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.

Ales for ALS

The past week was sandwiched between two weekend campouts and it was the week before school starts at my job in an elementary school office, plus all my siblings (4 of them) came to town. I still had to get a blog post done. Luckily there is anorher great ALS fundraiser to tell you about.

My husband Stan loves hoppy beer and was happy to find that he can support ALS research at our favorite local brewery.

Great Basin Brewing Co. is participating in Ales for ALS 2016. Participating brewers get a proprietary hop blend, free of charge, in exchange for participating. Each brewer then brews a special beer with these hops and will donate a portion of sales to ALS TDI for ALS research.

Great Basin brewed Buster #4 which is an American IPA.

Great Basin has hanging chalkboards showing the available beers.

I like that it’s named for Buster Posey of the San Francisco Giants. Go Giants! Stan likes the beer (I had a sip and liked it too).

Find your own local Ales for ALS brewery at alesforals.com and drink a beer to cure a disease!

Please support my #whatwouldyougive campaign, also raising money for ALS TDI here.