Brandon Lewis- The Struggle
One of the most eye-opening things I've learned during my brief time as a Know Diabetes by Heart® ambassador is that type 2 diabetes is comprehensive and dynamic. When I had to have several Mountain Dews per day, in my twenties, little did I know my body was racking up an irreversible tab.
Back then, for me, diabetes was something your mother, father, uncle and grandparents dealt with. I wasn't sure what it was, I just knew it was grown folks stuff that sometimes caused their limbs to get cut off. I will never forget my introduction to this disease by way of my mother who nearly slipped into a coma after being recently diagnosed in her early 40s. It happened during my cousin’s wedding in New Orleans. We were all gathered with family in our hotel room and my mother began to slip out of consciousness. She was rushed to the hospital. We later learned that not only did she have diabetes, but it had gone uncontrolled for some time.
Looking back now, at all I've learned as an ambassador living with type 2 diabetes, I see just how silent and unforgiving diabetes is. Most of the things it takes away are gone for good. At 64, the mother I remember as so active when I was younger struggles to stand up straight and cannot walk 15 steps without stopping to catch her breath. She suffers from congestive heart failure, high blood pressure, high cholesterol and macular edema.
I recently picked my mother up from the airport after traveling to Los Angeles for painful injections in her eyes to control the swelling in her macula. I could see the whites of her eyes had been replaced by blood. I had to look into those same eyes and tell her there was an important voice mail from the nephrologist that had come to me as an emergency contact while she was in flight. She began to scream and shiver in fear as those eyes began to shed bloody tears. We stopped the car and called the doctor's office and before we left the airport, it had already been determined that she would return to Los Angeles the next day for more testing and consultation. The further testing would conclude my mother now also has stage 3 chronic kidney disease, which along with her macular edema will require constant monitoring by her doctor 1,400 miles away in Los Angeles. The macular edema and chronic kidney disease have been deemed critical care conditions. Putting her on an airplane, and having to continuously do so in the middle of this pandemic might very well be the hardest thing I’ve done yet. Mom just returned from Los Angeles following her latest treatment on March 29th, as the city has been almost completely shut down due to COVID-19, a virus that may severely threaten her life with all of her underlying conditions.
Learning that diabetes was the lone causative factor in all of these ailments is sobering, to say the least. The damage done to her body is permanent. As I sat in on mom's most recent call to her nephrologist, the doctor revealed her kidney disease was directly caused by her uncontrolled blood pressure and A1-C. Learning that mom would soon need dialysis if she did not get her numbers under control was scary. I immediately thought of my father, whom is currently on dialysis and has been awaiting a transplant for years. "Could this be the reality for my mother?" I thought.
If it was her reality, could she handle it? Could she deal with the discomfort and imprecision of doctors pre-plumbing her body with a port and the long hours associated with dialysis treatment? I asked her these questions and she said she doesn’t think she can handle it.
My mother asked the doctor what she could do to prevent her chronic kidney disease from advancing. The doctor's answer was simple. "Change your diet and get your numbers under control." Although, she can't reverse the damage done, if the orders are followed, she can keep it from worsening, which would keep dialysis at bay. She knows the alternative is to do better, and she knows better, but every night, the fast food drive thru window calls us and its voice is unrelenting and undeniable. Of all that is wrong with my mother, kidney disease threatens to be the worst yet. She has no pain or discomfort from this condition, so her progress cannot be self-monitored.
As a Know Diabetes by Heart ambassador, who knows better and is trying to do better, I often question whether I am strong enough to care for her, too. I can clearly see my future looking into her eyes, and the fact that we are virtually twins in the face is particularly troubling. How do you tell someone who birthed you, protected you, “No”? She’s been living her life the best way she knows how for 64 years and then one day she finds out everything she’s been doing is killing her.
The struggle is real, the struggle is constant and for many of us, the struggle is generational. I’m sharing our story because I hope you can learn our lessons without living our pain. If you’ve been diagnosed with pre-diabetes or are living with type 2 diabetes like me, remember that this doesn’t have to be our future. I am determined to control my diabetes and my high blood pressure and live a long and healthy life.