Gear Shifting

I believe I’m ready.

While I‘ve always felt strong enough to write about many of the times MK and I shared during our healthy lives, I’ve pretty much avoided talking about the ménage à trois that was our lives once brain cancer joined us.

Now, armed tonight with a delicious glass of 2011 Ballentine Vineyard‘s St. Helena Petit Verdot, I think I’m prepared to begin to tiptoe into the years of her war — the fourteen plus she was fighting her disease and address what became of our lives post-diagnosis. I purposely typed ‘became’ and not ‘impacted’. Cancer doesn’t impact, it changes. From day one, it changed every single, individual aspect of our lives.

Like the plague, I also avoid the popular ‘new normal’. Why? Because living such a changed life is nowhere near anyone’s idea of normal. Rather, such a diagnosis plasters an entirely different life upon you as a couple. With one word, the switch is flicked, and you enter a whole different reality.

You should know when I write I won’t be simply recounting those days. Instead I’ll be describing how this reality taught me new lessons on how to manage continuing to live.

I also need to say, up front, I fully acknowlege each patient, each tumor, every cancer, is unique and that patient’s alone. Likewise each caregiver’s path is different, just as is their patient’s. Consequently, I’ll be talking about our lessons and experiences, not those of the universe of cancer patients nor the geosynchronous orbiting world of their caregivers.

The most critical lesson I learned was the power of true love. I’ve been known to say “I was only married to one woman, but to two different people.” We were lucky to ever find one another in the first place let alone fall head-over-heels in love. Quickly our love made us a formidable team, which lasted for the first 2/3s of our lives together. Over the last 1/3 our love deepened significantly. During MK’s war our love for each other took on unexpected, new, and at times crazy dimensions.

The other lessons I‘ll be writing about are:

Strength: Understanding your patient’s strength, your personal strength as a caregiver, and the unforeseen capacities of your strength achieved only as a couple;

Isolation: The often strangling, suffocating, overwhelming isolation that accompanies chronic illness for the sufferer and in different ways for their caregiver;

Family: Crucial, amazing, confounding;

Second guessing/being second guessed: Every, single, solitary decision;

Houses of Cards: Managing in the times of caregiving;

Waiting: Worse than knowing;

Friendship; Its powerful value to both patient and caregiver;

Bromides: Shove them all where the sun don’t shine;

Decisions: They cannot wait;

Critical vs. everything else: Dust bunnies can be fine pets;

The Reverend Dr. Martin Luther King’s quote: “In the end, we will remember not the words of our enemies, but the silence of our friends“;

and

Caregiving. The toughest job I never applied for.

More will be added as I begin to drop back into the kaleidoscopic world of those years. I promise no bullshit, no bromides, and no advice. Just an honest look at our love and the lessons I learned from the tremendous person I was able to support in her horrific war.

Finals thought here: I will be posting only older photographs of MK, etc., here since MK asked me to never post pictures of her when she was ill.  I also ask that you not misinterpret my reflections as whining. All too often, as a caregiver ,when asked ‘how are you?’ if I actually answered truthfully I was told I shouldn’t whine. Kindly don’t confuse my being honest with whining.

Stay tuned…

* Because love brought me to wine and right now I need to talk more about love than wine.