Health and Creativity: Part 1 – a story, a free cookbook and a free quilt pattern

cooking, design, experiences, free patterns, just a thought, quilting

On Facebook I asked which of four topics readers were most interested in having me write about. I was stunned that “Health and Creativity” was the top choice. In the past decade, these two themes have been at the forefront of my mind every day. I have not shared this story before publicly because Bill and I weren’t sure when or how it would end. We are no longer worried about that and I’m sharing this because I hope it will be helpful to anyone else going through any kind of health issue. This is story spans a decade and its long topic so I’m going to break it into two posts.

At the end of this post is a Healthy Eating cookbook that we’ve put together and a free quilt pattern I posted two years ago. I’m posting both because our family will be riding 190 miles over the next three days to raise money for research for respiratory diseases. If you download either of these I’m asking that you make a $5 contribution to the Respiratory Health Association of Metropolitan Chicago as part of my fundraising effort for the ride.

Part 1 – Health

“There’s nothing more we can do for you so we’re sending you home.” These were the words the doctor in the ICU said to me the week before I started this blog in 2009. Although I had been a lifelong asthmatic, my asthma had been controlled with medications until 2000. Around that time I began having 8-10 or so serious respiratory infections annually that resulted in me spending about half of every month in bed pumped up on steroids and antibiotics unable to breathe. In late 2008/early 2009 I ended up in the ICU because I was no longer responding to medications and was going downhill quickly.

At one of Chicago’s finest teaching hospitals they ran every test and hypothesized that I had the early stages of pulmonary fibrosis, a deadly and aggressive disease that can take a life in a couple of years. They couldn’t test for the illness until I was slowly weaned off of the massive doses of steroids, which would take three months. My breathing was so labored that I couldn’t speak in sentences and could only whisper. “You need to understand that you’re not going to recover from this. You won’t be able to ride your bike more than a few miles and life is going to change for you. You need to prepare yourself and your family,” the doctor advised me.

We were in the process of negotiating the contract with C&T for Quilts Made Modern and had just launched a fabric line with RJR. Our daughter was 8. The timing was really, really bad and the prognosis even worse.

I cried for a few hours, talked it through with Bill and made my plan, because I ALWAYS have a plan. I was going to go home, develop a plan for help for Bill with our daughter and our business. Then I was going to call Susanne Woods, who was then the acquisitions editor at C&T, and explain the situation. The most important thing I was going to do, however, was to not get ahead of myself and to focus on being calm. I have very strong faith and knew that this was definitively out of my control. I had no choice. I had to surrender this outcome. Calm was important because people would be taking their cues from me. If I was calm and upbeat, our daughter would be less frightened and Bill would be reassured. I remember telling him something along the lines of “if it’s not a terminal or degenerative illness and I spend three month anxious that it is then I’ve made myself and everyone around me miserable over nothing. If it is bad news, we’ll deal with it then. The one thing I know for sure is that thinking positively and visualizing a good outcome will be better for my health than being anxious that I’m going to die.” I remember emailing my favorite fitness instructor at the gym saying what a comfort it was to me to know that she’d help me get back to the best level of fitness I could achieve once I was ready. I visualized going back to kickboxing and weight training during breathing treatments every 3 hrs.

I came home and Bill and Sophie rearranged the guest room into “the recovery room.” I couldn’t manage the stairs to our room and the drugs were so strong that I was only able to sleep 2 hours every 24 hrs — for 3 months. I had Bill bring in an Ikea storage box with little drawers. In one I asked our daughter to put her hairbrush and ponytail holders because I wanted to be able to do her hair before school from bed. In the other drawers I had them put things for sketching. Because talking was hard we made one drawer “the secret mailbox” where I would leave notes for our daughter and she would leave notes for me. C&T was beyond supportive, sending me flowers and saying, “Whenever you’re ready, let us know.” I was beyond humbled by their support. We had no track record with them. They could have easily walked away. My heroic quilting group rallied and sent me an iCalendar file of all of the days that people were available to help Bill cut fabric or take Sophie to choir rehearsal. Church friends brought over food for months and prayed and prayed and prayed for our family. Bill told me that a large group of people at our church gathered around him during coffee hour, placed their hands on his shoulders and head and prayed for guidance and comfort for our family. I was truly humbled by the love and support I received during that time. It healed a lot of wounds. There were so many bouquets of flowers and lovely cards trickled in as word got out in our community. I remember being stunned that even our contractor send a huge bouquet of flowers.

I decided to start this blog because even if I couldn’t breathe well and couldn’t talk, I could write. In my sleepless nights I began working on the outline for Quilts Made Modern and designing some of the quilts that would eventually be in the book. I had to do something as Bill managed two full-time jobs and a child with grace.

