Defeat ALS

A collection of thoughts on living and dying with ALS and the new path as a survivor.

Posts Tagged ‘Recovery’

The Tentra Totem – A Rx for Living

Posted by kklichtig on August 17, 2009

The key to getting over a case of the blues is to get out of my head. I mean, I have to literally take steps 2006_ALS Candlelight Vigil (113)to stop THINKING! About me, about my troubles, about my blues. It’s not ALL about me!! One of the best lines from the baseball movie Bull Durham is when Kevin Costner says to Tim Robbins “Don’t think ‘meat’, you just hurt the team.” Not so easy to do, but when the student is willing, the teacher arrives!
 
Over the weekend, I came across one of those chain emails (the ones where you almost reflexively hit delete!) that I read and then copied/saved, thinking at the time I suppose, that it might come in handy some day. Re-reading it yesterday, it seemed more like a “bucket list” for everyday living. And then it hit me! I can follow the suggestions on this list as kind of an antibiotic for the blues! So…it is my intent to follow this “Rx” for the next 30 days, as a gentle reminder of how much abundance I currently enjoy and practice some good, old fashioned gratitude! I’ll keep you posted on my progress!

This Tentra Totem has arrived from India and was sent to you for good fortune. It has already circled the world 10 times. Whether you believe in superstitions or not, devote a few minutes to read the Tentra, good fortune will reach you within four days from receiving the Tentra. Share the link to this post to whomever you think is in need of good fortune.

  • Eat plenty of whole rice.
  • Give people more than they expect and do this willfully.
  • Learn by heart your favorite song.
  • Don’t believe anything you hear and do not sleep as much as you would like to.
  • When you say “I love you,” say it truthfully.
  • When you say “I’m sorry,” say it with eye contact.
  • An engagement period of six months is crucial before marriage.
  • Believe in love at first sight.
  • Never mock other’s dreams.
  • Love deeply and passionately. You may get hurt, but this is the only way to live life at its fullest.
  • Deal with discontentment, fight fairly, but do not offend.
  • Do not judge others because of their relatives.
  • Talk slow, think fast.
  • When someone asks you a question you do not want to answer, smile and ask, “Why do you want to know?”
  • Remember that the greatest love and the greatest success also hold many risks.
  • Bless a person who has just sneezed.
  • When you lose, do not lose the lesson.
  • Remember: respect for yourself, respect for others, and respect for your actions.
  • Do not allow a small disagreement to hurt a great friendship.
  • When you notice that you have made a mistake, take the appropriate steps to correct it.
  • Smile when you answer the phone. Those who call can “hear” your smile.
  • Marry (or be with) the person you love talking to the most. When you get old, conversation will be more important than anything else.
  • Spend some time alone.
  • Accept change with open arms; yet do not give up your values.
  • Remember that sometimes, silence is the best answer.
  • Read more books and watch television less.
  • Live a good, honorable life. Later, when you grow old and remember the past, you will enjoy it once more.
  • Believe and trust God, whomever/whatever you conceive God to be, but securely lock your car.
  • An atmosphere of love at your home is most important. Do all that you can to create a calm home full of love.
  • Do not bring back the past.
  • Read in between the lines.
  • Share your knowledge. It is the way to live forever.
  • Be gentle with our planet Earth.
  • Pray. Prayer has incredible power.
  • Never interrupt someone who flatters you.
  • Take care of your problems.
  • Do not trust a man or woman who does not close their eyes when you kiss them.
  • Once a year, visit a place you have never seen before.
  • If you make a lot of money, channel it so as to help others while you are alive. This is the greatest satisfaction a treasure can reward you.
  • Remember that sometimes, not getting what you want is very lucky.
  • Learn all the rules and then break some.
  • Remember that the greatest relationships are the ones in which the love between two people is greater than the need one has of the other.
  • Judge your success in light of what you had to give up to obtain it.
  • Relate to love and to the kitchen completely. (All the reason you need to see the movie Julie and Julia!)

