Spring is Here – Finally.

I woke up about 1/2 hour ago listening to the birds singing outside. I’m thinking they have commandeered a nest in one of the trees outside but I can’t see them, I can only hear them.

Anyhoo so I’m thinking today is the first day of Spring and it’s a wonderful way to wake up. At 7:00 my alarm goes off and I see that it’s 28 degrees outside. A little chilly for all that singing they were doing. But now it’s quiet and I’m thinking they probably just said “screw this – let’s go for cawfee” and they’re on their way to the diner down the street.. or maybe Panera.. dunno.

Spring is here, let’s all make a ruckus.

Long Ago To Now

A few days ago I was watching Jeopardy with friends. It’s become a fun way to spend the evening as, whenever we yell out the answer to a question correctly, we all yell “YAY!” – loudly. It’s inspiring to be with them because of how intelligent they all are.

Once it was over, we all walked down the hall to our respective apartments. As we walked, we talked about cable streaming services. Our 2 90-something y/o friends mentioned how much has changed since they were younger. “Back then it was only 30 cents to go to a movie and that included the cartoons and the newsreels”, one said. “Popcorn was only a nickel!” said the other.

We all reflected on how much had changed since then and how expensive it was to go see a movie now. We also discussed our amazement at the fact that you could watch movie after movie from the comfort of your own living room.

Once I arrived back home, I picked up my new guitar – a Christmas gift to myself for enduring the covid19 pandemic safely and an inspiration to stay home a little while longer and learn how to play it. On the table in front of me was my iphone with the app I used to tune the guitar and learn to play. I just needed to turn on the (phone’s) microphone so the phone could hear the strings as I played.

And then I thought about the conversation I had just had with my 90+ y/o friends.

My phone, the size of a deck of cards, sat about a foot away from me on top of a 300 y/o antique sea chest made in Boston, could pick up the sound of each string of my guitar to let me know if it was in tune by flashing a green light on the app.

I wonder what my life will be like when I’m 90?

Christmas Boxes of Boxes

S.A.Leys Photo

I’m sitting here looking at the snow thinking… (I know – never a good thing right?) Years ago, around this time (probably a few weeks sooner..) the dreaded day would come when the truck arrived outside of my dad’s clothing store with our delivery of Christmas boxes. The doorbell to the stockroom would ring and parked outside would be an 18 wheeler truck filled with 108 (the most I remember) boxes of boxes.

We’d (my dad, brother and I) would have to find enough room in the stockroom to put them all – so they’d go upstairs and anywhere else we could fit them until they could be unpacked, folded together, ribbons and tissue added and then delivered to each department. It was the most anxiety-provoking of days – worse than black Friday or the day after Christmas when we had the perfect storm of store returns and sales.

Yesterday I was on the phone (for over an hour) with a woman who does grief and eldercare consulting nationally. She told me about the importance of storytelling and playing the stories of the people we love who have died – completely through from beginning to end because they always have good, funny parts in them. She told me that sometimes when we experience grief, we get to the tough part and just stop at (or get stuck with) the sadness instead of going all the way through the story to the end.

The anxiety-provoking truck of boxes filled with boxes is the worst of the Christmas box story.

The funniest was the year we decided to pull a joke on my dad and wrap all of his Christmas gifts in boxes from other stores – we had Talbots boxes, Macy’s boxes, Cherry and Webb boxes, Wilsons of Wickford, Narragansett, and JC Penny. It was funny to watch him as he became more frustrated upon opening each box – “why didn’t you just stay on the island?” he asked. We continued laughing as all of the boxes stacked up on the floor. It was at that point he stopped and looked at us – and then looked at the labels on the clothes. He realized that the majority of the labels (except for the ski clothes) were from his store.

Fast forward to several years later when we were unwrapping gifts one Christmas in Florida. He unwrapped a gift from friends of ours to see it in a Leys box. We all started laughing as the store had been closed for years – “are those things still around?” he asked.

After mom died, I was packing up her apartment at Blenheim and was at the post office sending something to my brother. The man behind the counter saw the name on my card and asked “are you THAT Leys?”. I said, “no, not the red-haired ones, we’re the other side of the family”. “I sure miss that store,” he said “I can’t find a Barracuta jacket anywhere!” – When he said it, I realized I missed all of those fun times; even the boxes of boxes. But I’m glad the stories and great memories are still with me.

“They’re On The Boat”

S.A.Leys Photo / http://www.SALeys.photo

Mom’s vascular dementia came on quickly – within two weeks of my Dad’s death.

It took us all a bit of time to adjust. Initially, it was hard even to figure out which end was up, and we just went day by day trying to figure everything out. After a few months, however, we settled into figuring out a routine that would work for us to get mom to all of her appointments while also keeping track of shopping and meal prep and everything that needed maintenance around the house.

It was a scrappy start, but we slowly got to the point where we could figure everything out. One of the biggest (and probably the most heart-wrenching) challenges was mom realizing that her memory was going, and then trying to navigate that with her. Eventually, we settled on the idea that “this is what happens when you get old” and not calling it something more clinical that no one was ready to hear.

It was the “elephant in the middle of the room” that we just referred to as “it’s what happens when you get old” instead of “vascular dementia.”

One day mom dropped a full glass of Merlot on the white carpet next to her chair. When it happened, she was overwhelmed, and so we had her move to the couch so we could move the chair and clean the area around it quickly. She then forgot about it.

