Thursday, December 27, 2012

A late Christmas blog

My apologies for missing my Sunday post!  I was frantically doing last minute holiday preparations, as I usually am! I always think I have more done than I actually do and find myself in a last minute scramble.
Do you have friends or relatives spread out around this country, or the world? Did you find yourself without enough money to buy gifts for everyone?  Not enough time to get them boxed up and sent out in order to arrive by Christmas?  If so, feel free to borrow this poem, written by my sister and I some time in the early 90’s.  I have done a small bit of editing to make it more universally appropriate for anyone. It's a new, or old, twist on 'gifting'. Enjoy.

The Crowe Christmas Rhyme

Twas the day before New Years and all through the house
people were wondering…
“Where the heck are our gifts?”
They’d been waiting and waiting,
with minds all a wonder…
What could they be sending
from the mountains o’er yonder?
The Yule had come, the Yule had gone
and not a gift, not a single one.
With heavy a heart and nary a prayer
They stepped outside into the cool crisp air.
They looked all around and what did they see,
but a little brown box.
Oh the Glee! Oh the Glee!

They hurried inside,
their booty in tow,
all so excited,
but how could they know?
That back on the coast the folks have no money,
So in lieu of some gifts, they had sent something funny!
They had thought long and hard
Then said “Oh what the heck!”
“Just wrap something up, they don’t care what they get!”
So they wrapped up some green beans
and a cake in a box.
They wrapped up some Kleenex
and a new pair of socks.
They wrapped an old hat and a purple kazoo,
a toy for a cat and some chewing gum too.
Then the package was sent,
along with this rhyme.
In the hopes that good humor
could make up for lost time.

Sunday, December 16, 2012

With love

I find my thoughts changing too rapidly to put them into words these last few days. 
I have tried to hear enough, but not too much, about the tragedy that fell upon so many this week.
I have seen these words too often, "I can only imagine...".  But can you?  Because I cannot. I did try.  Empathy is a burden and a gift. In this case I do not have it to give and I do not know how I would bear it if I did.
I cannot begin to imagine what they are going through and what they will carry for the rest of their lives. I thought of my boys, my young men, and what I would feel if they had to face such a horror. My heart would not let my mind go there.  And when I pictured my sons' young faces, their wide-eyed 6-year old faces...well that is as far as I got with that. I worry about people moving past this too quickly. Blocking it out. For the sake of family, for the sake of the holidays, for the sake of sparing themselves. I worry for those who may not be able to block it all, those with depression or grief of their own. I worry that we have poor, poor, poor mental health care in this country.
I have felt pain for the sorrows and tragedies of others before, but there is something about this...something about the little children...something about Christmas...something about being a mother...

And something about being a daughter...

Today I found myself thinking frequently of my dad.  In moments. A song on the radio, a smile from Hunter, a donut from Andrew, a picture of my 'grandfather' trees in the backyard. Today I received a Christmas card from my cousin in Indiana, who does a lovely thing each Christmas to honor and remember my cousin's mother, my father and all of their siblings that we lost in such a short number of years. She takes wreaths to the cemetary in Indiana, something I cannot do from my corner of the country . My dad enjoyed Christmas, but his favorite holiday by far was the 4th of July!  Those jolts of memory today were painful because it is the anniversary of his death.  And although it's been 14 years I can still recall that time too clearly. His battle with cancer was such a short time of his life, not how I want to remember him. Not how he would want to be remembered.  What a gift today, the words that my cousin shared. She described a wreath for him with a garland that reminds her of fireworks. And in that card, with those words, with unspoken empathy, on this day, she steered my memories to happier times.

If you can empathize, do.  If you cannot, give sympathy.
If you do not know what to do for someone who is grieving, just do anything.
Listen to each other.
Hug your loved ones when you leave home each day.
Laugh often.
Spend time with family and friends. Spend time with who you love. Spend time doing what you love.
I will say it again- listen to each other.  Especially to children. I know they ask a lot of 'why' questions and talk a lot. We should listen more.
Be patient, loving and kind toward adolescents and teenagers. Even the ones you don't know. Especially the ones you don't know. Try to picture them as a wide-eyed 6-year old and it will make it easier!
If you are thinking of someone, tell them. Send a card, write a note, text or tweet or shout it from the rooftops.
And remember that the holidays, while joyful for many, can be especially painful for those going through grief...or remembering grief. So let's cut each other some slack, we don't know what's going on in the lives, minds or hearts of others.

This week I am going to try to give my daily gifts to people that I do not know. A wise friend wrote that we should not let these tragedies cause us to withdraw from our communities. In fact, do the opposite and reach out. My sister shared a quote about making decisions based on love and not fear. I will try each day, with love, to reach out to others. I will probably still get tired and cranky. I will still get headaches and need naps. Trust me, I am near the end of the line for sainthood, but I am willing to try to be a better person. To try to be a bright spot in someone's day. As much as I wish there were more, I think that's all I can do.

In Loving Memory of Walter Crowe, who was a bright spot to many people each day of his life!

Sunday, December 9, 2012

Giving: A remedy for fatigue?

Last week I wrote a bit about fatigue.  My remedy, not for fatigue but rather to take my focus off of my fatigue, is to try giving more. Before I share how the last week has gone, I’d like to share this gem of a poem I found from early 2004, not quite a year after my MS diagnosis.  Fatigue is an old friend of mine.

Never enough

Never enough rest.
Sleep here on this bench
at the YMCA,
with my back against the wall.

Sleep on the couch
for ten minutes
while cookies bake in the oven.

