Mirror Shopping with Angela for the Covid Bathroom with Covid Hair
This will be my final 'Blog - Madison's Journal' post. For the friends and family who stood beside us along our chordoma journey, thank you from our cores. For the several thousands of people who somehow found this site who don't even know us, thank you too. Everyone who loves Madison, keep her love alive in your heart with happy memories, and know that she loves you too. We were blessed having her on planet earth when we did from 1995 until 2018.
The title of this post may require some explanation. We still refer to 'Madison's bedroom' as exactly that. We tried rebranding Madison's car to 'The Camry', more here... I just didn't like rebranding Madison's stuff and disliked driving a low and slow four cylinder car... her car.
I'm going to keep this very brief... well, I'll try but first, a story! My best friend growing up was Gary, who helped me all day yesterday. Gary tragically and suddenly lost his wife Becky about seven years ago. It was great reconnecting and spending with him! Prior to yesterday, "Madi's bath" was an empty room that had fresh wiring, tile flooring, fresh paint on fresh drywall, new recessed lighting... but completely empty. I wanted to finish Madi's bath prior to Christmas, but there was a lot to do. Rewinding:
In late October we made a trip to NJ, them NYC the DC... 15 days total. The purpose of the trip was to celebrate Carolyn's 90th birthday. She was the den mother/mentor that Angela lacked in her life from the 1980s to current. It was a great trip and we returned home mid-November. A week later we received a call that Carolyn was in the hospital... trouble breathing. The following Monday it was determined that Carolyn's O2 levels we so low, she couldn't return home and needed commercial oxygen... tanks or a concentrator would not suffice. The following Monday Carolyn decided she'd lived 90 years; a good long run but it was time to 'go'. Angela flew back out Tuesday and was holding Carolyn's hand that night beside Erica... Carolyn's daughter (and the sister Angela never had). Wednesday Carolyn's two sons and their families rotated through, and that day was all about Carolyn. She was alert, talkative, and it was a tearful but joyous day... if that makes sense. That evening Carolyn lost consciousness and passed away in the wee hours of Friday morning with Erica never leaving her side. With a memorial service/celebration in a week, there was a ton to do. Given Erica is the only local 'kid', there was an enormous amount of pressure from creating program, reserving a place, and getting food there. I could hear the anxiety in Angela's voice... there was a lot going on. Adding insult to injury, there was a gas leak at Carolyn's house the Thursday before the service... the place everyone would congregate before and after the Saturday service. The Gas Company did what they do... turned the gas off to the whole house which meant a freezing cold home, no hot water for showers, dishes, etc. Erika had to bribe someone to go to the house asap, find a gas leak with the gas turned off, and repair it. Now assuming it's fixed, she had to chase the Gas Company down to turn on the gas... which happened about 1am Friday morning. Angela was gone for two weeks, and about halfway through that I knew I had to surprise Angela with the bathroom complete.
With Gary's help, we did! Over lunch yesterday Gary and I reminisced about his (then) wife Becky, who I remember fondly from high school. I learned through Gary's lens that as a mother and wife, she used to kick his ass in tennis; was actually the first-place woman in a league they were in... "the one to beat". I'd heard stories about Becky as a wife, as a dedicated mother, an extremely smart business woman, and I really enjoyed hearing them and hearing Becky's name. Gary is so funny! We were up and down in "Madi's Bath" all day, and he casually mentioned "the older I get, the harder I grunt when I have to stand up from the floor". Huh! I do it too, never noticed. Changing gears...
I was at a bowling alley with some friends last Monday. A very close friend and I stayed late and had a glass of wine in the bar: she asked me how I'm doing, how am I coping, etc., and I told her. Last Friday Colleen picked up Bailey and we chatted about the conversation in the bowling alley bar with my friend. Yes, I feel robbed, and also blessed... we had three months to do bucket-list stuff, share stories, create final memories, and say our goodbyes. I don't feel I 'lost' Madison, but embrace 'having' her... as Gary embraces having had Becky. I talked about Madison... he asked questions, and he spoke of Becky. As I've written before, Madison's moms and I had her the four years she was supposed to be away at college, and we learned the depth of love we're actually capable of. So, if I tell you the story about Madison shooting an AR15 with her uncle Jeff again, please smile and listen if you've heard it before. If you repeat a story about something Madison did, I'll do the same... I love saying and hearing her name the same way I think Gary does with Becky. While he doesn't physically have her around, he'll always have her as we have Madison... in our hearts. I sent Gary that pic this morning, and I'm going to ask for some of Becky.