A few days went by, and then one morning, she sat with her coffee and read the paper. As she reached for her coffee, she noticed the faint stain (which my brother and I had unsuccessfully tried to clean multiple times).
“What’s this?” she asked. “Ah, I was klutzy,” I said. “Susan Ann!” – her response. It was a lot better to take responsibility for the spill than it was to see the immensely sad look on her face that accompanied her realization that her memory was fading very fast.

I don’t know that you ever realize how intense caregiving is when you’re “in it” – only when it’s behind you, and you have time to reflect and adjust and yes, grieve and remember. For the most part, I am incredibly grateful for the time we had together. It was nice to step off the treadmill of working like a nut and calling Mom and Dad every few days to check how things were going to spending time with them in person. We enjoyed being together even if a huge chunk of that time involved driving to appointments, buying groceries, or meeting with healthcare providers and the hospice team.

Whenever we fell into the “doughnut hole” with her medications, we talked about the doctors that she didn’t want to see anymore and the medications she didn’t want to take because of how they made her feel.

Thankfully, the doctor who ended up treating her was the one she loved the most. A very compassionate man who agreed to care for her while we remained in their home – helping us and supporting us through each difficult decision as it arrived.

#Manatees in Sarasota Bay, Florida / https://saleys.photo/travel-videos/

We laughed a lot, thoroughly enjoyed going on picnics in our golf cart, and loved watching the dolphins and manatees swimming out in Sarasota Bay (the video above was filmed during one of those picnics). My other favorite part was listening to her critique of the houses in our neighborhood, especially as it related to color choice, texture, and design.

Probably one of the things that made me the most anxious during that time was when mom couldn’t find her glasses. We had an abundance of “cheater readers” around the house, so the challenge was navigating around the cheaters to find her prescription glasses so she could read or sign whatever was in front of her. “Here, they are!” I would say while handing her the glasses I had in my hand. “No, those are magnifiers,” she’d say. It was frustrating, as many of them had the same shape frames.

Mom and Dad (who together battled autoimmune illnesses for 25 of the 60 year they were married) both have been watching over us from heaven for a few years now. A few weeks ago, in searching for my glasses, I ran across moms. I thought “here they are!” – half expecting her to be sitting on the sofa in my place saying, “Oh good, you found them!”. But this wasn’t the case, and as I held them in my hand, I found myself relieved of that same anxiety I felt whenever I would be searching for them.

I decided to put them where I know I would be able to find them easily if needed – they’re on the boat.

Gone Fishing

As Father’s Day is coming up, I’ve been thinking a lot about my Dad lately – the lessons he taught me and the fun days we had together. Some of them stick out because of how hilarious they were.

Fishing – Anna Maria Island Florida / http://www.SALeys.photo

We (our family) spent a lot of time fishing when I was little. I remember those days – usually because of how cold they were – especially out on the boat during the Fall. The thing I remember catching the most of was Mackerel. When we returned to the dock, Dad would clean them and then into the freezer they would go until the winter months. To this day – I hate Mackerel because there were usually a lot of bones, and you had to be careful when you ate them.

Life got a lot better when dad started buying his lobster traps – but that’s another story for later.

What I liked about fishing was just the time spent with each other talking, strategizing which lure to use, and then waiting for the bites to happen and the challenge of reeling them in. I would usually try to reel the fish in, but then I would usually get tired because I wasn’t strong enough to get the fish on deck – so I’d hand the fishing pole to him and say, “okay – your turn.”

Later in life – Dad kept two fishing poles in the back shed at their home in Florida. One day, we were walking down the street in their neighborhood that overlooked Sarasota Bay. We could see the fish jumping out of the water. Dad said, “there’s probably bigger fish underneath them that are chasing them.” “We should go get bait!” I said. “Probably shrimp would be best,” he said, “we’ll pick some up tomorrow.”

The next day we drove over to the bait and tackle shop on Anna Maria Island and bought two large boxes of shrimp.
I was so psyched to be with him, walking with our fishing poles down to sit on the bench along the waterfront. It was just like old times. I thought about how many years had passed since we had stood on the back of the boat fishing.

We baited the hooks and then sat waiting. Every time I would feel a nibble, I would jerk the line and then – nuthin. When I reeled the line in, the bait would be gone, but no fish would be there. This happened again and again and again.

Dad and I continued to sit together, talking, and fishing. We’d talk, and then I’d feel another jerk on the line. I’d tug it again, reel it in again only to find the shrimp would be gone, and there would be no fish on the end of my line. “What the hell?” I would ask dad. Maybe it was the lures we were using. Perhaps the shrimp was on the hook the wrong way. I was exasperated.

But we continued to sit there for hours talking and completely emptying the two boxes of shrimp we had purchased.
“I feel like I just took them out for a nice dinner,” I told him.

But as exasperated as I felt, the most important thing was having the time to sit with dad and talk to him and have a relaxing afternoon together. As we packed up the tackle box and the fishing poles, I felt sad that our afternoon had ended, but it was getting late, and mom would be cooking dinner by the time we arrived.

It was during our walk back to the house that dad happened to mention that the fish didn’t have any teeth.
“What???” I asked him. “WHAT????”

He explained to me that the fish we were trying to catch had tiny teeth, and because of this, it was challenging to catch them. “So, we just fed them two boxes of shrimp?” I asked.
“Yes, sometimes you can catch one, but not usually.”

As we got closer to home, I remember laughing and thinking that all this time, he knew this but didn’t say anything. And then I remembered the great time we had, spending the afternoon with each other.

After he died, I remember walking into the back shed – his shed – where all of his tools and tackle boxes were. I would look up at the two fishing poles, wishing I could take the one I always used with me. But then I would think about how old it was and the logistics of getting it onto the plane. I decided that I would fish another day but leave the poles in Florida, hoping that someone else would enjoy them as much as dad and I did.