 

I hope you enjoy and are inspired!

Posted in ALS, Recovery | Tagged: , , , , | Leave a Comment »

Gratitude

Posted by kklichtig on August 7, 2009

2004_Bill & Kat in SFI learned a very valuable lesson earlier this week and I want to thank you for taking me on as a willing student…and teaching me! In the past, I haven’t been good about sharing my progress and setbacks in the process of grieving. I’m not too excited by my own company, so I certainly don’t want to burden my friends! “The Funk” post was the first time I’d really been honest, even with myself, about how hard it is to grieve.

By reaching out, sharing my experience and asking for feedback, I received a wealth of warmth, personal sharing and encouragement, from places I never expected. Just like when I was a full-time caregiver, I am once again humbled by the lessons ALS has managed to sneak into my consciousness! THANK YOU!

4 months ago today, a young man named Drew Schemera earned his ALS wings and is free from this stupid disease. In his ethereal wake, he left a wonderful BLOG with a comprehensive set of links to ALS related sites. Even better…a fabulous (encouraging, thoughful, uplifting) playlist of 147 songs from all music genres. I’m listening to it as I write. #80, “You Get What you Give” by the New Radicals has become my new anthem! I’m sorry I never had the chance to meet Drew, but I am very grateful to his family for leaving his writings on the web.

Lesson learned: Be honest and reach out. There will always be a hand to clasp yours and a hand out of the funk can come from some unlikely places!

Posted in ALS, Grieving, Recovery | Tagged: , , , | Leave a Comment »

The Funk

Posted by kklichtig on August 6, 2009

So….I haven’t written for about a month or so. I’ve missed it, but the summer months are difficult for me. I go into a funk and climb into my “cave”, a self imposed RIF (reduction in fun) to hibernate with my grief. I lost my dad in August. I lost my husband in August. I lost his brother in September. I can get through the routine stuff…you know, go to work, try and work out, pay the bills, wash some clothes, and the like, but that’s about it. Every other bit of energy seems to be absorbed in this whole process of processing grief. It’s a job!2005_Napa ALSA Walk (8) 
 
In the year following Bill’s death, I was completely numb. I went through the motions – 365 days passed and I could barely remember what had happened, let alone identify specific moments in time. The second year, I went into a dark place and couldn’t identify what was happening. I couldn’t shake the sadness. Just when I thought I would be OK, Bill’s brother was killed in a freak motorcycle accident. I felt like I’d been pushed under water. The sadness in my bones lasted until after the first of the year and took the remainder of the year to melt away.  Year 3 approached and I really dreaded the summertime. I just knew that I was going to be sad, and sure enough… I received what I anticipated! However, my time in the cave didn’t last as long and I was encouraged.
 
Late last fall, during a period of intense introspection, I finally figured out (with much gratitude!) the source of my sadness. For me, summer and early fall are closely linked to loss of loved ones. To cope, my normally cheerful, optimistic self crawls to a place of safety (the “cave”) and assumes the fetal position for whatever length of time it needs to sort through all of the feelings of anger, sadness, hopefulness and faith that are associated with loss, leaving the rest of me to cope with the world. For me, this period is now fondly referred to as “the funk”. You might imagine that with the cheerful “me” on hiatus, the rest of “me” is not all that much fun – and you would be correct! I’m just not very good company during this period.
 
Coming out of “the cave” last year, I resolved to be more present with this period of time each year…to pay attention to what was happening to see if I might learn anything. It’s odd paying such close attention to my feelings!? This year, I’ve noticed that the funk started a little later….and curiously it doesn’t seem to be quite as intense this year. Good news! I’m hopeful that this hibernation period is brief and restorative!!
 
How do you handle grief? I’d love to hear your thoughts, so please post a comment!

Posted in ALS, Caregiving, Uncategorized | Tagged: , , , , | Leave a Comment »

Hey papa….I’m doin’ OK!

