I walked a mile with Pleasure;
She chattered all the way.
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow
And ne’er a word said she;
But oh, the things
I learned from her
walked with me!
This day has a very different tone than it did a year ago. As we are recognizing with everything in life, not better, not worse, just different…but amazing in its own right, for it is, as it always is, the only right now we will ever have. You would be very glad to know that this year Dad and I are going out to get the rest of what we need for the yummy things we’ll be cooking in the next 3 days. This year we are back in the game.
I could go on and on about the amazing lessons you continue to challenge me with,or gifts you offer to my outlook on simply everything…
That will not change no matter the day, and today will be industrious…surely filled with angel numbers and songs from your playlist…memories of every Christmas we shared. It will end with baby snuggles, holiday movies and cocoa.
The weekend will be filled with family and laughter…joking and eating and napping. New clothes will be worn, reminiscing served alongside the turkey and fixings. We will enjoy familiar faces and encounter new ones. There will be music and games….skyping and phone calls….and well, just being togetherness.
And you are the one family member that gets to be in every household.
Every. Single. Moment. Oh, snap, is right.
At the end of the day…love is winning, Casey Dalton.
Love always wins…and so it goes.
“It is not enough to wish, dream, hope. Even children know this. We must set sail into the sea of uncertainty. We must meet fear face-to-face.” ~Veronika Tugaleva
Since our family lost Casey, we have all been so grateful for the outpouring of love, support, and empathy. So often we have heard the expression that the death of a child must “be a parent’s worst nightmare”.
I would tend to agree that this experience is right up there near the top of my list of life’s most painful possibilities. However, I would not necessarily agree that it rates number one.
I know, I know. This sounds awful. How could I infer such a thing? Take a breath, suspend your judgment for a moment, and let me explain.
Casey died tragically and suddenly in a violent car accident. Rick and I have opted not to know the details of the actual injuries that took Casey’s life. From my 20+ years of experience in the field of nursing, however, I can tell you that the mechanism of this accident was such that if he had lived, the odds are great that the decisions related to end of life care would have fallen on his closest next of kin; in this case, his parents.
Anyone who knew Casey can only guess what he might or might not have wanted if this had been the outcome of his accident.
The Casey Dalton I knew was fun loving much of the time. Vibrant and athletic, he never sat still. He did have a short fuse, and when it burned down at the end of it you would encounter an explosion of pacing, arms flailing, rapidly fired, angry roars and chatters, soon followed by a grouch who hid under his hoodie, shuffled his feet, and mumbled irately under his breath. He hated being dormant and without an industrious task, physical activity at hand, or some type of auditory or visual entertainment, he was easily bored. Most often he was concerned about caring for others, and with that care he expressed an attitude of, “Don’t worry about me. It’s all good.” He could be very modest and private at times. This was a young man who was proud to be extremely independent and determined. He could also be a downright, stubborn pain-in-my-you-know-what. And as our whole family did, I loved every smile, every smirk, and every quirk of this special guy.
So, knowing all of this…I am forced to ask:
What would he have wanted had he lived through his accident? What path would he have chosen with a body kept alive, but badly broken, and potentially beyond repair?
Would his desire to be active and independent driven his decision, and therefore he would never have wanted to live bedbound and dependent on others for care? Would his biggest fear have been being a burden to others?
Or…would his determination and stubborn nature lead him to opt for a choice to hold on as long as possible, in the hopes that some type of miraculous recovery might occur?
Having to make this decision for one of our children, or for anyone that I love, amidst the trauma of a crisis, having no idea how to truly honor their autonomy and most sacred wishes…for me, that would top the list of the worst nightmare. For in this decision there could be no true closure; no resolve. Had the outcome of Casey’s accident been different, the future would have held an eternal, unanswered question for all involved:
Was this what Casey would have wished for himself?
Such a situation might have had a significantly negative impact on our big, blended, loving family and all of its vast extensions. It would have put in our faces the realities of the laws of our country related to genetics, versus what we hold most dear in our personal world, being that a family is a circle of people who love you.
We would have been challenged with the differences in our individual experiences with Casey, as well as our own personal biases, wrapped within the dynamics we share in relationships with each other. All of that complexity would have weighed heavily upon us amidst horrific trauma and sadness. We probably would have faced a greater risk of being torn apart, instead of being drawn together. Casey’s death has been a horrendous blow to this family. As have said before we are blessed in that we have become stronger as a result.
We are not so special though. We are certainly not unique in our grief, and we are not alone in our experience of loss. Why, you ask?
Because the facts are clear and the numbers don’t lie.
The current death rate is 100%.
It always has been.
It always will be.
No one gets out alive. The only variables are when and how.
In the wake of the courageously public death of Brittany Maynard on Saturday, the “Death with Dignity” discussion has been placed, at the very least, in the forefront of American culture…but it is probably safe to say worldwide. I am not inferring what is morally right, or what you should or should not believe about Ms. Maynard’s decision. What is most important, I feel, is the topic, the facts that relate to it, the importance of facing these facts, and then cultivating a culture where this discussion is the norm; one where individuals feel compelled to put their wishes in writing, whatever they may be.