Close my eyes
just for a minute
until the light changes to green.

Close my eyes
for the second that it takes
to say goodbye to a tear.

At night in my bed,
they come to chase the rest.
Poking, burning, binding pains.

I feel myself shrinking,
everything diminished as
I grind my teeth and lose my hair.

Atrophy of the mind
body and spirit.
There is sleep sometimes,
but never enough rest.

It’s a bit bleak, but it’s also very real. It’s where I was. But there’s good news!  Sometime around late 2006 a doctor finally listened when I said ‘pain’. Prior to that I was still getting, “MS should not cause pain”.  Or “Maybe it is something besides your MS, let me send you to a series of time-consuming and pointless tests and visits”.  And my all time favorite, “You are depressed”.  You think?  I wasn’t going to argue the depression, but rather which came first, the chicken or the egg!
After finding a doctor who understood that MS can cause pain and listened to my descriptions of my pain, I was given prescription medication that helps tremendously.  My pain is a mix of neuropathic or nerve pain and pain brought on by muscle spasms.
Controlling pain allowed me to exercise more, go to physical therapy or get a massage and yes, to sleep better.  In 2009 I found a fantastic naturopath who also understood the trickery of MS. I now have supplements that help with my pain and many other symptoms, and allow me to use less medication.  I still need both and that’s okay.
My hope here is to share some empathy with others who have chronic pain, but also to educate.  MS can cause pain.

As I tried to focus last week on ‘giving’ a gift to someone, well…I couldn’t focus!  Over dinner we sat down and talked about what we had given.  If someone had not had an opportunity to give it wasn’t too late, a gift of doing someone else’s chore could still be made.  On more than one occasion I found myself saying, “Well shoot. I know I did give something. I remember thinking ‘this will be my gift’, but now I don’t remember what it was.”  I was too fatigued much of the day, in zombie-mode, to really focus and remember details. Thus commenced a re-hashing of what I could remember of my day until we hit upon a gift.  But it often wasn’t ‘the gift’ that I had intentionally given.  This stressed me out.  It took me until the weekend, when I could catch up on rest, to come up with the brilliant plan to WRITE IT DOWN in my calendar that I carry.  I carry my calendar everywhere, because I will forget something in the time it takes to cross a parking lot!

The up side of these evening talks was that I realized I give many gifts in a day.  Even when I am feeling my crappiest. Perhaps the 5 or 6 previous attempts at the 29 days of giving had a positive effect!  Mark and my boys are also great givers, not necessarily thinking about it as intentionally, just doing it out of nature and habit.  That makes me happy.  My youngest would say he had forgotten to give a gift that day.  As we would talk through his day, many small gifts of kindness would be revealed.  How cool is that for a 14 year old? We talked about opportunities to stretch, give the gift of kindness to people ‘outside of our comfort zone’. One evening we were at a charming little Christmas shop downtown. Dozens of decorated theme trees and any ornament imaginable.  My oldest son found one he wanted to purchase.  As he took it off the branch at eye-level, he paused. “Is there another one of these down lower?” he asked. I pointed one out.  “Oh good, I’ll take that one. That way if someone else likes this ornament, they will be more likely to see this up here,” he said.  Who thinks like that?  A natural giver. “Do you realize you just gave a gift?” I asked. 

We will continue our giving experiment this week.  I am learning to be forgiving of my forgetfulness.  Learning that I tend to give, and receive, much.  I am discovering kind and generous souls in my young men.  And they are seeing it in themselves.  I am still tired and fatigued.  But is this taking my mind off of it?  You bet!  A much better way to spend December.

Saturday, December 1, 2012

A Challenge

Last weekend I fought the urge to write about exhaustion. Who wants to read about how tired I am on Thanksgiving weekend? So I took a safe, and potentially boring route, and wrote about food. Beyond the notion that others would not want to read about how wretchedly fatigued I have been was the fact that I was just tired of talking about. Those who have had some in- person, phone, email or Facebook time with me lately know I have been very tired. 
It’s not a run of the mill, got to bed too late, dog woke me up in the night, tired. It’s the MS tired. And it kicks my butt sometimes. So tired I frequently napped in my car on my lunch break. Reclined the seat, put my office sweater over me like a blanket and pulled my orange stocking cap low over my eyes to block the light and hopefully passer-bys’ ability to recognize my slack-mouthed, sleeping face. So tired that I took ‘second naps’ (not as much fun as second breakfast!) when I got home from work. So tired that I nearly fell asleep walking up a flight of stairs, rested my eyes at stoplights, wandered into wrong rooms  tripping over my groggy feet, nodded off at the pharmacy and did not hear my name called. So tired that I declined invitations to multiple fun activities that I would have forgotten to attend anyway, because I was too tired to remember. And because I did not want to write about it last week, that is as much as I will give it today!
Almost a year ago, when our local Borders store closed its doors, I purchased a dozen discount books. Among them was the treasure “29 Gifts- How a month of giving can change your life” by Cami Walker. I did not pick it up because I was feeling a philanthropic urge. I picked it up because the jacket said that Cami Walker had MS. I never get tired of hearing from others in the multiple sclerosis club. The idea, in my best attempt at a nutshell, is this- When you are feeling crappy, low, deprived, unlucky, sick, tired, and sick of feeling tired…that is the time to give. Cami received her prescription from a spiritual healer. The prescription was to give something, any small thing, to someone each day for 29 days. The original prescription has some other specifics that I invite you to check out on the website  or pick up the book (it’s a short, easy, and inspiring read). 
I have attempted this prescription 5 times and never totally completed it. It’s harder than you’d think. Because there are those days, like these last few weeks, when I feel so completely drained that I think there is nothing left to give. The giving does not need to have a monetary value, though it can. It may be a bought gift, a re-gift, a gift of time, listening, compassion. Help someone who drops their groceries. Give a grumpy store clerk a smile and some kind words. Call up a friend who hasn’t heard from you in a while. Pick up your neighbor’s garbage cans that rolled away in a windstorm. Stop what you are doing to help a frazzled co-worker. Babysitting, baking, the ideas are endless. 
The trick is to start each day intentionally watching for an opportunity to give. I try not to plan too far in advance. Giving, especially when I am feeling  low, somehow fills me up. It takes my focus off of what is wrong with me and what I cannot do, and turns it to things that I can do. It allows me to be more comfortable asking for and receiving help where I need it. Cami does a great job of explaining how it helped her. There are hundreds of great stories on the website. 
I plan to share more about my experience with this over the next month as I make my 6th attempt at the 29 days of giving! And I challenge each of you, just as I have challenged my family, to join me in this effort. What better month than December to start each day with the intention of giving? It’s not just about December 25th after all. So check out or pick up the book! My family will be talking about our giving experiment over dinner each night, in the hopes that we might inspire and learn from one another. Feel free to share stories in a comment here on my blog, or join Cami’s website to learn from, and share with, a worldwide community of givers.
Have fun! I wonder if I can start by giving myself an extra two hours of sleep tomorrow

