The Tentra Totem – A Rx for Living

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 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!

Support Group – Strength and Knowledge in numbers

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone….there are others on this same journey.

I am always impressed by our group leader Eileen Nevitt’s ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC’s of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter’s YouTube channel.


Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.


Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:

• NO smoking!
• Early detection and treatment of everyday illness – don’t let a “little cold” grow up!
• flu/pneumonia vaccines
• avoid infection – steer clear of favorite germy hotspots like crowds, public transportation, doctor’s offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
• Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).

Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is “normal” for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

• Excessive daytime fatigue
• Trouble thinking or concentrating
• Morning headaches
• Not feeling refreshed in the morning
• Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
  

Follow-up

Once you and your physician have agreed on a colution, COMPLIANCE is critical. And…it will probably take some time to get used to the new routine. Margie shared some helpful tips.

• Choose an interface (mask/nasal apparatus) you think you can live with – there are many to choose from. Some vendors offer special 30 day trial programs.
• Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn’t leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is “just right” for you.
• If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
• Be persistent and keep trying. It may take a couple of tries to find the right solution.
• Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
• Enjoy the benefits of better breathing!

Each of us received a copy of “ALS Respiratory Decisions” A Guide for Persons with ALS and their families, produced and distributed by the Jim “Catfish” Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

Comforting words

Today marks the 4^th anniversary of losing my best friend and life partner to ALS, a disease that sucks the very life out of anyone it touches.  I share this final letter from Bill, in the hopes that it will inspire ALS patients to take the time TODAY to write a similar note and say everything you need to say…to your partner, to your children, to your grandchildren, to your parents, to your closest friends.  Ask or give forgiveness and clear the air.  Tell them you love them.  Share your hopes and dreams for them.  Whatever you choose, it will be great! 

 

To honor Bill’s memory, I read this letter and (kind of!) enjoy my annual shot of Jose Cuervo.  I laugh and I cry, but I am always comforted and reminded of just how lucky I am to have given and received unconditional love.  It’s also the reminder I need that it’s safe to come out of “the cave”. 

 

From: William Lichtig [blicht01@pacbell.net]

Sent: Monday, July 25, 2005 10:08 PM

To: Comm

Subject: Meow.doc

 

Meow;

 

 We have reached the point all too quickly in my trek to the end of my life where everything that happens to me is not just a safety issue to both of us or, a health issue to me, but it seems literally life and death now. Sucks, doesn’t it?

 

My outside looks almost normal to people sprinkled with an occasional thunder storm that you have weathered with strength, dignity, and conviction, much stronger than I have.

 

The doctors can only guesstimate and treat by what they see and measure, but the soul makes the real BIG decisions on what happens to a person.

 

My body has taken control of itself, away from me, so all that is left of me that I can still control is my soul, my essence if you will, and even control of that is wavering more and more on a daily, sometimes hourly basis. Everyone has told me that my landing will be peaceful and quiet, with dignity. Can I just tell you the trip is anything but, sort of like our daytrips in Mexico!

 

I will miss your laugh, your snuggling, but most of all, your soul, your essence, that what makes you, you.

 

There is so much more I could say, but you know in your heart how much I loved you, through thick and thin. The fact that you have stuck by my side throughout this ordeal, being my voice when I could not speak and my staunchest advocate, has showed me your strong will, your dedication to our relationship and most of all, your love for me.

 

I am extremely sorry to leave our relationship this soon and this way, but we fulfilled our vows to each other, in sickness and in health, till death do us part.

 

I love you.

 

B.

100 things, leading to a single choice

Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members.  I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week.  He agreed and I am thrilled to share his thoughtful essay. 

 

By Dr. Martin Welsh
July 26, 2009 

“I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.  For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body.   Soon, I will die from it. 

 Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.  It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.  “That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself. 

 Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine’s increasing ability to prolong life near its end.  I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful — for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech.  But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the  things I am losing.   Today, my guitars sit idle. I haven’t used my stethoscope in years.  My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise.  I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.

 Today, I find myself facing the kind of “quality of life” issues I discussed innumerable times with my patients.  Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it?  I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many “good” deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.
I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the “100 Things.”  Here’s how it works. Imagine a list of 100 things you do most days. Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.  Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living?  Of course! 

 But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can’t turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you’re getting tired.  At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.

 I know I will one day reach that point.  And that’s why I worry about feeding tubes and ventilators.  It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so.  I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically “indicated” in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say “Enough.” 
I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don’t want to go. I am determined not to start down that path, even if others think I’m being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.”

 

Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009.  Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.

Gratitude

I 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!

The Funk

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! 

 

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!

Aftermarket add-ons for your wheelchair – Safety and Style

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read “Aftermarket add-ons for your wheelchair – The Horn”.  This post is my account of a few OTHER additions made to the chair…

 

 

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron!

Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

Hey papa….I’m doin’ OK!

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

Learning to Laugh

ALS has taught me to laugh. Really laugh…from your belly until you start crying…laugh! And…I’m so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the “I’m so sad I’m sure I can’t breathe anymore” moments I still go through almost 4 years later. I have learned..it’s not what happens, it’s how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments….

 

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you “open” the system – but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE….If you don’t keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

 

Speaking of feeding tubes….There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill’s feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse..”Um…Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?” Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

 

Garage Door Opener
Bill’s brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.

 

As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!

Truly Living, an essay by Julia Miller

Angels are delivered to us every day. Sometimes we know…and sometimes we don’t. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our “extra hands”. I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.

Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.