This is Tim and Holly Erskine's way, way, way too long end-of-year letter to friends and family.
Because I write too much (Holly, obviously) I had assumed my end-of-year annual report was a Burden to the Universe and sent it out with a lot of embarrassment. To my astonishment, I had a few people gush about it and request digital copies.
It is because of the encouragement of these kind people that I am reposting here.
Tim writes first, then me:
Dear Loved Ones,
We’ve reached the stage of isolation where I choke up whenever the idea of hugging one of my friends or family members occurs to me, which is happening more and more frequently. There are going to be many tears when we can finally make physical contact with one another again––for the next many months we all must remain patient and hopeful. My dear wife Holly writes about the details of our year below, which at a personal level has been easier on us than the prior year because we lost so many loved ones in 2019. We are stuck in a pandemic retreat in the north woods comprising a forest, a view of Green Bay, a motion picture and recording studio, a computer science lab, multiple workshops and three cats plus a nurturing wife, all for which I am lucky and daily grateful. My hardships are as nothing compared to the cosmos of hardships.
Five years ago, I had finally had it with a world of commerce in which men believe they have the right to force information of their choosing into the minds of others for profit or coercion. So I decided to architect a new way of doing commerce that does not rely on trickery and deception to operate, and doesn’t require peeping Tomism. And I thought making a feature-length sci-fi film was difficult?
The first three years were spent architecting the system and documenting it in a 43,000 word patent application with a PhD’s worth of flow charts and figures to inoculate it against future attempts to stop it. The last several years have been in figuring out how in the world to turn it into something real that people can use. Most of that time was spent experimenting with different programming languages and software development environments. Also during that time I learned what it means to be a student and open oneself up to receive knowledge––oh, how I wish I had learned that as a young person!
Finally, in early December of 2019, I wrote the first lines of code that would find their way into the actual multi- platform Maffle application (My Ad-FFree LifE). My life has been characterized by Quixotic quests where I learn how to do something (mostly by myself) that is usually done with large teams of talented people. I believe I have learned the weaknesses (and strengths) of the lone cowboy (or court jester) in the wilderness approach, in particular to embrace the ingenuity and industriousness of other people who want to help make a difference.
So I had to learn cryptography and several new programming languages (I’m up to maybe 14) and create messaging and notification server protocols from scratch, so I could create a truly private messaging and document publishing platform, and now I have a beta that has communicated across the world.
So 2021 will be the year where Maffle gets released into the wild and I will find out if I have been a cowboy or a jester, for richer or for poorer.
––Tim
Dear Family and friends,
First, you don’t have to read all this. My first reaction to seeing a big block of text from anyone is AGH.
You don’t have to read this, I officially relieve you of that burden if you like. This is just a summary of how our past year went.
Tim writes above that “We are stuck...in a pandemic north woods retreat...with a nurturing wife...” and I think, we are? Where is this person? Because I could use her right now. I’d like her to clean my office, for one thing.
We can’t include any pictures here because our very big expensive color printer is not working for a reason that is more serious than usual, Tim says.
We are grateful our year has been relatively easy, other than agonizing about the welfare of everyone else. 2019 was the worst year for both Tim and me. It was actually far harder for us than 2020. Between ourselves, Tim and I call it the Year of Everyone Dying.
In 2019 I was managing the aftermath of my stepfather Mike Wadyko dying on Christmas eve 2018, managing my mom’s accounts, getting her onto Medicaid so they would take over the 10K per month fee of her stay at the nursing home near me. In 2019 Tim’s wonderful father John Erskine died, and in the midst of the Erskine family going through this, Tim somehow (in a dangerous, deadly Wisconsin snowstorm no less) helped me move my mom from Colorado, from what must be one of the worst nursing homes in the US (not just according to the 1 star ratings online but also obvious from staff going to jail, and in the hand over they gave me someone else’s meds, not hers, when I requested hers) to one of the best 5 star rated in Wisconsin five minutes from our home. (Each cost the same, 10K per month. Figure that one out.) We also lost Tim’s wonderful aunt and uncle in 2019, one after the other, Mary Ellen and Dave Rothwell, Tim’s dad’s sister to brain cancer, and her husband shortly after that. We miss their energy and intelligence terribly.
