She’s just like a kid.

March 2019

Years ago when my children were in elementary school, the son of a good friend wrote a little report on me. In the report, he talked about my books and at the end he wrote something like this: “I admire Nancy Carlson because she’s just like a kid.” I thought that was the best compliment a kid could give me.

My husband Barry once said almost the same thing about me. We were at a party and I overheard him say, “Nancy writes picture books because she never grew up.” I remember being a little irritated hearing him say that, but I knew he was right. Back then I did live in my own childlike world of imagination, even though I was by then the mother of three children.

I wonder if the child inside me is still there? When Barry got sick with FTD, I sure had to put on my big girl shoes and get my act together. I am not saying the child inside didn’t come out now and then on the journey with his illness. I would still imagine fairies hiding in the forests that I hiked. I would imagine that out of the blue Barry was cured because I discovered a magic pill for FTD. That is definitely the way a child would think.

For three years, I have been writing a memoir about this journey with FTD. Three drafts contained just words with very little art. By the fourth draft on the advice of my agent, it became more like a graphic novel. I thought, oh boy, I get to draw pictures again. But there were no little bunnies or dogs in this artwork. Instead horrible memories became much, much more painful to remember through images rather than words. I had to be a grownup every time I sat down to work on the book. It took almost a year of fits and starts to get it written and illustrated. It is one of the hardest things I have ever done. Now the manuscript is in my agent’s hands to hopefully sell to a publisher.

Since handing the book over, I took a little trip for my 65th birthday. I saw new places and ate new foods. I spent hours and hours in museums as I had often dreamed about doing when Barry was sick. It felt good to see new things far removed from our FTD journey. But I had to be a grownup as I tried to figure out traveling on my own.

Now I am back home busy speaking in schools during the day and at night looking at the pile of picture book ideas sitting untouched on my drawing table. In the pile is that naughty squirrel so wanting to get into some trouble. There are talking vegetables and that space loving frog. The pile also is filled with pigs, birds, fish and slugs all wondering when in the heck old Nancy is going to give them their stories. They have been waiting a long time while I worked on the memoir. But be patient guys, because as Picasso once said, “It takes a long time to become young.”

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Spice Timeline

Last week I went a rampage organizing my apartment. It was a job way past due. My cupboards were a mess and my pantry had become a mouse-haven this late winter. I really, really hate mice. Give me a snake any day or a big spider but please no mice. I had to clean that pantry so the mice would find a new apartment to hang out in. I screamed so loud when I found a dried- up mouse in a trap that I am sure all my neighbors heard me. I really hate mice.

As I worked, I thought that if Barry were alive, he would take care of the mouse problem. He took on many unpleasant tasks — beehive removal, drain unclogging and other gross jobs. Once he captured a flying squirrel that was living in our cabin, while I laid in bed under the covers with our baby Kelly. Now here I was wearing big mitts, removing a dried-up old mouse. What was it going to do? Come alive and bite me? I had to laugh a little at myself for being such a big wimp.

I decided to clean out the spice cupboard while I was at it. Most of the spices were past their expiration dates, many purchased by Barry for grilling. Barry just loved to grill. There was garlic salt for ribs dated 2010, meat rubs dated 2006, onion powder and many others dating from 2007 to 2012. I thought about what he must have been thinking at the time he bought these. Did he know he was getting dementia? He stopped paying taxes in 2006 and the summer of 2012 might have been the very last time he ever grilled. These spices were a timeline of a man getting sick and eventually dying. The only spices not out of date were the ones I use to bake dill bread or Swedish cardamom bread. Seeing the old spices made me sad. I thought about all he had lost by the time I moved these spices to my new apartment and a new life. I wondered why I moved them at all when they were so old and, clearly, Barry would never grill again. Maybe I was still hopeful we would get our old life back.

I emptied the old spices into the garbage, recycled the containers and then looked into an almost empty cupboard. Another part of our past life was now gone, piece by piece, spice by spice. I am moving forward alone and I better buck up and take care of the mouse problem. So I set more traps. I can do this, I thought to myself. And maybe someday I might learn to grill like Barry. But for now, I think I will just stick to preventing mice — putting one foot in front of the other.