Life is short. Spend time with the people you love the most. Even if the fish are just taking all of your bait, the most important thing is the time that you are spending together. – Lesson learned.
Thanks Dad.

What Will Be the Legacy of Our Nation?

Lincoln Memorial – Washington DC / S.A.Leys Photo

I took this photo sometime around 2010 ish. One of the benefits of working 12-hour shifts every Friday, Saturday and Sunday was that around 6:00am on a weekday, I could get up, grab my camera, drive into DC and get some photos of some of my favorite places without a lot of people around.

On this day, I was leaning against one of the stones on the back of the WWII memorial and looking through my viewfinder – totally in awe of the reflection of the Lincoln Memorial and the history of the Washington DC area. I now wonder about the legacy of our nation and I’m apoplectic about the fact that we can use DNA to cure cancer, wireless networks to communicate anywhere and we still can’t abolish racism and treat each other equally.

And in the words of Langston Hughes, “What happens to a dream deferred?

Our Family Fauci Story

Here’s why, like many people across our country, I’m a fan of Dr. Fauci.

In 1992, my mom called at 6:00 am one morning and said: “your dad is in the hospital at the Brigham; get here when you can.” (I was living just outside of Amherst MA at the time, it took me under an hour to get there).

It was one of those calls you never want to receive.

Mom and dad were sailing and had arrived in Cuttyhunk, a small island off the coast of Massachusetts. They had just put the boat on a mooring in the harbor and were getting organized when dad suddenly fell flat on the deck of the boat and briefly lost consciousness. When he regained consciousness a few minutes later, mom was so concerned that she radioed for the seaplane to come and pick them up so they could fly back to the mainland for medical care.

Mom was a retired Emergency Department, Registered Nurse. Dad had been feeling “sluggish” for several months (initially they had thought he had asthma), but during this weekend, he felt well enough to go sailing. As mom remained more conscious of his symptoms, she decided to call for the seaplane right away.

Things Get Worse:

They flew back to New Bedford and then went to a hospital that, because of their small size and limited resources, could not fully assess what was going on, so he was subsequently transferred to the Brigham and Women’s Hospital in Boston. Within minutes after arriving into the Emergency Department, Dad had six seizures, followed by a brainstem stroke, which left him in a coma. By the time I arrived, he had been admitted to the oncology pod, still in a coma, while they continued to evaluate him. Because Brigham is affiliated with medical schools in Boston, — many teams subsequently arrived to assess his symptoms.

After days of obtaining a thorough history, tests, labs, he was subsequently diagnosed with Wegener’s Granulomatosis syndrome — (which was confirmed when his Brigham team consulted with Dr. Anthony Fauci at the National Institute of Allergies and Infectious Diseases).

After a few more days, mom and I were scheduled to meet with the neurology team to discuss whether he would ever come out of this coma and what our best next steps should be in caring for him (i.e., “do we bring him home?”, “does he need surgery?”, “what is his overall prognosis?”). From his team at the Brigham, we learned that multi-organ failure was a symptom of Wegener’s and that there were less than 500 people in the United States who had been diagnosed with it. It was referred to as an “orphan illness.”

Dad’s Wake Up Call

A few days before our scheduled meeting, one night after dinner, the phone rang. It was my Aunt (dad’s sister) asking Mom if she could bring a priest into the hospital to pray for dad. So late Thursday night before our Friday morning meeting with the neurology team, my Aunt and my cousin were with the priest who was praying over dad. At one point, he reached for my dad’s hand to hold it, and he (my dad) jerked his hand away, which caught everyone off guard as it was a sudden jerky movement from a guy that (up until that time) had been in a coma.

Fast forward to early the next morning (6:00 am Friday): I was the first to arrive and was walking into the department when the primary Doc asked me, “is the rest of your family here?”. “No, not yet,” I told her, at precisely the same time Mom and my brother came around the corner and walked down the hall to where we were standing. The Doc looked at my mom and said, “I can’t really explain what happened, but your husband is awake and conscious. They have the news on so he can be more oriented to time — but we were all glad to see him awake and talking to us”.

Because the illness he had affected his organs, he needed to stay a few weeks longer and then also (subsequently) have cardiac double bypass surgery.

All this to say — while Dr. Fauci was not his Doctor, the fact that dad’s team at Brigham and Women’s consulted with him was inspiring because of the quality of care they provided and the years added to his life.

Let’s Just Think About This

Now, whenever I see Dr. Fauci standing behind the President or speaking at a press conference, I feel a lot more relieved because of how knowledgeable he is considering the complexity of the Covid-19 virus. And then I remember my dad and the battle he fought. Because of the care and recommendations he received, he was able to live another 22 years (and celebrate his 60th wedding anniversary with mom).

Having experienced the autoimmune illnesses that we have in our family, we learned that Dr. Fauci is a guy you would want to have on your team because of his knowledge, tact, compassion, and the length of time he has been at the NIAID. It’s 2020 — he’s worked at the same place since the mid-1980s; let’s just think about that. In my mind, a 40-year career at the same place isn’t just a “job,” it’s an honorable life mission.

As my dad’s illnesses progressed over the years (and in 2009 when his symptoms worsened), we went to one of the top-notch cancer treatment centers in the country close to where they lived in Florida. The team informed him and mom that his cancer had returned, and there “was nothing we can do for him.” They told mom she should “just bring him home and watch over him.”

But — as usual, that didn’t deter mom who asked their neighbors for names of oncologists in the area. Once she found some names, she called me and said: “I have some names and was wondering if you could look them up on your computer.” I researched each name on her list a bit more and found that one of the Oncologists had completed his residency in Boston. Mom and dad scheduled an appointment and drove over to meet with him.

