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.

22 thoughts on “Health and Creativity: Part 1 – a story, a free cookbook and a free quilt pattern

  1. As always Weeks, you are such an inspiration!!! I went for a 10 mile ride today (something I haven’t done in years). I saw people older than me passing me and I just reminded myself that they have probably been working at this longer than me! Then when I hear that you went from hardly being able to breathe to riding 190 miles, I am inspired!!! I am a healthy person, younger than you, and I don’t think I could ride 190 miles this weekend. I guess I need to work up to it.

    Thank you for sharing your story. You are such an inspiration to me to get off my butt and go do something, even when I am tired. Congratulations on your (relatively) good health and I wish you many more years! You are also so blessed to have such a wonderful, supportive husband and daughter.

  2. weeks, this brought a tear to my eye! you are an amazing person. thanks for sharing your story – it’s so inspiring!

  3. You are such an inspiration! Blessings to you and your family. We had a local bike ride to raise money for “Shoes for Kids” last weekend. Enough funds were raised to purchase 2500 pairs of shoes and socks for needy children. There were 765 registrants which is great for our small community. We rode 22 miles and it was loads of fun. I hope the weather cooperates for your ride.

  4. What a great inspiration. My daddy died of emphysema a few years ago and it was heart wrenching to see my strong healthy truck driver dad waste away from the effects of this terrible disease. He was terrified of power outages and leaving the house for longer than an hour for fear of running out of air. We bought a house on the edge of town and he came to see it one time..never leaving the kitchen..he had to sit down and catch his breath. I remember standing in the doorway watching him & my mom get back in the car..I knew in my heart that that would be the last and only time he came the next few months he slipped into a drug induced coma and never woke up.

    My #2 daughter suffers from asthma. Never will I forget the terror of her having a bronco spasm in the middle of the night. IF the light had not been on behind her and I not noticed her puff from her inhaler did not go in her mouth as she “laid down” on the foot of my bed when actually she passed out..she might not be with us today. She is 24 now and still struggles but never will that terror leave me and it wakes me up at night sometimes and she gets a middle of the night text from her crazy mom. =)

    Keep on riding Weeks! I’ll be cheering you on =)

  5. Your story is truly inspirational. The fact that you and your family continue to thrive and prosper in light of your health challenges is a testament to your faith and committment and positive attitude. I love your creativity and look forward to seeing you at QuiltCon. Thanks for sharing your story.

  6. Such a wonderful story Weeks, it’s clear to see how hard work, faith, love and commitment are cornerstones for your family and business.

  7. Your story is so inspiring- about attitude, faith, family… It also serves as a reminder that we don’t always know the whole story about anyone- what they are dealing with on the “other side”. I’m glad that things turned out the way they did and you are still around to share your creative talent.

  8. What a moving and inspirational account. Thank you for sharing it with us. You are brave beyond words and a role model for so many.

  9. It’s all grace! Thanks for sharing your story, Weeks. I have struggled with respiratory problems this year, and I just hate that I have had to be on so many steroids. You will be my inspiration for developing a more healthy lifestyle. Good luck on the ride! Wish I could attach a little AC to your bike! : )

  10. Thank you, first of all. I enjoyed your post at Whipup about Business and that lead to me to the Health section which really had me intrigued and then I saw your post today. I read your piece through teary eyes and I am so excited for your next adventure. I’ve had a few health issues over the years, none anywhere near as serious as yours, but I would not change any of what those experiences brought to my quilts. Most definitely there is a connection, good and bad, but it is what it is, so go with it. The new issue of Modern Quilts Illustrated just came in the mail – can’t wait! Take care – Byrd

  11. Thank you for sharing your story Weeks. It is amazing to have followed you since you started blogging and never gleaned the struggle you faced while sharing with all of us your creative, inspirational blogs. I’m amazed at the beauty of your faith and spirit and your plain good sense!
    I will take your words into my heart and face my own struggles, worries, with a renewed commitment to take care of myself and to live in the moment.
    I’m looking forward to part two.

  12. Thank you for your generous gift of sharing your courage and hope. Lung diseases took my parents. I’m blessed to have excellent care, as you also were, from National Jewish for my lung problems. You are indeed an inspiration for so many of us to ‘bloom where we’re planted’.

  13. Weeks, thank you for sharing your story. I’m amazed at how much you were able to accomplish in your career as you faced those health challenges, and I rejoice with you that things are better now. I totally agree about how we react to things can set the stage and is so important. Hope you are having a nice summer !

  14. Weeks, I had no idea you faced these challenges. You too are amazing! I love your work and admire your strength of character; keep doing what you do so well!

  15. Hi, I think your site might be having browser compatibility issues.

    When I look at your website in Safari, it looks fine but when opening
    in Internet Explorer, it has some overlapping. I just wanted to give you a
    quick heads up! Other then that, excellent blog!

  16. I just logged on to the blog and saw your wonderful, tragic, uplifting, scary, positive, loving, inspiring story – so I hope all went well, and it is not too late to make my donation……
    I did notice your involvement in the Craftsy cruise, and I must say, for the FIRST time, I am actually considering signing up for a cruise!! Yay!!
    Thank you for the wonderful quilts and fantastic fabric choice advice – I will treasure your quilt books all the more (if that is even possible) knowing the circumstances behind the publication.
    Thanks again
    PS – Cookbook looks good too !!!

  17. You are amazing. WHAT a story! What a life! I had logged on to tell you that my daughter had picked Blowing in the Wind as the pattern for her college quilt…how appropriate. Good luck and long life to your entire family!

  18. What a story, now I know why I was so impressed with you, I went to see you twice and you remembered me, I had a very serious health problem in 2010, and I am recovering and your story went straight to the heart, God bless you and keep up your high spirit. Loved meeting you and did not know your story

    1. Thank you Sylvia. I posted this because I know that others are suffering with health problems, sometimes silent ones that aren’t obvious to others. I also hoped that people might read this and remember it when they face similar challenges themselves. Chronic illnesses in particular are hard for people to understand because it’s never over. My hope is that we can all treat each other with a bit more compassion knowing that we might need that same kindness we we face our next health battle. I hope that you’re able to get the medical care and spiritual support you need.

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