Putting One Foot in Front of the Other

art blog 1 My name is Nancy Carlson. I am the author and illustrator of 64 picture books.

After graduating from The Minneapolis College of Art And Design in 1976, I fell into illustrating pretty quickly because I needed a way to make a living. I started out with freelance magazine jobs, which led to advertising and design work. Then I learned about a Minneapolis publisher called Lerner. I showed them my work and soon was illustrating my first book.

I married Barry McCool about the same time that book came out. Barry had a small design firm, which grew to 20 employees. We had three children and settled into a pretty wonderful life! In 1996, Barry sold his design firm, and we set up a new company called McCool Unlimited to help me with book contracts and licensing my artwork. I let Barry handle all our money and manage my business. Over the years, I never asked how we were doing and never worried. I trusted Barry would handle it all as he had so far!

Fast-forward to November 2012. It was a cold, early-winter afternoon. Barry, our son Michael and I were sitting in a neurological clinic hearing these words: I am sorry, but Barry has frontotemporal dementia (FTD). What is that? Frontal what?

The doctor explained there is no cure and told us what to expect in the future — but I wasnt really listening. I was actually happy to finally know what was making my husband of 30 years act like a totally different person. I was also worrying about how to pay for this testing. We had no health insurance.

Our first moment of grace happened at the clinic that day. Aware of our financial situation, the doctor said, I am going to pretend this meeting never happened. Thank you!

Since then, I have learned about this horrible thing that has laid claim to Barry’s brain. FTD affects the executive decision-making part of the brain. The frontal lobe is responsible for problem solving, personality and common sense. The temporal lobe covers memory, language comprehension and hearing. It is common for individuals with FTD to have extreme changes in behavior and personality, including loss of empathy and interpersonal skills, inappropriate actions, mood swings and some obsessions. They become self-absorbed and eat the same foods over and over. The latter explains my sticky kitchen floor — because Barry eats waffles topped with tons of syrup all morning long.

Because of FTD, our financial situation collapsed. Barry had been making bad decisions for years, but I never questioned or checked on things. I was busy doing my work. Dumb. Dumb. Dumb. Does anyone have a time machine so I could change a few things?

Along this journey, we worked as caretakers, cleaning apartments, and shoveling/salting 75 walkways. We sold our favorite pieces of art and furniture. We moved four times, and I moved my studio five times. We lost friends to whom we owe money borrowed by Barry. We lost friends who don’t want to hang around now that the going is tough. At one point, I felt my family might fall apart.

But also along the way, I have seen grace from friends and strangers. And incredible love. I have seen that prayers sometimes really work!

So why am I writing this blog, and why is it called “Putting One Foot in Front of the Other?”

One day this spring, I reached the lowest point of this journey so far. Barry was getting up at 3:00 in the morning and eating waffles. FTD makes sleeping tough, and, as I said, they become obsessed with food. Last winter was cold and snowy here in Minnesota. Now spring was cold and snowy. I worked on trying to get disability and Medicaid benefits for Barry, and file for his bankruptcy. Meanwhile, I worked hard to get my own work done and keep a roof over our heads. I was exhausted and angry with Barry.

That same day, I received an email from a friend we owe money to. He, his wife and two other couples were all-together in Arizona and wanted to know what was going on. I get it! They want the money Barry borrowed from them without telling me. I found out about that last summer before his diagnosis. I would want the money back, too. I imagined them all having a beer and talking about what an idiot I am. Maybe they thought Barry is faking it. I don’t know; it’s just that we used to be a part of that group, golfing and traveling to Arizona. Now I just hope to have rent money.

I wanted my old life back — to be part of the gang having a beer after golf. I felt bad and hopeless. All I could think about was all we had lost. So I asked Barry if I had a life insurance policy. He said, “You won’t get much — it won’t be worth it.” Note to self: You can’t be dramatic with an FTD person, because they don’t have feelings like we do.

Barry can’t offer any comfort or advice. I thought for a brief moment that if I had life insurance and I were dead, it might be enough to pay everyone back! But I knew if I once had a policy, it was long gone by now. I also didn’t want to leave this mess to my kids. It was a low, low day for me. For Barry, too, because I yelled at him all day!