I'm surprised people still check this page. Looking ahead, if you check and it's static for six months and nothing has changed, it's on you!
For anyone who hasn't yet contributed to the organization with a quest to cure chordoma and they will, and if you've enjoyed reading my slow-growing book on this site, please consider donating to the Chordoma Foundation (CF). How much would this journey be worth in an Amazon e-book or even a hardcover book... 10-20 bucks, please do it... anything! You won't be judged, you'll be thanked! If you have donated to the CF, thank you! If not, consider donating in Madison's name... keep her name alive. A little bit of something is a lot better than a whole lot of nothing. People who have followed along here will know what I mean when I heard a globally recognized chordoma researcher casually mention to another... "it's a good time to be a mouse". Another scientist (Patty at the CF) wrote to me that with Madison's cell line (the only one like it on the planet in 2018), Madison will rock the research world. I am going to finish the book, and 100% of the profit will go to the Chordoma Foundation... <- open that link... recognize anyone?!
Extreme Mobility: (<- Link) Their leadership, spiritual guidance, outstanding counselors/trainers, and blind athletes help propel Madison into the woman she became. I just donated to them at this link... same guidance applies; it doesn't need to be a lot and will keep Madison's legacy alive there too. If you already have, thank you! For any of her friends who want to be inspired and experience what Madison did during the five camps that she trained and led the blind kids, you can apply to be a volunteer. (psssst, Mallory... if volunteer at a camp you be "Madi's Cousin" as I was "Madi's dad".
...dear Madison: I think Gary likes and admires you through me, as I like and admire Becky... now more than ever. To surprise Angela, Gary helped me finish your bathroom yesterday. Every time Ringo wandered in Gary would say "Inspector Ringo is back"! When Gary or I got up from the floor, we'd both grunt, and I smiled... I do do that!
I love this picture of you; thank you for this and so many wonderful memories. I was blessed to have Angela through covid, my forever wife, and please do continue monkeying with things in our lives.
But here's the thing Sugar: we love you and miss you, but understand that all of the demolition and rebuilding of your bathroom was all during this thing called covid, a worldwide pandemic! People globally were told to "stay home". Some went nuts, hoarded toilet paper of all things? It turns out Home Depot was an 'essential business' and we needed a project! Long story short, your bath was demoed and rebuild during the covid lock-downs, so it's no longer "Madi's bathroom", it's the "Covid bathroom" and finally finished!
... you're welcome
Dear Angela. I know Gary or any contractor could have knocked this out in a few weeks and I took well over a year. But! I needed to learn all about building and electrical codes, drywalling, plumbing, and figure out why there were six sets of wires to/from one of five overhead lights that power the oven in the kitchen, the Cat Bath, Madi's room, the den, laundry room, your bedroom, then chase my tail rewiring learning via YouTube videos. Thank you for your patience and love... I love you. With help from Gary yesterday... Surprise! Merry Christmas, I'm sorry it took so long, and I'll leave the toilet seat down for you too.
Last week Angela was speaking on the phone to our friend Carolyn: I overheard her describing some of the recent ceramic pieces she put together, then heard Angela casually respond with "Madison's room" and I suspected I knew what the question was that she was asked. After the call ended I'd asked Angela about it. We tried branding Madison's car "the Camry" and "the Toyota", but it was hard to gag those words out because it was Madison's car... always would be. It turns out her room will always be "Madison's room": We tried the "crafts room" or "workshop", but it just didn't feel right. When I overheard Angela casually mentioned "Madison's room" that's flowed naturally, it's the most simple, and besides... her ashes are hanging in an XMO bag. Every morning we open the drapes and every night we close them.
