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.