“Wow, they shouldn’t call these 7-layers bars, they should call this Diabetes Cake”, says one of my students during a cooking activity. This quote is the first thing that comes to mind whenever someone brings up diabetes. Having worked as an occupational therapist in hospitals and mental health in inner city Los Angeles, I was very familiar with the complications of Adult onset diabetes. I had seen tons of people with vascular disease, blindness and occasional amputation due to years of poor nutrition or other complications.
It was rare, though, when I had a student in my life skills groups, who had made the connection between the consumption of sugar and the disease that was currently progressing in one of their family members. This student who was one of my favorites (yes, I know you are not supposed to have favorites but any teacher/therapist does), had a parent who had already lost his leg and so at the age of 16 was already very conscious of the factors that could make that his future as well. All this to say, Diabetes Cake was the legacy he left behind and the majority of what I thought of in regards to the disease.
All this ties in to a recent trip to Uganda. I have had the privilege the last 8 months of traveling around the world to spend time working with NGO’s doing great work in difficult situations. Uganda was my second major stop and an awesome opportunity to spend time with a dear friend who has just committed 2 years of her life to work with a community of HIV affected widows. The organization, Dorcas Widows Fund, provides an array of services such as group farming projects, potential home support, medication support, clean water projects and child sponsorship.
The child sponsorship program is what my friend takes leadership over and where my story with diabetes continues. Renee and I got to spend a large amount of time learning about a different kind of diabetes, juvenile onset. And by a large amount I mean jumping right into a day of diabetic crisis with one of Renee’s students.
In the middle of that day, a few confusing doctors visits in, you begin to wonder how things got to this point for a 24 year old whom we will call “Bob”. The story starts somewhere in the middle for him as well, in the crux of his teen years when he lost his parents to AIDS and his brother, sister and himself became a “Child-Headed Household”. This term is often used for families in Uganda where children have been left to take care of themselves when parents are gone and there is not other family to take them on. Bob and his siblings were left to make some hard and destructive decisions in order to maintain resources for food and housing. The details of their story are pretty amazing but not mine to share so I will leave their history at that and return to our crash course day.
1. Long wait at the hospital
2. Frustrating doctors appointment where the doctor confuses himself explaining the course of treatment.
3. Doctors returns to the room after multiple requests, wearing a ladies headband and a bow.
4. Return later to find Bob has not been attended to to follow up on his medication, not to mention in hospitals there, the family (in our case us) has to go purchase the medications, supplies and food for the patient.
5. Get another doctor who describes a completely different equation and recommendations for Bobs treatment.
6. We get Bob out of the hospital only to realize we have no idea how to give a crash course in Type 1 diabetes treatment to a patient that has little money for food, when food regulation is a major part of treatment.
7. Thanks so much to several friends that responded to a public facebook call and help us set up course of treatment recommendations for such a difficult situation (Dr. Kevin and Nurse Katie) thank you…..
The situation continues after that in much more detail, only to be summed up in one word, “Frustration”. Frustration at a medical system that is ill equipped and over burdened to provide adequate medical care. Frustration at a situation that has created families that are “Child-headed” so that there is little external support for children/young adults going through such a difficult situation. Frustration that in a world with such amazing innovation, that there are places where such maddening situations occur.
I could on, but why….. I guess, please just know situations exist in frequency in certain parts of the world and that is just tragic. So with this said, a big thanks to Renee for being present and being a blessing to boys such as these. Thank you to those who responded to our facebook plea and helped us set up a manageable treatment plan for Bob that will hopefully keep things managed for his near future. Lastly, thank you to you, whoever is reading this and if you so dare, be invested in other places and people so that they too can have access to education, healthcare and community that is supportive, loving and advocated for each person.