Just this past month, we also lost Tim’s dad’s older sister Alice, after complications in a fall. Alice was also full of energy and intelligence and so now there feels like quite a vacuum surrounding John Erskine and his two sisters.
In Oct 2019 we also lost our darling, darling 12-year old Neutron the cat to cancer, and he did very well on oral chemo for over a year until suddenly the cancer took over and we euthanized him in a timely way. He has joined Alby and Quark in our burial site in our little woods here on our property. We are left with three cats.
Wilbur is feisty, needy, yells a lot. Fringes, Neutron’s mom, the oldest, is very happy and affectionate and playful. Cupcake is a mystery former feral that I caught in our woods, seems happy, purring louder than any cat I have ever known, often for no apparent reason all by herself. She is now a breast cancer survivor. Yes, cats commonly get breast cancer, especially if they had a litter of kittens, so rub the tummies and feel for lumps. She had all her lumps removed and she is getting a lump check tomorrow. We hope she is in the clear and that they have not metastasized.
Update: The vet says she has a heart murmur and possibly more lumps and is not likely to withstand more surgery. So Tim and I are both sad about that today, and hoping she will last a good while like Neutron did. She seems happy at least.
So March 2019 I went from a long-distance POA to a short-distance POA for my mom, moving her from Colorado to our home town, which is a lot easier, I can tell you. My stepfather used to call me two or three times every day to manage my mom in her former nursing home, that is not an exaggeration. Crisis after crisis. So that problem went away.
We decided at first to not tell my mom her beloved spouse had died, that he was “traveling”. He was planning a spiritual retreat after all. We were told that people with dementia remember the loss over and over and it is too horrible for them, depending on their stage of memory loss. It was good advice. After some agitation, demanding to know where he was, she got used to him not being around, growing to enjoy the wonderful community she is now in here at Scandia nursing home five minutes from our home. Scandia is amazing, with happy staff and gardens with flowers and vegetables, it once had concerts all the time, lots of community events, chapel services I would go to every Sunday and wheel my mom in to sing with me. I used to be able to have her delivered to my house for an hour by van. My mom went from looking very unhealthy to being all pink and rosy and healthy looking. She’s getting the best care now. They love how cheerful she is.
Christmas eve 2018, some Colorado coroner called me on my cell phone to tell me that my stepfather had died in a fall down stairs he had visited my mom. Tim and I were celebrating at a friend’s house, and one year later, I found I a superstitious fear of being in Wisconsin in 2019 during Christmas again, just the memory of the shock of that phone call, I could not stand to repeat that. We were invited to the same friend’s house for Christmas eve and I thought OH GOD I CAN’T. I CAN’T. Just the memory of that phone call. That location. That anniversary. I’m not normally superstitious but the idea of repeating the circumstances of that shocking call just had me shaking.
So I begged Tim, we have to go somewhere else for Christmas! So thank goodness Tim's sister Mary accepted us at her lovely new home in Sarasota, where I could form a different Christmas memory than the traumatic one of the year before. And Tim turned 60! I am so grateful we have the memory of that happy 2019 Christmas, thank you, Mary!
It pained me, of course, to not mention to her someone who had been a huge part of her life for 30 years. This had a happy resolution, which I will talk about in a bit, as I go chronologically here.
Perhaps I was percipient (once one of my mom’s favorite words, along with whee) but for whatever reason, in early 2020, I had resolved that Tim and I would participate in as many social activities as we could manage. We went to a dinner put on by our Unitarian church, we started playing board games with friends, we had friends over for brunch and they had us over too.
So I remember January and February 2020 being pretty busy for us socially, and that is hard for us, because we are both introverts and it takes a lot of energy for us to get out there. I was in the habit of visiting my mom in her nursing home about three times a week since we had moved her here in March 2019. Every Sunday I’d take her to the nursing home church service, for sure, because she loved to sing the hymns. And usually I’d stop at the nursing home on the way back from a harp lesson.