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A huge weight lifted

November 2017
On the anniversary of Barry’s death, I knew it was time to visit the care center where he lived for the last three years of his life. I had no excuse because the bridge to get there finally reopened and there were no detours to travel. Besides I had promised myself that on the first anniversary of Barry’s death that I would try to do something nice for the staff on his floor. I went to drop off a check so they could order food in when they worked a double shift.

I had spent a year avoiding the place. It is still the most painful part of Barry’s journey with FTD. Memories of all the other tough times are fading, but the image of him lying in bed, being changed and fed by the staff still sends me down a rabbit hole of extreme guilt and sadness.

I also feel very sad that I wasn’t there with him on his last night alive. Since then I have been told that most dying people want to do it alone. But then why did he hang on until I arrived that morning? He died just a few minutes later.

All these thoughts were with me when I drove up to the care center. Everything looked the same and my usual parking space was open. My friend Cathy was at the front desk like she always was, and I got a big hug from her. The same guy who couldn’t talk was still sitting by the front door. But now he was missing a foot.

Barry’s old floor also looked the same. Lori who works the floor desk was there, and I got another big hug. It was good to see her. She saw me at my best and worst and always had a positive thought for me. We also joked around a lot.

One nurse called out, “Hey, it’s” That’s the name Barry called me until he lost his speech. The same cook was there. We reminisced about when Barry started saying Fuck You over and over, how she would stick a Popsicle in his mouth, which stopped him from swearing. She told me she missed him. As I walked around, I saw some of the same people in their same rooms. The piano was there as was the water cooler that my granddaughters loved to play with. The same worn-out Thanksgiving decorations were up as well.

But some things had changed. The place had been sold so it now had a new name. The horrible carpet in the TV room was replaced with a wood floor. Someone new was in Barry’s room, of course, but the bed was still in the same spot. There was a new man with FTD on the floor, who was in the same phase Barry was in when he arrived — repeating the same movements over and over again. I know from experience that will not last.

When I left, I realized that something else had changed, and it was me. First I felt a huge sense of gratitude for the staff who really cared about Barry and did a better job taking care of him than I could have. I felt a huge weight lift from my shoulders after the visit. Maybe it was all that guilt leaving me. Perhaps it was because I am now a different person than the one who went there each day, always worried and crabby. I realized as I drove home that I am getting used to being happy again. It is a wonderful feeling.

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The end of summer and autumn.

November 2017
I am up at a little cabin that sits just two feet from Lake Superior. It is a cold, rainy and windy November day. The huge waves today on the lake come crashing in and hit the cabin windows. Giant waves like these tell me that storms are coming even as my radio just confirmed a winter storm is on the way.

A year ago, I was always rushing to the care center to be with my husband Barry as he laid in bed trying to die. Now I am here up north, a widow who thought she could finally get on with her life. But things are more confusing than ever. Barry’s death has not been as big a relief as I thought it would be. The loneliness just does not go away. As I try to make sense of this journey I have been on with my husband — and now by myself — I have learned a few things and finally accomplished one goal I set for myself at the beginning of summer. More on that later.

This summer I rented that little cabin with no electricity or running water. I always thought that this was the true me, living alone off the grid in the woods. But I learned pretty fast that this is NOT me. I really miss people and electricity. The cabin is dark and chilly even in the middle of July. I discovered it is pretty hard to work at the tiny kitchen table. Without good lighting, it is hard to see what I am drawing. The cabin is also full of stuff. Every surface has something on it:
frames, baskets and knick knacks of all kinds. In my opinion, just a lot of junk. I realized that I am not about possessions. I would rather get out, travel and experience life than surround myself with stuff. It just gets in the way.

Being alone at that cabin did not help me move on nor heal from Barry’s horrible illness. It made me feel worse. It seemed like a good idea last spring when I signed the rental agreement. Maybe I was trying to hide from the loneliness and loss. But it doesn’t work that way. You just have to face it and hope someday you’ll wake up and discover that you are truly happy again. But the summer was wonderful in many other ways. I met some new friends, one of which I will be renting a nice trailer with next summer. The trailer is in the municipal campground in town with a great view of Lake Superior. It has electricity and running water; and, thank God, there
are people around. I can drive a few miles and be in the middle of nowhere to hike and drive a few miles back to get a cup of coffee at the coffee shop that is a short walk from the trailer. I stayed in the trailer this fall for a few days and loved it. I can draw all day at the kitchen table/fold-down bed and see what I am drawing!