If you are over 18 this means you.
If life circumstances find you in such a condition, be it temporary or permanent, from an accident or a disease process, of being unable to make and/or communicate healthcare decisions for yourself, the law automatically defers these decisions to those who are considered your next of kin if you don’t have anything to the contrary available in writing. Often times this may end up not being the person who is closest to you, but could end up being the person who is the easiest to reach, or to whom you are most closely connected genetically or legally. This could be your soon-to-be-ex-spouse who is feeling less than happy about your existence to begin with, or your eccentric brother from Walla Walla, Washington who has not spoken to you more than a handful of times since childhood. The laws vary state to state…it could even become more complex if you are in another country.
If you do not have your wishes put into writing, even for temporary situations, and then distribute them as thoughtfully and efficiently as possible to make them accessible, your day to day care during whatever time you are incapable of making decisions, will probably be managed by strangers in a hospital setting. They will be guided only by input by your traumatized loved ones, who may not be allowed to make the legal decisions, each facing their own personal struggles amidst that crisis. Final decisions on all aspects of your care will fall on the shoulders of the person, or people, determined by law, and only those willing to take on this responsibility and sign on the dotted line will have the final say. Everyone involved will only be able to guess what it really is that you want.
Is this a plan you are willing to accept for yourself in your most vulnerable hour?
Do you want your fate to be in the hands of who the law says owns that right?
And equally as important, is this a burden that you are willing to impose on others without their permission?
From a nursing perspective, it’s not how I prefer to give care. It is always my intention to honor my patients. How can I do this if I have no idea what it is that they want? Giving the most basic example, my best guess of positioning you in bed for comfort may be the way in which you feel least comfortable.
If it were me in the bed, to tuck my bedding in tight at the foot, when in fact, I prefer to sleep with my feet uncovered, would be a problem. If I were the patient, such a thing would piss me off and stress me out on a good day and in my own bed. Multiply that stress by God-only- knows-how-much, when I am struggling with trauma and pain in a strange place, and the best intentions of a caregiver have now led to imposing suffering.
Are you picking up the importance of what I am laying down here?
It is so important for you to understand that those who love you will have a lot easier time following your concrete, written wishes than trying to guess what it is that you might want, only able to rely on a hope that they are right if the sh*t hits the fan.
As a wise and seasoned hospice nurse I know says, “Hope is not a plan.”
So, as hard as it is, I am challenging you to start thinking about this topic and what it means to you.
Please start discussing this issue with your family and friends. It’s not an easy task, I know.
But remember, the death rate is 100% and it’s not going to go away.
Chew on it for a bit and contemplate some of the questions that need to be answered:
Who would you want making these decision for you if you could not? Who do you feel you can trust most to honor your choices? Does this person/people feel they could, or would be willing to manage this responsibility?
In a future post I will offer some information on how to go about forming a written “When the Sh*t Hits the Fan Plan” and I’ll even send you to a place where your wishes can be granted.
Until then, please remember…
Love always wins…and so it goes.
“I know now that we never get over great losses; we absorb them, and they carve us into different, often kinder, creatures.”
― Gail Caldwell, Let’s Take the Long Way Home: A Memoir of Friendship
***This blog post is written in loving memory of Nathaniel Merrill, lifelong friend of our son, Casey. Nathaniel took his life on the morning of September 22, 2014. He was 20 years and 37 days young.***
“The Prettiest Village in Maine” of Wiscasset, the adjacent town of Boothbay, and the communities that surround them in Lincoln County, have undergone some serious tragic losses in a short 54 days. Casey Dalton, Keegan Spear, and Nathaniel Merrill; gone. All gone. Too fast, too soon, too young.
Deaths that occur as a result of drinking and driving, excessive alcohol and/or drug use, and by suicide, are horrific, seemingly senseless, and extremely traumatic. This, I feel, is magnified when those who die are so young. Add to that these boys were cousins and friends, and from such a small community, the effects become enormous to those who knew and loved them.
I do not offer these statements with ill will or judgment towards Casey, Keegan, or Nathaniel. Ages spanning 17 to 20, these boys were all living on the edge in many ways.
They were making some extreme, risky, and unsafe choices, however, their choices were no different than I often made earlier in my life; no different than others in my family or my friends have either. No different, I am sure, than many of their friends continue to make even today.
With each unsafe choice, with each death, statistically, comes more potential tragedy. Please help me now to lessen that potential.
Casey and Keegan died early in the morning hours on a Wednesday. Over the course of the next 2 days, different members of our family had been voicing their concerns to me of their worry about each other.
“Do you think he’ll be ok?”
“I am worried how she’ll make it through this.”
“What if this is too much for them to bear?”
On Friday night, just shy of 48 hours after Casey died, Rick and I gathered in New Gloucester, with the majority of our children and their partners, in the back yard of our daughter Lindsay and our son-on-law Chris. Chris had built a fire pit especially for our family get-together that night.
