrow.)   And somehow, for God knows why, maybe because he’s a “doctor” I feel it - shame.

Why do I feel shame for being a medical mystery?  Why am I disenfranchised because the doctors don’t yet understand?  Why don’t the doctors carry some shame, or at least some humility for not yet having the answers?

Our knowledge in all areas of science, including medicine has only just begun. Take Astronomy. Astronomers are ecstatic about what they don’t know and have yet to figure out. I love watching the shows on the History or Discovery channels about space.  Last week I watched one on galaxies.  We know something about our own Milky Way Galaxy and a little about our neighboring galaxy “Andromeda.”  A smiling Astronomer told viewers that there are something like a billion more galaxies that we haven’t explored yet!  He didn’t say–well, we know there’s the Milky Way and Andromeda, there’s some others out there that look to be galaxies, but since we haven’t invented telescopes yet that can explore them, we consider them figments of astronomers imagination, we think their psyche has some need to believe in their existence.  They look like galaxies, they act like galaxies, they hold the contents of galaxies but until there is a telescope we deny their existence, so they are not galaxies.  There can’t be any more because we haven’t figured out how to get to explore others!  No, he was excited that he didn’t know it all, that he only knew a little bit of it.

I want an Astronomer as my medical doctor!

If I was an undiscovered galaxy coming into view of an astromers telescope, I’d be welcomed and celebrated for any different properties I have from already studied galaxies. They’d fight over being on the committee to figure me out!

Books, for some mysterious reason, seem to come into my life just when I need to read them.   This week my daughter and I went out to our bookshelves ( old book shelves stored temporairly in a room off our garage, while my husband is in the processing of building new ones.)  We visited our book collection in order to find a specific book that my daughter was interested in reading.  After I found it for her and she was glancing through it, I spotted a book my inlaws gave me as a Christmas present a couple years back.  I had not yet read it, for a reason unknown to my consious self, I did not want to,  until the other night.  My eyes went to straight to it and I felt a pull, I silent knowing…I need to read this book now.  I have read it everyday since and it’s contents are speaking to where I am at this moment in time…

The book is “Too Soon Old, Too Late Smart”, by Dr. Gordon Livingston, a psychiatrist who practiced for thirty years and professes learning most of his life lessons from his patients.  He also is intimate with adversity having lost two children, too early. I want to share a quote from the book as it pretains to his experience working with those who are chronically ill.

“I was at a conference recently where a presenter was reflecting on the burdens of chronic illness and he mentioned an organization for disabled people tht he felt was especially helpful.  As he paused, trying to remember the name of the group, the voice of a man in a wheelchair was heard throughout the large auditorium:  Not …Dead…Yet!”  “Yes”, the speaker responded, that’s it!”

“There is a lesson for all of us in such determination.  It’s not simply that we’re fortunate that there are people whose burdens are greater than our own.  It is that every life contains losses.  How we respond to them is what defines us.”

Dr. Livingston’s book is about life–”Thirty True Things You Need to Know Now”.  To read about chronic illness, in a book about life in general, is not the norm.  I found myself feeling “yes, we are alive and this man knows it, gets it and respects it –wow.”

I recommend this book to everyone…but I recommend reading it when and if you feel called to.  I believe there is a mysterious connection between an individual and a book that becomes a part of an individuals inner self.  Books whisper to you when they know you need them… 

Celia Nunnelly posted her poem “I Wish I had a Wheelchair” on Friends International, an online support group we both belong to.  With playful humor her words hit the heart of  a feeling all of us with disabling chronic illness can relate to.

I am honored that she gave me permission to post it. 

(The paragraph below is Celia’s introduction to “I Wish I Had a Wheelchair”.)

This poem was inspired by a story in the paper about a local quilt show.  The paper included some absolutely beautiful pictures. Because I cannot walk, stand or sit up for very long at a time, I cannot go to such events.  And, though I do own a wheelchair, it is a used chair that is not really fitted to me and is quite uncomfortable so I only use it for emergency expeditions.   But I got to thinking of the things I could do if I could afford to buy the perfect wheelchair, one made just for me.

