If you took a survey of 28 year-olds, results would show that most do not have experience with death, dying, or major illness of a parent or immediate family member. There are always outliers and exceptions, but the probability is low until generations age, and you yourself begin to grow and evolve.
Wintertime sunset over Channelside & Downtown Tampa
Sixteen months ago, I was with the majority of my cohort, never observing or processing sickness with a front row seat. I have avoided writing publicly about my mom’s cancer, because it isn’t the usual flavor of this blog. Up until now, I would have had nothing constructive to say about the experience.
However, as one does, I’ve gleaned a well of wisdom on ‘dealing’ with painful spectating, minor depression, and mediating others’ level of maturity and knowledge.
Without fail, several things will happen when the universe drops a bombshell like cancer on an otherwise healthy family, with a sketchy at best prognosis…
When your patient can’t leave the house, get her expensive socks
People will send cards and flowers. Notes of support and optimistically empty Hallmark sentiments. Our immediate family is eerily realistic, so the potential of near-term death was never ignored or veiled. And this freaked people out. Extended family, friends, medical professionals. I guess we’re all used to hearing Oprah-esque / cinematic / local news media’s blindly positive, fortified attitudes from anyone facing adversity.
But it happens every day, and that is what I kept thinking. People die all the time, suddenly or in drawn-out deterioration, like closing each program separately before being able to “Shut Down” for good. Death is not unique. To treat it as clandestine defies logic.
And yet, we’re pretty good at ignoring it.
Take Out is key during any illness – at Kelp Sushi Joint
Some of your friends and family will project their feelings onto you in broad strokes of pity. These are the awkward interactions. They cry, or hug a lot, and give you a lot of what you already have: sadness. Though I know they mean well, these people irritate me.
The friends you appreciate are the ones who offer smiles and step up to the ugliness of disease and ignore the fear they have in being around that. They ask you pertinent questions, let you talk and vent, and maybe most importantly, they maintain normalcy.
I believe we all fear the sadness we might absorb by associating with difficult, complex, or tragic situations. If you are highly emotional and empathetic, this can cause depression more easily than if just offering sympathy. However, sadness cannot be avoided or buried. Only felt and dealt with.
Strangely, I haven’t shed any major tears.
My role with the Gasparilla Art Show has proved challenging and fulfilling while I deal with great emotional stress
A few of my wise elder friends have shared their stories about dealing with a parent dying. Not to compound the sadness, but to offer lessons and practical suggestions. Be present. Enjoy each day. Simple acts matter more than grandiose gestures. Uncover the richness in loss. This is her journey, not yours. Etc. They know who they are, and I have the utmost respect and gratitude for their friendship.
Being the patient at the center of this drama, my mom has set the example of proper behavior. Manage each day at a time, relish the pleasant moments, and worry little about the future beyond tomorrow. Our family has fallen in line, followed by our dedicated, strong network of close family friends.
In managing healthcare itself, Jane is sharp and keen on meticulously recording her recent history, as well as the arc of medications she has taken and how she’s reacted to them. When a new doctor asks about her experience with pain, she can give them a near verbatim transcript.
Above all, it is still a heart-wrenching daily battle to watch your mom, and in my case a great cheerleader and teacher, be in pain and discomfort. It prevents her from sleeping properly, from eating enough. She does however doze a lot due to the powerful opioids, and of course she looks different (skinnier).
I was never a dog person, but any animal therapy is welcome when you feel blue.
If nothing else, cancer is a reserved seat for the bumpiest row on a wooden roller coaster. If it isn’t one problem, it’s another. One drug helps one problem while causing another, for which there is a second drug she can take, which may or may not cause a tertiary challenge.
Lucky for us and other Tampa-area cancer patents, Moffitt Cancer Hospital is nearby. As a major player in national and international cancer research and treatment, it’s truly the best place she could be. The level of professionalism is remarkable, from janitors to attending physicians, to hallway harp players.
Of course, no hospital is fun. If I wish for nothing else, I hope that any end-of-life arrangements are designed around our house and her bedroom, so that instead of being subjected to sterility, she can have familiarity, relative comfort, and the surroundings that make her the happiest.
Catharis: cleaning the bathroom for the first time in (??) months
As a healthy bystander, it forces a new perspective on life, living, and prioritizing life’s challenges.
Her struggle, at a modest 61 years old, has taught me that life is too short. Period.
No more vacuous stress or anxiety. No more societal or peer pressure to be or behave a certain way. No more bullshit.
In the last 16 months, and I assume until this saga is over with, I take great soulful pleasure in simple coping mechanisms:
- yoga or some form of meditation—Downtown Tampa’s Sunday Yoga in the Park is free and a fabulous way to cap a weekend before a busy work week
- mental health counseling—I began talking to Dr. Shana Stowitsky, Psy.D. about two months ago. I go about every two weeks, and have greatly enjoyed our conversations and rapport. Try her out if you have the need.
- an extensive Netflix queue. Escape is a powerful destressing tool. Lately I’ve watched: The Fall (Netflix original), Reckless, Twin Peaks, I Am Love, Election, G.B.F., and In A World.
- someone to keep you motivated. I started to seriously slack at the gym, so after the new year I invested in some personal training sessions with Driven Fit.
- cleaning—only my brother, parents, and some friends will grasp the importance of this development. I was never a cleaner, but lately the process of decluttering and purging settles my mind and lends a sense of order, if only temporarily.
- busy work. Though I have felt unmotivated to blog much, co-chairmanship of the Gasparilla Art Show and curation of Tampa’s first Makers Market (2/14/15) has kept my mind from idle depression.
- sleep. Careful with this one, but when your body is asking for more sleep, so your subconscious mind can process the overload of emotions and feelings, it’s best to give it what it wants.
- a reasonable amount of retail therapy. I have taken this too far, for which I am paying now, but there is value in good old fashioned retail therapy.
Pretty things don’t change the struggle, but they can distract from it temporarily
Thank you for reading, and thank you for being supporters of this blog, which is often my outlet. Please excuse this very personal post, though my sense is you’ll understand its necessity.
//AE
1 comment
Alex, this was so beautifully written and spot-on. I am moved by your candidness and particularly your poignant insight into small pleasures and what really matters. Jane would be so proud, I hope she got to read it. Love you.