All through this hell, you know what? I still love life and wonder what’s next. Maybe it will be something really awesome. Maybe I’ll find a time machine. I really don’t want to miss anything quite yet! I want to get out of debt. And when I do, I am getting a tattoo that says — I DID IT!!

The next morning after this low, low day, I drew a doodle of me putting one foot in front of the other. Now it’s my new motto as I look forward to celebrating my 60 October 2013.

In that spirit, I am going to hike 60 trails this year by putting one foot in front of the other. I plan to blog about each trail hiked and share experiences on living with FTD in our lives. I will also include doodles and art from each hike. Some hikes I will post ahead so friends can join me! In the meantime, I hope people who have loved ones with FTD will share their thoughts and feelings as they also try to put one foot in front of the other each day!

Let’s just see what this year brings. COME ON. LET’S GO FOR A HIKE!!

For more information on FTD check out www.ftd-picks.org
For more information on me go to www.nancycarlson.com

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47 comments on “Putting One Foot in Front of the Other
  1. Susan Backlund-Dixon says:

    Nancy, you have been a hero of mine ever since you wrote and illustrated that wonderful book “I Like Me” – I loved your positive message to young girls and old girls too! Thelma is a dear friend and I happened upon your blog via her facebook page – your positive outlook and spirit shines through as you put one foot in front of another. I can only imagine how difficult this past year has been and I hope the hikes are offering you inner strength as the year progresses.

  2. Marie says:

    First, I’d like to say that I’m a gigantic fan of yours! I teach first grade in a small, rural Wisconsin rown and of course have a “NancyCarlson” book bin in my classroom library! Not sure how or why I received the email inviting me to this blog but I’m glad I checked it out. I will certainly be following your 60 trail adventure. Sounds very exciting. I’m sure your story will bring not only inspiration to others to keep putting one foot in front of the other during life’s trials and tribulations, but I think you will also help educate many about that terrible disease FTD. I had never heard of it. Good luck Mrs. Carlson. If you’re ever rolling through Wisconsin I’d love to have a real celebrity reader visit my classroom/ school.

  3. Nancy, I am SO glad you are blogging about your efforts. You had given me just a peek at what you were dealing with when we did an event together last year, but I had no idea the extent things had reached. My heart is with you and I hope you will lean on me any time you need a little help. Hang in there – things are going to get better … right around the next corner. You’re such an amazingly strong woman.

  4. Susan Stan says:

    Nancy, I had no idea. I will hike with you.

  5. Wendy says:

    Hi Nancy,
    My daughter and I are big fans of your books (“I Like Me” is her favorite – what a great message for kids!). I wish you well on your journey and look forward to following along.

  6. Averill Kronick says:

    OMG! I am so very sorry to hear of your troubles, what a rotten deal to have on your back.

    Of course I knew nothing about any of this and in fact thought that you and Berry were starting a new company, or that’s what I understood.

    I am in shock.

    I hope and pray that you find your way out of this terrible situation.

    Give Berry a big hug for me and all my love to your both.

    Sincerely,

    Averill

  7. Robin Koontz says:

    I’ve been a fan of yours for many years. It’s amazing how people assume that children’s book illustrators and authors live happy, sunny, carefree lives because their work is so fun! Yah, right. Barry’s diagnosis is not for wimps and I’m so glad to hear that you are dealing with it as well as you are! Also glad you allow yourself to get angry. Happy hiking! — from a fellow illustrator

  8. Betty Tisel says:

    Hi Nancy, thank you for this! I wish you and your family the very, very best. I would like to follow your blog. Is there a way to sign up to receive a notification when you post? (p.s. we read “I Like Me” to our kids 1,000,000 times. LOVE IT!)

  9. Sharon Levin says:

    Dear Ms. Carlson,

    This link was posted on the Child Lit listserve today. As a longtime fan, I clicked on it right away. I am so, so sorry to hear what you and your family are going through. Your books have brought so much joy and understanding to others, I hope you can feel the virtual support from all your readers. Please let the greater children’s literature community know what we can do to help.

    With best regards,

    Sharon Levin

  10. Jacki says:

    Oh! Nancy, I’m so sorry you’re going through this. And I’m so inspired by your resilience! I wish I could hike with you. Maybe there will be a way to hike at the same time, in a different place physically but with you in spirit. You are awesome!!

