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!

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

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.

Material Things Don’t Matter

I know, we’ve all heard it! But it’s really interesting when you finally “get” it. I’m not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like “ashes to ashes, dust to dust, we shall all return to our maker”. Frankly, I’m a 70′s girl and think that the band Kansas got it right with “Dust in the Wind”, one of my all time favorite songs to belt out in the car….but I digress.

 

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty “creeped out” – no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it’s not easy to have these conversations, but for me, I received the ultimate peace. I didn’t have to guess or wonder what he wanted….I already knew.

 

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again…he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was “enough”.

 

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun – something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider “gifting” his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked “what would you like to do with the rest of the body?” eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop…”Well, I’m not gonna need it!”. They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It’s awesome! We signed the additional paperwork and never looked back. (side note:  I have since completed paperwork for myself and that feels pretty great!)

 

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his “never give up” silicon bracelet and his golden retriever, beanie baby went with him. It’s a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

 

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn’t need any clothes – that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

 

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

 

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but…I had this random thought! And…from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can’t help but wonder if they thought “hmmmm, naked guy with a bracelet and a beanie baby. I’ll bet there’s a good story here!”

 

In the end, it’s not the material things that matter. I believe it’s how you lived your life, thought of others and made people smile.

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?