Thoughts At Large

Passionate thoughts on random topics

Category: pain

365 Paper Cuts

 

bleeding heart

“I have not failed. I’ve just found 10,000 ways that won’t work.”     ― Thomas A. Edison

It was one year ago tonight that my best friend died. God, it hurts to write that. It seems like a lifetime ago and also as if it happened last night. Not a day goes by that I don’t think of her. I rest my hand on her pillow every night before praying that sleep will gently take me away to her, but I never dream, about her or anything else. I have come a long way since that night in September, but in other ways, I feel I have never left that room. The kids and I have experienced the “year of firsts” without Lisa as if this is some magical milestone beyond which grief is forbidden to pass. I miss so much about her that my heart aches just thinking of the reasons.

I miss her laugh. I miss her smile. I miss her voice. I miss her nose. I miss her driving. I miss her honesty. I miss her eyes. I could go on for as long as my fingers can pass over this keyboard. Edison’s quote seem particularly applicable today because I don’t feel that I’ve survived one year without Lisa as much as I have endured 365 daily paper cuts without her that will never heal.

 

“Courage is being scared to death, but saddling up anyway.”     ― John Wayne

One thing I do not miss is the suffering she had to endure. I taped the above quote on the refrigerator of the house we rented in Texas during her first round of treatment. I put it on the fridge for her to see, but now I see that it was meant for me. From chemotherapy to surgery to radiation, she never questioned or hesitated. She enthusiastically embraced every option offered to her until her physician assistant (in tears) told her there were no more options. Lisa was prepared to do more, but medicine had failed her. I look back at that quote now and see that the courage I wanted her to embrace is now exactly what I must adopt to survive her death and carry on.

My brother was in the hospital recently for treatment of a minor infection. It was the first time I’d visited a hospital since Lisa’s death. I hadn’t given any thought to how visiting a hospital would affect me. It was just what you do when a family member is in the hospital. My children were both concerned how visiting the hospital would affect me. As soon as I walked through the doors, all of the emotions swarmed me. Fortunately, my brother was well enough to be discharged the next day. However, shortly after that, my mother in law was taken to the hospital because she bumped her head when she fell. It was nothing serious, she was only taken to the hospital due to a state regulated precautionary requirement, but it required me visiting another hospital in the same week. As I sat there with her, waiting for her discharge papers, I can’t tell you how much I wanted to get out of there. Nothing happens quickly in a hospital and the memories exposed while sitting there were not healthy. Everything took me back to Lisa and her seven years of treatment. After having called M.D. Anderson a second home during all of her cancer treatment, I can’t conceive of a situation where all of the hospital memories won’t come flooding back to hit me in the face. We knew every corner of that hospital and felt like unofficial ambassadors because we ended up helping newcomers so often. In the end, there was no longer anything they could do for her so we both went home where she would die. Thoughts of hospitals paralyze me now.

 

“Sometimes even to live is an act of courage.”     ― Seneca

Lisa’s suffering is over, and we’ve had a year to establish a life, living only with her memory. We have made progress because life goes on. The kids have graduated from college. We have moved back to Rhode Island. We live in a condo in an area we’re not familiar with but which is close enough to family and familiarity to provide some comfort. However, the idea of starting a life without her is at times challenging and at other times seemingly impossible. I still feel guilty for living. I feel guilty for never dreaming about her. I feel guilty for not making the most of this time with my kids, who will be gone this time next year. If our roles were reversed, I could imagine Lisa doing much better than I am now. I feel as if I’ve aged 50 years in the past 365 days. But life goes on, and I am trying to do the best I can. I hope the next year sees me and the kids continue to develop a new “normal” where we can laugh about the good times and not dwell on the bad; where we can think of Lisa as the beautiful, energetic whirlwind she was, full of flowing blond hair and a joie de vivre rather than the pained shell we saw at the end. I’ve survived 365 daily paper cuts without her. The wound will never heal but hopefully, the nerve endings will dull a bit. This week will be particularly strenuous. In addition to today’s commemoration, the kids’ birthday is Tuesday, and Lisa and my anniversary would have been Friday. At least I have the kids to lean on. I treasure my children and am so glad to have them around for the time that I do. They have gotten me this far. I can’t imagine where I’d be without them.

I’m ending this post with a poem by Hermann Hesse titled Stages. I hope you appreciate its message and hug your loved ones tighter today.

 

As every flower fades and as all youth

Departs, so life at every stage,

So every virtue, so our grasp of truth,

Blooms in its day and may not last forever.

Since life may summon us at every age

Be ready, heart, for parting, new endeavor,

Be ready bravely and without remorse

To find new light that old ties cannot give.

In all beginnings dwells a magic force

For guarding us and helping us to live.

Serenely let us move to distant places

And let no sentiments of home detain us.

The Cosmic Spirit seeks not to restrain us

But lifts us stage by stage to wider spaces.

If we accept a home of our own making,

Familiar habit makes for indolence.