The "Cat Bathroom"
This morning was a typical morning. Our laundry room has a sliding/pocket door and within it we have the "Cat bathroom"... the litterbox is under the sink. That bathroom we did a few years ago. I tore out the old vanity, did the drywall, and built a very sturdy platform with a hole in it for the sink, then Angela did the sink-top and wall with ceramic tiles. I'm usually up first so I let Ringo and Sasha out, cleaned the cat-box and let Sasha go outside. Ringo's 18 and his kidneys are failing, so he's always hungry. Sasha darted to outside as usual. A little while later Angela and I were having coffee out back, and Sasha was meowing very loudly. She is the by far the most gentle feline creature we've ever had. She was never a hunter, a brat, and always purring and very talkative. Angela sensed that Sasha's meow-howl was different, walked over and picked her up. She was acting like she was trying to cough-up a hairball but we senced having trouble breathing. We've seen it before... she usually barfs a glob of grass, out but one never came. Then she lied on her side. Ruh Roe. I grabbed the cat-carrier and Sasha went into it on her own. Within a minute, she and I were driving to the vet while Angela called them to let them know I was coming... code-3. Sasha always responds to our meowing at her with a double meow meow back at us. During the five minute drive to the vets, I meowed and spoke to her the whole way. I even told her that Madison's looking forward to seeing her... but not yet... hang in there Sasha. When we got to the Vet's, I rushed up and unzipped the top of her cat carrier... Sasha was laying on her side was motionless. I put my palm over her belly and sensed she wasn't breathing in fact, my gut told me we lost her. The vet tech said very softly that it looks like she's passed, then rushed her back to have a vet doublecheck. With a very sad face, she came back with an empty cat carrier and again expressed her sorrow. Rest in peace sweet sweet girl.
Another very unfortunate and extremely sad reminder that tomorrow is not a promise. Live, love, laugh.
To try and end on a less dismal note...
... I've mentioned Madison's car, her bedroom and rather than trying to rebrand her bathroom as the "guest bathroom", let's call it what it is... Madi's bath. It's coming along... far right picture was taken yesterday. Angela and I just need to lay down the tile, put border along the walls and around the doors, and install the suspended sink and storage cabinet that are in the "living room" :-)
"The before": Her bathroom was actually decent if you're in to 1964 motif with a slight hint of rust.
So to Madison, we miss you Shug. Angela and I speak of you most everyday... we always will. I think some friends and family (my mom still seems to clam-up when I say your name... not her fault, we know people grieve differently). I think some people are worried about using your name in front of your mom's or me because it might hurt us, but your name and remember-when stories are music to our ears.
Angela and I are so saddened and sorry about Sasha and again... tomorrow is not a promise... but you already know that.
We love you.
Since it's still and will always be "Madison's bath" even when refreshed, I promise to always sit like a chick when I pee in there and will always leave the toilet seat down. Once again...
... you're welcome.
It's Almost Time To Go
I did ponder sending Colleen (Madison's mom) an email from Madi, but decided not to. That thought bubble reminded me of assistance constantly requested by the PTA for Madison's elementary and Jr High aka Middle School. For a few years straight and every semester we'd get cards to sign up for classroom help, math tutor, classroom treats, everything they requested had check boxes. Simple enough, check most of them and here's a work and home email, work, home, and cell numbers. Every semester they'd phone and email Colleen because I signed her up for almost everything. About 8th grade Colleen asked me if the PTA was calling and emailing me asking for help and I replied "yep, the first few weeks of every semester". Madison was with us and after her mom left, I told Madison what I do. She said Oh dad, she'll be so angry. Naw, that's why we're not going to tell her... yet. When Madison was in High School, I volunteered in the snack booth both flipping burgers out back, or tending a window taking orders and handling cash. I dug through my old photos and actually found the one I was looking for! Her school was looking for someone who had a boat who could talk about boat safety... Madison was so proud!
Years later, we told Colleen that I had been signing her up for all of the PTA activities. She laughed hysterically :-)
A memory popped up recently that I thought I'd share, something I don't remember writing about here. In late December 2017 Madison had a recurring dream that lasted a few nights in a row. It's a rather simple dream but she and I both understood who the Father was.
Madison was at a birthday party where there was soft music playing and people were talking and having a good time. From another room (she couldn't see who or a face), her Father... a voice she recognized but who wasn't me told her "Madison, it's almost time to go". Madison had that dream a number of nights in a row and then they stopped. We talked about it after it happened. Was her Father speaking to her in her dreams, was it an active imagination of an extremely bright young woman who bravely approached end of life?
Reflections Part III
Out of the blue I got a text from Harish, someone I worked with at Amgen. He sent me a picture of a thank you card Madison wrote to him and three other colleagues of ours who decided Madison needed an iPad. Given all of the time I worked from hospitals during inpatient chemo and surgeries, Diana asked me if Madison had an iPad. Madi didn’t, claimed she didn’t need one and Diana, Harish, Sunil, and Josh decided she should have one. They knew that I had a tablet with a few dozen movies and Netflix access during hospital stays but Madison refused to use it I’d bet… because the thought I might. Stubborn as we both are, I’m not going to pick it up so she didn’t think I might want to watch a movie… and Madison wouldn’t because I might, and didn’t want me to –not- have access.