  11. Karen says:

    Nancy,
    I am an elementary school librarian. I have been sharing your books with my kids for many many years. Harriet’s Halloween Candy and the one about her secret admirer for Valentine’s day are two of our most favorites. I am so sorry to read if your troubles. I am looking forward to reading your blog. Please know there are many children in Glassboro New Jersey who love your stories. I hope that helps a tiny bit!!

  12. pj lyons says:

    Hello Nancy,

    Yesterday Andrew Karre had a link on his FB to your blog. My heart and prayers go out to you. I know there are many folks in the kid’s book community that would love to help in some concrete way. What can we do?

  13. Jane says:

    Nancy, I am so sorry to hear of your troubles. It is interesting how sadness, grief and joy seem to work together. You have given so many people joy through your books and art and I sincerely hope that you feel our energy and positive thoughts.

    Jane

  14. Tim Gaetz says:

    Nancy,
    terrible thing you and your family have had to endure but I love your determination to forge ahead and be positive; you are a great role model for those facing adveristy.
    Tim

  15. Melody Favish says:

    Hello Nancy,
    I live in Norway. The daughter of a friend in MN sent this article to me. I am going through exactly the same thing as you – my husband was recently diagnosed with FTD – but before this happened, he lost everything we have. Like you, I relied on him. He was very successful before, and the list of bad deals is long, but I trusted his judgment, not knowing that he had lost the ability to make decisions and everything else that goes with FTD. Our home is up for forced sale and the apartment where our daughter lives has been sold for 60% of appraised value (she has to be out on Monday). When our house sells (and it won’t bring in enough to cover the debts), I don’t know where we will live. I am a free-lance translator, but I haven’t gotten a single book to translate this year. Like you, I am selling our possessions. I work as an extra on TV shows and I walk dogs. I’m fine with that, and I look better than ever (having lost a lot of weight), but it’s not a living. I am 66 and this is not the way I expected to spend my senior years. Thanks for letting me know that I am not alone in all this.

    • Melody
      I am so sorry you are going through this too.Please keep in touch! We will get through this!
      Who knows where this jounery will take you. If your husband easy to live with? Mine was getting pretty scary but medication has helped.
      You are not alone! By the way I traveled in Norway in the late 70’s and had a blast. I was in Lillihammer most of the time.
      Thanks for the email! NC

  16. Marti says:

    Nancy,
    My Dad is in somewhere around his tenth year of behavioral variant FTD, many of the years undiagnosed. He is a retired school superintendent and my Mom a retired teacher/librarian (she is a fan of yours!). He was not an easy person for my Mom to live with either, first his facial expressions started changing, then he would do odd repetitive behaviors like marching instead of walking and singing with the TV (he does not sing). He brought food, furniture, clothes, bikes, and piles of anything home from dumpsters and stolen from who knows where. Sometimes from the neighbors yard. The police brought him home once and my Mom was perfectly horrified. He would have been too if he didn’t have this insidious disease. He lost a LOT of money from their investments, they were asked to leave their AZ retirement community because of his behavior. I can’t blame them. He sometimes forgot to put clothes on after he got out of the pool. He took nearly all the books from the community center library while my Mom would try to return them as soon as he wasn’t looking. Other times he wouldn’t change out of his clothes for days, not wanting to shave or shower. and the eating. non-stop. He would be gone for hours, sometimes in the middle of the night saying he was out for a walk, what we now know as ‘wandering’. Forget the medical bracelet, he wouldn’t wear it. and the GPS phone, wouldn’t carry it. Home health nurse? Fired her. He was often obstinate and hasn’t once believed he has a disease. A disease you can’t comprehend you have, a brilliant side effect. He has done some very, very funny things and we have laughed through tears more than dozens of times over the course of it. You have to laugh, right? People have looked at us like we’re crazy, no one has heard of this disease and it’s nearly impossible to explain it’s NOT ALZHEIMERS and YES, he remembers us and knows what day it is. He’s extremely intelligent and stays up on the world’s affairs, most people hardly believe he is sick at all until you spend a good deal of time with him. For his own safety and for my Mom’s health (so she could continue in good health that is) we finally decided he needed to move into a nursing home where he lives in a memory care unit (though again his memory is rock solid) but he needs to be in a locked facility. You could say he doesn’t love it, but with this disease as I’m sure you are aware it’s a series of bad decision or worse decision. Life has gone on and almost looks normal again, living in the home has curbed nearly all of his ‘ticks’ and the high stress of daily emergencies is over. I’ve gone on too long, but sometimes knowing that there are people out there who more than understand can help lift a bad day. Keep on putting one foot in front of the other! and don’t forget to ask for help. God Bless.