In the beginning of summer as I hiked on the wet Superior Hiking Trail, I saw huge moose tracks in the mud. I really wanted to see a moose. As summer went on, I saw a couple of bears, lots of eagles and deer but never a moose. I hiked and hiked but no moose. Then finally in the late afternoon on a autumn day it happened. A friend and I had driven to see Partridge Falls on the Canadian border. The tree colors were brilliant and the falls huge because of the all the rain. Sitting next to the beautiful falls, I felt the most at peace than I had in a long time. As it started to get dark and chilly, we returned to the car and while driving down the dirt road spied the biggest creature I had ever seen — a moose with a huge rack! He looked back at us slightly annoyed. I tried hard not to scream my head off with joy. He slowly trotted down the road and then cut back into the woods. We thought he was gone, but when we turned down another road, there he was again.

Now winter is coming, along with the anniversary of Barry’s death. I may never get over it, but I am confident it will get easier. I won’t live alone in a cabin off the grid ever again; however, I have accepted that loneliness is just part of this experience. It won’t go away, but I can learn to live with it. And you know what? It just makes me happy to know that somewhere out in the forest is another moose and another beautiful waterfall to experience — even if I am alone. That is something to look forward to.

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A sign from Barry on a family’s sentimental journey

July 2017
Last week my family gathered at Gunflint Lodge on the Gunflint Trail in northern Minnesota. I felt this adventure for all in memory of Barry would be a good way to spend some of the money left from his funeral and some of his Social Security benefits.

Barry and I stayed at the lodge one winter years ago to ski. We had a good time until he fell on the icy road and hit his head really hard. After that fall, I spent hours skiing alone out in the wilderness and loved it. Barry sat in the cabin reading and taking saunas. At times during our FTD journey, I thought back to that fall and wondered if it could have been a cause of his illness. I know that this was just magical thinking, but for a time that thought gave me something to
blame for his horrible disease.

Now I was back at Gunflint Lodge with the family to spread some of Barry’s ashes at our favorite campsite on Rose Lake in the Boundary Waters. Barry and I had stayed at that site a few times before we had kids. The high site overlooks Rose Lake with a stream and water fall nearby. Being young and in love, we had a lot of fun at that campsite!

It is an easy day trip from the lodge to the campsite. But would it be easy with an almost three- year-old and a five-year- old who hates bugs? Also I was the only one who had ever carried a canoe over a portage. And that had been a long time ago.

We decided to take a trial run on the second day of our stay, canoeing along the shore of Gunflint Lake. Right away we realized that almost three-year- old Lilly could not do this trip. She wanted out of the canoe the minute she got in. Charlotte our five-year- old loved it. She had also earned her spot by doing a three-mile hike to Magnetic Rock without any fussing, until she fell on the trail. After a quick brush off, she was back leading the hike.

The next day seven of us set out for Rose Lake. It was a cloudy day but no rain. Brian, my daughter’s husband, kindly stayed home with Lilly. We were dropped off at Bearskin Lake which we crossed to get to the portage. Charlotte sat in the middle of my canoe, watching us zigzag across the Lake. The portage went well. It helps to have sons to carry the canoes. We then had to canoe a small section of Duncan Lake where we left our canoes at the portage and hiked to the campsite on the famous steps portage. This portage is not an easy one with a canoe on your back so we were lucky to just leave ours. We hiked to the Rose Lake shoreline, swam and had lunch. I told the kids about how a long time ago their dad with his dog at his side loved to fish right from the spot where we were sitting. It felt good to share these memories.
After lunch Charlotte led the way back up to the campsite. We had to cross a very old foot bridge to get there. Charlotte was afraid and announced, “That bridge is not safe.”