Three months later the tests were inconclusive but they were able to rule out many terminal illnesses, including pulmonary fibrosis. I began the slow road back to being able to do simple things like walking down the steps to meet our daughter at the bus stop. I returned to the gym starting with yoga and the old ladies in the aqua-fit class, working my way back to kickboxing, spinning and weights. I needed to do our annual Cowalunga ride to raise money for lung disease but also to have a goal for my recovery. I also wanted to model something for my daughter. I wanted her to see that you can come back from things and work hard to regain strength. Sophie was too young to ride so she and Bill cheered me on and met me at each rest stop. At one point about 50 miles into the ride I spotted some heart-shaped balloons and a sign attached to a speed limit sign. As I approached I saw “Go Weeks!” written on it in Bill’s handwriting. I rode most of the 65 miles by myself and shed more than a few tears along the way. It was a quietly triumphant moment that I’ll never forget. None of the hundreds of people riding with me had any idea what a huge achievement it was for me to even contemplate doing this ride. But I knew and Bill and Sophie knew.

The infections continued until 2010 when I decided to fly to National Jewish, the #1 hospital in the US for respiratory illnesses. Bill and I were working on Transparency Quilts and I actually carried my Bernina on the plane and made quilts in the hotel at night, when I wasn’t too tired. I underwent testing for a week and they determined that I had three, count ‘em three, undiagnosed illnesses that had been missed in Chicago, two of which would require major abdominal surgery to fix. On November 16, 2010 I had two surgeries that vastly improved my health. I couldn’t eat for 6 weeks and still only eat about half the portion size of our 11-year-old daughter. The surgeries changed my anatomy and I can no longer eat full portions, drink alcohol or eat spicy food. I still get infections and require steroids several times a year but it’s under control and manageable. My voice is permanently hoarse as a side effect of a decade of illness and I have to have annual cancer screenings under general anesthesia.

During my 40s I spent 50% of every month sick in bed due to health problems. It stinks and it’s not fair. However, I spent the time I wasn’t sick taking good care of myself and trying to do the best work I could under the circumstances. Now that I feel as though the health crises are for the most part behind me, I’m working like a maniac to make up for so many lost years. I still have to work out 5-6 days a week to keep myself strong and I still get sick a few times a year but I’ve got a huge amount of pent-up energy and ideas.

Make no mistake, the emotions of all of this make their way to the surface at unexpected times and in unexpected ways. After an especially successful Spring Market in Kansas City this year I got weepy driving home. I called Bill from a rest stop and said, “I just realized that I think it’s over. That long, long nightmare…it’s over. I’ll always have a chronic illness but the super scary stuff – I think it’s over. I’m just so, so relieved.”

Dealing with health problems is 50% medical issues and 50% head issues in my case. Without the surgeries, I would still be sick and most likely my life would have been cut short. However, had I not been motivated to be a compliant patient, exercise, eat well, continue to challenge myself and continue to make time and a space in my mind for creativity, I don’t think I would have recovered to the extent that I have.

In my next post I will discuss how I managed to stay creative and productive given my decade of health challenges.

I discussed above our annual Cowalunga ride to raise money for lung disease. This year’s ride is August 4-6. To raise money for the ride, Bill has put together a charming little cookbook of our family’s favorite healthy recipes. If you would like to download a copy, I ask that you consider making a $5 donation to my fundraising page for Cowalunga and the Respiratory Health Association of Metropolitan Chicago. We hope to ride 190 miles over 3 days as a family. If the 100+ degree temps continue or we encounter thunderstorms we may be forced to skip some of the route but we will ride every mile we possibly can. I will also be riding in memory of both of Bill’s parents who died of smoking-related illness and his aunt Connie who lost her 17-year battle with emphysema just a few weeks ago. Any donation of any size would be greatly appreciated. As I have in the past, I would be honored to ride in memory of any of your loved ones who struggle or have struggled with lung disease. Tell me your story and I’d be delighted to ride for them.


To sponsor me or make a donation to the Respiratory Health Association of Metropolitan Chicago click here.

The Seismic Shift at Quilt Market

design, just a thought, quilting

Our Split Decision quilt generated a lot of positive comments

My head is still spinning.

I made my first modern quilt in 1987 while living in Tokyo. I had never met a quilter in the US or Japan and was just kind of doing my own thing. In 1999 Bill and I decided to see if we could bring modern quilt design mainstream. Although we have designed over 100 fabrics and written 5 books, it always felt as though we were still on the fringes of the quilting world. “We don’t have customers who would buy this,” is a phrase we’ve heard for many, many years from shop owners.

Somehow it feels as though everything changed at Market in Kansas City. It was very interesting to talk with shop owners about their perception of what will sell now. Some already have a modern shopping clientele and were buying more aggressively. Others with more traditional shops came to our booth, looking confused and wanting help understanding “the whole modern thing.” “So what’s your definition of modern quilting?” they’d ask. Or “I don’t even know where to start” they’d say when trying to figure out what to buy to attract modern quilters. For us the feeling was two-fold. I really was excited to have an opportunity to explain to shop owners what we hear when we teach and lecture and what sells well for us. There was also the immense relief that maybe there’s some acceptance — or possibly even appreciation? — that we’re trying to offer a different way of thinking about and making quilts.