  17. I have been a fan for many years. I am a bigger fan today. Thanks so much for sharing your story. I am so very sorry, but also so glad to be invited on your journey. I hope you will find tremendous love and support as your invite others to help carry even the tiniest bit of your burden! You have brought so much sunshine into the lives of countless children and adults. Time for the universe to give some back. Best to you all in your difficulties. Your grace and courage in this post already show you have the strength to take on whatever comes. Okay, karma…now do your work. She’s earned it.

  18. Sarah Sanfilippo says:

    Nancy, Through your children’s books (at our house “I Like Me” was a favorite)and in your blog, you inspire others to see the good – in themselves and in others. With what you have been going through, your determination and positive attitude are nothing short of amazing. Thank you for sharing your story with us.

  19. Ann Hopkins says:

    Dear Nancy,

    I was in a summer art class with you during Junior High and was blown away by your skill and creativity. (I happened to be the least talented/creative girl in the class, prodded to take the class by my mom, hoping I would “develop” some artistic ability).

    Over the years, I saw you name and picture in the paper and magazines and thought how awesome it was that you were so very successful doing something you absolutely love. It never seemed possible that your world could be anything but a brightly colored, whimsical picture. I am once again blown away. My heart aches for you and your family.

    I guess it’s one thing to lose all of your financial assets and material goods, but to lose the support of friends because of your situation makes me more than a little sick. It’s such a shame that those friends don’t see the opportunity to rally around one of their own when they need it the most. They would get more out of this gesture than anyone. Their loss. They are forgetting the saying,”There, but for the grace of God, go I.”

    I am now blown away by your bravery. You are an inspiration on so many levels. I hope all of the support and love and prayers you receive from strangers can begin to make up for the hurt caused by your friends.

    You are filled with light and hope and love, which will sustain you and yours. ALL WILL BE WELL.

  20. Pam Koehler says:

    Nancy,
    I am a children’s librarian in Indiana and just read your blog post. One of my friends from years ago just went through all of what you are going through. Hearing her heartache makes me understand how awful it is for the care givers of this terrible disease. Chris was a chaired professor at SMU in Dallas. He died recently. They actually flew the flags on campus at half staff the day of his funeral. Although I had not seen him in years, I miss him. I’m sure his wife, Gayle, would be glad to write to you. They ended up putting Chris in a nursing home the last year or so. Their two children were concerned for her safety after some angry outbursts from Chris. She is an inspiration to others. She was so strong – spent almost every day with him and would write how she saw the twinkle in his eye every once in a while. Please let me know if you would like to be put in touch with her. I know how easy it is to say – one day at a time – but how hard it is to live that way. You and your family will be in my prayers during this hard time.
    Pam Koehler
    West Lafayette Public Library
    pamrkoehler@gmail.com
    or
    pkoehler@wlaf.lilb.in.us

  21. Barbara Katz says:

    My heart goes out to you. How many of us women shy away from finances and would gladly let someone else handle them. I’m sorry about your husband, too. You have several losses at once.

    I think you could tell your friends who you owe money to and ask for forgiveness. Perhaps you could also sell some of your children’s art? If other authors/illustrators know about this, I’ll bet some of them would think of something creative to help you. Perhaps you could tell some of the movers/shakers in the field. Anyone who writes “I Like Me” has the inner strength to go through this and see the positives, although that may take a while. Carry on! You and I are close to the same age, but we’re still vital and kicking!

  22. Kari Henry says:

    Hi Nancy. Hi Melody. Melody Favish is a dear friend of mine, as is her husband. I grew up with her husband in Norway until the age of 6 when my family moved to America. His parents and my parents were best friends. We spent time together last summer and it was a wonderful visit. I am so glad I had a chance to visit with Melody and her husband, her daughter and twin granddaughters, before it became so bad. I am heartbroken at what this disease does, but I certainly would not give up on my friends like those you mentioned. How sad.
    A brighter future is in my hopes and prayers, and that, in this day and age, there will be medications that truly help, or a cure will be found. These men are truly lucky to have such strong families, Nancy, Melody, Marti, behind them. I am so sorry for the pain, sense of betrayal, loss of trust, and all the other feelings of loss. It is OKAY to be angry at this disease. Kari

  23. Nadine P says:

    Thank you for sharing Nancy. “How About a Hug?”

