Of the Earth, Love the Earth, and will return to the Earth

RIP Stephen Hawking (1942 – 1918), theoretical physicist and quick-witted man who lived with ALS for 55 years.

In the visible world, the Milky Way is a tiny fragment; within this fragment, the solar system is an infinitesimal speck, and of this speck our planet is a microscopic dot. On this dot, tiny lumps of impure carbon and water, of complicated structure, with somewhat unusual physical and chemical properties, crawl about for a few years, until they are dissolved again into the elements of which they are compounded.

Bertrand Russell

source: Astronomy Picture of the Day, September 4, 2011 In the Shadow of Saturn Image Credit: Cassini Imaging Team, SSI, JPL, ESA, NASA

Photo Explanation: In the shadow of Saturn, unexpected wonders appear. The robotic Cassini spacecraft now (2011) orbiting Saturn drifted in giant planet’s shadow for about 12 hours in 2006 and looked back toward the eclipsed Sun. Cassini saw a view unlike any other. First, the night side of Saturn is seen to be partly lit by light reflected from its own majestic ring system. Next, the rings themselves appear dark when silhouetted against Saturn, but quite bright when viewed away from Saturn, slightly scattering sunlight, in this exaggerated color image. Saturn’s rings light up so much that new rings were discovered, although they are hard to see in the image. Seen in spectacular detail, however, is Saturn’s E ring, the ring created by the newly discovered ice-fountains of the moon Enceladus and the outermost ring visible above. Far in the distance, at the left, just above the bright main rings, is the almost ignorable pale blue dot of Earth.

I have loved this photo of Saturn with the tiny dot of Earth far far away, since Neil DeGrasse Tyson used it in a presentation at the University of Nevada back in 2011. Seeing photos of how truly small we are in the Universe makes Bertrand Russell’s quote above even more poignant.

Seeing photos from Ash Wednesday last month reminded me of all my childhood Ash Wednesdays – getting ashes (of what?) spread in a cross on my forehead while the priest said, “Remember man, that you are dust. And to dust you shall return.” Being a geologist, I like the idea of being part of Mother Earth after death. If I donate my brain to ALS/FTD research, can I still be cremated and request where I want my ashes spread? I will have to research that.

From my mother-in-law Cathy, who is reading Neil DeGrasse Tyson’s Astrophysics for Busy People; to my mother-in-law Sharon, my sister-in-law Terry, and Keia (one of the foster teens I mentored), who are all into energy healing: it all comes down to energy and particles and waves.

But in the years between being dust and going back to dust, there is a lot of being human that takes us so far away from remembering that we are mortal.

Some people leave this earth suddenly, but those of us with fatal diseases get time to contemplate our mortality. It makes me sad to think of leaving all that I know about this amazing planet and all the people on it that I love, especially Stan and Andy.

And my cross to bear is this mucus problem. I finally got all cleared out and found a breathing technique to open up my throat by belly breathing (our natural way of breathing that gets closed up by the stresses of life). But then I thought my bipap was broken because I am waking up all dry, but it was not. I am waiting for a new mask (on order) which could be part of the problem. But it is now difficult to keep my mouth closed especially when it is dry and it gets dry from the air of the bipap even with the humidity turned way up. So I have to work to get all cleared out again each day. I have tried a chin strap but I have an overbite – orthodontics weren’t as good when I was 12 as they are today. So I have trouble keeping an airtight seal when sleeping. I have ordered another type of chin strap and we will see if it works.

I need to put a caveat on the breathing program I shared last week. It will only work for ALS patients who still can control their diaphragm and intercostal muscles between their ribs and their transverse muscles. I apologize for presenting it in a way that sounded like it could benefit all ALS patients.

So I did not get my usual winter break from mucus this year. Even if I figure out how to stay balanced, grass pollen will be back soon and my allergies will be back too. And this year I know that antihistamines cause thicker mucus, so I will have to stay away from them. My new breathing technique will help but I will be tied to my machines and home. But home is a nice place. After all these years, I am working on my office, which had been cluttered FOREVER. I got a good start – a new rug and new window bench and lots of recycling. But now I have taken a break from decluttering to get taxes done, but I will get back to the decluttering – I have big plans as long as I have enough time on Earth. And I can use a humidifier in this small room and help keep my mucus thin enough to swallow, usually.

