Sunday, December 28, 2008

Type 1 Diabetes and Grief

Elisabeth Kübler-Ross was a physician well-known for her observations about the grieving process. Her work was ultimately expanded to recognize seven distinct phases of grief. These stages are dynamic, meaning that one stage isn't necessarily resolved before we slide into the next, and we can backslide into an earlier stage anywhere along the way . . . Today marks the three-year-anniversary of my son's diagnosis with Type 1 diabetes. (This is the type of diabetes that begins during childhood and with which it is essential to regularly inject supplemental insulin.) In those first days, I felt detached, as if watching from afar all that was happening. As a nurse, Dr. Kübler-Ross' grief stages were well-known to me, and I could "feel" myself living in those stages at the time. I thought it would be useful to share my family's progression through the phases on this anniversary.

1. Shock. There are no fences in El Paso, Texas . . . well, very few anyway. Instead thousands upon thousands of rock walls neatly surround and divide neighboring properties. They all look pretty much the same, but the one surrounding the military RV park at the intersection of Ellerthorpe and Gerlich Streets is embedded in my mind. My son was a freshman at Chapin High School. I was picking him up after school one day in November of 2005, parked in my usual spot which happened to face the aforementioned wall. It had to have been seconds after greeting my boy that he remarked how thirsty he was, and in fact had "been thirsty all day." I felt like a rocket exploded in my chest, but it was just a burst of nurse-mom adrenaline. One part of my mind was fixed on that segment of rock wall, while another part (where the reflexes live) demanded immediate answers, "How thirsty? Did you have to pee a lot?" Something in my tone and manner brought out the disdain in my 14-year-old, who of course wanted to know why I was asking him such off-the-wall questions. I choked out a reply,"Because being really thirsty and having to pee a lot are signs of diabetes." He rolled his eyes,"MOM--why do you always have to be this way?" My answer, "Because I'm a nurse and a mom. Forget it, I know you don't have diabetes!!" But a seed of fear had just been planted in my soul.

2. Denial. Weeks passed and my boy was still thirsty. But we lived in the desert, and he was very physically active; he needed the water. And he wasn't urinating more than usual. He was hungry, but just what I would expect for a tall thin boy who was in the midst of a growth spurt. For months I'd been fixing him late-night-snacks to try to put some meat on his bones while he grew. His daddy and I were both thin and muscular at his age--no reason for our boy to be any different. So I cooked him big omelets and stacks of pancakes and enjoyed seeing him eat. He complained once about blurred vision while taking his final exams the first week of December. We looked for his reading glasses--the ones he had never worn . . . but we didn't find them and the blurred vision passed. I promised myself to get him an appointment for a physical exam over winter break from school, just to make sure all was okay. We didn't have a regular pediatrician, though, since my son was always such a healthy kid. Instead we relied on the pediatric clinic at the nearby Army hospital with occasional visits to local doctors if need be. A few days after Christmas on a Saturday, my son accompanied me on some errands. The errands included a drive through McDonald's to get him a huge meal and chocolate shake, shopping at the PX on Fort Bliss, and then on the way home a stop at Walgreens to get a few items including a simple glucometer to measure blood sugar. I wanted the cheapest one. I knew I'd never use it again unless one of the neighbors wanted to check their blood sugar sometime. I got the one with the fewest test strips. I knew I'd only need one strip. Just one strip to set my mind at ease . . . because my son was still thirsty, and the night before he had been alarmingly hungry. My son wanted Gatorade at Walgreens. He got a liter bottle and drank the whole thing before we got in the car to go home.

3. Anger. I didn't know I'd ever be mad at God. But I was. Very mad. I thought I had done my earthly job of protecting my son and wondered why God had let the devil harm him in this way? Sometimes irrational and often crying by myself, in the first days, weeks, and even months, I couldn't wrap my mind around the "why?" of it all. It wasn't fair that my good boy should have to bear the burden of sharp needles prodding his fingers and belly multiple times a day for the rest of his life. Not fair that his dreams of being a soldier or marine be suddenly unattainable. Not fair that the spontaneity of his life be interrupted by the demands of managing this condition. The cheap glucometer I bought at the drug store had recorded an initial blood sugar of 600 for my son (while mine was 90 and his dad's was 82). His second reading was higher. Perhaps during the months that his body's insulin production was ceasing he'd been this high before . . . but in any case, it was imperative that we get emergent care, because suddenly polyuria had joined polydipsia and polyphagia; the triad of classic diabetes mellitus symptoms was complete. I was mad at myself, too, thinking that I was to blame; revolted that I had not bought that glucometer sooner, worried that I had been neglectful of his symptoms. I was angry that all of my careful attention to the details of his well being since conception seemed to be irrelevant . . . I failed my child somehow in providing for a healthy foundation, I thought. What was the point of following Dr. Spock's advice, of getting every immunization on the day it was due and never missing a well-baby appointment? In infancy La Leche League would have been impressed by the way I nursed my baby, and the USDA wouldn't have had anything to criticize regarding the introduction of solid foods in his first year. But in this stage of anger, it all seemed to have been futile, because those things didn't protect him from the autoimmune insult that resulted in Type 1 diabetes as a teenager.

