Christina Update #5: How a Zebra Travels

I’ve been so grateful for all the care and donations from many kind people. I feel blessed that I have this opportunity to be out of the bitter cold and to have my own space. I need my space. On the other hand, I enjoy being social – laughing and spending time with others. It’s challenging here, meeting new people who don’t know what’s really behind the shell of my body that appears mostly okay. I’ve lost another 10 pounds, as I’ve been not feeling hungry at all, and people are wondering what’s going on. Depending on who is commenting, I can share a little bit or else I just, well, I just don’t and change the subject. 

Returning to San Pancho didn’t go quite as planned, like being very let down by people who had said “Come back to Mexico” and “I’ve got your back” and “We can get together once a week.” This has been quite hard. And as we are distancing all over the world, I’m sure you can understand the isolation feeling. Times that by 10 for me ...

For three weeks I had amazing downstairs neighbors, from Canada. Now they’re off to other parts of Mexico. I enjoyed being invited to their amazing Christmas dinner of yummy fresh fish and veggies. I was so happy to be with them and felt part of the family. If they weren’t there, I’d have spent Christmas alone. Holidays are particularly hard, as I have a large extended family, two great sisters and two sweet nieces, three and five years old. It was bittersweet to see Thanksgiving and Christmas pictures of them together.

After my neighbors left, I tried my best to continue to get out of bed each morning, although it’s very hard for me. Not just pain-wise, but emotionally. I wake up in so much pain and it takes a few hours and meds and stretching before it comes down a bit, if it’s going to. But I’m trying hard to get up every day and shower and water my plants. Then I just feel lost and alone. 

I really miss being able to work and feeling productive as well as having great conversations while doing hair and happy client feedback. Many of the people I know in San Pancho are not here due to covid, and the few who are … well … it’s just not ideal and has been a challenge. It has been more than a week since my neighbors left and the complex is empty, both Airbnbs vacant, and I feel even more isolated and alone. Confused. Even scared that, if something happened, I can’t just yell downstairs and help would happily come. 

I started to go even more downhill, so I reached out to a Canadian friend who I met as a client four or five years ago to see if I could visit. She now lives in Puerto Vallarta permanently. She always said her door was open any time and would love a visit, so I felt it was the time to go. I felt like I was going to have a major meltdown and was quite worried. I’ve been here with her for a few days now.

Unfortunately, I got VERY sick after eating the first dinner with her, as my body wasn’t used to eating what I did. So it was 12 hours of violently ill. It worried her that I might have covid. I knew it wasn’t covid but instead an EDS issue. I have major GI issues from EDS. I was really scared I would tear my intestines. We came close to calling an ambulance. But I’m tough and made it through the horrible suffering. My friend felt sad and helpless and I felt awful to arrive and have a great dinner and then get so ill.

Still, I’m very happy I wasn’t alone for those 12 hours of torture, as I would have been even more scared and would have called a taxi to the hospital. It took two days to be able to even walk around, let alone eat, but now I am much better and just dealing with my normal daily torture pain. And emotional distress and fear of how this is all going to end. 

PS People with EDS sometimes refer to ourselves as Zebras. According to the international Ehlers-Danlos Society, the reference to zebras is borrowed from a common expression heard in medicine: "When you hear hoofbeats behind you, don't expect to see a zebra." In other words, medical professionals are typically taught to look out for more-common ailments rather than testing for EDS.