But I with help from Olivia, my son Pat’s girlfriend, we coaxed her across it. Right when she got to the other side, the sun came out. I said, “Look, Grandpa Barry is so proud of you for crossing the rickety bridge that he sent you a sign from heaven.” I wondered what she was thinking as she quietly looked up into the sky.

The campsite had changed a lot over the years and there were downed trees everywhere. But I knew this was the place. At the edge of the cliff, high above the lake, we talked about Barry and how much we all wished he were here with us. A huge sadness came back into my heart and I wished, for a moment, that we weren’t here. Nevertheless, I threw the ashes over the cliff and some blew back and hit us in the face. That made us all laugh.

It was time to go and give Brian a break from watching Lilly. Charlotte fell asleep in the middle of the canoe as we paddled across the first lake. She woke up in time to lead us across the portage. On the second lake, a loon popped up in the water right next to our canoe. Charlotte said, “Look, it’s a sign from Grandpa Barry. Let’s keep looking for signs from Grandpa.” Wow, she got it! I hope she keeps looking for signs because her memory of Barry is already fading. But I think that looking for beauty and signs in nature is the best gift he could ever give her. We got back to the lodge, rescued Brian and had a beer in honor of Barry. My sadness gave way to a feeling of gratitude for my amazing family. Barry would be so proud.

The next stop for Barry will be Wisconsin.

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Figuring more stuff out.

June 2017

When I was a little girl, I used to get an empty frozen orange juice can from my mother. With can in hand, I would crawl under the bushes in the front of our house and pretend that juice can was my own little cabin in the woods. I gathered small stones to create a path to my cabin. I placed sticks for trees and flowers for the garden around my imaginary cabin. Under those bushes, I created a wilderness experience that I have seemed to crave throughout my life.

Now 57 years later, I write this post up at a little cabin in the woods, just like the one I imagined as a six-year- old. I have rented the rustic cabin for most of the summer. Each day I sit in the screened porch and work, typing and slapping mosquitoes at the same time. I can hear the creek running a little way down the hill. I bathe in the creek each day. The path down to it on this June day is lined with lupines of all colors.

I have to admit having no electricity, internet or running water takes a bit of getting used to. There is a market and coffee shop four miles down the trail where I can get online and eat a fresh-baked cinnamon roll in the morning. Proof there is a God. I also never realized how often I checked my phone until I spent my first few days at this cabin. I kept checking it out of habit, each time realizing that I have no service. I am slowly getting used to it.

In hindsight, choosing this place to stay is actually quite symbolic. It’s what I always imagined as a little girl. Everything is up to me: starting a fire in the morning, running to the outhouse at midnight and coping or freaking out if a bear walks through the yard. (I hope I cope can with it.)

Since Barry’s death from FTD, I am on my own and had better learn to deal with everyday life as I move forward. I could have just stayed in the city for the summer, but this solitude is what I needed. I think that I am finally ready for life as a single person.

A few days before I got to the cabin, I found myself smiling for no reason at all while rowing at the YMCA. It felt really good. The serendipity of finding this cabin makes me smile, too. I met the owner’s partner at a mushroom class last fall. They had bought a new place with electricity five miles down the road so this off-the- grid cabin was available. A six-year- old’s imagination became reality. In fact, it is better than I could have imagined, minus the mosquitos.

I am not sure what comes next after this summer, although I have some ideas of what I might like to do. But for now as I sit on the porch overlooking the hillside of lupine and birch trees, I have faith that things will fall into place. But if things don’t work out, I know now I can handle what comes my way. So tonight, I slap mosquitos and think that a six-year- old girl’s dream finally came true. I also know that come morning, I will have a fresh-baked cinnamon roll and will continue to figure stuff out, one mosquito bite at a time.

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Finding life’s direction…

May 2017

I spent the first week of May in Grand Marais, packing my things after staying in a charming house there on and off all winter. It is where I worked on the third draft of my memoir. Most of this winter was cloudy and I began feeling a bit depressed as I wrote and relived Barry’s and my many-year journey with FTD. I spent much of my time avoiding work on the book. And when I did try to concentrate on the work, it seemed that I was always taking breaks to jam a cookie or candy into my mouth. Eating sweets is the way I cope when things are hard. In any event, I finally finished the third draft. I now look forward to working on other projects and start hiking again. Spring, however, can be a tough time to hike. It is wet, muddy and icy, not a good combination for making much headway.

