Love in a Time of Loss

Right now a woman is lying in a nursing home not far from my home, asleep and unaware.

She is my friend, and she is dying. A few months ago she stopped taking the chemotherapy that was turning her skin into on huge painful blister. It was the fourth round of chemo and was only intended to postpone the inevitable. Four month without more chemo, they said, and that seemed like such a long time. But that was three months ago.

Last week Janae and I planned Thanksgiving dinner. She was bringing yams with pineapple and pecans and marshmallows on top. I told her we'd give her a ride if she didn't want to drive. No problem, she said. It was Wednesday last week, nearly a lifetime ago.

Friday I got a call that she was in the hospital. Saturday morning I opened the door to room 622 on the Oncology Wing expecting to see my Janae sitting up, commanding the nursing staff from her bed. Instead I found her tiny and gray, curled under the blankets, sleeping so deep it seemed she was in another world. When she finally woke, she told me where to find her will. How to call a friend in another city. Who should get her pearl jewelry. She fell back asleep every few words and I had to wake her to finish each sentence.

Is it drugs? I asked the nurse. She shook her head.

You know the head shake. The one that comes with the tight smile and the set facial muscles. You see it all the time on television medical dramas just before the words "I'm afraid the news is bad."

The news is bad. The disease that has eaten her kidneys and swollen her liver so big it has pushed her stomach out of place has found its way into her brain.

Amazing things have a way of happening when life is short. Old friends find their way to the hospital bed. Estranged family members remember the love and fly into town. Good people find time to visit someone they never met for love of a friend. Through it all, flurries of emotion and care-taking erupt and subside all around while Janae sleeps at the eye of the storm.

Everything has been done that can be. All the phone calls have been made. The lost children have been found. We are all watching Janae together now, holding her in our hearts while starting to let go, praying her passing will be easy and peaceful.

Today I will spend Thanksgiving with my husband and sons and a pretty girl named Kait who will find it difficult to make it through dinner without holding my younger son's hand. Janae will not be with us.

Instead she will be three miles away, hard about the business of dying. It isn't easy to watch. Janae's body has more life in it than most. I fear that it won't let go without a hard fight. But in the end, the body will give way. It always does.

Janae's faith instructs that when her soul leaves her body it will be rejoined with the Inner Master and then will find its way into another life, one that will be better for the hard lessons learned while ensouled in Janae. I hope she's right. I hope that her soul's next life will be as part of a large, close, loving family. Maybe my soul's next life can be a next door neighbor.

Sometime tomorrow morning I will drive to the nursing home. I will sit beside the narrow bed by the window in Room 29, holding Janae's hand and telling her stories of Thanksgiving day. I'll bring some bit of stitchery to show her in case she opens her eyes. I'll tell her to hang on a few more hours, long enough for her daughter to arrive with Janae's newborn first grandchild.

I will leave her then to her sleep, to the kindness of Hospice caregivers, to the hard business of cutting the cords that hold her to this life so she can fly to the next.

Internal Rumors

When I finally felt well enough to wander downstairs to my sewing
room this week, I discovered that while I was sick my sewing machine had
developed a glitch. After two days of trying to resolve the problem I
gave up and toted the thing to the local sewing machine
dealership/repair shop.

The proprietor of the shop is not known for
her people skills. While I explained the problem she stood well inside
my personal space comfort zone, looking straight into my eyes while I
talked. She looked briefly to my machine and when she looked back at me I thought I saw the eyes of my fourth grade teacher Mrs. Humber, who has been the subject
of one or two complete therapy sessions.

'Is your machine threaded now?' she asked, a bit on the shrill
side.Yes, I told her.

'Did you know that the thread isn't in the tension hook?' Still
staring at me, nearly nose to nose.

I told her I knew quite well that the thread was out of the tension hook -- a total lie. But I was channeling my own fourth-grade self and feeling vulnerable.