Posted by kklichtig on July 15, 2009

I no longer have men to honor on Father’s Day. Big sigh! I am incredibly grateful to my mom who had to step up way too early to fill both roles when my dad was killed in 1986. She is awesome! I spent the weekend with friends and strangely, my dad and both of my grandfathers have been very close to me today. Note to self…it’s probably because I finally slowed down a bit so that I could hear their wisdom! It’s the end of the day and I’ve actually been feeling a little sorry for myself. Boo hoo…pity party’s over!

A short history! I’m the oldest of three and my father’s (and mom’s) first daughter. I was the first grandchild for my mom’s parents and the first girl for my dad’s parents. In sales, this is called the “sweet spot!” My sister-in-law Flo reminded me tonight that I was truly blessed to have a dad who told me (as did hers!) that I could be and do anything I wanted. Both of my grandfathers spoiled and shaped me with equal parts of love and discipline. Over the years, I’ve spent countless hours crafting a card or saving money to purchase just the right card and gifts to honor the great men in my life. Tonight I realize that I honor each of them with the gift of the woman I have become, complete with a little tiny spark from each of them. Here are a few of the many lessons I have learned from three great men.

 
At two (ish), I was a driver…no surprise to those that know me, but in this case it’s not a personality trait… I really thought I was a driver! I was left unattended for a split second (the way it always starts!), crawled up into the driver’s seat of my grandfather’s car, pulled the gear shift into reverse and gleefully rode backwards, down the driveway into the street of a very quiet suburban neighborhood in Van Nuys, CA.
 
My Grandpa Bernie was a fair, but stern disciplinarian and as soon as I was pulled safely from the driver’s seat, he administered a single, very firm swat to the seat of my too young to drive bottom. Tears ensued. I went to the judge of my favorite court…my dad…knowing that through my tears, justice would be served! “Grampy spanked me!” My father, an equally fair man heard both sides of the story, held me in his arms and decided in favor of the defendant “You probably earned it!” Case dismissed. I learned very early that there will always be consequences for my actions, but that I could always count on my dad to hear my side of any story.
 
I love this photo of my sister “J” and me which was on my grandfather’s dresser for as long as I can remember.
 
I moved away from home when I was about 23. My parents were equally supportive and helped with the move, but it was my dad who drove with me from Concord to Petaluma with the last load of my belongings. We talked about a lot of things that day, but I remember asking if he was going to miss me once I moved out. I had the cool parents growing up! After a long pause, he said no, that he was going to miss my friends. I was crushed and could not hold back the big aligator tears of my disappointment. He pulled me close and said that I would always be in his heart, so he would never actually miss me.  It was a small consolation at the time, but over the years, I’ve come to understand this single moment in time from his perspective. As a parent, you pray that your children will make good choices when selecting their friends and associates. My parents believed that your character is measured by the company you keep. I am truly blessed and always have been, with some extraordinary friends. I have friends today, that never knew my dad, but I know in my heart that he would have loved them and would be proud of my choices!
From my grandpa Mac, I learned grace, quiet dignity and the fine art of entertaining seven young grandchildren at a formal dinner table. You can see from the photo there was a certain twinkle in his eyes that drew everyone in and made them feel special. My grandmother Gladys was certain that it was her sole responsibility to ensure that we were instilled with civility and table manners. She did a great job, but kids are kids and sometimes you just have to “bust out”…even if you’re a big kid!! My grandfather would never defy or challenge my grandmother openly…that could only lead to the woodshed! However, he was a kid at heart and would slip us a piece of forbidden candy, whisper something funny to one of us and ask us to pass the “secret” to one of our parents, or some equally mild mischief. To which, my grandmother would often raise an eyebrow, give us all “the look” and order would once again be restored to her beautifully set table.
 
