Live Like You Were Dying

Live Like You Were Dying

Tim McGraw had a hit country song a number of years ago with this title. If you haven’t heard it, the gist of it is a person in their “early forties, with a lot of life before me…” who is told that they are terminally ill. The song then says, “ I asked him when it sank in,
that this might really be the real end, ‘How’s it hit you when get that kind of news? Man, what’d ya do?’ ”

The man responds, “I went sky diving, and Rocky Mountain climbing. I went 2.7 seconds on a bull named Fu Man Chu, and I loved deeper and I spoke sweeter and I gave forgiveness I’d been denying…and he said someday I hope you get the chance to live like you were dying.”

The song came to me after a morning conversation with Mark. I was rolling cigarettes – one of my longstanding vices – and reflecting on a million different things that were plaguing my mind this particular morning. Each and every thought was carefully designed to get under my skin and irritate, and weighty enough to put a drag in my step, with burrs under the saddle. Yet as each thought presented itself through the crowd gate onto the stage of my mind, I evaluated each one by the measure of my life. Will this matter in a year? In five years? In ten years? When I’m dead? And some of the things that are looming so large right now I could see would be reduced to a mere experience, through which I would no doubt live, survive, and in most cases, thrive in spite of it. And so one by one they were dismissed to go and take a number and get in line. As I filled the tobacco chamber and cranked the handle over and again, I said to Mark, “You know, I feel like I’m dying.” He looked up at me concerned, and asked, “You feelin’ okay, hon?”

“Oh, yes…I feel physically fine,” I told him honestly. I do go in every year or so to the doc for a State-of-My-Nation exam, and despite the cigarettes have come through with cholesterol, blood pressure and my “numbers” all in the healthy-as-a-horse zone. It wasn’t about my physical health. It was more about my mental health, and my spiritual health at the moment. I explained that I was having a little epiphany about life– and what matters most. And I was wondering whether this is normal or not – to start to see everything in the light I was casting on it. Yes – it’s kind of important to pay your bills, and keep the house clean, and take care of the kids’ issues. But realistically, what if I were dying? What if I had made the trip to the clinic this year only to hear that something is not right? That there is nothing they can do about it, and that I had better put my house in order. How then would I feel about the tires and lights that need to be replaced on our vehicles? How does that weigh out against a Christmas tree and presents under it, (of which there are currently none of the above)? If I am living just for today, then Christmas be damned – we must have street legal vehicles. On the other hand, if I am leaving the planet in the spring, the piece of tin can wait until after I see the smile on my kids faces when we decorate the tree, and open presents.

I’ve gotten to a point where this is the perspective I must judge and live my life from, which can be summed up as “What matters most in the long run”.  And it was sometime around then that the song popped in my head, and I got to thinking about what in my life has brought me to this philosophical point. And after a particularly rough morning with Phil, I had my answer. It was all coming from my relationship with my beloved son, Philip, courtesy of his dread disease, Duchenne Muscular Dystrophy. (Kind of a sad commentary on ME for not having picked this up with a whole ball-team of healthy kids…but no). It took that day in the doctor’s office that we all dread: When the news is not good.

We Duchenne parents get the kick in the head early on, and are left with years to pick up the pieces of our shattered dreams. We are told what to expect in the vaguest of terms. It’s one thing to know that your child will lose muscles; they don’t tell you what that looks like as they struggle to get food in their mouths. It’s one thing to know that they will require 24/7 care; quite another to watch your home turn into a hospice. It’s one thing to enroll your baby in the state run Birth-to-Three program; another reality altogether to try and understand the mood swings and temperamental outbursts of a teenage boy who has no social life and can do nothing for himself. And contemplating how I can help my son this very day with some of the things he struggles with, I had a further eye-opener.

It started later that day, when on one of the Duchenne websites of which I am a member, a parent posted a picture of their boy, who recently passed away. His eyes were so bright, but his body so broken. Phil saw the picture and I read the eulogy to him. “He’s dead now?” he finally asked quietly. “Yeah…” was all I could manage. My stomach kind of knotted up as I realized I probably should not have told Phil about this, or shown him the picture. And in a moment that could only be replicated in the movies, I suddenly GOT the big picture. I suddenly understood some more of what I will have to work with for what will be an indeterminate amount of time.

Phil, I believe, has yet to come to the conscious idea that he is dying. Yes, we all are, I know! We all get our time in the box, and we don’t know when. But all things being equal, his body is just not designed to hold out for the amount of years we are taught to be a full lifetime. And I was struck by the unfairness of it all – not so much the fact of the disease, but the revelation of the logical conclusion of it.