The sun suddenly came out as I cleaned the house. I realized then that I also had to stop avoiding scattering Barry’s ashes along my favorite trail. Barry had never been on this trail, but it is where I found the lions’ mane mushroom that reportedly helps with memory loss and dementia. The day I found that lion’s mane was the day I really started to feel hopeful again. I know I will visit this trail many more times to look for that mushroom and remember this turning point in our FTD journey. Now it was time to head out into the sunny warm day with a small container of Barry’s ashes. At first I went the wrong direction on the trail. I continue to surprise myself with how often I can get lost. After walking for an hour along the trail, I realized the error, turned around and walked the other way. By the time I got to the lions’ mane spot, I had walked for three hours.

Winter had really changed the woods, but I knew I was in the right spot. The sun was shining, the air still and it felt really good scattering his ashes on such a pretty day. I saved a small amount of ashes to scatter at the beginning of the trail, thinking that someday I will bring my grandchildren here and they might be able to walk an hour in and an hour out with me. As my feet ached after three hours of hiking, I had to admit to myself that someday I won’t be able to walk that far again. With mission accomplished, I returned to the house for a cold beer. Barry would have enjoyed that part of the day best.

The next day I decided it was time to hike the last part of the Superior Hiking Trail. I didn’t get much of it done last summer and still have a long way to go. Naturally I got lost again and went way out of my way trying to find the trail. Another two- hour mistake. Later that day I met my friend Carol for a burger and a beer and we laughed about my missing sense of direction. As we chatted, Carol asked many questions about my future. I really haven’t figured it out yet. All I know is that I want to keep writing and hiking as long as I can.

On my drive back to Minneapolis, I stopped and found the right part of the Superior Hiking Trail that I had been looking for and walked twelve miles of it. When I was done my feet hurt again, but I felt hopeful that I was finally on my way. I know that even if I spend some of the time lost, I will get there. Wherever there may be.

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MY JOURNEY – Grand Marais, April 2017

Stuck in a rewind

Another Minnesota winter has come and gone. The weather was pretty good, not too cold. March came in like lamb and went out like a lamb, as the saying goes. Getting into a spring state of mind is a bit hard this year. I am at the North Shore as I write this, looking at the wonderful sunshine bouncing off Lake Superior. But I don’t quite feel the happiness that I usually do as spring begins bursting out all around. I think it’s because I am stuck rewinding Barry’s last years and death in my head.

As I backed-up my phone the other day, I was startled to see some very late pictures of Barry that I took when he was so sick and horribly thin as he waited out his last few days on Earth. I am trying to work on the second draft of my memoir and reliving our entire story yet again for a third time. I never knew this would be so hard.

I keep having thoughts about how I could I have done things differently. Why did I go home on Barry’s final night and sleep in my own bed while he laid alone, perhaps scared, at the care center? Why didn’t I try to keep him at home longer and try harder to take care of him. Should I have paid for physical therapy to slow the atrophy that would eventually take over his limbs? I know it is useless to think about these things over and over, but I can’t help it. Most of all, I think about how unfair it is that Barry can’t see this beautiful spring day. I know this is normal thinking for a person who is just five months into the loss of a spouse. When people ask me how I am doing, I always tell them, “Fine, because I lost Barry a long time ago.” That’s true, but why is it so hard now?

I also worry about my future. Will I sell the memoir? Should I write a picture book instead? Or should I just get in my car and keep driving until I find a new life? Can’t do the latter, because I would miss my family too much. I have to keep reminding myself that planning a new future is not the right thing to do during the first year after losing someone. But I am impatient by nature. I want to know what I will be doing over the next few years.

On this spring day, I’ve decided to take a page from my very own playbook. I am going to stop working on the memoir for the afternoon, tie up my boots, get out and do what has helped me from the very beginning of this journey. I am going for a hike. I must continue putting one foot in front of the other. Instead of second guessing myself and wishing I could escape this loneliness and uncertainty, today I am going outside to look for signs of spring — because in that there is always hope!

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OUR JOURNEY – to the wind….