The four of them decided to buy Madison an iPad. I configured Netflix on it and brought it to the hospital the next day. Madison couldn’t speak (throat surgeries), but we had several long conversations via two small dry-erase boards… one for each of us. When I gave her the iPad from Diana, Harish, Sunil, and Josh the tears flowed, which of course got me going. Madison embraced the iPad and watched a lot of movies. Of course as stubborn as I am, I never picked up my tablet (told ya Madi!). Having the distraction of being able to watch movies on HER device was huge. She watched a lot of movies and YouTube, and a few days later, wrote the following on her dry-erase board.
Rewinding back to the text that Harish sent me a few weeks ago, he sent the following picture noting that it inspires him every day (sits on his desk).
Harish, Diana, and Sundar (also from Amgen) and I met for lunch last Friday. Harish causally mentioned “tomorrow is not a guarantee”. In the thank-you card that Madison wrote to them once she returned home from the hospital she closed it with a quote from Joyce Meyer: “Courage is fear that has said its prayers and decided to go forward anyway”, closing with Madison writing ‘so we walk forward in faith and courage… Cancer will not steal my joy today’.
Switching gears, Angela had a sinus infection a couple of weeks back. We have a few leftover prescriptions from Madison, two of which are antibiotics. Hmmm, is it a bacterial infection Ms. Jones, or viral. On her own, she rummaged and pulled one out she hoping would fit her needs. We talked about it, making an appointment with a doctor, nut Angela took a pill. So how/why what happened is a mystery. I’m sitting next to Angela, the bottle of antibiotics is between us, and I press my thumbprint on my phone to wake it up. I haven’t logged on to Madison’s email since 2018 to tidy things up, and I got my current phone last year… 2020, so it never have madisonrjones@gmail configured. So with a thumbprint, my phone presents me with this.
I looked at Angela and told her that Madison wants her to go to the doctor, not dick around with a self-diagnosis and showed her my phone. Angela made an appointment that afternoon. So how things like that happen, why they happen, and what to make of them when they do happen seems simple enough… sheer coincidence. Oh yea, I don’t believe in coincidence. I’ve replaced the PC I used in 2018, and never logged on with Madison’s credentials on this PC.
It’s now my belief that people who lost someone very close to them sees things that are presented to us. Are we looking, searching… or do they drop in our lap because…? My brother Jeff is a Paramedic/Firefighter in Prescott AZ (SO proud!). He texted me a picture of someone who dialed 911 for assistance recently (left)... who looks looks just like our dad, who we lost March last year. Remarkable.
I attended the Chordoma Community Conference in Chicago in 2019. I always go in a few days early to explore the area the conference is at. I was in a museum and saw a picture of someone who had dark curly hair waiting for a phone to ring... and taken aback. That reminded me of the tail end of Madison’s most serious relationship. If the phone doesn’t ring, it’s Rodger. Long story short, she learned that girls can call boys too and hold their feet to the fire. Tomorrow is not a promise...
... and to Harish’s point, tomorrow isn’t guaranteed. In April we lost a very close friend: Tony had a massive stroke and went downhill and finally passed away shortly thereafter. He was only 65. In late July, we lost another very close friend to a massive heart attack. Jerry was only 61, and the attack took him almost instantly while he was helping a family friend with gardening chores. This one was a tough one... gone in an instant. After we got the phone call and hung up, I was obviously saddened but also in disbelief. We had just seen Jerry very recently. Angela made a great point… that we’re starting to lose friends our age. Tomorrow isn’t guaranteed.
Something my dad told me many years ago, and Angela and I tend to preach it and eat our own down food. My dad said 'always have something fun planned, something to look forward to'. When I was working, it was the occasional RV trip camping at Carpinteria, a one week vacation somewhere else, but most often, it was just looking forward to the weekend. Here and now, we were supposed to be in Aspen but two things prompted us to delay our trip. I've also been watching last minute cruise deals, and Angela has authorized me to add-to-cart! Amazing... the prices are dropping since Princess can't fill their ships yet. If their sailing anyway, they're better off with some money hoping we'll be splitting a pair of Kings playing blackjack in the casino, versus sailing with empty cabins.