Friday, November 30, 2012


The weather started getting rough...
The tiny pig was tossed!
If not for the courage of the fearless Poooooooh,
The Piglet would be lost.
The Piglet would be lost.

The rain rain rain came down down down
and Judy started wailing...
The wailing it did stop and start,
drifting with her thoughts..
But little did Just Judy know, while wailing she was failing.

It's raining, it's pouring
This weather is not boring!
Gonna go to bed, cover up my head
And soon I will be snoring.

Sunday, November 25, 2012

Comfort Carbs!

Two days after Thanksgiving I am still happily dishing up a dinner of leftovers.  The same thing as the last 5 meals.  My exceptions have been greek yogurt with fruit and a green salad. I do not grow tired of the turkey, yams, stuffing and cranberry salad. As I try to decide just how much stuffing is appropriate this evening, I find myself thinking of comfort foods.
Comfort foods evoke feelings of being safe, loved and cared for. Like the macaroni and cheese (Kraft please) that my mom always made when my sister and I would return from a visit with my dad in Indiana.  It didn’t matter if we’d flown ‘red-eye’ and it was 5am, mom would make mac ‘n cheese and we would happily eat it.  As a result, mac ‘n cheese became my comfort food for home-sickness.
Campbell’s chicken noodle soup…or simple tea and toast…if I was too sick to go to school.  Mom would drop me off at grandma’s, where I would lay on the couch watching the Price Is Right, comfort food just a TV tray away.
My sister and I were home alone for a few hours after school each day and I craved warm food.  No cold sandwich for me.  Mom and I worked out some options that I could cook myself. Mashed potatoes and gravy was a favorite of mine, but the potatoes were a lot of work!  Instant potatoes either did not exist when I was young or my mother could not bring herself to purchase such an abomination to our Irish heritage. I could manage the gravy packet however, and  “Bread and Gravy” was born!  Tear two slices of bread, pour ‘brown’ or ‘chicken’ gravy over the top. Similarly, I could make pudding.  Add milk, cook, stir and pour.  Chocolate, butterscotch, pistachio, vanilla…oh how I loved (and still love) the puddings!
The infamous milk noodles. You don’t know what milk noodles are?  I believe these came from my grandmother, probably desperate to find a way to feed those 9 children on my grandfather’s enlisted salary.  Boil elbow noodles, drain, add butter and milk, salt and pepper to taste; a soup of macaroni, in milk and butter broth.  Then there was the stuffing.  Somewhere around 5th grade I discovered that an entire box of stove-top stuffing was easy to make and delightfully satisfying.  And so it went, through all of my school years and into college, a full and comforting meal could be made of simple carbohydrates.  Milk noodles transitioned into ramen, bread and gravy gave way to instant potatoes that I had no qualms about. I suspect that I avoided nutritional deficits by my firm attraction to fruits, including lemons and limes that I would cut into fours and eat just like that.
Over the years, as my culinary interests matured, I tried to shake up Thanksgiving dinner.  From Matzo ball soup to collard greens to quail eggs.  My mother and sister sometimes played along, willingly trying my new endeavors.  This year I announced that I would make the sweet potatoes healthy; roasted rather than candied.  But somehow, rather than olive oil, I used an entire stick of butter.  And rather than make a brown sugar glaze for the side, I made a cinnamon, brown sugar syrup that went over the whole dish. I am not sure how it happened.  They were so decidedly unhealthy that when I arrived at my mother’s she decided to put away her “traditional” sweet potato dish she had made (for the poor souls who didn’t like mine).  “Just put some of these marshmallows on top and we’ll just have yours,” she said cheerfully.
As I eat the last of the buttery yams and stuffing tonight, I declare the entire Thanksgiving dinner to be a comfort food. The rest of the year I will bake my yams and I will feel healthy. But for the third week of November I will eat candied yams and stuffing.  And I will feel warm and cozy and safe!