Scattering ashes in Southern California

Last week I was in Santa Barbara. Calif., visiting my best friend Jeanne. We have been the best
of friends since seventh grade. I happened to see her in the hall on one of the first days of school and figured she was going to be popular so I asked if she wanted to have a sleepover. She said, “Sure,” and we have been joined at the hip ever since. We even attended the same art school.

This was a perfect trip in many ways. We hiked, played golf (me, poorly), went to the pool, talked nonstop and visited museums and art galleries. I was excited that my favorite illustrator David Wiesner had a show up at the SB Art Museum. Timing is everything.

Another bit of timing worked out for this trip as well. I received my husband Barry’s ashes right before I left for this trip. Barry loved Southern California. He always wanted to move there, but the timing was never right with work and our children. So we began vacationing there as much as possible. California was our first big trip after we married. It was then that I learned how much Barry loved to bake in the hot California sunshine. He would lay out in the sun until his Irish skin was burnt to a crisp and he was beet red. I always tried to get him to sit in the shade because I was sure he would die of skin cancer. But sadly, it was FTD that killed him. The last three years of his life were spent indoors, never feeling the sunshine he loved so much.

Now with Barry’s ashes in my possession, I asked my friend Jeanne if she would mind going to Dana Point, Calif., to scatter some of them. It is about a three-hour drive from Santa Barbara and Jeanne agreed to the plan. I felt Barry would like being there, plus his sister lives nearby so she would have a place to visit him. I also called my old pal Diane from Bloomington, Minn., who now lives in California, to join us. Barry’s sister Cathy and her husband Dave were also free that day. So it was settled and Jeanne and I headed south. We checked into the same resort where Barry, I and the kids used to stay. He loved it there and was thrilled to be able to bring us all there on vacation many times.

I had been quite timid about seeing, handling and scattering Barry’s ashes. I had been conflicted about letting them go, but now I would not be alone. The night before we scattered the ashes, I met Cathy and Dave for dinner. She had made a reservation at a restaurant at the harbor in Dana Point. I arrived early so I asked if there was a reservation for McCool (Cathy had kept her maiden name). The hostess said, “Yes I have a McCool reservation. Is it John?” I was speechless because Barry’s actual first name is John. I wondered if Cathy had made it in his name for some reason. I asked the hostess if there was another McCool party dining that night, but she said no and went about her business. When Cathy arrived, she noted that she had only given the name McCool. I never asked the hostess why she said John — I didn’t want to know. I figured that Barry just really wanted to join us that evening.

The next day was perfect, sunny and warm. Barry would have loved it. We scattered the ashes in three places. First, high above the ocean at a tiny gazebo where Barry walked his sister down the aisle at her wedding. We played music and shared memories. Slowly, it became easier to let him go. The other two places for scattering were in the ocean. The tide was down so we could walk out into the water. I knew eventually that the tide would come in and off Barry would go. Later after lunch, everyone went their separate ways. I decided to lay by the pool and roast just like Barry had loved to do. I got up early the next morning, returned to all three places and said my goodbyes once again.

It feels good to know that I did the right thing in leaving some of the ashes there. Barry is forever in sunny California, a place he always wanted to be. The timing was finally right.

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MY JOURNEY – To the wind

Ashes update

I am writing this up in Grand Marais. I had planned to snowshoe out to where I wanted to scatter some of Barry’s ashes along one of my favorite mushroom-hunting trails. But I got the flu and couldn’t hike when I arrived. Now several days later, I am about to leave for home and rain has left the trail muddy and soft, basically impassible. I suppose I could try to hike in, but the day is grey and gloomy. It just doesn’t feel right to leave him out there on a less than glorious day. Oddly it feels good to have his ashes sitting safely beside me as I work at my table. Another happy hour with him won’t hurt. After everything, I wonder if I will even be able to scatter the ashes at all. I thought this would be easy, but it’s not.

Barry shared the ride back home with me, sitting in the front seat beside a Culver’s Butter Burger and fries Tomorrow I leave for California to visit my best friend and scatter some of Barry’s ashes in the ocean. I hope I can do it. Maybe it will be easier after one more happy hour with him tonight.

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