  24. Maryanne says:

    My dear, grace-filled Nancy–
    I’m so glad we spent time together today and I went right to your blog as soon as I got home tonight. Now, I’ve just read all the comments and what struck me hardest, and I’ll just say it here for everyone to read, is this: We, but you especially, have lost Barry, our friend, our buddy; your husband, friend, lover, dad to your three great kids, life-partner. He’s not physically gone, but still, he’s not Barry. This is the greatest loss. Yes, this disease caused him to mismanage and lose the money, the “friends”, and life as you knew it. But, if that wasn’t enough, FTD has robbed you of your beloved Barry. Our beloved Barry.

    Now about your JOY…when our kids were very young, they attended St Mary of the Lake in White Bear. I remember walking into the school with Alissa on her first day of kindergarten, and I saw this colorful poster a teacher had painted. It read: J Jesus
    O Others
    Y Yourself
    You have always, in your own way, “illustrated” that very example of JOY in the way you live your life. Keep putting one foot in front of the other. And have HOPE, too! Because, while many people read your blog and are glad to know they’re not alone in having to cope with FTD in a person they also love, there are many others, like me, whose lives have intersected with yours and who have never laughed so hard nor felt so deeply the kind of JOY your friendship brings. I think it’s really Eternal Joy. And we’ll carry it to Heaven with us. The money, those “friends”, the life-as-we-knew-it won’t last and doesn’t bring real JOY anyway.

    Thanks for being such a brave gal. For doing the hard work. For writing your memories down. For making me laugh. For comforting ME, when it should be me comforting you.

    I love you and Barry; and, Mark and I are going to keep praying for you and we won’t abandon you.

  25. Maryanne says:

    nancy, don’t post this comment, just want you to fix the way the post came out…J Jesus shouldn’t be on that line. It should read:
    J Jesus
    O Others
    Y Yourself
    so joy is written vertically. looks stupid otherwise. p.s. I mean every word of it! love, love, love you.

  26. Almost six years ago my husband died of Alzheimer’s so I know something of what has happened to you. And the name of your blog touched me so much because when Paul was really very ill he talked about all he could do was keep putting one foot in front of the other. I don’t know enough about your husband’s illness to know how it progresses, but I remember how terrified I was that we would lose everything. That did not happen because of a series of events which would be long to explain here, but I remember the fear. He died when we were both 62. I will pray for you. I love your work very much and look at it on facebook every day. You are so strong and courageous. I think you sixty hikes idea is brilliant. Be well! I do a lot of Buddhist style meditation and it helps me a lot.

  27. Carter Wolfgang says:

    Dear Nancy,

    You don’t know me, but I worked with your sister, Susan, for many years at Lieberman’s. She suggested that I read your blog and now that I have, I realize why she did.

    My wife of 30 years just passed away about 10 days ago after battling breast cancer for the last 4 years and before that 24 years ago.

    I think that what you are doing to cope with the hiking is a very great way to do it. I am inspired by your great attitude, but not surprised knowing your sister.

    I wouldn’t have asked this before June 12 of this year when I quit smoking, but do you accept guest hikers on your walks? I would be honored.

    Sincerely, Carter

    • Carter
      So sorry about your wife..I hope my blog can help in a small way! I will have hikes where I invite people to join me. I think that sounds like fun. Glad you quit smoking. I know that is a tough one I quite in my 20’s thank God!
      Take care and keep in touch!
      Nancy

  28. Jeannie Granaas says:

    Dearest Nancy,
    Every morning your Facebook page is the first I see — now I know why. Your talent is beyond anything I’ve seen and your courage and sharing is nothing I’ve read before — you, indeed are not “hogging your journey” — you are giving others a gift of honesty that will be so helpful for so many, including me…

    Know that I am here and I believe I probably live very close to you — anything you need, please, email me — perhaps just another heart just to listen to the “little” things that drive us bats — that we need a break from…

    You will ever be in my prayers — prayers that I hope will surround you with a quilt of compassion and peace. I so love the stories of your hikes, they inspire me and I believe they are your meditation as I can feel it in your heartfelt words…Jeannie xxx

  29. Near me, in Wooster, Ohio, lives an artist I admire, Susan Shie. A figure often in her “outsider art” is St. Quilta the Comforter. I think she is a great saint to whom to pray! And her name always makes me smile and smiling is a great help in this funny world.