'Well have you forgotten how to thread your sewing machine?' The question
was so rude and so out of line and her eyes were so unblinking and I
said 'Oh come on' the way people do now.

But I blinked. And she didn't.

In that horrible instant standing there in the gaze of a
woman who owns a small sewing machine dealership in a small town in an
underpopulated state, I was judged and found stupid. We both knew in that instant that maybe, just maybe, I had forgotten how to thread my machine.

I forget a lot of things. It's not the 'now where did I put the keys' sort of thing. My forgetting is a bit more functional. You see, the autoimmune disease that catapulted me into the ranks of the chronic has affected my cognitive abilities. I know this for a fact because in order to qualify for Social Security Disability benefits I had to take a psych test. The man who gave me the test stopped me at one
point when I was desperately trying to remember if the cocker spaniel
dog with the Frisbee in its mouth was sitting with Grandpa earlier or
if it was in the car with Bobby. The doctor patted my hand, handed me
a cup of cold water and suggested I take a break. When I came back
from the break he had put away the testing materials and ushered me to
the door telling me he didn't think I needed to worry, that my
application should go through with no problems.

Now, on one hand, that's what I wanted. On the other hand, I did not
want to be told that I was a card short of a deck. Or maybe two.

Because I have good friends who are chronic, I know that a lot of us face the two-edged sword of being incompetent enough to qualify for disability but being so incompetent that you forget to take your meds. And go to appointments. And to pay bills.

The list goes on, but it becomes more personal and embarrassing.

People who don't know me well enough to know that I have this disease tend to write me off as a bit dotty or maybe even slow. That hurts. If I try to sound intelligent and on top of things, in the same place as everybody else, it just gets worse. I forget words at approximately the same rate as i try to think of them. Pretty disasterous if you're trying for witty repartee.

Learning to live with pain and loss of career and freedom has been hard, but nowhere near as hard as learning to bury my pride and live with the constant little 'slings and arrows' of unspoken insult.

I intend to ask my husband to collect my sewing machine without me. I'm thinking the propriator might be right. Maybe I forgot to push the thread through the tension hook. Or maybe my machine has a real problem. Either way I don't intend to submit myself to the judgmental glare of Mrs. Humber ever again.

And that's one promise to myself I don't think I'll forget.

Peace

Empty Spaces

I haven't been around in a long spell. Energy has been in short supply and life has been demanding. Next week I'll regale you with stories and even photos of what I've been doing. I meant to do that already, but while I was fiddling my fingers and taking my own sweet time, life jumped up and bonked my chronic head. I have pnuemonia. That's the stuff where you feel like you're drowning only you're standing on dry land. Not fun

So tonight, Halloween, I'm sitting at home in jammies and robe, eagerly awaiting my next breathing treatment. Woo Hoo. Oxygen.

I'm not going to do anything more impressive than writing this blog entry for a few days while I give the high-powered antibiotics time to do their stuff.

Cya next week. Until then, everybody stay well. Wash your hands all the time. Eat green veggies. Sleep as much as you're supposed to. Take your meds.

Cause we who are chronic know that if you do all the things you're supposed to, you won't get sick. Yeah, right. And now I'm going to go watch something vapid on TV and leave you to find your own fairy tales.

Sun Worship

Every summer for years I dreaded vacation.

It always started innocently enough. We would pack up the car, strap in the boys and head for someplace cooler than the pits of Phoenix. On arrival we would check into the motel or set up the tent and play for the rest of the day. Evening would come and supper and bedtime for two exhausted, hyped up little boys.

And I would get sick.

Like clockwork it happened, summer after summer. By bedtime on the first day my husband would find himself with two cranky kids and a wife sporting a fever, headache, body pains and maybe even vomiting.

As you can imagine, my little vacation ritual created more than a small amount of stress.

It wasn't until I was labeled chronic that I realized what was happening to me: I have major photo sensitivity. It can happen to anybody. Chemo patients are likely to be photosensitive. Likewise people taking certain medications. I, and a lot of others, are photo sensitive because our immune systems have gone berserk.