Sunday, November 18, 2012

The Produce Martyr

I headed to the Safeway late last night, hoping for a peaceful and quiet trip. I dislike crowded stores. But I forgot it was the Saturday before Thanksgiving.  In order to wait out a crowd around the yams, I wandered into the floral department.
One hour and 20 items later I headed home, excited to put my burgundy daisies in a vase. Something to brighten our perpetually gray days. As I lovingly trimmed the stems and plucked all the yellow or moldy leaves from the flowers I thought, “Oh hell, I’ve done it again!”  And this is where the story gets weird. Or where I get weird.

I have an odd habit.  I have bravely confessed this habit to a few souls.  I am always greeted by the same look. A look that blends confusion, dismay, disgust and denial.  A look that says, “That is so ridiculous, I cannot understand it, I am going to pretend you did not say that.”  What is this odd habit?  I am a produce martyr.  And apparently a flower martyr as well.
When purchasing produce I do not hesitate to buy the spotted apples, the slightly wilted greens, the overripe plums, the ugliest yams and yes, the moldy flowers. Not only is there a lack of hesitation, I actually seem to gravitate towards them.  Once these sad friends of the plant world are in my sight I feel an obligation. Who else will buy them?  Surely they will be tossed out at any moment, the scourge of the dutiful produce department employee.
I have no idea how long I have been doing this. “Why (insert above-mentioned look) would you do that!?” more than one person has asked. Once I consciously became aware of this habit, I asked myself the same question.  I thought it had to do with not wanting to waste. Perhaps that “Voluntary Simplicity” course got to me. Maybe I am a reincarnated soul from The Great Depression. I try very hard not to waste at home, using up all leftovers in the fridge and cutting the tops off of lotion bottles because there is a lot left inside after the pump stops working! My bag of ‘clothes to mend’ grows fatter each year, especially since I don’t really sew. Children’s clothes and toys are given to consignment or packed into storage tubs for grandchildren that I may have some day.
This simple desire to not waste is the best reason I had until last night.  But as I arranged my leafless flowers into a crystal vase at 11pm, I had a thought.  Is there something else, something more personal, going on here?  “Who else will buy them?” That is the question that goes through my head as I stand with battered vegetable in hand. But the motive may be deeper than thrift. Maybe it is a desire to recognize the value in things ‘not perfect’.  The overripe plum can be the sweetest if eaten quickly.  Spotted apples healthier, having grown without pesticides. And my burgundy daisies, minus the moldy and yellow leaves, are lovely. A burst of color, stark against the naked stems. The best 'imperfect' bouquet for these gray and dreary days.
Perfect is boring.  There is a bit of mystery in imperfection. You never know what you will find.

Saturday, November 10, 2012

Another New Normal

I have rewritten the first sentence of this post a dozen times. I want to explain my MS.  My version of multiple sclerosis.  And much like the shifting, unpredictable and evasive symptoms that I experience, so too are the words I want to use to describe it. 
When I was diagnosed my symptoms were quite apparent and frightening. Tremendous fatigue, stabbing pains, mood changes, slurred speech, double vision, balance issues, drop foot and a group of symptoms that I will call ‘delayed response’.  Delayed responses were times when my brain would tell my body to do something and a 1-5 second delay would occur before the function.  My hand would pause while writing a word, my foot pause mid-stride…or mid-brake.  I quit driving for a few months. 
Within a year most of the more obvious symptoms had gone away or diminished to the point that they were not visible to others.  With a good diet, the right medications and supplements, and a great big dose of good luck I have managed to stay fairly stable for 9 years. I still have ‘invisible’ symptoms; fatigue, muscle spasms, nerve pain and heat sensitivity to name a few. I see them, my family and friends see some of them, but to the general public I probably appear fine.

Unfortunately some of those ‘delayed responses’ have returned and some of my other symptoms may be increasing.  It is happening slowly, at a rate that is easy for something to become my new norm. The lines between aging, busy life and MS are not lines at all.  All of it is my life, all of it is me.  I am not Judy with MS.  I am Just Only Judy.

I take a lot of naps.  20 minutes in my car during my lunch break. 30 minutes after work, to make it through the evening.  Every Saturday and Sunday…trying to catch up. This is normal for me.  I cover my eyes for naps and sleep; the smallest bit of light bothers me.  I struggle with noise.  The noise of too many voices, music, televisions, even the hum of the refrigerator on a bad night is like rubbing alcohol on the raw wound of my nervous system.  I avoid crowds and plan my activities around temperature and bathroom access.  I write everything down, leave myself voicemails and send myself emails. I forget much and yet I move along, compensating.  All is normal.

Until something is not.  For the last two months I have been complaining that my computer mouse ‘does not double-click’.  I use my mouse with my left-hand to reduce nerve pain in my right arm. This is normal.  My ‘double-click’ was not working. This was not normal.  I have been doing a single right click and choosing ‘select’ or ‘open’.  It’s tedious and not everything works this way. 
The 20th time that I said “My double-click is not working”, one of the men in my house said, “What do you mean? Let me see.” They took the mouse in their hand and double-clicked. It worked.  I said, “Oh, it must be working now.”  And as they walked away I double-clicked.  Nothing.  A few days passed and someone bought me a new mouse.  I tried it today; the double-click didn’t work. For two months I believed my mouse was broken.  Something else ‘clicked’ tonight, as I tried the mouse again and again. That is the realization that it is not the mouse that is broken. It is another little bit of me.  My hand is not able to double click fast enough.  I tried my right hand, it’s even worse.

