“I can do this all day.” –Steve Rogers, Pre-Captain America transformation, as he proceeded to get pummeled in a Brooklyn alley.
We recently lost our son to Duchenne Muscular Dystrophy just prior to his twenty-fifth birthday. Like all who are born with that disease, his muscles slowly failed, starting with his voluntary muscles, then lastly his involuntary muscles. His heart finally pumped its last bit of blood on the 6thof October 2018, then quit. But Andrew never did, not til his last breath.
Andrew was 4 when he was first diagnosed. We thought he just had flat feet, and wanted to get him some orthotics to help him walk like a normal little boy. He was unable to really run, had a swaying gate that seemed to be compensating for something, and we thought it was just his lack of arches in his feet. We took him to an orthopedic specialist, who watched him walk, then ordered some blood work. That confused us a little, as blood in our minds had nothing to do with flat feet. My wife pressed him a bit, and he finally relented and said he was concerned that he had muscular dystrophy. I had no real idea what that meant, but knew that it was not good.
The blood tests came back positive, off the chart positive. When the doctor pulled us in to let us know what that meant, he offered little words of hope, as frankly there aren’t any. No cure was (or is) on the horizon, and the life expectancy was between 15 and 18 years old. His only real advice was to get a marriage counselor, as he stated that ninety percent of parents with a son who has muscular dystrophy divorce over the stress of it all. Wow.
Preot and I immediately determined that was not us, that we would not let this challenge break our marriage. We wanted to be part of the ten percent. We had no idea what that really meant, except that we were committed to each other, to Andrew, and to our daughters. We did not understand the stress of knowing you would most likely outlive your son. We dwelt often on the things he would not be able to do, of the short duration of his life, of the challenges he would face. What we did not understand was the level of pain he would experience over the next twenty years, the challenge it would be for our other kids as they watched their sibling deteriorate, and learned what the disease fully meant.
For Andrew, his mind was not that of a slouch. With an IQ somewhere between 150 and 160, it was at a young age that he started to understand what his disease meant. He knew where this was all taking him, yet he did not let it deter him from his lifelong goals and his desire to succeed. Also, we did not hide his condition from him, but wanted to make him an active participant in his treatments, to give him decision-making power as soon as we thought it made sense. He proceeded with school, friends, destructive activities of any other boy, scouts, and eventually an interest in girls. And with the passage of time, he became acquainted with pain.
Andrew fractured his skull when he was 9. He contracted a form of strep throat that entered his brain and caused a complete loss of control of his emotions for over two months, tormenting him with uncontrollable anger, sadness, and an inability to focus on anything. Those two months as a parent were the hardest thing I’ve ever experienced, bar none. We wept as we watched how it affected him, and how much pain we saw in his eyes.
When Andrew was about 12, his spine started to curve, which is normal for a boy with Muscular Dystrophy, and the eventual cause of death for most as they develop pneumonia and drown in fluids as their organs collapse and they become unable to flush fluids from their lungs. Andrew chose to undergo spinal fusion to straighten his back and increase the functionality of his organs. The surgery went well, but the ensuing infections left him in severe pain and hovering between life and death on multiple occasions for several months. At one point shortly after the surgery, he was visibly unable to tolerate the pain, yet when we would ask him his pain level on a scale of one to ten, he kept saying “three”. Finally, the nurse pressed him on that judgment, and his response was, “I can imagine a lot of pain.”
He finally recovered from the surgery, but an after-effect was a cyst at the base of his spine. Like a perpetually open wound, it was there for the next ten years. Constantly uncomfortable, often causing infection, the cyst was a constant reminder for him of his physical condition. It required regular attention.
As he gradually lost use of every voluntary muscle except his hands, the immobility caused him regular pain. The lack of circulation and tightening of his ligaments and muscles was a constant source of cramping, sharp pain, and sleepless nights. No amount of stretching fully overcame that 24/7 discomfort.
Andrew’s heart eventually reached a state where, for the final eight years of his life, would clearly put him in the category of ‘heart failure’. Unable to pump sufficient blood to his body, the life-giving effects were a burden on him both physically and mentally. Half of his heart barely worked, causing him pain in his joints, extremities, and was a challenge with any cold environment. He constantly fought with depression, a direct result of his lack of blood flow and inactivity, with anxiety, and numerous other ailments that were directly and indirectly related to his physical condition. Migraines, lack of sleep, loneliness, severe stomach and bowel discomfort, and many other ailments were regular conditions in the life of Andrew Oaks.
I don’t share any of this with you to garner sympathy for either my family or Andrew. Andrew no longer cares, as those pains are long gone. I paint you a picture to help you understand the sheer challenge that Andrew faced, yet he refused to give in. Close to a year before Andrew’s death, he was going through one of his phases of extremely sleepless nights, constant pain that even the best of medications would only dent. As we watched him struggle, we asked ourselves (yet again) if we were nearing the end, and if it was the right answer to pray for his deliverance. Death was the only thing that was going to relieve him of his pain, and we reluctantly considered if that was the best thing for him. Truth be told, we were not sure how much longer we could handle the ups and downs, watch him suffer, and see the uncertainty in our girls’ eyes with every close call.
One night, as I was putting Andrew to bed, he began to talk about getting the tendons cut in his hips to allow himself to lay flat and sleep better. This, after multiple conversations regarding his desire to go back to school and get his Masters, discussions of other options for his health, and things he wanted to do. As I listened to him consider going back into surgery—something that would be a definite risk to his life at that point—to relieve some pain and continue to fight for a more stable life, it dawned on me that he was not giving up. Despite the bleak nature of his circumstances, and the multitude of signs that told him he should have given up, he refused to do so. If he was willing to doing everything in his power to seek that better life, how could I quit? How could I give up? With the relatively few complaints about any challenge I have in my life, how could I not take Andrew’s example and suck it up when things were hard. I had no excuse for tapping out of anything before the bell.
Andrew wrote an autobiography, finishing it just prior to his death. Towards the end, his heart function was less than twenty percent, and he should have been dead long before then. As he finished up his book, he was planning a trip to Europe, considering what it would cost and how he would travel, who would go with him, and what they would see. As long as he held breath, he refused to give up.
To say I learned something from Andrew would be a gross understatement. This was just one of the many things he taught me. For a life of less than twenty-five years, I hope he knows how much meaning it brought to mine and so many others. Thank you, Andrew for fighting til the last breath.