At one holiday meal, with 15 or so of us seated around a very long table, my father (seated at one end) asked his father (seated at the opposite end) “hey pop, can you toss me a roll?” Without hesitation, my grandpa Mac selected a roll from the linen napkin lined basket and launched a perfect pitch to my dad, who was equally quick to raise his hands and form a two handed catcher’s mitt. Thud! All eyes turned to my grandmother who had moved to the kitched for something. Not one single breath, peep, twitch, blink, or other movement came from 7 awestruck grandchildren and 2 nervous mothers, for a full 30 seconds. You could have heard a pin drop on the carpet!!! A (very, faintly) fleeting smile accompanied her trademark raised eyebrow and everyone let out a collective breath. I can only imagine the conversation my grandmother had with my grandpa that night after we were all safely in our respective beds!! The lesson I learned was that good table manners matter, sometimes you need to be serious, but when it gets too serious, it’s a good practice to toss a roll!
 
My dad was and will always be a super-hero. This is one of my favorite photos from when I was in Job’s Daughters. The final lesson learned from my dad that I will share with you is this. It is not the job of parents to just hand things to children or to do all their thinking. My dad told me regularly that his official job was to teach me to think for myself. He and my mom believed that parents are responsible for raising children who can operate independently in the world. His job was to think for himself and just stay a little ahead of me so he would always seem to be wise!
 
If you think about it, it’s really too much work to think for two people. My gift to my dad tonight is to acknowledge the following exchange between us… the coolest gift my dad ever gave me.
“Dad…I’m doing/planning to do XYZ”.
“Are you sure you want to do that?”
“Yeah dad…I’m sure”.
“Are you SURE, you’re sure?”
“Absolutely!”
“OK. I have some Band-aids and a bottle of Bactine ready on the sidelines. The next time we talk, I’m gonna patch you up, pat you on the behind and send you back into the game…cool?”
“OK dad…what is it that I’m not seeing?”
“I have raised a very wise and beautiful daughter!”
To my dad and grandfathers…you rock! I miss you so much, but know that I am a living tribute to each of you. I am grateful for your love and strength. To all the dads out there….EVERY SINGLE DAY is Father’s Day. Hug your daughters tight and tell them you love and respect them. Remind them daily they can do or be anything they choose. Tell them you are honored they carry your name and that you are their #1 cheering section. Tell them you will always be on the sidelines with bandaids and bactine. Love them as you patch them up and send them back into “the game” of life. Tell them you pray they will marry men who will respect and honor them. Teach them to hold out for those honorable men. It is the single best gift you can give us.
 
“It gets a whole lot more complicated when you have kids…The most terrifying day of your life is the day the first one is born…Your life as you know it is gone. Never to return. But they learn how to walk, and they learn how to talk…and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life.” Bob Harris, Lost in Translation

Posted in ALS, Grieving, Recovery | Tagged: , , , | Leave a Comment »

The New Road

Posted by kklichtig on July 15, 2009

Starting over without your life partner is not easy. In fact, I am inclined to agree with what many say about ALS. It SUCKS!
 

 

 

The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, “handle” the bugs and rodents that occasionally show up or even send up his distinctive “meow” because I’ve wandered away from him in the grocery store and he can’t find me. This, and oh so much more…I miss.
So…each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it’s familiar, where I would like to be. Where Bill and I were – together. I can stay in bed, under the covers, and let the world go on its merry way. I don’t have to participate and you can’t make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill’s death. I can definitively tell you that it’s dark and not particularly interesting under the covers!
So the only real option for me seems to be – put on my big girl knickers and a brave face, pack a snack and hit the new road. I’ve learned and come to appreciate, that if I am nothing else…I am resilient. I am not wired to live in the past….I live in the here and now. Unfortunately, I’m told that I make grieving look easy, or worse, that I didn’t grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.
So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill’s passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the “same” me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can’t breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general…look/feel like crap! Great!? How would I ever break the cycle?

For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red “right” the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It’s not always easy, but each day it gets easier and I have never looked back. Thank you Alisa…you are a genius!


SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.

Posted in ALS, Grieving | Tagged: , , , , , | Leave a Comment »

 
Follow

Get every new post delivered to your Inbox.