I knew I had an issue with my feet not working fast enough when I tried to take a Zumba class last year.  For some reason I was always three steps, shimmies or shakes behind everyone else.  Heaven help us all when I was supposed to ‘turn, turn, turn’  (read “Haven’t you any sense?”).  This summer I noticed something strange about my handwriting.  Every so often a large gap of open space appears in the middle of a word.  As though I am expecting some extra letters to pop in for a game of scrabble.  It looks like th    is.  I saved some samples, but forgot to take them to the neurologist.
For some reason, of all these things, it is the ‘double-click’ that is upsetting me.  I can’t put my finger on it.  Yes, that’s a bad pun.  It has something to do with my absolute belief that the mouse was broken. I don’t want to be broken.
I am told that the ‘double-click’ speed can be adjusted.  So with a little help, I will compensate again. I’ll carry on.  All will be normal. And normal is a rolling, shifting sea that tosses and turns me until I am dizzy. Spits me out on the beach long enough to catch my breath, to try to find words. Then the tide pulls me back in.  Normal.

Wednesday, November 7, 2012

Sex, Drugs and Rock and Roll!

I'm talking about politics of course!  Special post-election day blog post!
We have two states legalizing marijuana (to be regulated and taxed of course).
Two states approve, by a vote of the people, same-sex marriage. Hopefully Washington state will join that elite group by the end of the tallying.
And while Chris Cornell did not run for Governor of Washington...we did get a little bit of rock 'n roll thrown into the mix when President Obama played matchmaker for Bruce Springsteen and New Jersey's Republic Governor Christie!
Ah America...I love ya!
The presidential popular vote is close and I respect that many of my fellow Americans would like to see different changes than I.  But there is always common ground. May we find some. And may we all look for ways to dialogue and compromise in the rough and tumble, wonderful way of our democracy! 
And Puerto Rico?  Come on down! You're the next contestant on "The Vote is Yours!"  Things are only going to get more interesting for all, and equitable for you, if you join this party!
Wednesday or not, interferon hangover and all, Just Only Judy will be grinning much of the day! Maybe play a little "Changes" from Bowie.  Or some Springsteen.  Or start harassing Chris Cornell about his future as governor.  Oh the possibilities...

Sunday, November 4, 2012

The Middle Ages

Each year of my forties brings something new. Things expected and unexpected.  Women of my generation, post 'women’s lib', have the benefit of more open and honest scientific explanation for the weirdness that is ‘middle age’.  Yet there are still things that no one warned me about.
This year, at 43, the peri-menopause phase has begun. Hot flashes?  Sure, I’m starting to get those, but I knew to expect them.  Drying up a bit?  Bring on the lotion and all things moisturizing! At least I no longer have to wash my hair every day. 
Speaking of hair...Thinning hair is something I heard about, but was certain would never happen to me; the proud bearer of a very full head of thick hair.  It was a wicked pride I felt when a hairdresser would have to go back to mix up more product because I had too much hair. Or ask me to please let the front desk know to schedule extra time for my appointments, “Because you have so much hair!”  My vanity left Sampson in the dust. 
But something went wrong this summer.  The hair that came off of my head when I washed it grew from a handful of strands into something akin to a small pet.  I cringed every time I washed my hair, trying not to pull them out. I deleted countless photos with the flash shining from above, onto my thinning hair…making my part appear to be an inch wide! All in vain.
My hair is just tired.  Through research and an array of negative medical tests, I determined that my hair follicles are simply tired.  Too many of them are taking a ‘telogenic’ rest all at once.  I am mildly sympathetic, as I understand tired.  My MS fatigue is with me every day.  I drink a lot of coffee and take naps.  Cat naps though, not Sleeping Beauty naps like my follicles!  In an effort to wake them up, I purchased a shampoo designed to fight ‘fall out’ of hair with caffeine!  I’m not sure it’s working. 
For each hair that falls off my head, there seems to be a rogue one popping up in the most inappropriate places. I’m pretty sure this is how dementia starts. Follicles wander off and don't know the way home. You find them confused and disoriented, under your chin or halfway down your thigh. 
My skin is getting tired too.  Unable to find the willpower to ‘bounce back’ from another round of gravity, it sags, begging for a nice long nap.  As these things, along with the mood swings of peri-menopause, threaten my joy and appreciation for all that is Just Only Judy, I am reminded of a poem that I wrote. 

Loving Me

Can I love the skin,
Hanging on my neck like a tired linen curtain?
Eyes shadowed by a year of fears,
Chipped teeth shifting in my mouth,
Restless sleepers…
My mother’s hands,
A mother’s hips,
These lines that deepen around my lips,
That sing goodnight to who I was,
And whisper…
Can I love?

Oh the drama, despair and angst.  The horrors of the aging process, striking at my very heart.  Who will love me? Can I love myself?  I have to laugh a bit at this poem.  Because I wrote this 8 years ago! I was 35 years young. What in the hell was I whining about?!
Ten years from now I hope to be laughing about my distress over thinning hair. My poem gives perspective and reassurance from the past. I am not opposed to easy and safe beauty remedies. I am not shy about my vanity. But I am afraid of dangerous surgical procedures.
So here is my advice to you ladies in your 20’s and 30’s.  Wear sunscreen!  Remember your face, neck and d├ęcolletage! I do not want anyone to die on an operating table because they were trying to lift their face!
When you are middle-aged, you can try Rogaine or buy a wig.  You can get Invisalign.  You can Spanx your stomach and Spanx your butt.  But ladies, you cannot Spanx your face! So wear your sunscreen! Chin up old gal...