I also decided to quit adding fiber to my diet – I think the added fiber was contributing to my reflux. And I will add walking before meals – I may need a pollen mask. I walked around the block on Monday before lunch and a few hours later I had thick mucus, that would only loosen up a tiny bit with guaifenicine. It is not like my usual allergy mucus. I will see my General Practice Doctor Wednesday afternoon. I hope I am not sick. In the meantime, I am using nasal saline spray in my mouth, along with guaifenicine, and I can get clear going through the tedious cough assist and suction routine – deep suction only in 10-second intervals because longer times risk lung collapse. I can only use guaifenicine every 4 hours but saline spray as often as I want. It tastes very salty to me because I have not had salt in over a year (except for that Pacific Ocean natural netti pot on New Year’s Eve with the vacuum cleaner suction).

There are flowers blooming outside, snow on the mountains, and my orchids are happily blooming in my south facing kitchen window. There is still a lot to enjoy in my remaining days alive on Earth.

ob la di, ob la da, life goes on

This Beatles song was played during an aqua fitness class last week. The instructor had us doing intervals, alternating mogul skiing with high knees, and speed skating. Thinking about these sports brought back memories. About 12 years ago we vacationed at Steamboat Springs, Colorado, meeting my sister Sue and her family from Houston. The Olympic trials for mogul skiing were going on there that week, and I remember the skiers with white patches on their knees going back and forth incredibly fast. So I try to emulate them in the pool. The speed skating reminded me of the speed skater in my high school class and her older brother who was a speed skater too – the Cabanbans. It is interesting to watch the memories that come back to me and what triggers them.

Andy started his Junior year of high school last week. One of his classes is AP U.S. History. He commented on his reading assignment for the first night of homework. It was an article about something that happened in 2005, the year he turned 5. He said, “I am old.” This triggered a memory from my U.S. History in high school. I remember being shocked to find out that the Civil Rights Act was passed in my lifetime, in 1964, the year I turned 4. It truly seemed to me that it should have been law much earlier in our nation’s history. And I probably shared Andy’s amazement at being old enough to study history in my own lifetime.

My grade school and high school classes lost a member last week. Mike Engels came to St. Giles in 6th grade. He had muscular dystrophy and they told us he might not live through the year. He walked with arm crutches when he arrived, but soon was in a wheelchair. Our old Catholic school had two story and three story buildings, and of course no elevators back then. Some of the guys in my class would carry Mike on their backs up and down the stairs. Mike didn’t die in 6th grade, but made it to age 57! I took piano and sewing lessons from his mother in high school so I would see Mike at his home too. He studied accessibility architecture, was a disability access activist for a while, had his own greeting card company, and was an active member of a group called Association of Horizons, a Chicago organization that provides summer camp and other outings for disabled adults. The family asked for memorial donations in Mike’s honor to the organization that was such a big part of his life. associationofhorizon.org/wordpress/

Many of my classmates shared memories on the news of his death that brought back memories to me of this great guy.

Mike reached out to me last July right after hearing of my diagnosis. This was his Facebook post to me:

Dear Meg Saunders Macdonald my heart goes out to you, learning that you have ALS. I just want to offer words of encouragement to hang in there. I have had Muscular Dystrophy for 50 years. Been using a feeding tube for ten years. I cheat and drink a few ounces of a favorite beverage during the day. It’s hard to turn down some ice cold chocolate milk. Also eat a few pieces of watermelon now and then. It has been seven years now that I have also been using a ventilator full time. I have full time care that puts me together like Mr. Potato Head. It really helps to keep your sense of humor. Feel free to reach out to me. Sending you a warm hug.   Mike

Mike’s Facebook.Profile picture. Rest in Peace Mike. You were a wonderful example of how to live with what life gives you. You lived with Muscular Dystrophy for 57 years and kept your sense of humor, and even still drank margaritas!

Going back to very early life memories, our great nephew/grandson Oliver turned one on July 26. He lives in Hawaii so we couldn’t be there.

Happy birthday Ollie, we love you so much. I love the new tradition of first birthday cakes made out of fruit (photo sent by Jonika)!

I also remember that terrible day – the day before Andy’s first birthday – 9/11/2001. But on Andy’s first birthday, we let him get chocolate all over his face. 