So I'll end with this for now. How is it that Angela is rummaging around for antibiotics and the next time I pick up my phone, I'm presented with a screen that has madisonrjones email at the top? Her email address has no connections to any of mine, yet there it was. If you're like me, you haven't deleted Madison's name/contact from your phone or nickname file. If you're like me, it probably has a picture of her associated with it. I did ponder signing on as Madison and sending an email from her to a few different people. An email landing in your inbox from 'Madison Jones' would be impossible to ignore. I ultimately decided it would be in bad taste or perhaps even hard on them.
I had my annual physical yesterday and a simple reminder of Madison surfaced. Blood draw: the guy who tried twice, got it right the 3rd time actually chasing a vein around with a needle... twice. I donate blood every two months and in my 62 years, I've never needed a retry... apparently I have good veins.
Madison had thinner veins, and maybe 30% of the time they'd chase a vein around when giving her an IV or drawing blood. It was easy for me -not- to be impatient with the newbie poking a needle around in me because among other things, Madison taught me patience... I remember far too many times a nurse poking Madison: her levels or patience, grace, and understanding were amazing.
So now I'm in a gown wearing my boxers and socks... the doctor comes in, does the usual stuff, asks the general questions... all-good. As he's putting on a rubber glove and greasing his finger, I know what's coming... a prostate check. I told the doctor if he plans on going south (my butt) with that hand, we're going to need a safe word. He says "pardon me", and I say 'never mind'.
He asks me to lay on my right side and pull my left butt cheek up, then in goes his finger. Of course I blurt out "NAUGAHIDE".
Part 2 of ?
It had been a long time since I've posted anything. My style has been adding to a draft with thoughts as they pop up, and then saving for when it's time to press the publish button. I have a very full draft that's mostly not applicable now, so that'll likely die on the vine. Most of it was a during the last 12 months and a lot has changed. Part of me wanted to roll the dice, get on a bus and lick the poles and handles on the seat-backs in front of me. Then, Uber home and do the same in his/her car. Strongly assuming I survive the virus, in theory... I'd likely have immunity to it. The only hitch in that giddy-yup would have been Angela: we've discussed a plan if either of us is diagnosed with covid-19 but she wasn't willing to live in our small motor-home... either way. Last April we both had projects we wanted to do at least one of them daily. It was time to re-seal the grout in the shower of our master bathroom. Angela scrubbed it like crazy, then sealed the grout. Allowing the sealer to soak in for a couple of days, I used Madison's shower. We had her shampoo, conditioner, and soap in handy containers which we left thinking they'd be handy for overnight guests. Something I still treasure is realizing on occasion that Madison was the last person who touched a particular item. There was a bar of soap on the rack in her shower. I used it, and was amazed! It's only now obvious that she preferred that bar over the bottle soap, and that she held it firmly with one hand in the same position, and rubbed finger grooves in it that were the width of hers. How cool! A year ago it would likely had brought a happy-ish tear or two but last week was a simple look Up, saying 'I love you' adding in thought (without saying aloud) that I'll wash my face and pits with your soap, but use the container soap for everything else south of my belly button and then of course another silent 'you're welcome'.
This February I virtually met two of my future new BFFs, Erik and Cindy. Erik had recently been diagnosed with chordoma in his sacrum (lower spine) and his then current doctors Nincompoop and Dipshit had scheduled him for a ludicrously over-intrusive surgery. In the Chordoma group I co-moderate I know of only two other patients who had the same approach... the same one proposed to Erik at the same hospital. The group has 2,500 members in >80 countries and I only personally know of two. Interestingly in the USA the members are 70% women, 30% men. Outside of the USA, it's reversed... 70% men and 30% women. Chordoma impacts more men than women, so it's easy to conclude in the USA that we Martians don't like asking for support or guidance. Any-who, Erik jumped in to the middle of the fray and reached out to numerous sacral patients, including the two patients of Dr's Nincompoop and Dipshit. They were both hospitalized for 8 and 10 weeks, then inpatient rehab for months. I've learned that if you show me a surgeon without a huge ego projecting absolute confidence, I'll show you a loser. That said, surgeons who don't know what they don't know still press full-steam-ahead. I'm proud of Erik. He researched the chordoma in all of the right places, arming himself with knowledge to a level approaching expertise. He connected with enough patients in the group and amassed the collective wisdom of peoples experiences to ask his future ex-surgeons some superb questions about the 'why' such overly complex surgeries, adding that with UK group, the International group, the Ozzie and Brazil group, there only seems to be one facility on the planet that uses their proposed gut, de-bone, and re-gut approach. The future ex-medical team then softened and said they may not have to be so intrusive after all but Erik learned enough that he would go elsewhere to a team that treats chordoma routinely. He had his enbloc surgery (tumor taken out in one piece with margins) on March 9. Had he been a typical get-this-thing-out-of-me Martian in a hurry, he's still likely be in the hospital potentially facing 1-2 more months of inpatient rehab. I saw a picture of him on Facebook recently.
