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!

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.

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!

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.

The New Road

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.

Life is like needlepoint…thoughts on perspective

My mom’s mom, my “Grammy” Jean, was an artist. She (front lower right in the yellow shirt) doesn’t look like it here, but in her day, she was an accomplished painter, seamstress, sculptor, knitter and so much more. She also created beautiful, large scale tapestries (think love seats and major wall installations!) in needlepoint. The canvas on the right side of the photo is her interpretation of The Three Wise Men. She often said that all of her brains were located in her fingers! I don’t think that’s exactly true, but she was truly gifted!

When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is “try”! I’ve never gotten the hang of it! While I’m not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.

Anyway….a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory…when you are the artist, your skill and confidence determine how you approach your project.

Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you’ve ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back….to cover it up!

On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his…my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.

I believe in God. And this will sound presumptive, but I’m pretty sure God took needlepoint lessons from my grandmother! Here’s the tie-in. We – as humans – are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.
Seriously….take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions….everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you….are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)

As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don’t want seen.

To Him, it is all part of the grand design and it is completely beautiful….knots and all! To us…maybe not so much! I’ve come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?

Laughter is good medicine…

One of the more interesting symptoms of bulbar onset ALS is excessive/uncontrolled laughter and crying. We used to joke that the bouts of laughing and crying were kind of like the weather. You just need to be a little patient and the storm will pass.

I remember one particular incident where something got Bill laughing and then he couldn’t stop. He was standing at the kitchen sink and I watched helplessly as he just “slid” down the cabinets to land in a pool of laughter on the floor. Fortunately, at least on this occasion, he didn’t hurt himself! I jumped up and got behind him, to lift him safely as he’d carefully taught all of his caregivers. Only…his legs were not in a cooperative mood. I’d get him about half way to standing and he’d start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn’t have a prayer of getting him vertical again.

So…we managed to get him propped up in a corner, leaning against the cupboards. I grabbed a glass of wine for each of us and pulled up a seat on the floor right beside him. You can get a very interesting perspective on life and your housekeeping skills from this vantage point! The dogs must have thought we’d lost it, but decided to join us as well. What a site! We enjoyed the wine and talked about a lot of different things that night. The laughter ran its course in about 30 minutes and once he was back in control, we were able to get him safely standing again. We were back to “business as usual”. I’ve often joked that my life is “The Truman Show” and this was definitely one of the funnier episodes!

Lessons learned:
1) Life is about falling….Living is about getting back up!
2) Laughter is good. Too much laughter is not so good.
3) Take the time to laugh and enjoy the moment…don’t fight it – join it!
4) Hire a housekeeper!

Aftermarket add-ons for a motorized wheelchair – The Horn

During the final six months of Bill’s life, his brother Howard, our sister-in-law wife Flo, Bill and I spent a good deal of time commuting between Port Orford, OR and Concord, CA. On one trip to the top of Langlois Mountain to visit the Sr. Lichtigs, Bill complained to his brother that drivers couldn’t see him and he often felt unsafe when he was out and about on city streets in his wheelchair. He felt that he needed a horn that could be heard – and the “piece of crap that came with the chair” just wasn’t cutting it!

 

I will share with you here that Howard and Bill shared a distinct glint in the eyes whenever either of them had a “great idea”.  Some have called it mischevious…I preferred to think of it as trouble – with a capital T!  On this particular day it was Howard’s turn to have “the glint”.

 

Four of us piled into the van and headed to the Radio Shack in Bandon, about an hour from the house. The result (I’m sure you know where this is going!):

• 12 volt battery operated siren horn – $25 on debit MasterCard
• Assorted wires, wire ties, cabling, duct tape and a pile of AA batteries – $ 34 on debit MasterCard
• The ability to scare the living daylights out of your wife, your dogs and any drivers who dare to ignore you – priceless!

A few months later, Bill decided that the horn still wasn’t quite enough, so he and Howard, (in a tequila/scotch inspired brainstorming session) determined that “launchable” rockets were in order.  You know…like Top Gun.  They ran out of time, so Howard headed back to Port Orford, enlisted the assistance of the local cub scout troop (he was a pack master) and returned to California a few weeks later with some very lifelike looking rockets – minus the gun powder – which were promptly mounted to the underside of the laptop tray on the wheelchair. Success!

The “boys” spent the remainder of Bill’s life trying to figure out how to actually launch the rockets without blowing up Bill, the chair or the surrounding neighborhood! Given enough time, I fear they may have succeeded. Thank goodness…the world will never know!