In meeting with the Oncologist, they learned he had been a resident in Boston (at the Brigham) for the same Doctor who had been dad’s Nephrologist (the Doctor on his team who had contacted Dr. Fauci to confirm his diagnosis). He subsequently agreed to care for dad and provided care in the form of that delicate balance of chemo and radiation, which led to his cancer being in remission for a few more years.

Looking good and fighting on at 80 y/o

As illnesses go, however — (especially when they’re compounded with his Wegener’s), Dad’s cancer ended up coming back, and that’s what was the cause of his death in 2014; years after the guys at the best cancer place said to mom there was nothing they could do for him.

Retrospectively, on the one hand (and when mom has had this conversation with other people), they have said to her, “well, the Cancer hospital was right as that’s what he died from.” On the other hand, when I think about the quality of his life from 2009 forward and the time we all spent together, I’m pleased mom didn’t listen to them. I’m glad we were able to find an outstanding Oncologist as well as a great primary care physician who had retired from Johns Hopkins and set up his practice on Anna Maria Island, close to the beach and 15 minutes away from mom and dad’s home.

I’m proud to live in a country where you have experts and highly skilled professionals like Dr. Fauci and Dad’s team at the Brigham that you can ask (or consult with) who can make recommendations and broaden your scope of knowledge. And yes, where they also support each other in hospitals and healthcare organizations across the country who continue to provide compassionate care for the patients and families they serve. While I have never met Dr. Fauci, I will always be grateful for him and our Brigham and Women’s team for their excellent care, recommendations, and follow-up.

The Funny, Quirky Stuff

On this day – it’s about the funny quirky stuff. If mom was still alive the stress would have started about a month ago – just before her birthday. The phone would ring and she would say “I can’t find my calendar. Your father and I have driven to the local bookstore but we can’t find it anywhere. The one place we checked that I thought would have it was already sold out.”

Valentines Day Sketch

The calendar she was referring to was the Sierra Club Wilderness Calendar – because she loved the photography. It had to be the spiral bound one – so she could flip it over quickly if she needed to. AND – it had to be the one with the large boxes (for days) so that she had enough room to list all of the appointments that she and dad had. “Okay I’ll take care of it.” I’d tell her; and while still on the phone with her I’d grab my computer, go to amazon.com or Sierra Club (#sierraclub), search for the calendar, order and pay for it and make arrangements for her to have it in two days.

By this time she’d be talking about something else and when there was a break in the conversation, I’d tell her “okay it’s on the way”. “What’s on the way?” she’d ask. “Your calendar,” I’d tell her. “Susan Ann!” she’d say, I could never quite figure out if she was frustrated that I had arranged for it that fast or if she was happy that I had saved her some time trying to find it. What was important was that it was on the way. As the years went on, she would call and ask “can you order a calendar for me?” “Sure” I’d say and by the time we hung up from speaking with one another, she would know when the calendar would be coming. But she’d still double check – “it’s the spiral bound one right?” “Yes” I’d tell her.

The week that it arrived she’d spend her initial time looking at all of the photographs. When I was with her she told me what it was she liked about each one. The next week, she’d spend time putting in everyone’s birthday, making notes of appointments and (my favorite) adding her sketches of all of the holidays and birthdays.

Easter Bunny (okay it may be a cat)

Then in 2017 when we moved to RI from Florida, we packed the calendar but couldn’t find it once we arrived. This wasn’t good as I had finally (because I’m slow like this) realized that mom’s calendar and pencil was the exact equivalent of my MacBook pro. So I went to Amazon, looked up previous orders, changed the address to Rhode Island and (“bam!”) another one was on the way. By the time it arrived though, we had already (finally) found her old one so she had all of them (2 for 2018 and her 2017 one) next to her chair.

A few weeks ago when I was with my brother, I told him I had found her calendars about a month or so before visiting him. And because I’m neurotic like that – I took pictures of some of her sketches. And yes, I even thought of ordering a Sierra Club calendar (which would be totally nuts as everything even related to a calendar, appointment or important date is so streamlined on my MacBook (and color-coded and synced to my phone and watch) that this is a totally crazy idea. Right?

But it’s the memory of it and all of the conversations and very funny moments that went with it that make this a hard idea to let go of. Need a calendar? – You can get one here.

I Found A Christmas Elf At Walmart

Today I was at Walmart looking for one of those hook thingies to hang Christmas decorations on my door. I was distracted by this really beautiful Christmas tree – the ones that have snow on them. A man walks by me and says, “wow, they’re getting so expensive, aren’t they?” (it was a 7.5 ft. tree for about $160.00). He tells me “I don’t even get a tree anymore” and that he doesn’t really celebrate Christmas since his wife died of liver cancer about 15 years ago. “She fought hard,” he tells me.

We discuss how relationships are interesting like that – how you really see someone’s strength when they are faced with adversity. He smiles upon hearing this “yes, she was quite a fighter,” he says. “I’m sorry about your loss,” I tell him – thinking that even though it was long ago, he still misses her. He tells me that there will not be anyone else for him (not sure how we got to this but we did) – but he seems content and walks me through his thoughts about the rest of the trees and the Christmas lamp post that is next to them that he thinks will be stolen in a second if someone actually purchases it and puts it out on their lawn. “Maybe it’ll help the mailman see where he is going as it gets darker,” he says.