This link will take you to a site that explains the skin reaction to the sun that many people suffer. Rashes, itching, peeling skin. It sucks. But some of us don't just have skin reactions. For some of us, exposure to UV rays can trigger an all out immune system response. When our immune systems find no invaders to attack, they become like hyper, sugared-up preschoolers at a birthday party and attack their hosts. In this case, 'hosts' translates as 'organs'.

I was already chronic back then, I just didn't know it. Hindsight is 20-20 and looking back I can see a pattern of physical conditions that some medical person probably should have looked at all together and realized that I was a very sick woman.

Instead, my medical providers usually told me I needed to lower the stress level in my life, perhaps with meditation or yoga.

Yes, that might have been helpful. But a correct diagnosis would have been even better.

As it happened, the good Dr. B was the first medical provider to connect what happened to my skin out in the sun with my physical misery.

Since my early twenties I have known that being outdoors without sunscreen would result in a face full of ugly, painful 'zits.' OK, call me slow on the uptake, but I never connected the face stuff with the fever, hurting, throwing up stuff.

Then a few months after my original diagnosis I found myself in Dr. B's exam room complaining of a nasty flare of symptoms. While poking and prodding, the good doctor pointed at one of the eruptions on my face and said 'What's that?'

'Um, a zit'

'And why do you have it on your face?'

'Because I was out gardening and forgot to put on sunscreen. It always happens.'

'You mean it always happens when you go out in the sun?'

At this point I was beginning to feel very, very stupid. Sure enough, Dr. B confirmed my lack of connectivity with typical terseness:

'That's not a zit. It's a sore. You're photo sensitive'

Oh goody. Another label.

Dr. B. then went on to explain that the condition of my face just might match the condition of my internal bits and pieces and that was probably why I was sitting in his office waiting for a depo-medrol shot and whining about how bad I hurt.

I got the shot and short term relief. I also got a long term medical order to stay out of the sun. Or more accurately, out of UV rays. If I have to be in an exposed place, then I have to wear sunscreen, a hat, long sleeves and long pants. If those clothes could provide UV protection, so much the better.

These days I don't go out in the lovely, sunshiny part of the day. Walks down by the river are of necessity short. Even dressed right I fatigue quickly when I'm out in the sun.

Or at Costco. Or Home Depot. Or any other big box store with high voltage florescent lights.

You see, those lights save energy and provide great visibility. But they also put out UV in big amounts. That's why when you see me at Costco in December I'm wearing a hat. Or when I'm in Target in July I have on long sleeves and long pants and that damned ugly hat I have to wear all the time. My husband has jokingly suggested a burkha. Sigh.

There is no cure for photo sensitivity, just like with most chronic conditions.

I'm not sure what was worse, really, enduring the misery of feeling so sick on summer vacations or just not having summer vacations any more. We don't go to the beach now. Or camping. My husband and I were serious birdwatchers. But birds mostly get out and about in the sun and that's no good for me.

We don't ride our bikes down on the river loop anymore and long walks, even if I feel up to it, are out of the question. My garden, which I cherish with all my heart, has become my husband's gift to me. He now is the one who plants and tends. He makes the garden thrive and hum with life. And he calls it mine.

On fine summer days he'll call me to the door, pushing that ugly hat firmly on my head, making me put on the long sleeved jacket and then pulling me out to the garden to spend a few precious moments. We admire the new blooms, cluck over the clematis that just never has done well, marvel at the abundance of life.

So it is that one summer ritual has replaced another. The old one was hell. The new one is fleeting and sweet. Just like the burst of sweetness from a honeysuckle bloom. Just like the warmth of the sun that beats steady on my back, just for a moment. Life is good.

I have to smile then, because I realize that along with all the other labels in my life, I am chronically blessed.

Peace be with you.