I had a feeling things were dicey though, it must have been about the second Wednesday in March 2020, driving home from a harp lesson, and going into the facility. The very nice receptionist said she “strongly” recommended I not go in and not see my mom because of this new virus, so I did not. So I simply dropped off some things for my mom at the front desk and went home.
“This will go on for months,” I kept telling the staff. Some nodded knowingly, some didn’t believe me. And I haven’t seen her in person since.
Two things my mom said to me before everything closed down stick in my memory. This is a woman who can barely talk, and I have no idea what she is thinking, though she makes very exuberant facial expressions. She acts very happy most of the time, always smiling and laughing, so it is something of a mystery, what is going on in that head of hers. The last time I saw her, I was telling her “I live right near by (this always provokes a look of astonishment from her) so I could come by every day if you like.”
And to this she replied, teasingly, “Well, I’m not sure I want you to come by every day.” It’s not like her to speak so intelligibly. Everyone present roared with laughter, as it was clear that she was ribbing me. But those words helped reassure me when I could not see her in person ever since then.
And the very last thing she said to me, in person, before I left her room in early March 2020 was, “are you happy?” Looking up at me from her wheelchair. The question floored me. This is from someone who can’t go to the bathroom without someone lifting her body using a human floor lift machine. Who can not hold a spoon to eat and has to be spoon fed. Me? She’s asking about ME?
Tears came to my eyes and I said, Oh, mom, as long as you are happy, I’m the happiest person in the world.” “Oh, marvelous!” she says, clearly impressed with what I said. It’s not like her to speak so clearly so that really struck me.
And then, the shut down. Tim and I think we have a very comfortable pandemic home experience going on here, so we feel a little guilty watching the rest of the word suffer so. We don’t go into buildings at all unless absolutely necessary. No travel has saved us a lot of money. So that’s been really good for my book writing.
I am almost almost done with the Emissary novel. I have added many more subplots, like a factory farm making people sick, and I have made the women all a lot more interesting than they were in the movie. (That was not hard. Sorry, Tim!) I am on the epilogue chapters. If anyone wants to read my final draft, let me know.
I have joined a writer’s critique zoom group, which is helpful, giving me feedback, and participated in some virtual writer’s events. Twice a week I see my mom, squeezing myself between her window in about 6 inches, in between a prickly yew bush, for half an hour, freezing these days, so I have to bundle up. I play a tiny electric piano I found in my stepfather’s house to get her to sing with me. I also have virtual visits the staff sets up for me, but she gets bored by this, thinking it is TV, and tends to fall asleep on me.
I still do harp, virtual lessons every week, and I compiled a really terrible 30-minute video of myself playing and singing simple songs on the harp for the memory care unit to play for residents to sing along to.
I still do a little blog writing, not much. All my science feels like it is going to waste, and I miss it terribly, so I just channel into nerdy highlights in my book. One of the women is getting her PhD in electrochemistry and designing a bionic leaf to harvest CO2 and generate fuel. Of course Koyper the spaceman gives her a tip on that.
I’m happiest when I am writing in my book. It’s surprising how little time I have for that, doing house things, virtual things, virtual meetings, etc.
Today tears of joy came to my eyes as I received from my mom’s nursing home a consent form for her to get the Covid vaccine. I filled it out as fast as I could. The staff and residents should get the first dose after Christmas. Hang on, hang on.
Her nursing home is a chain, and thus I did a double-take seeing their name (Good Samaritan) in the news for a Canadian facility that had 34 residents die of Covid in a month. The staff I used to be so close to are all dressed in so much plastic, I can only see their eyes, looking through windows. Every day, for months now. I feel for them. Every week I get reports of how many staff are infected. Sometimes just one, sometimes five, and then you wonder who it is, because they can’t tell you. Only one resident so far, here. Residents are less likely to get it because they are not allowed out. Mom used to jokingly call herself an “inmate” when she had cognition and went into assisted living. Now she really is one.