I loved speaking with him, not only because he was telling me about his life but also because he actually looked like an elf. He was a little guy – about 5’4″ ish with short wavy hair, jeans and a red and black checkered flannel 

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Clearly – this is not Walmart. But it doesn’t matter as any tree with snow on it always looks beautiful. / http://www.SALeysphoto.com

shirt, and one of those small little cute beards on his chin – the kind that you see on elves when you’re shopping at Walmart.

When he left, I kept looking at the tree. Like the last thing I need in my place is a 7 1/2 ft. Christmas tree (that honestly – I would seriously keep up until April because it looked really cool). But when I think about our conversation and what he first said when he walked by me, it was like mom and dad were speaking through him – like a tactful “what the hell are you thinking buying a tree like that?”. (It was a Teresa Caputo like moment)

And yes, I left without it – but it was definitely the high point of my day. When I left, I had the 8 items I was holding in my arms and went to check out at the register (one of the ones that are staffed because I hate the self check out thing). The lady in front of me said “Please go ahead of me – you only have a few things,” but I said, “No, you go ahead, I just need to stand here and think about the way my life is going.” (which made the lady behind me crack up and tell me all about her daughter and the 7 (!) Christmas trees she has in her home.

I love these conversations that take place during the holidays; they’re not kidding when they say, “it’s the most wonderful time of the year”.

“How Do I Cope With The Fact That I Can’t Keep My Children Safe?” – My Lesson from 9/11/01

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On this the 18th anniversary of 9/11/01 I wish we could have a national (if not a global) debrief on where we all were and the lessons we learned. But because there is not enough room in my apartment to do this – I’ll just give you my short version.

On 9/11/01 at the point where the two planes flew into the World Trade Center, I was facilitating an orientation for the nurses and staff at Adventist Behavioral Health and teaching them about how to manage stressful situations in fast-paced healthcare environments. When I left the orientation and heard what had happened from the staff huddled around a computer, the rest of the day just felt numb and robotic.

It was a few weeks later that I came to understand the challenges we were facing.

A few weeks after 9/11, a member of the Adventist leadership team asked me to help a member of their church whose 8 y/o daughter didn’t want to go to school. She had seen several professionals already but no luck. I told her I didn’t think there was anything I would be able to do differently but she said, “look I know you like talking with children, can you just see?”

I agreed and met with her the next day.

The next day our little patient and her mom came into my office. Clearly – she didn’t want to talk to me as she buried her head into her mom’s sweater as soon as they sat down. I asked her mom about the different people they had seen, and her mom said, she wouldn’t talk and wouldn’t go to school. “I don’t think she trusts anyone” she said.

As soon as her mom said that, our young patient picked her head up and looked at me. I gently asked her “is that true? Is it hard to trust someone you don’t know?” I watched as she nodded her head up and down.

“That’s okay” I told her “I know trust is something you have to earn, right?” Again – she nodded her head up and down.
I told her it was important for us to know why she didn’t want to go to school. But that I also knew that I had not earned her trust. The only solution I had was to see if she would be willing to tell her mom why she didn’t want to go to school. When I asked her this, she agreed to whisper her reason for not going to school in mom’s ear.

I watched as she put her hand up against her mom’s ear, so I couldn’t hear her and then I saw her whispering something. Mom’s face turned pale and she started crying and gave her daughter a huge hug and said, “it’s okay honey, we’re going to all be okay”.

I asked if I could have a minute or two to meet with her mom and she agreed and one of my colleagues took our young patient across the hall to sit with her where they would still be able to see us. Mom looked at me and said “she told me she was afraid to go to school because if she left, she was afraid the terrorists would come to get her (mom). So together we developed a strategy which we hoped would help integrate her back into her classroom. Also during that time (and from working with the teachers in some of the school districts in the area and hearing their suggestions, one of the things they stressed was having kids being able to attach pictures of their families to their backpacks so that they felt they would have their family with them – at least in spirit.

But one of the most challenging and poignant conversations was with another one of the church organizations I had been consulting with when I asked the members present if there were any questions (related to the developmental issues and ideas for coping skills) I was speaking to them about. One woman raised her hand and when I called on her, she asked

“How do I cope with the fact that I can never know that my child will be safe when I send them to school?”

To this day, this question haunts me. And when I think about all of the chaos and turbulence that has and continues to take place in our country and the anger, fear and divisiveness that is present, I think that this is the issue that’s underneath all of it – the vulnerability and sadness in knowing that we are never able to know for sure that our children and families are safe. This idea haunts me – and I’m not even a parent. But the one thing I remain inspired and sometimes saddened by are the strangers who assist each other to get the help and support they need even (sometimes) at the cost of losing their own lives.

“What’s That Spot On The Back Of Your Leg?” – My Adventure With Melanoma

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10 years ago today was the day of surgery. The Doc said “I think we’ve got it all.”

The “it” was the Melanoma that had showed up as a spot on the back of my leg. In a place I couldn’t see, in a spot I wouldn’t have thought to check. Because I wasn’t really paying attention anyway..to that spot..on the back of my leg.

The Melanoma spread fast. The doctor said “you need to get this checked out… Now.” When I told her I didn’t have insurance she said “we can see you here” (at the NIH – where I had volunteered as a “healthy” patient for a clinical trial but slowly learned I wasn’t as healthy as I thought.

A few days later, I was in the office of the chief Dermatologist at the NIH who agreed with the Doctor who had initially diagnosed my little spot. “You need to have this removed – Now!” – same exact words, but a lot more definitive and with a tone I will never forget. She informed me that she had colleagues who would be able to see me in their office which was closer to my home. “Tell them I referred you” she said. “they will be able to assist you and I’ll call them and tell them you’re coming.”