On Wednesday, Stan and I watched a Netflix documentary called Chasing Corals which was about a film crew documenting the spread of coral bleaching and dying as sea temperatures rise as our atmosphere fills with greenhouse gases. It was disturbing and sad because I want Ollie to see coral and I want Andy’s future kid(s) to see coral too. I was also sad to hear that the corals I saw snorkeling in the Florida Keys on a geology field trip in college are all dead. That amazing day of snorkeling in 30 feet of crystal clear water and the beautiful coral inspired me to get certified for scuba diving. It is really important to reduce emissions of hydrocarbons worldwide, and somehow do it quickly to make coral gardening possible. If all the coral dies, the ocean ecosystem will collapse, leading to widespread famine and poverty for the cultures that depend on fishing. So please do your part to reduce emissions – no idling, turn off unused lights, try to drive less, contact legislators or whatever else you can think of to help. Congrats to you if are off the grid and using renewable energy.

I had another flashback to first grade. I visited Katy, Andy’s personal assistant/ tutor, in her first solo classroom. I brought her a salad from Eclipse Pizza, and we shared lunch.

I stayed while she taught a lesson after lunch. It was School Rules and Rhymes. There were two girls who always had their hands up. I was that way in first grade too. But later I got shy. She introduced me as someone she used to work with and she told them it was cool that I talk with a computer (my phone) and type what I want to say. I used some of their class phrases – I said, “Holy Moly Guacamole you are all so smart”.

On Saturday night, our friend and former neighbor, Joyce, got a group of family, current and former neighbors together to go see a live production of The Sound of Music at Bartley Ranch Outdoor Amphitheater. The day before was her late mother’s birthday. She got the group together to go see that show in memory of her mother. It was a special memory of my mother also. It was the first movie I saw in a movie theater when I was 4. I remember that day –  a dentist appointment in Oak Brook, then such an awesome movie for my first one, and just me and mom (the luck of being the oldest girl!)

The entire group, minus photographer, Vince.
Amy and Scott, who we bought our house from, Joyce and Vince who were our next door neighbors, and then Scott and Amy moved back and bought Joyce and Vince’s house, so they were our neighbors too! Photo by Kathy Zodiaco.
Joyce, Vince, and their daughter Kathy. They are,such lovely people to have in our lives!

And now a memory from just a year ago: Ales for ALS. Our local Great Basin Brewery brought Buster 4 back. For every pint sold they donate $1 to ALS TDI.

Find your own participating brewery here: http://www.alesforals.com/brewers.aspx

On a totally different subject, but one that makes my life easier and less messy: new packaging of my feeding formula.

 On the left, Jevity 1,5 in a can. The new packaging is on the right. 

For about a year now, I have been feeding myself with the cans. They are awkward to pour into the feeding tube, especially with my lazy eye ūüėČ, which causes depth perception problems especially when I am tired or fatigued which is often. The cans also drip, and make a mess on whatever surface you set them on. So the new packaging is great – easy to pour and resealable too. It is also easier to carry around. So only 12 messy cans to go – that is two days. And then all my messy meals in the first year of my feeding tube will be a memory too.

It is wonderful to be able to eat without dripping or making a mess. At least I can hope it will be less messy! Of course. Jonika used to call me MAM for Messy Aunt Meg for my tendency to spill food on my clothes, so it may be hopeless!

Ob la di, ob la da, life goes on.

 The Path of Life 

The Presence of Time by Josie Parrelli

Where the clocks are beating
The journey starts
Life is a sense of timing
Who we meet, who we see
What we do
Each step we take
Guides us upon our path
Confused, we question
The clock keeps beating
With no rythym or rhyme
That’s where the confusion has started
We fear the clock beating
As if it’s a mocking call
Eyeing your every move, seeing your falls
Be still in the moment, the clocks are not your foe
They are beating
In your rythym
Your time
For the clock beats differently for all of us
Our steps, our journey
The presence of time is your friend
Listen to it, hear the beats 
For when the time hits
You realize that the clock was always beating
In your time, your tune
For the presence of time is never to be feared
Never to be questioned; never to be argued with
Listen to it, hear the beats
Hear the melody, sing the song
Strum the beats
For within the melody is where your destiny lies
Believe and trust 
For the presence of time
Is a gift, unique to us
This is your Life Purpose
For here is where your story is told

Source: http://www.inspirational-quotes-and-poems.net/life-poems.html

We each walk our own path through life. We can control some of the direction of the path, but there are many other things that control the direction of the path too. In the end, you live on the life path that is uniquely your own.