He'd driven to restaurant with Cindy and decided that deceived he was due for a shooter. Wait, what?! No lime! The subject line of his FB post was simply "I'm back". That picture is eye candy when considering where he could have been had he subscribed and accepted Plan-A, and how far he's come in the past two months... to the day.
Part of me too is thinking WIMP! He waived her off without killing the bottle :-)
Erik sent me a text a couple of days ago asking me if I'd seen the latest about Crystal, another chordoma peep. Her story is wonderfully written at this link... about a 60 minute read without taking any detours (other related links) and IMO, well worth it... all of it. At the bottom of each page, there's a Part 2, then from that a Part 3, etc. Crystal had descended to the lowest depths imaginable... and almost kept digging. To cut to the chase, she is at a very happy place now. Towards the middle of her blog, Crystal posted a link to a motivational speaker with a focus on meditation. I've watched the video (link here) several times... it's truly outstanding! I have a lot of take-aways, but just one of my favorites is at the 5:00 minute mark: "the best way to predict the future is to create it..."
Pictures from her blog... it's extremely well done and I hope she makes time to write her book... she's awesome!
Reflections - Part 1 of ?
In the late 90s I was sitting in an intersection waiting to make a left turn and was broadsided by a woman in her 90s who blew the red light. She admitted pressing the wrong peddle to stop, and T-boned my drivers door and front fender with her foot buried on the accelerator. We were all lucky. There's a point in time when it's simply time to take car keys away from our elderly and I gotta tell ya, it's rough on the adult kids... really rough. I can't even imagine losing that privilege, but ideally there will be self-driving Ubers when it's time to concede the roads are safer without me... despite the almost perfect behavior of other drivers when I'm motoring around given my ride.
About that same time (late 90s) a very young couple with an infant knocked on my moms door asking if it'd be okay to sleep in her barn that night. They barely spoke English, it was dark, drizzling and my mom decided the barn may not be suitable but then again... these are complete strangers... so my mom allowed them to sleep in her bomb shelter. Over the next two decades Lugo and Gloria became family paying my mom a minimal rent for her increased utility costs. They cleaned her home, took care of the yard, got green cards, good jobs, paid taxes, and in 2017 had saved enough to retire and moved back to Mexico. Rudy, that infant, earned his PhD in psychology, and is a bi-lingual therapist and I believe... also became a professor. As they were preparing to move, Lugo pulled me aside and mentioned there are potential crooks down the street from my mom. He'd gone nose-to-nose with them and they pretty much stayed away (there's a but coming) because there were always cars coming and going from my moms. Lugo, Gloria, and Rudy each had cars.
But! My mom started having fender-bender parking lot accidents in 2017. She told her insurance agent her version, adding "Don't tell Chris" but since Windi and I are close friend and is our agent too, I knew. Losing the privilege of driving is robbing someone of their independence, but when my mom told me she sees shadows of trees in the road and slows way down because it might be a person I thought damn. Damn. The time had come, so I "borrowed" her car to be sold and never seen by her again. I was the villain in this chapter of her life and being the only local ‘kid’, I’d be lying if I didn’t pay the piper. She’d decide her dog need her nails trimmed: she’d call my office phone, then my cell, then our home phone leaving me a where-are-you message wanting me to pick her up and her dog up and run them to the groomer. “Mom, no… I can’t take off work, have meetings all afternoon but will find a mobile dog groomer and Bella can get a warm bath too”. “Fine, we can go Saturday”.
Solo-agers obviously need groceries, have a ton of eye, dentist, and doctor appointments: we floated those boats as best we could but it was a lot to juggle. At the time Angela and I were in a bowling league and there were four others who were the only local ‘kids’ of solo-aging moms who can’t drive. Solo-aging moms can be ruthless to their local 'kids', passive aggressive suggestions, and we all experienced the “it’s only a 15 minute doctor appointment and you can just take a long lunch!”
