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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 www.29gifts.org  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 www.29gifts.org 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 morning.www.29gifts.org