With the warm glow of the flames illuminating our faces, amidst the tears and laughter, a fog of uneasiness began to disperse amongst the group. The worries within our family for the welfare of where we would all go from there began to overshadow the moment.
As humans, we all have strengths, as well as needs, and potentially grave weaknesses. It remained to be seen, as a family, where this horrific tragedy would take us. We hoped for the best, but each, in our own perspective, had fears of the worst.
Shortly after I went inside, David, Casey’s oldest brother, followed me into the house. He told me he was concerned about Rick. He was worried that the heartache of losing Casey would be too great for Rick to bear. David asked me, with a look of desperation in his eyes, what he could do to help…what he could do to bring strength to our family; to Rick. I took David’s hand…asked him to follow me…and together we walked back outside to the fire pit.
It was in that moment the stifling fog of worry began to lift for all of us.
Around that fire we shared our vulnerability. It started with David’s expression of his concern for Rick, but it went on from there. We each recognized our feelings of helplessness and caring concerns for one another. We recognized out loud that every member of our family who sat around that fire has struggled with either depression, anxiety, substance abuse, or any combination of the 3, first hand. Sadly, I know that our family is not unique to this struggle.
As I have heard it so poignantly described, for some people, those behaviors will forever remain an ominous figure lurking in the shadows. A sinister villain watching and waiting for the moment of weakness that makes one yearn for the pain. It is battle that must be faced every day; or that we must watch our loved ones face every day. Some struggle more, some less; but I would dare say that it is rare, if not impossible, to find a human who is not touched in this way.
As the embers began to lightly flicker and the flames died down at the fire pit, the heaviness of the unspoken strain that had been amidst us started to lighten. We then made a vow to one another. We promised that no more loss would occur among us at our own hands; no one was to be lost for poor or desperate choices. Each and every person who sat by that fire promised to reach out their hand and ask for help before making a potentially lethal choice.
If you are reading this, you may have known Casey, Keegan, Nathaniel…or possibly all three. If not, you may know me…or someone in my family. Maybe you live in Wiscasset or Boothbay… or maybe you have just stumbled upon this blog by accident. Really it matters not how you got here, what matters is that you know I am speaking directly to you.
If you are reading this, you are not immune to loss or grief. You could be at risk for poor and potentially lethal choices if you are chemically impaired, depressed, and/or in crisis. Each and every one of us is potentially at risk because we are human.
So now, I say to you, who are reading this, promise along with us. Make a Fire Pit Vow.
Make a vow to yourself, to your loved ones, right now, to reach out for help when you need it. Ask your family, your friends, your neighbors, right now, to make that vow with you…before you suffer a loss…before you are in crisis.
We cannot prevent every tragedy. I am surely an optimist at my core, but I do not kid myself and think that we will end all drinking and driving, substance abuse, or suicide. But for every Fire Pit Vow that is made, we all stand a better chance to make it through together to live, and love, another day.
Love always wins…and so it goes.
For more information on Suicide Prevention and Mental Health: http://www.nimh.nih.gov/health/topics/index.shtml
For information on Substance Abuse: http://www.drugabuse.gov
Sunday was my goal for a second blog post. But it is now Monday, and I am past my deadline. My editor can be a hard ass, but I think she’ll understand considering the circumstances.
Battling with what to write about, I reviewed so many thoughts and ideas about quality of life, empathy, acceptance, tolerance, just to name a few. None are clicking. I promised myself that this would not turn into a “let me tell you about my grief, loss, and pain” blog.
Today I had the thought that struggling emotionally can be compared to being stuck in a blizzard or a hurricane. There is hunger, but I must use what is available to feed myself and those I love. Until the storm passes, I must simply use what I have. What is available in my emotional cupboard right now is mourning…sadness…sorrow. Pull up a chair and grab a plate.
I am truly struggling this week. Rick and I both are. When will seeing strawberries, the Celtics logo, or Casey’s number in our phone contacts no longer bring us to tears? We wonder when it will get better; when the pain won’t feel so deep and raw…and yet we fear that same moment when the sting will subside. Will it define a moment of obtaining some relief from our loss? Or does it signify a movement of Casey’s memory further into our past? For now, we make it through a moment at a time.
In the book The Prophet, by Khalil Gibran, the following passage offers thoughts about the relationship between sorrow and joy:
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.” But I say unto you, they are inseparable.
I know this to be true.
The picture you see at the beginning of this blog post is from Casey’s viewing. This was taken at the end, by me, as Casey’s siblings and partners still in attendance, were all saying goodbye to his earthly body for the last time. This picture captures the saddest, most difficult moment we have faced as a family; that most of us have faced as individuals.
But, look closely.
There is an undeniable aura of unconditional love and profound joy for the connection they share with each other, and will share eternally with their fallen brother. As tenacious dandelions make their way through the cracks in the asphalt, abounding love and joy will blossom from immeasurable loss.
I smiled wide as I took this photo and then began to sob. Rick came up beside me, gently put his arm around my shoulders, and we cried blended tears of joy and sorrow, together. Truly we wept for that which has been our delight; that which will remain our delight.
Love always wins. And so, it goes…