Both Doctors were extremely compassionate and helpful in assisting me with coordinating care. If you’ve ever been on the receiving end of a conversation that involves the term “malignant melanoma”, you know how great it is to have that critical blend of compassion, wisdom and a great navigational plan.

The picture above was where I was when I received the second phone call from my Doc informing me that they hadn’t got it all and needed to schedule surgery with a plastic surgeon because of where the spot was located. Sitting there at the end of the jetty in Old Harbor, Block Island (RI), I thought about the people who are most important in my life – my family and friends. My parents (who were with me) encouraged me to get back to CT via the high speed ferry and then home to MD to have the surgery. It was a no-brainer decision that was the right one. Financially however, not having insurance and having the diagnosis that I did and the surgery that I needed was costly. I lost a lot financially but gained my life and a fresh new perspective about that which is most important.

10 years ago today, I was really, really lucky that my itty bitty teeny tiny spot, located in a place I would never check, was found really, really early.

Need to know where to start with checking your skin? Start here

#melanoma #melanomaawareness #checkyourskin #getnaked #cancer #dcmfcanada

“I’ve Got The Cat!”

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It’s a little nutty when you think about it.

It wasn’t easy for me to leave New England to start a new job for a few reasons, but the one that was most bothersome for me was not being able to see the flowers at mom and dad’s grave site.

I’m not really sure what started this idea, but I think it was the fact that I wasn’t ready for mom to go when she died.  And I know that the time of anyone’s death is not anything you can ever control; but mom’s death just took the wind out of my sails for a bit.

So after their burial service, when everyone had gone and my brother had flown out and I was on my way back home to New Hampshire, I stopped into the cemetery to say good bye and take one last look at the flowers we had left knowing they would be gone the next time I was there. As I stood looking at the tombstone I thought “nope, can’t do it”.

I felt like I needed to leave something a little more “in line” with our family so I got back in the car and drove down to Chaves where I found this little cat who has been “guarding”… okay maybe “watching over” mom and dad since their burial service. 

In a way that I really can’t explain, there’s something reassuring about this teeny little kitten just hanging out with mom and dad that always makes me feel a little bit better and more reassured. This is especially true now that I am now in Maryland and can’t stop in to see the flowers or speak with them as much as I had when I lived in New Hampshire. 

As mom had always loved planting flowers in the cemetery, we left a few bulbs thinking no one would really notice and when they came up, they would help shade the kitten that was watching over them. It was the perfect plan. And yes, I thought of leaving a Christmas tree with blinking lights but even I know that there needs to be a little dash of tact when dealing with the “things to leave at the cemetery” issue. 

So this week, my brother went to meet with our accountant and stopped into the cemetery to check on things (as instructed by me, his neurotic sister, who wanted to make sure the cat was okay and the box of greens left at Christmas had been moved so the flowers could come up in time for Spring). 

But today, he called me to say there was a huge sign posted at the entrance to the cemetery that said that on April 10th they were going to remove everything from the cemetery except for flags for veterans. This news made me a little apoplectic – not only because of our guardian kitten but because I still haven’t heard from the person responsible for making sure there is a flag in the cemetery for dad on veterans day and Memorial Day.

Anyhoo – Luckily my brother noticed the sign and called me with his report.

“Don’t worry, I’ve got the cat!!” he said.

It was funny in that he also realized the importance and significance of its presence at the cemetery. It’s like “if anyone in our family is anywhere, there must always be a cat”. “I’m taking it with me to Florida” he said “its not like it’s going to take up a lot of extra room in my luggage”. 

“You should probably give it a little bath” I told him.

“Already did” he said. We both were reassured our little guardian kitten would stay with us instead of being absconded by someone removing everything from the cemetery.


Sometimes when I go to the cemetery I can almost hear mom: “you know we’re not here right?” – which I understand. But there’s something about having an access point that’s a little more tangible than a prayer or a quiet walk on a beach. 

Maybe that was the point of it all – to get families out of the cemetery and talking to each other instead of standing in a cold, quiet New England church yard staring at a slate tombstone.  Now if I want to see the cat I have to go to Florida to see Scott and Trey (his Maine Coon cat). 

But there’s something about the transition of our “watch cat” that has disrupted my true north.

Delft

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Delft

“What the hell is delft?” I ask my mom.

We’re touring around our over 55 living community in Florida in our golf cart looking at all the homes. It’s the beginning of summer and most of the winter residents have already left. The people who live in the neighborhood year ’round have been working on fixing up their homes.

There’s one street where several small bungalows have been renovated. As we drive up the street slowly to make sure we don’t miss a thing – a door that has just been painted or a decoration that has just been installed, I say to mom “I would buy one of these homes in a minute if I could afford it.”

“They are really nice” she responds, but then scoffs at a home which has just been painted a color which is somewhere between pea green and olive. “Ugh, that’s awful,” she says, “I would never live there”.

“Come on, it has a nice yard”, I tell her.

By then, we’re further up the street. She looks over at the wooden door of one of the larger bungalows that has a pool in the back. “Nice blue color”. I say.

“It’s delft,” she responds.

“Delft? What the hell is delft?” I’ve never heard of this color. As I drive the cart a little further, I quickly scan my mind looking for the place that has all of the colors in a  Crayola 64 pack of crayons. I’m thinking midnight blue, navy blue, sky blue, blue-green, periwinkle and then off to the land of lime green, bubble gum and burnt sienna.

“There’s no such thing as delft”. I tell her. I am certain of this. Yet I’m also wondering how she would know this and more importantly, how she would remember. By the time of this tour around our neighborhood, my mom had been diagnosed with vascular dementia which had progressed rapidly. If you asked her what we had had for dinner the night before, she may have been able to remember but it would have taken her a while and she wasn’t a fan of being “quizzed”.