Sunday, October 28, 2012

A Perfect Storm

As the East Coast prepares for “Frankenstorm”, I find myself fascinated by one description of the storm that has really caught on. “The total effect will be greater than the sum of all its parts”.  I have heard this phrase before, often to describe good things. Great things. Times of bringing together many people to create positive social change. Times when the power of something seems to multiply on an exponential scale as more energy joins a cause.

But the phrase is capturing my attention in a different way this time.  I tend to explain my world in terms of metaphor and analogy.  I find it helpful.  This “Frankenstorm” is the result of many different severe weather systems colliding in space and time. Extreme temperatures, rain, hail, high pressure, low pressure, hurricane force winds…the forecasters have new descriptors every day.
Now I could use this as an analogy for MS.  Or many other serious illnesses for that matter.  However, what came to mind last night, is moods.  My moods.  I am a person of extreme weather systems.  Even as a young child I was this way. The weather can change quickly in my part of the world.  A sunny outlook shifting to a thunderstorm in what some people may deem the blink of an eye.  Admittedly the wind is often moving very fast, but if someone is paying attention they will see a few clouds start to roll in.  They will see the clouds moving faster and turning slightly darker before the first crack of thunder.
There are certainly others among you with quickly shifting weather systems.  But are there others among you that have “Frankenstorms”?  I do.  Less now than in my 20’s and 30’s, but they do still occur.  Maybe we could refer to things as “The storm of 2003” or “The winter of 2006”?  I always feel badly about Frankenstorms. There is always damage to deal with later; feelings to repair, relationships to rebuild.  I have struggled to understand them. 
I may be aware of hurricane force winds of stress. A low-pressure system of MS fatigue hovering in the East. The icy bits of neurological hail pattering on my brain, activating the Migraine Alert System. The rumbling thunder of low blood sugar. Each of these events are regular occurrences and so they don’t raise my level of concern too terribly high.  Thankfully they don’t usually all occur at once.  But sometimes they do.  Throw in a heat-wave (literally…do not let me overheat, heaven help us) and maybe a deluge of noise, especially the electronic kind…and there you have it!  Frankenstorm!
And truly, the result is much greater than the sum of all the parts.  I find it tremendously helpful to think of it this way.  It isn’t logical math.  It’s mystery.  It’s an unpredictable scientific rarity. Don’t worry kids, this too shall pass, it’s Just Only Judy.
I carry earthquake insurance on my house, but not flood or hurricane insurance.  When I lived in the Midwest we had tornado insurance.  I can’t buy insurance to cover the cost of cleanup after one of my ‘perfect storms’.  What I can do is be loving, kind, generous, receptive and calm, as much as possible during the good weather.  I can bolster the foundations of my relationships so that even if the roof blows off, we can still rebuild. I suppose I can buy some insurance with hugs, cookies and listening. I can make sure to enjoy sunny days with friends and family. I can be willing to play when it’s only raining. I can try to divert some of the weather systems to avoid collision of many, and thus a ‘perfect storm’. Of course, as I said in a previous post, communication is important as well.  Thanks to “Frankenstorm”, I now have a new analogy in my toolbox as I talk my way through a post-storm cleanup.

Sunday, October 21, 2012


“You must know that you can swim through every tide and change of time,” so says my tea bag message for the day. 
I have spent some time this weekend with my youngest son, watching home videos from his first year on this earth.  It is amazing that in the last 14 years he has grown into the 5’10” young man that still tries to curl up next to me on the couch.  I say, no less than four times in this particular video, that I am tired.  It makes me sad when I watch the video, to hear the fatigue and flatness in my voice.  But then I remind myself that my father had died not even a month before the video was made.  10 days before Christmas 1998.   That time is such a blur for me. 

I think we all carried on as best we could, but I can recall the feeling I got when I went out into the world, around other people.  Surreal.  I did not want to chat about the weather, the holidays, the price of fuel.  I wanted to say, “My father just died.  I am sad.” I remember wishing I could wear a black armband, something so that people would know when they saw me.  Know that I was sad.  Not just tired. 

Did I swim through that tide and change of time?  No.  I can’t even say that I managed a dog paddle or a float.  My sadness was so great that even a swim noodle may not have kept my head out of the water.  In this case, when I could not swim, I had friends and family to forge a raft, a lifeboat, to carry me across.  Cards, letters, food, warm socks, journals and books, surprising gifts of comfort made up my lifeboat.  Some solace came in the fact that I was not alone.  It was not my husband and kids with me, but my siblings.  Living in three different states, yet all in the same boat.  I did a lot of writing. In one of my poems I say:

I am antisocial.  Who can really understand?
And those that are there,
My siblings;
In our rocking boat together,
We can only talk about it in halted words.
Our combined grief would be too great.

Thirteen years later there are still things that cause my eyes to well up unexpectedly as a memory is triggered. I try not to stay in a sad place long.  My dad was the funniest person I have ever known.  That man had so much silly and so much laughter. I’ve always been more of a moody soul, with a hint of melancholy.  It is delightful when my silly comes out, it reminds me of my dad. Surprisingly, there are moments of laughter in the video.  When we bundle up Hunter in his Christmas snowsuit and take him outside because it has ‘warmed up’ to –4 degrees!  He lays in the sled, unable to move even an arm. Big brother Andrew pulls the sled around and round, coming perilously close to some steep and icy hills, but holding on tight to the rope. The little powder blue bundle just lays there and stares up into the bright sky and camera with curious eyes.  Indoors he was in constant motion, never wanting to slow down for long.  It makes us laugh to see him trapped in his snowsuit, content and trusting.  Little blue eyes full of thoughts we cannot know, staring up at us.
As the years have gone by, I have had more than one friend or family member go through the loss of a loved one.  I know the need to be wrapped up in kind words, thoughts, warm socks or a cozy snowsuit. The gratitude that is felt when someone gives you a lifeboat. The time for contemplation when someone else steers the sled.  The relief that comes when you can just be still.  We don’t have to swim through every tide.  It is okay to be carried through.

