Living and Dying and the Heartbeat in Between


We are so very busy in our daily lives, in our whirlpools of laundry, marathons of cooking and cleaning, always hurrying from one activity to the next, trying to stay afloat in the constant stream of work and family obligations. The assignments are constantly being crossed off our lists and newly added—dancing together like snowflakes, melting on our weary faces in tears of frustration—causing exhaustion, and only sometimes, satisfaction.  How many of us are able to resist the all-powerful pull of this enormous vortex, to stop for a second, a minute, a day, and enjoy the silence that is; to be brave enough to slow down, and evaluate the path we are on to see if it truly suits our soul; to forget the final destination for a second, and concentrate on the forget-me-nots lining our path?  Not many—very, very few, to be precise, and usually not because they choose to, but rather, because certain events in their lives or certain illnesses force them to.  Some of those events are beautiful and very clearly a blessing (or what we view as an open blessing), but many are very clearly not a blessing of any sort, or at least not one we recognize as such.  And yet, there are people who are able to go on finding inner strength and courage, patience and resilience to face whatever it is that was sent their way, and they are true heroes of our time.

I work with hospice patients and patients with complex chronic conditions on a daily basis, and it’s amazing to see how clearly most of them see the reality around them and how much appreciation they have for the “small things”—a day without pain, an outing they were looking forward to, the visit from a loved one, the blooming of a favorite flower, a well-loved song on the radio. All of these fill their time with meaning, and their hearts with the knowledge, that this particular day was well-lived.  Of course, not everyone is so “enlightened” just because something difficult and, at times, very tragic is happening in their lives, but it seems that many people who are going through hardships do, in fact, became much more aware of the “simple pleasures” that fill our lives and which we remain blind to most of the time.

I’ve been working with hospice patients for a while, and people always ask me if I find it difficult to do my job and how I can cope with constant sadness.  People assume that sadness is the prevailing mood in these patients’ homes.  I won’t lie to you—it’s not an easy job, but it’s not always sadness that I see.  We are all, every single one of us, in the process of dying.  The difference between a “regular” person and the person with a terminal illness is that the person with the terminal illness understands that there is a very strong possibility that death will arrive sooner than expected, and the “regular” person is hoping that it is very far away.  I think what these life-altering events do is shake up our preconceived notion of what is important and what is not, and in general, make us question everything that we tend to accept at face value.  There is a huge difference between truly living and barely surviving, and it seems that many people are so burdened by everyday mundane grayness that they are barely surviving, even if they walk this earth disease-free for the next 120 years.  I am not sure that’s really living, in the grand scheme of things.  What I have learned from my amazing patients is that, at times, one day may be more filled with meaning and more fulfilling than 20 years of grayness.

Why am I telling you all of this? It’s not earth-shattering information that I am sharing.  The reason I am bringing this to your attention is that we, as a society, tend to abandon our dying patients.  We are very eager to be their support system and their team when they are in the process of fighting their disease, but once the game has been played, we tend to shy away from them and leave them to their own devices.  Patients tell me that people who were their biggest cheerleaders all of a sudden stop coming by, and rarely call, and their doctors, who led their care throughout, at some point refer them to hospice, and then often stop all contact as well.  Patients feel very confused, and at times abandoned, by this sudden void in their support system.

Why do we do it?  I think the biggest reason is that we are terrified of what they are going through, and we are unable to watch it. It is too hard for us to be there and hold space for them without internalizing all the pain or imagining that it’s happening to us. Or perhaps we are having some degree of survivor’s guilt or some very unrealistic and grandeur notion that we could’ve saved them in some way and were unable to do so. Or perhaps we are just so busy with our everyday vortex of checklists and obligations that we simply have no time to slow down and spend time with our loved ones who are no longer running in this endless rat-race.  I am here to tell you that it’s a great pity, as they have so much to teach us, such wisdom to bestow on a patient observer, that I am often blown away by the depth and degree of their wisdom and pure strength of spirit.

I am a true believer that our life grants us a few timeless moments—birth, major milestones and infinite and yet-so-fleeting moments of pure bliss and death.  All these are natural events in the kaleidoscope of life, and all of them have their own beauty.  We, as a society, are much more aware of the needs of birthing mothers; we value doulas as a worthy and very rewarding profession, we have training classes of how best to support one’s wife and daughter through birth, we do birth parties and celebrate the beginning of life, as birth truly is an open blessing at its best.  Yet, we don’t think that our dying patients deserve the same?  They too deserve emotional and physical support, be it from their loved ones or from hired help. They too yearn to celebrate their life, if not in an open celebration, then in a quiet acknowledgement by their loved ones of their life achievements.  They too need to feel that they matter not as “winners” or “losers” in whichever game their disease was playing, (such epitaphs are cheap imitations of their worth and truly do not describe the complexity of the disease process and its interaction with the person’s true being,) but as human beings who walked this earth, and whose wisdom is priceless fruit that is dropping to the ground, without anyone noticing or picking it up.

Now that I have hopefully convinced you of the value of spending time with someone who is nearer to the gates of Heaven than you are, your next question will probably be: “What should I talk about?”  It seems that somewhere along our development into a very technologically advanced and institution-preoccupied society, we lost the simple wisdom of the old days; we lost our ability to comfort and replaced that lost ability with endless chatter about mundane things or needless advice or endless desire to “solve all problems”.  What I’ve learned throughout the years of working with dying patients, and having personal experience with losing a loved one, is that it’s not specific words that matter, but the silence between them, the being there, the holding space.  They don’t need our rendition of what our cat ate for breakfast or how talented our offspring is (unless they specifically asked for it and the said offspring is related to them), but rather, the space and validation to just be and feel whatever it is that they are feeling that day, which may not always be roses and pearls of wisdom.  To sit with someone in comfortable, easy silence is a truly a gift of enormous proportions.  No one should be alone in birth, and no one should be alone in death, be that loneliness physical or emotional.  Entering this world, and leaving it, should happen in dignity and as much beauty as possible.

I guess what I am trying to say, in a rather long and convoluted manner, is that the process of dying is full of its own beauty, the one we fear and are not willing to face or acknowledge, and yet the one that will inevitably come to each and every one of us.  May our days be long and happy, our years healthy and full of meaning, and not just mundane whirlpools of “stuff done”. May our eyes be open to beauty in all its shapes and sizes and variations, and our hearts open to human touch that is truly the essence and the cornerstone of our existence.