  30. Jack Pearson says:

    Dear Nancy,
    What courage you have! I so admire and respect your decision to wring all the life and meaning you can out of this admittedly problematic situation. One who is connected to love is never far from help and support and you are deeply connected, Nancy Carlson, here, there and around the world. And outside of it for all we know. I turn 60 in December so maybe I’ll keep watch for the hikes and might show up to tromp with you.

  31. Nancy Pearson says:

    Dear Nancy, You don’t know me, but you are acquainted with my family, Peter, Kari and Jack. In your book, “I Like Me” you conveyed to our then 6 yr. old daughter that she was OK just the way she was. Those sentiments continue to speak to all the artists in our household. Thank you for being open about your life story, especially this painful chapter. Twenty years ago I was house bound with MS, and expected to be in a wheel chair by now. As I turn 60 this fall, I can walk up to 4 miles. I would love to celebrate with you by putting one foot in front of the other on one of your posted open hikes. Sending you strength, love and hope.

    Nancy

    • Hey Nancy
      Thanks for the email! It has been so fun to get to know your kids! I know Jack from the old days! Your email means a lot to me. I am happy you are feeling so well. I really hope to hike with you and Jack one of these days before winter!
      You have raised some pretty awesome kids by the way!
      NC

      • Nancy Pearson says:

        Ok then, I missed any posted hikes this fall, but…it’s time to fold another “Purple Tree Trunk” into the family. Let’s talk about you coming over some time when you can manage a break from all those responsibilities. I’ll check on my end and stay in touch. Kari said you dressed like her for Halloween, bright colors to boost the soul!!!! Our family band The OtterTunes, performed for the first time at the Wild Rumpus for Jack’s “Googolplex” CD release, exhilarating for this shy person. Let’s share the creative energy and be well!!!!

  32. Lisa Ventura Olson says:

    Oh Nancy, I am so sorry! I had no idea…..you & your family will be in my prayers from now on! Maybe you remember but I went to Annunciation grade school with your sis-in-law Cathy so we all adored & worshipped Barry! I’m sure he wouldn’t remember me…..
    I’ve had some health challenges these past 3 years & know how much precious support my family gave me & how I couldn’t appreciate them for so long but I am blessed to still be recovering from my anoxic brain injury. I am so sad that your Barry can’t return to you but I hope you find peace & joy in the small glimpses of your beloved Barry. Sending love & prayers

  33. Dan Kinsella says:

    Hello Nancy,

    It has been awhile since I have had the pleasure of seeing you and Barry. Those days of BAA sports, talking about running with Barry and Ridgeview were very good days. My wife Karen forwarded me your blog. Thank you for sharing your feelings in such an open way. It is through each of us being vulnerable that we strip away the pretense and connect.
    Karen and I want you to know that we pray that you feel the loving arms of our Lord around your family.
    Like you have so many times before, your words touched me. I will follow your blog, and I know that with each step will come a path more rewarding for you.

    Dan and Karen

  34. Jean Mazzoleni says:

    Nancy,
    I stumbled upon your blog postings on Twitter. I feel terrible that I have been so out of touch with you and had no idea of the tough road you have been on.
    How can I support you outside of following your writings and joining you on a hike ?
    You have always been there to help others with your generosity of talent & time.
    Unfortunately some people easily forget.
    Love to you & your family
    Jean

  35. Gina L. says:

    Nancy,

    I’m so sorry to hear about the troubles you and your wonderful family have gone through and will continue to face. I’ve always admired your creativity, artistic ability, and generosity. I hope thinks get brighter for you and your family. I would love to hike with you!

    Love to you all,
    Gina

    • Oh thank you Gina! It is a tough time..but hopefully things will improve. Maybe you and your mom can come on a hike with me.
      Hey Mike hiked for my birthday!!!That was a big deal for me since he doesn’t get outside much!!!
      Love your blog.. and thank you again for the email!
      Nc

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