In 2017 Lugo and Gloria moved to Mexico, son Rudy was living his American dream, Angela and I were floating my mom’s boat along with dial-a-ride, bad actors lived in her neighborhood, and then my mom just stopped needing rides to anywhere. Being almost afraid to ask if she needs groceries because she loved being out and about, I had to ask how she was doing, getting groceries, and did you stop going to the doctors?! No she replied, "her new neighbors" are taking her shopping… driving her to the doctors too. Ruh Roe. Mom, who are these neighbors?! She only knew their first names. "So mom, so let me understand… they drive you to doctors and take you to the store?" Oh yes, and clean her fridge and help around the yard!
Whelp, I decided that I need to meet them and would take pictures of their ID. “Oh says mom, no need… they’re with the Village”. Wait, what... what Village? “THE Village”. Huh? Were these bad actors looking to get in to my mom’s good graces, earn her trust, then start stealing from her, pull checks out her checkbook, or worse: besides yardwork, driving her to the store, ALL doctor, eye, and dentist appointments... they were driving her to the bank too. Oddly but typical, my mom wanted to keep them separated from me. I Googled 'the village' 12 ways from Sunday and finally figured it out.... the Conejo Valley Village. The Village-to-Village concept was born in Boston, just neighbors helping neighbors. As the concept was embraced, it was shaped in to a non-profit franchise of sorts, more Villages popped up. With best practices, Village guidelines, a compute platform identified, Villages started sprouting across the US... and my mom found one in her backyard! The volunteers are all vetted, criminal background and driving records checked, a pool volunteers who changed my life and without exaggeration, improved AND extended my mom's life. Solo-agers are like covid peeps who can't drive. Ask yourself this for the people who mostly hunkered down in 2020: did you wash your hair as often as you did in 2019... wear that pair of pants or shirt a tad longer than 'normal' times? That's what it's like being a solo-ager... seniors living alone who can't drive with their mission in life to elevate and escalate their expectations of us adult 'kids'.
Finding her Village and her new peeps, my mom gained strength, was less wobbly, and had a new social life. There are numerous volunteers older than my mom picking her up, throwing her walker in their trunk, then off to a Village coordinated happy hour, book club, lunch, mall walk, movie night, pot luck, etc. I think there was unspoken peer pressure: my mom is a very bright and perceptive lady. Watching people her age move so much better, mom became much more active, and looked so much better... because of them. What the Village offered me was guilt-free independence. This all unfolded in 2017 and needless to say mom's and I had other priorities like getting Madison to San Francisco 1-2 times a month. I wrote the Village Chief a thank you letter which ended up in their Newsletter, then met Val for lunch. I offered to do whatever was within my capacity to help because they truly offered independence for dependents like me, made my mom healthier, extended her life, and offered her a social life with other solo-agers and volunteers who were clean, kept, mobile... all because of the unspoken peer pressure: in these covid days not being around many others... who looks in the mirror, and how much less often?
Part 2 of ? will be written within the next week. The trigger spawning this brain-dump was a cousin of Angela's calling last month just to catch up. He'd recently retired, just checking in, and we'd not seen him since Angela's mom funeral in 2016. Madison was there, 21, wicked curly dark hair, engaging and talkative, and appeared perfect! On the phone last week, Angela's cousin asked her what we're up to, what Madison was up to...
He didn't know that Madison had bone cancer... she looked perfect in 2016. Reflecting back, 2016 was mostly perfect. To cut to the end of this X of Y chapter, I ended up sitting in a lawn chair at the Borderline in Thousand Oaks having lunch last month. 12 people died there: people's friends and family members were robbed because of that shooting in an instant. When one person dies, it easily impacts a dozen. When a dozen people die, it literally impacts hundreds to their cores. It was the full gamut of reflections and emotions feeling that Madison was robbed of her mortal presence. That said, in September 2017 Madison prepared us as best she could... with her imminent and premature departure from planet earth.