Thursday, October 18, 2012

Perhaps I was carrying too much?

I have missed a Sunday post- my apologies.  A nasty cold started at the beginning of last week. I took three days off work with lots of tea, chicken soup and supplements.  Certainly three days was enough for my body to heal itself from a common cold.  I hopped my hacking self back in the saddle and life got back to normal for two days.  Or at least I tried to fake it. Then my body said “Enough”!

Hello new friend…
You’ve come to pay me for my sins,
Your wicked virus, it wa-as creeping…
Into my voicebox while I was sleeping,
With the bronchitis… that you planted in my chest,
I get no rest,
Within the sound…of silence.

A lot of Simon and Garfunkel growing up.  And on that note, being a bit tuckered out to write much, I am posting below an essay that I wrote for my mother.  We are a family of women who often try to do too much.  Take on more than we can carry and don’t put ourselves first often enough.  As I try to sleep upright on my red couch for the 4th night in a row, legs stretched out across the ottoman, I shall tell myself this story.  And remind myself to be careful how much I carry. A body will find one way or another to crack under the strain.

Essay for Mums

If one pictures a woman carrying too many things on her back, causing her to stoop slightly forward, and then one pictures all manner and sort of thing (I see cats, luggage, books, food, papers, etc) falling from the sky- well those items are going to get stuck and heaped upon the things already on her back, causing her bend forward more and thus create even more surface for things to begin collecting on, as her back becomes horizontal to the earth.

Now envision a woman strolling along with a tidy handbag or small satchel at her side, holding just enough and not too much. Standing all proper straight and Mary Poppins like...perhaps even wearing a black raincoat and holding an umbrella (for which to open upon her head when things begin to fall from the sky!).  Well, then when crap starts falling, as it will, it's not going to get stuck on her! It’s logical, it’s physics. And if she's quick with the umbrella then things won't even hit her in the head ;) 

So these are the options- we can continue to collect too much crap on our backs until it causes our schnoz to hit the floor.  At which point everything will come sliding off anyhow, but we'll be a bit bent and battered and worse for the wear.  Or one can carry only what is proper and not too much, stand straight and tall, and keep one's umbrella and rain coat at the ready! 

 Of course a particularly heavy object, say a davenport, could fall directly on us and squash us, regardless.  It is those moments that friends and family are needed to assist in the removal of the sofa and helping you to right yourself.  In the meantime I say to you, "Shake any unnecessary crap off of your back, stand straight and let it fall to the floor if it must...if it's important to someone else, they will pick it up.  Carry only what you can fit into your Mary Poppins satchel.  Chin up, jacket on, umbrella ready!"

I'm glad for the noisy rain's awfully quiet around here when I can't talk!

Sunday, October 7, 2012

Grandma is doing what?!

One summer that feels like both yesterday and a lifetime ago, when Hunter was about three years old, I splurged and bought a large inflatable wading pool.  It was grand! Double layers of inflatable plastic, two giant aquamarine donuts stacked on top of each other so that the water could be two feet deep! At 10 feet in diameter, I considered it a preschool equivalent of an Olympic size pool!  I just knew he and Andrew were going to love it!  Poor Andrew, being six and half years older than his little brother, has often been caught up in my delusions of age-appropriate activities.  It often works out somewhere in the middle.  So when Hunter was three and Andrew was nine, I pretty much functioned as though I had two 6 year olds.  Pros and cons to that approach.
In this particular case, I believe Andrew was a bit under-whelmed by the grand purchase.  So I worked on building Hunter’s excitement.  While my mom was outside with the foot pump (best grandma award!) trying to inflate the beauty, I was inside boiling many pots of water.  In Washington it is a rare day that gets hot enough to warm two feet of water from the hose.  You have to add some hose water, then some boiling water, hose water, boiling water, stir three times, check with your elbow, then your toe…then you are good to go.  The boys, with swim trunks on, plastic dinosaurs and power rangers ready, were watching Grandma Georgie out the back window. 
“When wiw it be ready?” asked Hunter.  That’s not a typo, he couldn’t say the letter ‘l’, it came out like ‘w’.  And a ‘th’ was an ‘s’ or ‘d’.  Remember that so you can follow our dialogue from here.  “It takes a while sweetie, gramma needs to blow it up and it’s a big pool”.  Phshhhshhh, phshhhshhh, the steady sound of Grandma G on the foot pump came through the open window. Andrew wandered off, but Hunter stayed to watch.  “Why did we have to get a new poow?” he asked.  “Oh, because this one is sooo much bigger, you are going to have lots of fun,” I answered.  “But I just want to use da udder poow,” replied a slightly higher pitched voice.  I thought he was just being impatient.  Hunter was never, and still is not, a person that cares to wait on things. “Hunter, you just have to wait a little bit longer until gramma is done blowing it up! Let’s go out and see how she’s doing,” I suggested.  Phshhhhshhh, phshhhshhh. He followed me slowly toward the slider door and stopped just inside. I turned to see those big, blue, serious eyes in that little face welling up with tears. I dropped down to my knee, “Honey, what’s the matter?”  “Weww (well),” he said. He dropped his towel and put both hands up in a questioning gesture. “Weww, is it gonna espwode or somesing?!” His little shoulders hunched, a tear rolled down a cheek.