We must prepare for parting and leave-taking

Or else remain the slave of permanence.

Even the hour of our death may send

Us speeding on to fresh and newer spaces,

And life may summon us to newer races.

So be it, heart: bid farewell without end.

Aaron’s Wishes for 2015

December 18, 2014

Hello. My name is Aaron. I am six years old. I am a second grade student in Miss Vasquez’s second grade class at John F. Kennedy Elementary School. Our class has been cutting out newspaper headlines all year and last week we had to go up to the board with each headline and put it under one of the headings we had created. When we were done, we had many headings, but only a few had lots of headlines under them. The heading with the most headlines under it was Fear. Under this heading we had headlines like Ebola, the shooting in Ferguson, the chokehold death in New York City, the police protests, the midterm elections, the open carry marches in Texas and the Bundy ranch standoff.


December 29, 2014

Fear is a paralyzing emotion and emotions are amazing things, but they cannot be the sole basis upon which decisions are made. For example, my mother’s grief often manifests itself in her binge eating, and while it may feel good enough in the moment, I’m sure you will agree that a pint of Ben and Jerry’s Phish Food does not a meal make. Nor does letting a dozen casseroles spoil in the refrigerator because she’s “not hungry” qualify as taking care of herself.

My wishes for 2015 are for fear to give way to reason, for paranoia to give way to compassion and for hatred to give way to understanding. These are my wishes because I am six years old and I will always be six years old. I will always be six years old because our neighbor gave in to fear and bought a gun and accidentally shot at his daughter when she came home late last week. Thankfully, he missed her, but there is a hole in my head where my right eye used to be and tomorrow morning Mommy will bury me.

Inhuman

PainPublilius Syrus in the first century B.C. wrote “when Fortune flatters, she does it to betray.” Plutarch reinterpreted this as “I see the cure is not worth the pain.” Somewhere over the past two thousand plus years we have lost the connection between humanity and the humane.

Setting religion aside and ignoring the politics and ethics of Dr. Kevorkian, it is, none the less, barbaric how we treat our loved ones at the end of their lives.

We have somehow bridged the moral abyss with compassion for our beloved pets by “humanely” putting our beloved pets out of their senseless misery, ending their meaningless pain, answering their pleading eyes with the selfless, heartrending compassion of euthanasia.

We have somehow sanitized capital punishment of the worst criminals from fatal and barbaric corporal punishment to a “humane” (although still debatably barbaric) dream-like sleep out of existence.

And yet, we allow our loved ones to face “natural” death filled with a fear, pain and confusion making anything that happened at Abu Ghraib look like Walt Disney World.

This suffering is multifaceted. Of course, there is the physical pain, which is no better controlled today than it was 50 years ago. The opioids still rule as the best we have to offer. The problem is that they are systemic, meaning that they travel throughout the entire body. If the pain is in the hip, the hip gets the morphine, but so, too, do the little finger, the ear lobe and the brain. The result is that the little finger and ear lobe are no better or worse, the hip suffers an incomplete relief of pain and the brain suffers the confusion, paranoia, nausea and narcolepsy unnecessary to treatment. This is the best medicine has to offer in 2014? The other suffering it brings is to the family members who must endure watching the physical suffering of those they love hampered by the incomplete relief of pain. Meaningless suffering is the worst kind. Love of another means the willingness to shoulder their burden. The helplessness felt by the family member watching their loved one jerk in pain or crying out as they try to move them or comfort them is an indelible stain on their soul.

The suicidal mission of cancer adds to the frustration. Bent on destroying its host, even at its own annihilation, cancer never rests. To paraphrase Siddhartha Mukherjee from his book The Emperor of All Maladies, cancer cuts the brake lines of some cells and jams the gas pedals of others, stopping the natural cell regulation process and sending the cancer cells into a proliferating frenzy steamrolling every other cell in its path. In his or her clearer moments, so too, the cancer patient undergoes a civil war; one side, engrained in all of us, pulls us to live, to continue fighting, while another force, armed with logic, understanding and ultimately love, forces the patient to begin facing the inevitable truth with no regrets and peace.

In his book Man’s Search for Meaning, concentration camp survivor and psychologist Victor Frankl describes inmates of the camps as surviving long stretches if they could find meaning in their suffering.  Some held on to the hope of outlasting the Nazis and returning to their loved ones (should any of them have survived), others found peace looking up at the sky and imagining conversations with their loved ones wherever they might then have been. Life was worth living if they held a kernel of meaning in their suffering.

I have searched and considered and yet find no meaning in the suffering loved ones endure at the end of their lives given the current state of medicine. Pain is pain and on a scale of 1 to 10, anything above a 1 means the medical field has failed. The root word of both humane and humanity is human, from the Latin humanus. However, we reserve those words for our treatment of pets and prisoners, not our loved ones. For them, and for ourselves, it is inhuman what we put them through, for them and for us it is nothing short of torture.