But the more I thought about it – back in time to several years before, I remembered that she loved designing the rooms in our home and had spent many times picking out paint, fabric, and wallpaper for not only our home but for the boat as well. Of course she knew about this color “delft” and I regretted that I had forgotten about her passion for decorating and designing.

“It’s a color that is prevalent in the Netherlands,” she tells me.  “We saw it in a lot of places when we went there, and in Denmark and Sweden as well.”

I had forgotten that she and dad had traveled to Scandinavia; I think it was one of their anniversaries when she and dad had decided to go – just the two of them.

This was the blessing of being able to care for her for the three years before she died. We were able to reconnect with each other and laugh and have great conversations like this one; but at the same time, it occurred to me how sad it was that I hadn’t been able to spend the time with her and dad that I would have loved to. And I wished that we had had more time to reminisce about the extensive traveling she and dad had done instead of worrying more about upcoming appointments, medications and making sure she had the care she needed.

As we continued to drive up one street and down the next, she continued to point out everything she could spot that was delft. By now, we were both laughing but I remember her conviction as she pointed each door or set of shingles out to me upon saying “that’s delft and that’s delft… and so is that!”

Suddenly it seemed that the entire neighborhood had transcended to Delft.

Not only was it a colorful lesson for me, but I think the #Crayola people may have some serious catching up to do as well!

It’s A Nice Car Driven By A Little Old Lady

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Today is the day

On my way to Portsmouth, NH, the Lexus RX SUV I have been driving (Dad’s car) officially crossed into the land of 100,000 miles.

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After I received my master’s degree, I had the opportunity to work in hospitals as far north as Vermont and as far south as West Virginia. Whenever I moved, dad would always encourage me to find a good auto mechanic in case anything ever happened to the car. “You need someone you can trust,” he told me “and if you do, and they’re good, you can keep driving that car”. 

Did I listen to him? – No. I didn’t find a good mechanic. Instead, I found the best pizza restaurant and the best Chinese food delivery service along with the best restaurants and theaters. 

No, I did not seek or locate an automotive mechanic. 

At the time dad gave me his automotive recommendations,  I had a really cute little Honda Civic sedan that I loved.  When I moved to Vermont, I went with him to trade it in for a Toyota Camry as he wanted to know I was in a bigger, safer car.  When the Camry was totaled (after I was hit on route 95 just north of New Haven, CT), it was time for us to go exploring for yet another car. 

Because I had a really great job, I could afford a better car on my own so I asked my dad to accompany me while I test drove every car I have ever wanted to drive or own in my life. And like the good sport that he was, he took it all in stride and came with me.  We drove Honda’s, a VW Jetta and yes, I even subjected him to a really cool Jeep Wrangler; no, not a hardtop, the one with the side windows that you could unzip during the hot summer months when a drive to the Cape was in order. 

The last car we drove was a brand new, bright red, Acura Integra which we found at Acura of Newport.  Once I started driving it, I was smitten.  I told him – “I LOVE this car!” as we drove and drove all around Newport. We were at the tip of Ocean Drive when he said to me “You know, we’re going to have to take this car back to the dealership right?”

“Why?” I asked him, jokingly – as we continued driving past the mansions along the drive and then toward Bellevue Avenue. Did I tell you I loved the car?

“You have to pay for it”, he said. 

When we returned to the dealership, we negotiated the cost of the car and then I thought that because I had driven the red one for so many miles (and because red cars tend to get pulled over a lot), we purchased a nice navy blue Integra instead. More conservative; less likely to be pulled over.

Every car I drove from that point on was an Acura – some of them were owned, many of them were leased but I absolutely loved driving them. I also loved the fact that they had everything already in them when you picked them up: a nice sunroof, heated seats for those cold, late nights coming home from the hospital, space for my bike, a great sound system, the way they hugged the road when you drove them and the fact that the mileage was really, really good. The other thing I loved about them is that you could talk to anyone on your phone through the sound system of your car just by pressing the small black button on the steering wheel as you drove. If I was listening to music, it would be immediately disrupted by the call coming in with information about who was calling displayed on the screen in front of me.

The last Acura I had was a white “Bellanova pearl”  ILX – very beautiful (and very fun to drive).

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Acura ILX (Bellanova Pearl)

I arrived in Florida in September of 2014 (when this picture above was taken).

Sadly, Dad died after his long battle with cancer a month after I arrived at which point mom’s memory declined severely. As we adjusted, she and I realized that it was better for her not to drive. We also decided that it would be better to reduce the number of cars we had. Because the Acura was leased and the Lexus was fully paid off, the Acura was the one we (okay – Mom) decided to let go of (honestly, I wasn’t ready to let it go as it was such a beautiful car). The fact that it was a newer lease also made the decision difficult. But we also knew we needed to be practical with our decisions.

In trying to figure out the best solution, I knew it was better to be honest and open about our situation. So I drove to the Acura dealership in Sarasota, told them that dad had died and I would be caring for my mom and that we only needed one car as mom was not driving and asked if they could help.

The dealership was immensely supportive and purchased the car back from me. Their customer service and management was nothing short of phenomenal (which is also another reason I always went right back to Acura whenever I needed a car – their customer service is phenomenal). 

After they purchased the car, mom and I resorted to cruising around in dad’s Lexus which (at the time) only had about 60,000 miles on it. 