Madison, her mom's and I all learned how to live large in 2017, but also unfortunately how to die. In 2015 we had the opportunity to hear an ex-pastor named David speak: he worked the oncology ward at UCLA for over a decade. David mentioned speaking with the thousands of cancer patients over the years who understood they've exhausted all treatment options: overwhelmingly they wanted three things... to go quickly, pain-free, and in their sleep. David asked the audience of cancer patients at our Cancer Support Center the same thing, with the same responses. He asked who was afraid to die, and hands went up. For the most part, people mostly felt guilty leaving their friends and family behind, which is in part is an honest concern/fear. David asked this audience of cancer patients by a show of hands, "if you could rewind back to the day before your cancer diagnosis and die in your sleep, quickly, and pain free... would you?" Not a single hand went up, consistent the 99% of the responses he got while at UCLA. He reminded the audience by show of hands, "who has had surgery?" Most. He then ask had multiple surgeries or a metastasis? Many. "How about radiation?" Most hands went up. "Okay, another show of hands... who had chemo?" Most. "Who lost their hair and felt the horrible effects of chemo?" (see where he's taking us??). David led everyone to the conclusion that despite extensive chemo, surgeries, enough radiation to make the silverware rattle when you walk through the kitchen, the extra years cancer patients gain was worth it.
Just like Madison...
He finally asked "if you could live to be 500 years old, would you?" That was an interesting discussion. Humans are seemingly built such that we take risks knowing we won't live forever while forgoing risks that might end in paralysis, and don't want to out-live everyone in our lives.
We all love and miss you too Madison, but your bathroom turned in to a pain in the ass. The walls are not evenly aligned, so we took all of the drywall out. That said, I still do sit when I pee in your toilet... you're welcome.
Dad and moms
UCLA Mind and Body Project
I received a "Dear Madison" email yesterday from the Principle Investigator at UCLA's Mind-Body Research Lab. Given Madison had a cancer that was registered at UCLA, they were looking to her for help to identify approaches to enhance the well-being of other young adults impacted by cancer.
Madison would have embraced that! I replied yesterday outlining that we lost Madison in 2018, and added picture below, and sent Marcie links to the Cancer Support Center and how to group host and her peers helped lead her to acceptance.
Marcie sent a very touching reply and amazingly it all happened three years to the day that her physical body left us all. She still sings her own favorite song through others and I was amazed by the coincidence of this.
Wait, what... coincidence??? Life is a gift; celebrate it every day!
Madison's 2009 Scrapbook
It's hard to imagine that it's been three years ago today since we all lost Madison. It feels like just yesterday... and a lifetime ago.
Many of the people she forged close friendships as a young adult didn't have the opportunity to know her as a kid. I recently stumbled upon a scrapbook she made in 2009. I've obviously seen it numerous times but it's been a while since I read it cover to cover.
Madison was a huge fan of her ‘uncle’ Steve Fossett: (<- link, why he was a hero of Madi's). She couldn’t differentiate my uncle Richard's brother from a monkeys uncle in 2009, and Steve was the only relative in her life at the time who was famous for all of his extreme aviation accomplishments, then suddenly went missing in a small plane. Google (in their Map’s application) maintained fresh imaging of the suspected area where Steve went missing, and Madison and I spent many hours looking in Google Maps grids socialized by the media. If memory serves, his disappearance was on the nightly news and more often than not after dinner, Madison would ask if we "could go look for Uncle Steve”. Given he was the first person to fly solo around the world in a hot air balloon -and- solo in a fixed wing airplane among other things, Madison assigned him a hero badge in her scrapbook, a badge that she would adopt at age 18 with her one-in-a-million cancer... chordoma.
Another one of Madison's scrapbook memories took place when Madison was 6 or 7ish: For whatever reason, I awoke about 5AM. Whelp, I'm not going back to sleep and on the way by Madison's room for coffee... she's not in her room. Her scrapbook memory noted the trauma we all felt back then. I got Angela up, said to check the inside the house and front yard; I'll search the back yard which included the pool. In short, the fan in our bedroom was on and Madison went out the front door... opposite side of the house. Locking herself out yelling "dadddddy, DADDDDDY" only netted a neighbor hearing her. They came over and knocked on our front door, no answer, so they took her inside their home. Madison knew our home number, they called, and we were reunited. Phew! Interesting Madison wrote that she was out front for hours: I know that exact feeling... just south of panic when it's dark and our cub isn't in the house, the backyard, the front yard... it felt like an eternity.
Despite the fact that Madison could swim, our pool had an alarm such that even if a tennis ball was dropped in, a loud siren went off with a remote speaker. The night after Madison was MIA, every exit door and window had magnetic switch alarms.
Even as a young lass, Madison was a very expressive writer, noting "... the copious amounts of pure nature is beautiful". Every year we'd river raft for two days at Kings River, then drop down to Pine Flats lake with our friends, a wide array of boats and water toys, and play for another week.
In theory you should be able to click on each picture of her scrapbook and Madison's world according to her.