Quilt Market was grueling, leaving the hotel at 7:15 for breakfast meetings before Market opened and sometimes two post-Market events to attend before I was able to get back to the hotel. One day I ended up being unable to eat from 7:30am until 11pm. It was clear while in KC that the tides had changed and I was both excited and overwhelmed. Standing on a street corner in Kansas City on my way to a meeting I called Bill on my cell and said, “We’ve got to hire more help. Now.”

Marcia Derse setting up her booth

Had a nice chat at the KCMQG/St Louis MQG Meet Up with Angela Walters

I got back to Chicago on May 22 and I have been processing orders, signing contracts and answering phone calls and emails 12-15 hrs a day ever since (hence a blog post written at 11:45 on a Friday night). I haven’t touched a sewing machine. Certainly it’s a great problem to have but it’s so sudden after all of these years. I’ll tell you more details as I am able but we have a very exciting, if exhausting, year ahead.

The always fun combination of Gina Halliday and the Lizzie B ladies came by

I wish that reality TV could have chronicled our business over the past 13 years for young people just starting out their careers. It’s the opposite of the Cinderella reality shows where you go from being a waitress one day to the chart-topping Kelly Clarkson 6 weeks later. Year by year, trying hard to blaze a new trail. We found success in the design world (there was that one awesome week when we had quilts in Oprah’s magazine, TIME magazine and the cover of Country Living) but the quilting world was a much harder nut to crack. We dealt with lots and lots and lots of rejection and more than a little envy but realized in the end that it’s about running your own race. I remember someone asking me in 2004 when Amy Butler had just begun to take off, “What can you learn from Amy Butler that would help your business?” Ouch! I responded honestly, “That we’re not Amy Butler. That we don’t have her skill set. We have our own and we just have to keep trying to find an audience for it.” A trusted shop owner who has known us since 2003 recently said, “You were too early.” So true. Our work is just starting to get the audience we always worked for. I wish it had been faster but I’ll take it.

With David Butler aka Parson Grey

So this was the moment that I’ll always remember about Quilt Market. I wrote about this on Facebook but I know not all of you go there. So I’ll repeat it: Amy and David Butler stopped to admire some quilts in our booth. — I’ll pause while you gasp like I did. — I had met Amy in 2003 before she was a household name but everyone wants a piece of her now so I’ve tried not to “remember me?” her. I wasn’t sure what David would think of our Best of Both Worlds quilt made with his fabric but channeling my late mother-in-law (who said that you should always tell people when they’ve done something well) I thanked Amy and David for transforming the quilt world and for raising the bar for everyone at Market. It was a seriously frumpy show before they came along and showed people how to merchandize their work. She paved the way for a lot of us and I’ve always felt indebted to her for that.

Amy thanked me and then very graciously told me that she had always found our work inspiring. Tears welled up in my eyes. She told us about a speech that we wrote that she heard 7 years ago that has stuck with her because she thought it was poetic and beautiful. I couldn’t speak. I just thought,” I wish Bill were here to hear this. I don’t ever want to forget this moment.” Kinda like Michael Jordan telling you, “You got game.” That conversation will be creative Red Bull for me for the rest of my career. Now if I had only had my wits about me enough to take my picture with her before she had to return to her booth. But David stayed another moment and we got this shot with my quilt and his totally cool business card-beer coaster in my hand. Gosh I needed that.

Hoping for a meritocracy in the age of social media

design, just a thought

Back in the day when we started our business in 1999 there was a meritocracy of sorts in the world. For the most part people who did the best work got the best gigs. There are 3 things that changed all that: Amazon, Facebook and blogs. If you’ve written a book, the chances of you getting to write another book depend on the sales of your first one and the reviews on Amazon. Publishers will also check your blog and the number of followers/fans you have on Facebook. If you want to design a fabric line, some fabric manufacturers will look at the traffic on your blog and your Facebook stats as well as your design ideas. Like it or not the digital age has turned us, in a way, into a social media-ocracy. If you’re good at asking people to “like” you on Facebook or you’re good at sending your Facebook friends to your blog, you will get better gigs and people will pay more attention to you. Ditto all of this for Twitter. There’s a reason for all of this. Fabric companies, publishers and the like want people to work for them who have a built-in PR machine such as a popular blog or a highly “liked” Facebook page. The idea is that the author or the designer has “built-in” marketing channels and will sell more than someone with fewer visible followers.

So if there’s a blog you follow, click on over to Facebook and like the author. The same thing goes for fabric designers or pattern designers. If there’s a book you love, write a detailed review on Amazon so that author will be able to write some more. Reviews on Amazon are taken extremely seriously so when you write it, imagine that you’re talking to the editor in person. Be honest but realize that these words affect people’s futures more than you might imagine. I’ve never been one for popularity contests but the truth is that the decision makers in any given industry care about this stuff so you should too.

If you want to “like” this blog, our fabric or our books, head on over to The Modern Quilt Studio (one of these days we’ll get a button…) on Facebook and click away. If you’re not a Facebook user, no worries. You don’t have to be to “like” people. You just need to set up a free account. And while you’re on Facebook, look for all of the other people who inspire you and “like” them too so they can continue to do great work.