How I Learned To Live Again

Joyce Webster

Two thousand five hundred and seventy-seven days ago my precious child departed from this world and entered the next. He was so very young, only 16, a sophomore in high school. He was so full of life and promise with a mouth full of braces (for the second time) and a head full of dreams. He was intelligent, thoughtful, and kind. He was one who always found the best in any situation or person. He was resilient and headstrong, funny with the most infectious laugh, and sensitive. He had the sweetest heart and gave the best bear hugs ever. And now he was gone. The only thing we had left were the memories of his staggering example of courage, love, and determination.


2,577 days accumulate to just over seven years. That fateful day, sobbing, I clung to Eshton’s “man-child” chest like a spider monkey, listening to my baby’s last heartbeat not knowing how to let go but knowing I had no choice. My lungs refused to cooperate, my legs went numb, my heart physically ached in the depth of my soul. Grief-stricken, brain numb, we stood around his hospital bed, his dad, his twin brother and I, trying to listen to the nurses and doctors explain what would happen next. Seeing their mouths move but hearing nothing but the deafening scream of every cell of my being as it cried out in protest. But to no avail. This was his time whether I liked it or not, or even understood it. All of the reasons my mind continued to provide were irrelevant. He was gone and we were not. The End.


I had at one point in my life traveled extensively lobbying for the FDA approval of a drug Eshton and seventeen other people, mostly children, needed in this country. I would sometimes give speeches, and there was a line that went something like this: “ In my life I have found that there is nothing more painful to endure than to watch your child suffer, knowing there is something available to stop that suffering and be unable to obtain it.’” I was wrong. And it’s shaken and humbled me to my core. Losing Eshton is a kind of pain that never really ends and I pray I never have to endure that kind of heartbreak ever again in my lifetime. It is entirely unnatural and wrong on every level. Adding insult to injury was watching my other son suffer. I had no idea how my mind, let alone my heart, would survive.


The following hours, days, weeks and months ran one into another. No real end or beginning. Not sleeping most nights, not wanting the twenty-four hour cycle to end, knowing it would signify one more day farther away from the last day I was with him. When the Sandman would remember to come and take me away from the reality of now, I would awaken in the morning with a renewed shock that he was gone and have to force myself out of bed. It took everything inside of me to do it and frankly, had I not had amazing friends coming to my house every day and another child that was suffering so deeply, I would have remained in bed. I don’t know what was more painful at that time; losing Eshton or watching Dan trying to come to terms with losing his brother and best friend. He was so terribly confused with absolutely no idea of what he was supposed to do next. He became my only reason to do pretty much everything I managed to do during that time and let me assure you most days it wasn’t much. Some days getting out of bed and dressed was the best I could do. But I did it so he could see me doing it—the act of going on.


Not surprisingly it wasn’t long before depression joined heartbroken, and my career and business as an independent healthcare consultant ended as well. Our wealth and retirement were the next to fall, and with them, our security. Once they were gone, it didn’t take much more for my marriage to finally succumb. We had had issues for many years, but had decided to continue to love each other and our children more than anything else. However, the cascade of loss sucked out whatever understanding and love we had managed to hold on to. After twenty-four years of marriage, I moved out of our family home the day after my forty-third birthday.


Life did not get better, or even easier for that matter. When my twenty-five year old nephew, Ryan, whom I was especially close to, tragically died very suddenly, it added yet another huge layer of loss and devastation that almost did me in. I spent that first year living with assorted friends and in houses with no running water. Life was hard and I was over it. I finally ended up in a small home I could afford with another friend. It was in a city near Dan, on the wrong side of the tracks where gun fights were a common occurrence. When the weather was nice enough, we would sit outside at night counting how many shots we would hear. When the shots got too close, we’d move back into the shelter of our home.


I borrowed money from yet another friend to put in a privacy fence and installed it with the help of even more friends. Thank God for those angels He set in my life! I rescued a pit bull puppy and my dad put in new steel doors and paid for classes so I could lawfully carry a concealed pistol. Thankfully—or at least that’s what I thought at the time—there was running water at this house. Unfortunately, the state and city had allowed it to be poisoned from using a toxic local river source that leached the lead from the antiquated piping into the water that ran into our homes. To make matters worse, part of the solution required the city to add several chemicals “to seal the lead back inside the pipes.” The city finally gave us bottled water and filters for the kitchen and bathroom faucets (warning us to not run hot water through them or it would destroy the filters) but nothing to filter the water that came out through the shower. At this point, my hair began to fall out and I developed rash-like eczema. To say I was miserable would be an understatement of epic proportions.


This is what my rock bottom looked like: heartbreak, despair, rage, depression, crushing debt, city violence, and poisoned water. It was the perfect storm, designed specifically for me. This was going to require a radical thought and perspective adjustment if I was ever going to find my way out of the black pit called Life that I was blindly and begrudgingly stumbling through.


I wish I could say that it only required me to have a sudden life-altering epiphany, or “light-bulb” moment if you will, that changed everything about my life and my place in it. But I can’t. It has been my experience that those kinds of scenarios only happen in movies. The real work, progress, and wisdom in life only come in small, hard-won morsels created from following through with difficult choices and decisions and doing what needs to be done regardless of how I feel about it. So, more like candles than light bulbs really. Another way I refer to it is “putting my head down and planting one foot in front of the other.” It’s acting on the belief that there will be a path for my foot to fall onto. A friend has referred to this as “shadow walking” and I think that’s a perfect description. It’s when you continue to push through life after being bound, gagged, and dragged off course. When you have zero idea where you are or how you got there and a GPS is nowhere to be found.