I am sick of worrying. I automatically open the obituary pages every week as soon as I get the paper, just to see if I know anyone who died.
Today I learned my brother Joe, an MD in Spokane, is getting the vaccine. Also a tremendous relief. And my sister Robin who had a hard year rebuilding her home which was burned due to arson in 2018, trying to find places to live in the meantime, losing her job of 35 years at a bank due to the pandemic, and trying to make a living doing whatever she can, what a relief she has another “dream” banking job starting in Jan. So there is some good news for both my siblings.
My dad and stepmother Mary are thankfully healthy and with my stepmother’s family in the Pittsburgh area, preparing to sell their second home in Sarasota. We are deeply relieved that my stepmother seems to be beating Covid and recovering. Of course! She is tough.
Tim's son Jeremy seems very happy with a new job programming in Sweden. The work at the Natural History Museum in Stockholm didn’t seem like a good fit for him. Plus he teaches yoga and can do very impressive asanas. It is a tremendous relief for us to see him enjoying his work.
Tim is busy saving the world with Maffle, and I can only stand around and watch helplessly, since I don’t know much about programming. He can tell you more about that, but I am incredibly proud of him and I long for him to get the support and recognition he deserves! One of his biggest worries is that his technology would fall into the wrong hands. He is passionate about making the internet a safer kinder place.
His form of taking breaks has been in improving our home dramatically. What a handy man! I am so lucky. He can tell you about that, too.
One of the highlights of my year was this summer. I was allowed a few highly-supervised outdoor “meetings” with my mom, forced apart by 10 feet by two card tables stacked together in a gazebo. I was required to wear a mask, of course. I found one on Etsy that has a clear area for the mouth so she could see my mouth. When they wheeled her outside and we shared the same space, outside, we cried and cried. The staff cried too. I brought my little harp and played and we sang. I had about four of these distanced outdoor meetings before they were forced to stop them due to rising infection rates.
I had decided it had been about a year and a half since I had mentioned my stepfather to my mom. Holding the secret of his death troubled me. If she were to die, would I regret never telling her what happened to her man? But how do I keep her from grieving?
I didn’t want to have any regrets, going forward, about holding this from her. I had the sense she was living in the moment, and after a year and a half not seeing him, she could take hearing about it. I had up to that point hidden all images of him.
So with a lot of praying, and fear, I decided I might show her a picture of the two of them together. I pulled a picture of the two of them out of my harp bag and held it up so she could see it. “This is someone who once loved you very much,” I said. “He’s an angel now,” I added. She stared and stared at it. And then my harp started playing in the wind, very very loudly! It does that, but not very often. That got the goosebumps going on me for sure!
She seemed delighted to see this man. “Do you know who this is?” I ask. “Of course I do,” she said. Now she really enjoys seeing pictures of him. I feel a sense of relief. It seems she has managed to skip much of the grief that people would ordinarily feel. How very strange, that dementia can spare someone such profound grief, I think. She is one of the happiest people I know. She is always smiling and laughing and singing. Every time I see her, I tell her that her job is to make people around her happy, and that is especially important right now. Everyone needs meaningful work.
Every day I journal and I love that, it feels like honoring each day by recording what happened. I spend a great deal of time archiving old family things I inherited following my stepfather’s death. Pictures, family journals, audiocassette tapes, slowly processing it all. I found a 1955 film reel my dad had taken and had a company digitize that for me. What a wonderful thing it was to see my dad doing pull ups on a tree, my mom riding a horse, my grandparents, looking younger than me! I found an old message of my stepfather singing to my mom, and put that on a flashdrive so staff can play it for her now. I feel very lucky to have all these family things to process, lucky to have time to do it.
I am a bit neurotic about exercising every day, I believe that it keeps the bad moods away, plus setting aside some time as often as I can to do some sort of quiet contemplation: I set a timer for ten minutes at try to focus on gratitude or just asking my heart for direction on how I can help out more. I am surprisingly busy. I don’t know how I will manage doing everything I am doing when the restrictions lift. Ha ha.
Holly
Comments