4. Bargaining. The ER nurses at William Beaumont Army Medical Center were great. They did everything that was indicated to begin reversing the diabetic ketoacidosis (DKA) that had started to set in. After midnight we were transferred to another hospital for overnight intensive care. I always say that my son handled every step of this entire illness with grace and maturity beyond his years--and so did my husband. It was me that was emotionally ripped apart by it all. While my son slept attached to the cardiac monitor and with IV fluids infusing, I laid on the reclining chair and urged myself to sleep--so that I could wake up and find that this was all a dream. I prayed that I could have the diabetes instead of my son . . . and tried to figure out other schemes for making this whole surreal chain of events "not be true."

5. Depression. We were absolutely blessed to have wonderful people in our daily lives to help take the sting out of this life-changing event. My son's Godparents, Ken and Shalla (another nurse in his life); my dear former charge nurse, Violet; our next-door-neighbors the Salvadors who are really more like beloved family; family friends Christine and G. Cartegena; and my darling friend and public health classmate, Ethel Martinez, a physician trained in Nicaragua who just so happened to be the main educator at the El Paso Diabetes Association. As I said before, my son handled this situation with grace, but in looking back at photos taken on the ski trip for teens with diabetes, he's wearing a very sad expression. I was so grieved about this for a long time, and I would easily cry about it. Sometimes it can still happen in certain circumstances, but rarely now. The depression aspect of this grief stage also caused me to cut myself off emotionally from some other friends and neighbors.

6. Testing. We looked for clinical trials for new onset of type 1 diabetes during this stage where we tried to figure out how to live with diabetes in our lives, and learn about what is going on in the world of medicine to try to cure Type 1. At the diabetes Ski camp my son received inspiration from Jim Berkebile of Animas Corp. Jim, also a Type 1, was a motivational speaker for the teens. (And when it came time a couple of years later that my son wanted an insulin pump--he would only consider an Animas pump.) Through Jim, we came to know about the groundbreaking work of Dr. Denise Faustman of Harvard Medical School. My son calls the shots on these issues--he was eager to participate in the preparation for the Phase 1 Trial of the BCG vaccine by donating his blood samples at the Faustman Lab in Boston.

My son with Dr. Denise Faustman at her lab in Boston where he  participated in her research to reverse Type 1 Diabetes.  Learn about Dr. Faustman's research at

7. Acceptance. My anger with God was short-lived, largely in part of the grace with which my child chose to accept this challenge. The first line of my nightly prayer to this day asks God to allow mankind to find the cure for autoimmune illnesses if it's his will, and I particularly ask his blessing for Dr. Faustman and her staff, because if successful her research will benefit a broad spectrum of autoimmune conditions--not just Type 1 Diabetes. All the people in this world have their burdens, and this blog certainly doesn't permit enough room to explain to what extent I know that my family has been truly blessed after all is said and done, regarding the ordeal of diabetes. We have been blessed foremost with caring friends and professionals--noteworthy are Dr. Christenson in El Paso, TX; Dr. Soler in Springfield, Illinois; and Deanna Lohman, RN, BSN, CDE. We have learned much . . . our family has persevered and our son is productive, healthy, and thriving.

Our medicine cabinet is stocked with 3-months worth of supplies for the Animas insulin pump, glucometer test strips, and other things that a registered nurse wants for her family . . .
A Glucagon injection kit for a serious emergency of low blood sugar has a place in the refrigerator along with a tube of cake icing, which is also helpful in quickly bringing very low blood sugar up quickly.

New, fresh Humalog insulin is prominently featured in our frig, but for peace of mind--no old drop of insulin is ever discarded . . .


Anonymous said...

Well Diabetes type one has been difficult to manage since this new Very fast reactive Insulin. (RNA) And this Cure Denise Faustman has found Since July 21 2001 at Harvard has been something Every diabetic wishes for and is most hopeful to be the cure, all with a connection to God realize that His will is a cure! It will come.
Nice to see your Post.

Carolyn Cooper, MPH, RN said...

Thank you for your comments. I certainly agree . . .

Anonymous said...

Carolina,You are a beautiful person, excellent mom and a wonderful nurse, and the best professional the MPH program. DM type 1 is a tremendous disease that people need to face with courage and discipline. The best part of all your History is that in this moment trough all your experience and grieving process and the acceptance of reality with this disease you are sharing and educating our families that are facing the same problems. You and you family and specially your son have being blessed for live and pass all the steps in life to fight against diabetes. Remember that diabetes does not discriminate. God is a new born again in this December 2008. I wish the Hope to cure will always keep as awake.

Carolyn Cooper, MPH, RN said...

Gracias, Mi amiga para siempre - ¡Te amo! Carolina

Penny said...

Thank you for your comment on my blog. I've gone through these stages of grief in different order many times over the 3+ years that my son has had Type 1.

The burden is less, the tears are less, but the disease is still there. I still have days where diabetes gets me down. But, I have many more where diabetes is in the background.

My son started using an Animas pump 5 months after his diagnosis. We love the Animas. My favorite thing about it is that it is waterproof. We live on the coast of NC and my son does a lot of swimming.

I loved the picture of your son and Dr. Faustman. I scoured the internet when my son was first diagnosed and found her research to be very promising. A few weeks ago I held my third Walk of Hope. The proceeds from all three walks have gone to Mass General Hospital and Dr. Faustman. I wish we lived closed to Boston so that my son could participate if and when they start trials on younger children. (He's only 6.)

Anyway, didn't mean to be so long with my comment. I just wanted to stop by and say hello.

Anonymous said...

Great Job Carolyn. Having a child with type 1 and the second child just got diagnosed with Dense Deposit Disease a week ago, going through a very difficult time, Finding your blogs so helpful. Thank you.