I wish I had a wheel chair

I wish I had a wheel chair

built just for me

with nice big rubber wheels

and the perfect footrest

Iʼd go to the quilt show

and ooh and ahh

over every flower or star

stitched by loving hands

Iʼd go fishing

at the county lake

drown a few worms

catch a big olʼ catfish

Iʼd go to the grocery store

and terrorize the aisles

like a naughty child

whose mommy isnʼt watching

Iʼd drive it under the influence

of pharmaceuticals

that recommend using caution

when operating machinery

(perhaps I shouldnʼt mention that)

when I came home again

I would be in big trouble

I would need a hoist

to get back into bed again

and the next day

I would hurt so much

that I would hardly

raise my head from the pillow

but behind my eyelids

I would see quilts and catfish

and startled shoppers

and I would smile.

Celia H. Nunnelley

June 18, 2008

All day yesterday my hubby looked forward to getting off work and mountain biking in the foothills with his guy friends. Yesterday afternoon I was hit by my “stop me in my tracks” narcoleptic-like symptoms. These have hit me for years. I don’t get them often, but when I do, it is always unexpected and so far impossible to get of without going through them.

I suddenly feel sleepy, then sleepier. I fight to stay awake, I snack, I get on the computer, I snack some more, I look for conversation…(If I could exercise I would put on my running shoes or jump in the pool for a work out). I try everything I can think of to avoid falling asleep. I do this because when the sleep gets me (which it always does), I wake up unable to move at all, temporarily paralyzed.

Yesterday, when I awoke at about four in the afternoon, I laid on my bed thirsty and having to go to the bathroom. Since my body wouldn’t move I had to let both needs be and wait. Wait for my hubby to come home from work or one of my daughters to come in the bedroom and realize that I couldn’t move. Fortunately I only had to wait an hour yesterday. My husband came home early to go mountain biking.

When I put myself in this shoes, coming home psyched to do one of his favorite things, to ride the trails up and down the foothills, free of responsibility, in the company of friends, I can only imagine his disappointment at finding me unmoving on our bed. I know his first thought is that he needs to cancel his plans. And most likely “This really sucks!”

When my hubby found me unmoving, I slurred inaudible words (because my tongue wouldn’t move) “You are still going to go biking tonight!”  ”What?” he said, “ wait to talk until I give you your medicine.”  He put the tablet on my tongue and the tip of a straw in my mouth. I swallow water and the tablet. 

He told me he’s be right back and walked out of the room with the phone.  I could hear him call one of his biking buddies, “There’s a chance I won’t be there. Go on without me” He said this without any self-pity. I wanted to scream, “You’re going to go! Don’t let them leave without you!

When he came back in the room, he stood beside me and put his hand on my arm. I frowned at him, feeling terribly angry. I was not angry with him but at this illness that dares to take his one night of freedom away. I yell at him softly slurring–”Call them back. Say you will be there! The medicine will help, I’ll be okay.”  He told me I was too sick and that he needed to stay.  I “yelled” at him again.

He did call them back and they gladly gave him time to set me up with what I needed –a trip to bathroom and water, food, cell phone close to me. He went, reluctantly, emanating guilt and worry.

The medicine did help (along with time). After awhile I was able to pick up my laptop. I felt like trying to write a poem. I am not a great poet, not even a good poet, but I love when words fall out of my brain, over my tongue and onto a page. I wrote a short, not so good poem, and enjoyed it.

When my hubby came home, sweaty and happy, he asked if it’s hard for me when he goes biking and has fun while I’m stuck at home. “No” flew out of my mouth, because it isn’t hard for me. I feel happiness …I feel alive. I feel released from my own guilt for being sick and needing him to care for me.  Knowing he is out there free in the hills, I feel triumphant!

When I write a poem, any poem, like I did last night, I have the same feeling of triumph. This illness makes finding words difficult and putting them together even more so. I am exhausted after trying. But when I can write, however I can write…for that time, this illness can not steal my love for playing with words.

What a night…a mountain bike ride and a poem…anyway.