Where Are the Fog Lights?

For three hours I've been trying to pull my brain together and write about something important. It's not going to happen.

Maybe this is the time to explain brain fog. That's what we call it. If you're chronic you know what I'm talking about. If you're not, well, it's sort of like trying to sing underwater, only it has to do with thinking.

I don't know the physiological reason for brain fog. I know a lot of us have it. People with autoimmune diseases, chemo patients..... chronics.

In a past blog entry I explained how it is when I lose words. When full scale brain fog hits, all intellectual pursuits float in a viscous goo, just out of reach. Not only do I lose words, I lose the part of me that remembers why I wanted the words in the first place. It's an ironic state for me when I have spent my life writing for fun and profit. The only door I've ever known has slammed shut.

People who know that I'm sick but don't quite get it often ask why I don't freelance for magazines or newspapers. Obviously, the people who ask that haven't done it and don't know how much work freelance writing requires. Such effort and work is quite beyond me these days. Even if I could find the words and make the deadline and deliver something vaguely like what was assigned, there would be an even bigger problem.

Brain fog makes me unreliable. Sometimes things that I am absolutely certain I have done have absolutely not been done. Sometimes it's the other way around. And I confuse .... well, everything.

Nobody but my husband knows the depth of my confusion. And even he can't see it all.

Tonight all my traction is gone. I have words, but they won't fit together the right way. The story that needs telling will have to wait for another day. Tonight I will leave the keyboard and go play with my fabric.

Thank God there are so many windows.

Blessings,
Matriarch

Poetry Time

Tonight I am exhausted.

I spent time last night and today helping my friend J dismantle her household. She is moving to a more comfortable place, and in the process is selling everything but the necessary nuts and bolts of her life.

We measured fabric and rolled and marked it: $3 a yard. She is only keeping the things needed to complete a few projects. J sat down and figured what she can hope to finish in the few months left to her life. Everything else goes, generating cash she desperately needs to continue living until she dies.

I'm tired to the bone. Aching in body and heart. We laughed all afternoon. That's her gift to me. She says it's my gift to her. We are both blessed.

So the post I had planned for today will wait for another day. Instead, I'm going to treat you to a small portion of a poem by Dylan Thomas. He is my favorite poet, and I love poetry.

This excerpt comes from "Poem on His Birthday", written in the summer of 1951. The poet was 35 that year. He died on November 9, 1953. I believe this piece of poetry is quite possibly perfect:

Yet, though I cry with tumbledown tongue,
Count my blessings aloud:

Four elements and five
Senses, and man a spirit in love
Tangling through this spun slime
To his nimbus bell coll kingdom come
And the lost, moonshine domes,
And the sea that hides his secret selves
Deep in its black, base bones,
Lulling of spheres in the seashell flesh,
And this last blessing most,

That the closer I move
To death, one man through his sundered hulks,
The louder the sun blooms
And the tusked, ramshackling sea exults;
And every wave of the way
And gale I tackle, the whole world then,
With more triumphant faith
That ever was since the world was said,
Spins its morning of praise;

Dylan Thomas understood that his life would not be long. At the young age of 35, he could see the end coming. Spending time with J makes the fragility of life and the certainty of death more vivid. The journey will be over. The story will end.

I hope for you, dear friends, that when your own story winds down and your journey is all but over, you will find, as the poet did, the sun blooming louder and the world filled with "triumphant faith."

May the Peace of God go With you.
Matriarch

Stitches in Time

Quilting came to me after I was diagnosed chronic, when I was at my lowest. It was a gift from my grandmothers.

I had lost my words and become fat and my hair was falling out in clumps. I had gone to a gray building filled with gray people and told them that I was not competent to ever work for money again. They believed me.

Until you have spent weeks gathering reams of evidence to prove that you are utterly useless to the world, you cannot understand how horribly and completely that hurts.