Shadow walking is by far one of the hardest things I’ve ever had to do. It requires a lot from you. It has a toll that can only be paid in emotional, spiritual, and physical currency. It will transform you—whether that’s a positive or negative transformation is up to the person. Every day for months I’d say to myself, “Bitter or better, which will you choose?” I would be lying if I said I always chose better. But I kept asking the question and allowing the outcomes of those choices to transform me.


And then one day, I had a thought (a candle moment) that maybe sometimes we’re not supposed to go back once we’ve been derailed from our previous lives. Perhaps that “life” was only meant for a time which had ended. It had provided my family with what was needed then but what was needed now had changed and would never be the same. And neither would I or anyone who loved Eshton.


Over time this new idea that I wasn’t supposed to go back to what had been normal began to resonate in me. It gave me permission to let go of that life and those things. To re-examine who I thought I was and what I thought I wanted. These were especially difficult tasks for me.


My emotional health was still in an abysmal state of affairs with the dynamic duo of depression and rage as my ever-faithful companions. They were relentless and brutal, attacking my weaknesses and vulnerability. Any desire that might have had the audacity to flash through my mind caused an instantaneous event of self-recrimination and guilt. I had come a long way but they could still drag me back to the pit for at least a day.


My boy was special. I know every mom thinks this way, and they should, but mine really was. He was the only one in the world, as far as my knowledge, to have the combination of two extremely rare disorders. One disorder, Ehlers-Danlos Syndrome, is a connective tissue disorder that caused his joints and even his ribs to dislocate. And the other disorder, a rare form of Severe Hemophilia B, is a bleeding disorder that was significantly rarer and profoundly more catastrophic in its scope and damage. Due to these two things, he grew up way too fast and endured way too much. One of the ways in which he grew up was when he came to terms with what it meant to die. I cannot adequately describe what it was like as a mother to endure that process with my nine-year-old child. But he did come to terms with death, and we emerged as emotionally stronger people.


The other thing that process gave us was a list he wrote, unbeknownst to us, of things he wanted us to remember or do when he died. He sealed it in an envelope and asked that we put it in our lock box for safe keeping. He was adamant that we were only to open it when he died. Only three years later we opened the envelope and found a note he had written for us to “help us move on”. What thirteen-year-old child does that? Yes, I told you he was special.


We also found that he had been keeping a journal specifically for his brother on his old computer with a protected password. We passed that on to Dan without ever reading what he wrote for him. I hope someday Dan will be able to share some of it with me. In the meantime, I held onto the list and tried to keep the very first thing he wanted us to do at the forefront of my mind: keep living.

Easton's letter




Of course that wasn’t as easy as it sounded with deepening depression and guilt beating the life out of me. I couldn’t figure out how to forgive myself for not being able to stop the inevitable and how to not feel guilty when finding joy in any aspect of life. About that time the husband of one of my best friends became gravely ill and passed rather quickly. He left behind my friend, an adolescent son, two young adult daughters and an infant granddaughter. Heavy sigh. I was asked to officiate his memorial and I agreed without hesitation even though I felt entirely incompetent.


What could I say to give anyone any kind of hope or comfort? What had I gleaned from my own losses that I could pass along to them? The list of suffering and heartache and pain was long and endless it seemed. Over and over the items on that list ran thru my head like a banshee in the night, creating havoc and chaos in my heart. I thought I had come so far since Esh had died and yet here I was, stuck with the reality that I really hadn’t. The dynamic duo was still steadfastly affixed to me and was now charting my course. I did make it through the outdoor service just fine once the torrential rains let up (literally) but the questions that had been brought up within me were not fine and they did not let up like the rains.


A few weeks later I had to take a long, sixteen-hour road trip. While I usually enjoy a good road trip, those questions kept circling in my brain, and that’s a long time to spend alone with my brain. I wasn’t sure how our relationship would take it, but I was committed to the trip so there was no turning back. Somewhere between the hills of Kentucky and the mountains of Tennessee I was completely tired of the endless hounding and starting talking to Eshton like I often do. I told him that I wished he was there with me enjoying the beauty of the autumn leaves. And then I thought (another candle moment) so does he. And so do Ryan and Tom and Mindy. They all would have LOVED to have had one more day to see one more sunrise, smell one more rose, or feel the sun on their skin one more time. And here I am, with all of those things literally at my finger tips, and I have the gall to moan and groan and feel pathetic because it’s hard. Shame on me! SHAME ON ME!!


I immediately apologized to the heavens and vowed to never allow myself to forget what an incredible gift life truly is. In that moment my new mantra became, “I am a spiritual being having a human experience”. I will always be a spiritual being but my opportunity to experience life as a human is finite. So I will choose to savor and learn from every aspect I encounter and be thankful for the chance to do so.


My life didn’t suddenly become amazing, and my debt didn’t disappear overnight, and I still miss Eshton and Ryan every single day. But what did happen was that I started living again. Since Esh had died I had been simply surviving. I began to force myself to participate in life instead of just enduring it. Every time I did it got better, less painful. I stopped feeling guilty for enjoying life and instead embraced the opportunity to be fully in the moment.


Eventually the dynamic duo of depression and rage broke up and went their own miserable ways. They still stop by from time to time to check in and see if I’ve missed them. They usually bring a bag and try to set up house again, but I remind them that an overnight visit is as long as they’re welcome here anymore.


And then as I see them to the door, I know I’m finally honoring Eshton by doing exactly what he asked me to do: continue living.