When I was 20 years old I spent the summer in Mexico teaching children in the most remote villages of the Yucatan peninsula. Early on I was trying to cross the street in the capitol city, Merida, while the streets were flooded. I couldn't see the road because of the gross water so I stepped off a curb and right into a broken metal grate. My foot was cut open and broken in 4 places. I spent the rest of that summer in a cast, crutching through the villages, living in dirt floored huts and feeling really good about my ability to stick it out! But a year later I started getting really sick to my stomach and after a year of illness and a trip to the Mayo Clinic, no one knowing what was wrong with me. I finally saw a doctor in Holland who just so happened to have done mission work in the same part of Mexico as I had. He immediately diagnosed me with a parasite near my stomach, that by then had grown to the size of a football. He gave me medication to kill it and flush it out of my system and the treatment worked! The doctor said the parasite had entered my body through the open wound on my broken foot that got stuck the sewer water of the flood. I finished college and life went on, until I was about 36 years old.
I started getting sick again. Throwing up all the time, passing out, dizzy, sweaty. For a year things got worse and worse until I was so sick that some days I was unable to even get out of bed and I would vomit multiple times a day. Finally, after seeing many doctors and having a million tests I was referred to a gastro specialist at U of M and was diagnosed with gastroparesis. It literally means "your stomach is paralyzed". My stomach didn't move. Wouldn't digest my food properly. Things would get stuck in my stomach and ferment and then make me vomit. But my body reacted like I was starving and started turning everything I didn't throw up into fat. So I was this weird woman who threw up all the time but mysteriously gained weight. The doctor thought that somehow that parasite had done permanent damage to my stomach and my symptoms would only get worse until I would end up getting a feeding tube inserted in my intestines bypassing the stomach to stay alive or maybe not survive.
Then I got cancer the first time. Stage 3 malignant melanoma. That's when everything fell apart. I was too sick to keep my job of 14 years as the Executive Director of Safe Haven Ministries. I had just raised two million dollars and oversaw the building of a new shelter for abused women and children that quadrupled our capacity. I had taken a small, new nonprofit from an organization of one live-in staff person (me!) and a $30,000 annual budget to managing a staff of 20 professional therapists and social workers, raising $700,000 annually, with three locations, serving more than 1,000 battered women. My proudest moments were growing that organization and serving those women and especially protecting those children. I was consulting with the Department of Justice on the Violence Against Women Act. I was being flown in to D.C. to review federal grants. I was providing expert testimony in courtrooms around Michigan. I worked like 12 hours a day and gave my whole life to that organization.
So I had to give up my job. The most important thing to me was that Safe Haven thrived and kept growing and protecting women and I couldn't be sure I could make that happen in my condition. I tried to go to work in a much smaller non-profit. Ran an HIV/AIDS prevention non-profit called The Red Project for 2 years. We handed out clean needles to heroin addicts on S. Division, I delivered condoms to all the gay bars and bath houses in GR. I got licensed to do HIV testing and counseling. But soon I was too sick to even make that work. I became too sick to work at all. Eventually I ran through all my savings and my retirement and I lost my house that I had owned for 16 years, my car was repossessed, I had to file for bankruptcy because of medical bills and I was sleeping at a friends house with all of my belongings in storage. That was four years ago.
I had several more surgeries for cancer, finally got approved for disability, started to get medical insurance, after having to hire a lawyer, and started to try to put my life back together a little bit. But I was so sick all the time, it was nearly impossible to stay above water.
Then, last year January, I read this article about a study that had just been published about gastroparesis. Researchers thought it might be caused by an overproduction of a hormone called grelin. Grelin is only produced in the lower right section of the stomach. So they hypothesized that removing the part of the stomach that produces the hormone might take away the disorder. I brought the article to the attention of my doctor at U of M and we both agreed it was a last ditch effort to get my life back. So on July 21, 2015, one year ago, I had 85% of my stomach removed at Blodgett hospital. I knew immediately when I woke up in the recovery room it had worked. My constant state of tremendous nausea was gone. It was a true miracle. In the last year I have thrown up one time and it was only because I had worked too hard at the gym and puked all over the treadmill!
So in the last 12 months I've been working super super hard to get my health back. I've lost over 100 pounds and I'm still diligently working on more. There has been an article written about me in a medical journal and I'm feeling stronger all the time.
A few months after surgery I was talking to a friend who was throwing her mother a 90th birthday party. Her mom is this vibrant, amazing woman who has, and still is, doing amazing work to help people everyday. So I did the math. I was 46 years old. I could have another 46 years of life on this earth. And I realized, a year ago when I thought I had made every contribution I thought I was going to make and I was facing this horrid disease I was really just living the end of my first act of life. I feel like I got the gift of a 2nd act now! And I plan to take full advantage of that.
So last Fall I gathered all my closest friends and family and had a party. I thanked them all for the amazing things they did to support me through my illness and shared the quote about the butterfly I mentioned at the top of this note. As I lit a candle, I thanked each of them for being a light in my darkness and promised them to give everything I've got to this gift of a 2nd Act. And that's what I'm trying to do right now!