We attended the memorial for our friend Joannie’s uncle, Takashi (Taka) Togashi, in Palo Alto, California last Monday. Our friends Tim and Joannie helped take care of him in his final years. He was 89 when he passed away. He was born and raised in Modesto, California. He was in high school when he and his family were interned during World War II when the U.S. government evacuated Japanese Americans from California. They were relocated to the Merced Assembly Center and shortly thereafter to the Amache Relocation Center in Southeast Colorado. He graduated from the Amache Relocation Center high school in 1945, then moved to Boulder, Colorado. In 1946, when he was 18, he was drafted into the U.S. Army. After basic training in Texas, he was sent to Tokyo, Japan and held an office position at the U.S. General Headquarters there and received his honorable discharge in late 1947.

His main career was with the U.S. Postal Service, starting in 1956 at the Denver Post Office, and transferred to the Palo Alto, California Post Office in 1970.

At the beautiful memorial service, which was coordinated by Joannie, several relatives spoke of their memories of Taka, starting with Joannie.

Joannie spoke of taking her Uncle Taka swimming at 24 hour fitness several times. She said when she was finished with her swim workout, he never wanted to get out of the water. He told Joannie one of his favorite childhood memories was swimming in the Modesto irrigation canals, which were locally referred to as the Modesto Beach (Modesto, California is landlocked).

She also spoke of his interest in technology. In 2010, he invested in Tesla stock because he liked Elon Musk and the prospect of electric cars being better for the environment. He wanted to live long enough to see self-driving cars made by Tesla driving around safely. In early 2017, Joannie arranged a Tesla test drive for him. She said the salesman parallel parked with his hands off the steering wheel, and that was good enough for Uncle Taka. He was very happy.

Then Joannie’s husband Tim spoke of driving Uncle Taka around to appointments. As they passed local horse race tracks in San Mateo and Oakland, Taka told Tim stories about his love of Thoroughbred horse racing.

Joannie’s sister, who is a doctor at Stanford and claimed to have never spoken extemporaneously before, told of her memory of visiting Uncle Taka in Colorado as a little girl and wanting to hold his hand all the time. She thought he liked it.

Then another cousin said he also remembered visiting his uncle in Colorado and going fishing with him.

At the graveside service, the minister spoke eloquently about Taka’s unique path in life: how he didn’t have control about being relocated or drafted but those things became part of his life path and how he didn’t know that holding his little niece’s hand or fishing with his nephew would cause a lasting memory for the children. He also said Taka probably didn’t realize that swimming in those canals would be a lasting favorite memory. He spoke of the social nature of going to the racetrack – connecting with friends while enjoying their horse race betting. He even mentioned the Tesla salesman, who may not have realized the significant life event he created for the old man. He went on to say that we are each on unique paths, and we also may not realize the impact we are having on others.

The service was a wondetful tribute to one man and his life path and how it was influenced and how it influenced others. Stan and I really enjoyed visiting with Joannie’s family and friends (connecting).

Through Facebook I have heard from people in my past that I didn’t even remember who told me what a lasting influence I had on them. One was a guy one of my sisters dumped and he said he remembered how kind I was to him sitting on the front steps right after that. Another was a high school classmate who I didn’t even know who said my leadership of the high school newspaper helped him believe he could succeed in journalism, so he started down that path in college.

Every day we come into contact with people, and any interaction could make a difference in someone else’s life.

Thinking about my own life path, I was a member of Soroptomist International of Truckee Meadows about 25 years ago, and through a speaker at one of our luncheons I had the opportunity to mentor foster teens. I think I was drawn to that because my own family was disrupted in a pretty big way when I was 18 (divorce and death of my brother) and I couldn’t imagine launching into the world at that age without even divorced parents to support you. I still keep in touch with both of the teens I mentored and they have both told me how much I impacted their lives at a time when they really needed support. Those are relationships that have a positive symbiotic significance in each other’s lives.

Keia, one of the teens I mentored, is now a holistic health specialist. She came over to our house last month for a family healing guided meditation. I asked her if she would be willing to come to an ALS Support Group meeting and do a mind based stress reduction presentation, and she readily agreed.

Keia, talking at the ALS Support Group meeting (while eying me taking photo ūüėČ) with Taryn Joyner, the ALS Association of Nevada Care Services Coordinator, listening.

Coincidentally, one of the people at the meeting had recently lost her husband to ALS and we figured out that we had been in Soroptomists together so long ago. There was also an ALS patient who conference called in to listen. Keia did a wonderful guided mind based stress reduction with us. She had researched ALS and gave us tools we can use at any time. 

In the guided meditation Keia emphasized our own unique hands, and feet, etc. and the importance of honoring these body parts that have served us for so many years. And she spoke of our one true path that included both happiness and sorrow, and how that’s ok – it is our own path no matter what route it takes.

ALS is on my path and that’s ok.