Remember- both boys were about six years old in my activity planning. One of our latest fun finds had been the old Godzilla movies.  You know, the dubbed English ones from my childhood.  Mothra, Ghidra, Megalon and more.  This little three year old had seen them all. Lots of things ‘blowing up’ and exploding thanks to Godzilla and friends! The poor baby. I'm sure he thought grandma and I had lost our minds!

Weww… we recovered that day. A big hug, some muffled laughter, a lengthy explanation of ‘inflatable’, many apologies and careful introduction of the new pool, it all worked out.  I do think he may have looked at Grandma Georgie a little differently after that day.  But that may have worked in her favor as he grew into a teenager.

I’m sure there’s a parenting lesson or two in there.  But I like to focus on communication.  Do you have little ones in your life, or even medium ones?  Don’t dumb it down for them.  They can handle the big words and the big truths. Happy or sad, good or bad.  If you don’t take the time to carefully and honestly explain their world, they will come up with an explanation and interpretation on their own.  That’s not necessarily bad, so long as you remember to ask them what they are thinking.  Come to think of it, it’s not a bad thing to do with everyone that we communicate with.  Ask what they are thinking, repeat what you think you heard (as Hunter wisely did), clarify. And when there are miscommunications, the same tricks might just work- hugs, laughter, explanation, apologies and a more careful approach.  It seems so simple. And maybe it is.

Sunday, September 30, 2012

Haven't you any sense?

We all learn about our five senses at some point in grade school.  Sight, sound, vision, touch, taste. Why don't they teach us about the rest of them?  Depending on what research you look at, a human being has up to 21 senses!  Our bodies know this from the day we are born.  Hopefully we use them to better understand ourself, others and the world around us. 
I became aware of some of them only after they were damaged.  Multiple Sclerosis affects the nervous system.  The nervous system is the happy home of all of those senses. Have you heard of proprioception?  It is the sense of where your body, and all its part, are in space.  For some people, and not just those with MS, this 'sense' stops working so well.  It's not as easy to explain or discuss, if you don't have the word for it to begin with.  So you say things like "I just get a bit wobbly" or "I have a hard time getting my foot onto the escalator or moving walkway". Or better yet, you say something like "I will say this only once, and you cannot think I'm crazy okay? And we will never speak of it again, agreed?  Okay. Sometimes...I just feel like I'm not quite in my body...sort of...well it's there...but I can't control it exactly...oh never mind..."  Any of this sound like you? Do you have mysterious bruises from bumping into things so often you don't even notice anymore? Have you taken a few unexplained tumbles? If so, look it up.  Proprioception.
Like I said before, we use all of our senses to understand and interpret the world around us.  I am often misinterpreting my world, based on muddled signals from my nervous system and therefore confused senses. I try to compensate. I didn't come up with this clever idea, it just automatically happens. The body is smart.  
One recent example of misinterpretation happened at 4am.  Understand that I don't sleep so well, some pain issues. Therefore, when I am sound asleep it is extra offensive for me to be awakened.  
Cats are nocturnal. I have a cat. I am a cat owner. My partner...well he is a 'cat person'.  You all know who you are.  There are often new toys, beds, perches, accessories of various sorts being made, by my partner and for the cat. I awoke to the sound of the cat playing with a small blanket left on the floor in the bedroom.  Being a nocturnal animal he often has playtime at 4am. Being a woman in my 40's, the first thing I have to do when awakened is go to the bathroom.  The bladder waits for no one. I staggered, swerved and veered (proprioception very bad at 4am!) my way to the master bath. The cat continued to frolick and roll in the blanket. 
Now another issue that I have is my left eye.  My left eye takes about 10 to 15 minutes to wake up (meaning "open") if I don't get enough sleep.  It also tries to go to sleep (meaning "closes") after 10pm, which can lead to awkward moments if someone thinks I'm winking at them.  But that's another story.
Back to the cat. I stagger, unable to see much, muttering words I won't type, back out of the bathroom.  I reach for the blanket and miss (proprioception..hand was not where I thought it was). I stoop very low (to mess with my vestibular sense), grab the blanket and throw it in the hall. Then I spy a toy that the cat is also playing with.  I pick it up. It isn't very light at 4am and I stand there, one eye open, gripping the cat toy tight...(Metallica fans?) and I think to myself "Good grief, what sort of toy has he made for the cat now?"  I roll it around in my hand for 20 seconds or so. Compensating for lack of vision with my sense of touch!  Soft, very soft...'where did he get this furry fabric?' I wonder. Something round and hard. Marbles?  Did he fill some furry fabric with marbles? Thermoception kicks in...kind of this point my intuitive sense sends me a little signal.  Just a feeling.  A slight feeling of 'something not quite right'.  All is not as it seems. Enough of a signal to nudge my logical, rational mind into action. My chronoception (sense of time) moves at a Matrix-like pace as my brain works it out.  "It is not a toy!" my mind shouts at me. I drop it. I scream. And for the length of my scream I move my body back into the bathroom, with surprising speed and perfect proprioception! 

Yes my friends, the 'toy' was a mouse. Which my partner disposed of, while I washed and re-washed and muttered and screamed like a one-eyed crazy lady.
Luckily, my sense of humor is still in tact! I did not laugh about it for a few weeks. But the truth is- my body, mind and soul are trying to boost my sense of humor.  Instinctively.  To help me compensate for the misadventures that occur when my other senses are not working so well. So here's to more misinterpretations and misadventures!