Mom was pleased with this low mileage and used to tell everyone “it’s a nice car driven by a little old lady who never takes it anywhere”.  If you knew my mom, a very analytical, quick-witted and astute retired ER Nurse, you would know the term “little old lady” was not quite the way people described her.  But as her memory was fading and her steps were not as lively as they had been previously, our pace did slow down a lot. 

If we drove around the neighborhood, we would usually use our golf cart. And we only used the Lexus when going to doctor’s appointments, to the grocery store or out for lunch. After some surgery on her legs, she would also start using her cane more frequently and would often have trouble navigating the high step into the Lexus.

After 3 years in Florida, I was offered a job in New Hampshire and mom and I decided to return home to New England. She found a nice apartment in an assisted living place close to our friends in Rhode Island so we packed our belongings in the Lexus and headed north. While it was a fast trip, driving with mom (and our cats – Nate, Callie, and Trey in their carriers in the back seat), was a fun ride. Mom had wanted to go slower so we could stop and see friends along the way but because I could not defer orientation with the new job, we only had three days to get “home” to New England. 

Once we arrived, mom settled in to her assisted living place while I continued on to New Hampshire to start my new job.

As I relocated to my new city of Manchester, I thought again about what my dad had told me: “Make sure you find a really good auto mechanic”.

And yep, again, I didn’t listen.

It was during the second week of orientation at my new job that the transmission of the Lexus (which had been repaired a month-ish earlier in Florida before we left) decided to stop working. When the light went on, I found the nearest automotive repair place closest to me (using AAA) and drove to see if they could help. I immediately assumed this was going to be a very arduous and expensive endeavor which would cause me to miss a full day of orientation.

But what actually happened was that I walked into a really good automotive repair shop that not only agreed to repair the car, the mechanic also drove me to work so I ended up missing only 5 minutes of orientation instead of a full day.

And as the subsequent months progressed, the guys at AutoCare Plus not only fixed the transmission, they also changed the oil and told me what the best tires would be to put on the car so that I would have no problems driving between New Hampshire and Rhode Island so I could spend every weekend with mom. If I ever had any glitch with the car, I would take it to them and they would explain everything from what needed to be done, to their recommendations and the cost. I trusted them and they did really great work.

In the 2 hours and 6 minutes it took for me to get to mom’s apartment from New Hampshire, I frequently would sense the “I told you so!” coming from my dad as I drove, feeling safe in the knowledge that everything that needed to be done with the car was done.

6 months after relocating home to Rhode Island, mom passed away. I spent the next month packing, donating and subsequently moving everything out of her apartment. Having such a large car was a blessing, but the more I drove it, the more I thought it was too big for me and time to go back to driving a smaller car.

At the same time, I also realized that the car has some great memories, is in very good shape and is completely paid off so, since that time, I have continued to drive it. And while I miss not being able to press a button and talk to my friends from a button on the steering wheel, I have come to enjoy the quiet rides and beautiful scenery along the New England roads whenever I am driving.

When I first arrived in Florida, the car (which at the time was 10 years old) had 60,000 miles on it and because mom and dad were so proud of this, I tried to go easy with adding additional mileage to the car, so going over the 100,000 mile mark as I did yesterday, has been quite an occasion filled with good memories of conversations in the car along the way and the benefits of the message that dad always tried to convey that I finally did listen to – “Find a good auto mechanic whenever you move to a new town”.

Thanks Dad; message received.

My 6:00am Wound Care Nightmare

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It happened again just as it always has. 6:00 am, I have just fallen back asleep after getting up and there’s Mercy, your friend, walking into a room where I am sitting and looking down at me with a big smile and a warm hello.

She asks about you and I tell her you have died. Slowly it occurs to me that she has died before you so technically, both of you are in heaven.

I walk downstairs and find myself in a hospital where I have once worked and there you are, with a strange hand held pad thingy in your hand telling me you’re trying to find your appointment. “It’s at 9:00am,” you say.

“It’s 11:00”, I tell you, sadly realizing that again, we have missed an appointment and I’m angry at myself for scheduling it too early because you always told me that you preferred all of your appointments to be scheduled at 11:00am. “We won’t have to rush in the morning, then we can stop for lunch and I can be home in time for my nap”, you said.

It made perfect sense. But unfortunately, there were those few times that no appointments were available at 11:00 so we had to adjust for the appointment with the financial planner at 10:00 am or the outpatient surgery on a Friday afternoon at 2:00pm.

Seriously, who does surgery on a Friday afternoon at 2:00pm? End of the week, everyone’s tired; why?

The surgeon struggles to stitch your skin but it breaks and you keep bleeding. He tries again and again and again before he finally gets it. You are in pain. Normally you’re one heck of a brave trooper but not this time. “Ow!” you say, loudly. I can’t even look at all the blood but as he cleans and covers your wound with bandages and talks to you about infections, debridement, and wound care, I look back at your leg and see it braced against the cushion on the seat below you as we are sailing close-hauled to Martha’s Vineyard on a beautiful sunny day so many years ago.

“I’m paying for all that fun we had out in the sun and on the water,” you tell us. I don’t know that our young surgeon understands the joy of sailing to the Vineyard as he continues to stitch your skin.

I feel your hand on mine as we look at the pad you have with the appointment time on it.  I can’t believe I have screwed this up again by scheduling it at 9. But you say “it’s okay we’ll reschedule” which often meant you didn’t really want to go to it anyway.  You were done with the surgeries and the pain with the subsequent bruising and scars.

And then I realize that you’re in heaven with your friend, Mercy, and I don’t know why you’ve come to visit me in this 6:00am dream I am having…in New Hampshire, still under a year since you have died.

But I still can feel your hand.