Giving Back: A Patient Story

It was a spring day in 2001. My wife Gina was asked if she wanted to go for a quick ride on our friends new motorcycle. It would change our lives.

Not more than 10 minutes after they left the house I got a call that they were both in the E.R.

My wife’s hand was pretty chewed up and required surgery to clean up the gravel and dirt. From the pain my wife was feeling, it seemed her hand wasn’t healing. It didn’t take long for her to be diagnosed with CRPS or Complex Regional Pain Syndrome.

We lived in a small town, far from the doctors she needed to see, and we had to begin taking long trips for appointments. My wife could not bear the pain and eventually was let go of her job managing an office. It had been her favorite job ever. I started taking time off of work to get her to the experts she needed to see, using sick days until they were gone, and then vacation days until they were gone.

After weathering multiple therapies, procedures, surgeries, medications, and a suicide attempt, we were both exhausted. Eventually we were told we needed to get to a better climate and closer to experts as there were none where our lives and my career was.

In 2004 I landed what I thought was a great job managing a utility district on the Central Coast of California. It had everything we needed; good pay, good insurance, time off, a work vehicle and some freedom.

It turned out not to be as great as it appeared. After a federal investigation, a few grand jury subpoenas, a surgery I needed, and a firing, a law suit was settled as to keep us alive until I was back on our feet.

We never did get back on our feet as I couldn’t afford the funds to travel to get the necessary credits to keep my several licenses current.

It was back to commuting to Los Angeles to do film work which became increasingly difficult with Gina’s health seemingly deteriorating. I started to do side jobs at home as to be close by in case of emergencies. It was then, in 2011, that she was diagnosed with systemic scleroderma. Life was crumbling. In 2013 she was in such bad shape the doctors decided she needed to go on Total Parenteral Nutrition to keep her alive. It was devastating and the costs were exorbitant.

We talked with a social worker on how to deal with it and with no real job and no insurance. They said it was best to either divorce my wife so she can go onto welfare and Medicaid, or sell off what little bit of investment I had and maintain a poverty level life style. At the moment we had no choice to keep her alive and we chose the latter. We were so insulted they even suggested getting a divorce.

I had painted a few hearts for Gina’s hospital room and as we needed to take care of some issues, a discussion was had with a friend of mine and the concept of an art project was started. I called it 10,000 Hearts for Gina and it would lead to something much larger. I had my 1st art show a month after Gina got out of the hospital and, along with a lot of older work, hung about 20 or so heart paintings. A few folks asked about them and I explained how it started.

I continued doing the paintings and working small side jobs in town when I could. It was really tough, and life still is, but we were keeping the bills paid and the rent covered. Can’t say the same for car maintenance or all the other things one needs to take care of, as rent is ridiculous and eats most of our income.

In the next show I did, 6 months later, I made a giant heart out of the many hearts I painted. It hung, when complete, 10′ tall and 12′ wide. I put a couple signs up about the project to raise some awareness about Gina’s diseases. The response and interest in Gina’s condition we received was amazing. There was something building.

After a friend I had worked with for a long time suddenly passed of cancer, I found myself struggling and found my way to In Home Support Services. It was a blessing, yet not enough to survive on in this economy. It did, at least, give me a steady income. Of course divorce came up again when applying; I once again, was urged to divorce Gina so I could receive many more hours. I again, was insulted and would not divorce my wife of 25 years.

I continued the 10,000 Hearts for Gina project and kept showing it at the Biannual Brewery Art Walk in Los Angeles. It was growing and we started sharing brochures and info on Gina’s diseases. People were coming back to see the progress and to see how Gina was doing. We were making an impact, though I still felt like I was not contributing to society.

I kept thinking why that was, and it all came down to a feeling that we were stuck in a system that keeps you trapped, with no way out.

Sure, I could get divorced and move on but what about the social effects? I wanted to work out of this system of poverty, but if I were to get a job, Gina would lose her insurance and even with her disability insurance, it would cost us over $100,000.00 a year. It’s crazy.

I couldn’t get over the feeling that I was not contributing to society so I convinced Gina that we needed to start sharing the heart paintings with other patients and caregivers that needed some light and hope in their lives. It was amazing to hear from folks how having a heart on their wall made them cheer up or let them know others are out there when they are alone. The project was growing, though it was always stop and go, because materials and shipping all cost money, which we had very little of. Thanks to some amazing people, we were able to carry on in little bursts.

In 2016 someone sent my wife a link to the Rare Artist Contest and told her that I should enter. I hesitated when I initially looked it up and saw it was for rare diseases, but upon looking a little deeper I found that Gina’s diseases were indeed considered rare. I entered a recently finished work that consisted of 70 canvas with 70 hearts.

I was pleasantly surprised to find out I had won an Artistic Merit Award and was invited to Washington DC for an artist reception.

I got help for the costs and decided I would sit through a conference and walk The Hill to see what DC was all about. I was stunned by all that I learned from that experience and from talking a bit at the artist reception in the Russell Senate Building. I returned home with a new vigor. The kids are what touched me the most; not to mention the parents of so many sick children with no treatments. I needed to do more.

By September of 2017 we had several friends who joined us to start a small nonprofit called Kneading Hope.

We decided we would have 3 main goals: Raising awareness through the 10,000 Hearts for Gina project which I have pretty much given over to the nonprofit, Finding a way to give caregivers some kind of respite, and working on art as a therapy.

We shared the hearts before, but after starting Kneading Hope we were able to reach so many more people dealing with many more diseases.

People have opened up to us about dealing with their own issues. Many friends and family have dealt with, or are currently dealing with, rare diseases and we never knew. They are talking about it and sharing their stories. We have sent hearts to most states as well as internationally. It is amazing to think that these hearts have made it to patients or caregivers as far away as Europe, Australia, and even Saudi Arabia. We are making a difference; though it never seems enough.

We have found our way of being productive; though it is not what we thought it would be early in our lives.

We will still struggle on a personal level but that will just make our commitment to help others even stronger. We are inspired by all those who fight every day just to find a bit of hope. We will continue to build Kneading Hope and set our own needs aside at times, as this is all we can do to touch as many folks as we can.

Three things we want everyone to know. You Are Loved. You Are Important. You Are Not Forgotten.

About the Author: Patrick Guerre is a husband and caregiver to his wife Gina who suffers from RSD/CRPS and scleroderma. He is an artist and has been using his project called 10,000 Hearts for Gina to not only raise awareness of Gina’s diseases, but rare diseases in general. He is the President and Founder of a non profit called Kneading Hope that shares his work with patients, caregivers, and medical staff as well as promotes art as a therapy. He has advocated for the rare disease community in Washington DC as well as state and locally though his non profit is geared towards dealing more directly with the human aspect of patients and caregivers.

 


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