Living with a serious illness

Thursday, 10-27-11  

We were recently in one of the cantons and learned about a family that is living in very difficult circumstances. I’ve decided not to use to their names to give them some privacy.

The wife and husband, I’ll call them María and José, live together with their one child. Not long ago María was diagnosed with lupus. For those of you who don’t know, lupus is a long-term autoimmune disease that can affect the skin, joints, kidneys, brain, and other organs. Joint pain and swelling are common symptoms as well as chest pain, fatigue, headaches, malaise, hair loss, sensitivity to light, and swollen lymph nodes. There is no cure for lupus; the goal is to treat the symptoms (US National Institute of Health, National Library of Medicine).

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs. Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body (Lupus Foundation of America).

About a month ago María had a stoke which left her unable to stand and unable to walk. She’s only 30 years old. So what is there to do for a 30-year old women who lives in the cantons and isn’t able to stand or walk? The answer is not much. Like most families, they have a small, single bed which is where she spends most of her time. The disease is physically exhausting so even if she could walk she still probably wouldn’t have the strength to do a lot. And since they can’t afford a wheelchair she really can’t even get around her house without help.

Since María can’t do much, José does most of the housework in addition to taking care of their milpa (corn and beans). Taking care of a milpa is a full time job by itself as is taking care of a household in the cantons. In the home, there is washing by hand all the clothes for the family and cooking from scratch the food. Buying things for the house, making repairs, taking care of their animals, watching out for their child, keeping the house clean…all of these things need to be done by José.

Life is never easy living with a serious illness. Living in the cantons with a serious illness makes life a whole lot harder than it already is. And unfortunately, there’s not much a family can do. When you live an hour away from town by truck and you don’t even own a truck, it can be hard to get to town. If José and María want to come to Berlín he either has to arrange for someone he knows with a truck to pick them up (which will cost money) or carry her to somewhere where they know a truck will be driving by and get a ride (which will also cost money). What’s more, if she needs to see a specialist, they’d probably have to go to another town because Berlín is small and doesn’t have a hospital.

From what I’ve read, people with lupus should have preventative health care checkups and tests to screen for thinning of the bones. Transportation alone makes these things difficult for María and José. Having no money makes this difficult. This also means getting physical therapy that could help her recover from her stroke is very difficult. José has learned how to do some physical therapy techniques with her so that helps a little, but it’s not like she can see a physical therapist once a week or go to a rehabilitation center.

Furthermore, doctors recommend that people with lupus be put on medication, usually a variety of medications, and they should have up-to-date immunizations. Though the Ministry of Health might be doing a good job about giving immunizations now, who knows what it was like 30 years ago. And their family certainly can’t afford all the medications María needs now to control her illness. Though some of the medications María needs can be found in Berlín others are located in nearby towns, which means José would need to take a bus from Berlin to get there.

So this is the life of a person with lupus in the cantons. I can’t even begin to imagine how difficult life is for their family. I can’t imagine how difficult it is for other families who are in similar circumstances.

The struggle to live continues.