My mother had given me a nifty sewing machine a year or two earlier and I had taken a quilting class with a friend. For a year or more, the only quilting activity I worked on was collecting fabric. Then one chronic day when I was lower than low, the fabric called to me. I spread out my fabric, rejoiced in the beauty of it, and started cutting it into little pieces.

Quilting became my life raft. On days when I was drowning, when pain ruled, I could still fondle my lovely fabric and look at the books filled with photos of stunning quilts and dream of a better day.

As I said, quilting is a gift from my grandmothers. Meemaw was born in 1891 in Indian Territory Oklahoma. Granny was born in 1886 in Arkansas. Life was hard back then. Little girls learned to stitch as soon as they could hold a needle.

By the time I came along, life had gotten easier by far, but both still made their own clothes and clothes for my sisters and myself and quilts to keep us warm.

They let me go through button jar and play with rickrack and stack up the little scraps of fabric. Granny even let me pump the treadle to her old sewing machine while she stitched long, straight seams. They gave me quilts to wrap in, to be warm against long, cold Texas nights.

They taught me to love fabric, the look and feel of the stuff and the myriad ways it can go together. I forgot that lesson for many years. But when I was in need, it all came back.

Quilting saved me. It has become my passion. I am slow and not terribly good, but I love the way you can make something perfect and orderly. I also love how you can make something wild and free.

Thank you Meemaw. Thank you Granny. Once again you have wrapped me in quilts, warm and safe against the long, cold night.

Blessings,
Matriarch

The Chronic Life Begins

The sun was shining the day the doctor made me officially chronic. I had walked into his office a couple months earlier with a sound self-diagnosis made with the expert assistance of WebMD.com and my sister: Depression. It was a good self-DX and explained the months of increasing fatigue and brain fog that had resulted in the loss of most of my writing contracts and general confusion and anger in my household. After all, when a person's mental faculties go missing for a couple months, people start to wonder why.

So there I was, proclaiming myself depressed and holding out my hand for Prozac or some similar instant relief pill, ready to medicate myself back to normalcy. I left the office with my prescription, but only after leaving a bucket of blood over at the lab.

"Take the pills and rest as much as you can for the next few weeks. Stay in bed most of the time," the good doctor said. Yeah, right.... stay in bed in November. But as it turned out, staying in bed was about all I felt like doing. I took my little pills and I slept. As the month wore on, the depression I was so sure I was e xperiencing lifted, and the fatigue deepened. And a nagging sort of fingernails-on-a-chalkboard feeling had settled into my shoulders and scalp.

"You may need another antidepressant," my sister counselled. "Sometimes it takes months to find the right one for you."

Early in December I walked back into the good doctor's office and informed him that I was no longer depressed, matter of fact my mood was downright jolly. But my body was sicker than ever.

"Well, that's because you have Lupus," he said. He smiled. We laughed a bit. Woo hoo, hehe. Lupus. What a relief! The diagnosis -- which changed slightly in later months -- explained a lot, including the horrible itching in my lower back and arms. Not to worry, he said, take this little pill and this little pill and you'll be fine. I'll send you to the rheumatologist and he'll tell you what you need to do and everything will be fine."

It all seemed so simple. When I told my husband over lunch that I had Lupus, he was relieved. I was relieved. The dark cloud of the past few months lifted. We had a name for the reason I was falling asleep every time I sat down. I had pills to take, a specialist to see. Life would be normal again in just a few weeks.

I won't bore you with the details -- yet (smirk). Just know this: that was December 2002. Today is August 23, 2007 and the only way I can call my life "normal" is because the definition of that word has changed in my household.

So I'm chronic. And if you've read this far you may be chronic too. Maybe we can ride this beast together for a little while. Check back here for more posts. I'll try to write every day or so. But you guys -- you chronic lifers -- know how it is. When you're chronic, all promises and plans come with a disclaimer: "Promises will be kept, plans will be carried out, chronic condition permitting."

See you tomorrow. Life permitting.