When one among us is examined and found to have some condition that is incompatible with life, we indulge in what is only the normal human response: We grieve. We listen to the verdict. We seek out options and opinions. We call our loved ones, who come along side of us to cry with us, hope with us, reminisce with us, plan with us, and bring us casseroles.  And like the man in the song, we can decide what to do with the time that remains.

Now I think of my son. I’ve known the end result of Duchenne for many years now. He has yet to fully realize it. And there won’t be a day when he sits down with his physician and he gets the sentence he doesn’t want or deserve. There will only be a moment in his mind when it all comes together, and he comes to the horrific realization of where his life is headed. He won’t be able to call his mother, or his best friend and tell them that he just got the news that he is terminal. There won’t be a rallying of support from those who find out. There won’t be cards or casseroles. No one will know that in the quiet of the night, he suddenly understands the truth of the matter. Will I be understanding as he cusses and swears the next morning as we wrestle his pants on about how he hates everything, from getting out of bed to the fact that he is crippled? Or will I offer him the standard, “Come on, kid…you know you have to go to school today. I didn’t want to get up either, but we gotta do what we gotta do.” Imagine getting that response if it were YOU finding out your body has turned on you?

ME: “I just called to tell you that I have a terminal disease. The doctors can’t do anything, and it’s all down hill from here. Sniff, sniff.”  

FRIEND: “Oh. Well, that sucks, but let me tell you, having arthritis is no picnic either. By the way, will you drive the girls to dance class this week?”

No, not fair at all. With a date on the calendar, we can now mark time, plan our Rocky Mountain climb and bull ride. We can wander through the five stages of grief at will, and everyone will try and understand, while secretly wondering what they would do if they were in our shoes. All will be forgiven, and therapy will ensue, as we try to tie up any loose ends, and live for the moment, to leave something behind, to make of our life something meaningful and rich; to be remembered.

With no announcement, no ceremony, no date, no rite of passage, my son will be left to himself to navigate this path. More than likely, all of his caregivers (including ME!) will undoubtedly try to steer clear of the subject of his mortality, and not allow him to speak freely about it, steering the conversation with a more positive spin or pre-empting it altogether with happy little bits of misinformation about that not being something that we need to worry about. Easy for us to say.

And so what’s a mother to do? How do you prepare for an event that will have no herald to announce it, no set course once it arrives, no set of rules by which to govern oneself during its stay, and which you will have no idea when it has made its peace?

I have figured out over the course of time, that there is no one way to handle any of this. It’s a wake up and punt on a daily basis. It’s a question I ask myself every morning, “What do I have in my hand?” How far can I stretch the resources that I have? And from basically the same answer for a number of years, I have concluded thus: Being of sound mind and body and spirit myself, I have been wandering in this Pointless Forest now for just over nine years. I have looked around enough to know what’s here, and the light has filtered through the pointed trees enough for me to start to understand the implications of what is here. This last insult of spinal fusion has served to further clarify the purpose and intent of the disease, and allowed me to examine up close and personally the nature of the beast. It’s purpose is to steal, kill, and destroy.

In the midst of all the swirling negatives, however, it has also afforded me the opportunity to reexamine my faith and the stubbornness within me that will not go down without a fight. To come to an understanding that everything has a point, even if I do not understand. And that just the fact that I am here ahead of Phil is an ace up my sleeve, and that as he is closing in on this forest on his journey through life, if I will listen very carefully, I will hear him when he arrives. And when he does, I will hear the terrified cry of his heart, and be there to wrap my arms around him and tell him it’s okay – that I am here, and that I will be with him no matter what. That we are in this together, and I will never let him go. That as the road gets harder to navigate, I will be there to help him along. He will never be alone.

I can make sure that he never succumbs to wallow in self pity – and to help him see that his life is still worth living – and if this monster seeks to cut it short, then by god we’d better start living! We can take that trip to the zoo. We can go see the Harlem Globetrotters. We can go hunting with USSA. We can decide on a day to day basis what we want to do with this life. It’s all that we have right now – what do we choose to do with it? I can look at anything that crops up in life, and instead of taking a pass on things because I deem them too much of a hassle, I could see them as the hassle that will bring the best of memories to our life and times. Because all of life boils down to what we do with our time, represented in the end only as a dash between the dates on a tombstone anyway. It’s all just what we experience – what we do with what we have, and truly – nothing more. And today I realize that we already have the chance that the songwriter wishes for us: To live like we were dying.