In the past, I’ve made the analogy of how my wife Nicole’s life-long battle with T1D and decade-long gambit with kidney failure is similar to chess. In a recent blog post I said how her current health circumstances were like being in the end game without a Queen.
And like in chess, you can reach an endgame where you have too few pieces on the board in that you cannot possibly win. You can keep the game going, dodging your opponents attack and making him chase you around the board. But that’s no fun, and only prolongs the inevitable demise of your king. Most players will resign and start a new game.
Well, that is more or less what Nicole has decided to do.
Her, my son Jonah and I will land in Mexico on Dec 29th. Jonah and I will be returning some time between Jan 14th and Jan 31st. Nicole (barring a miracle) will not be returning.
Nicole has decided to use the $10K raised for her dental surgery (which is still $40,000 short of the goal) to travel to Mexico. There she’ll have a week-long vacation (as best she can), staying at a friend’s home in the mountains, while receiving dialysis at a nearby clinic. On January 5th she’ll receive her final dialysis treatment.
From that point forward she will stop eating food and let nature take its course. The dying process is expected to take anywhere from 4 to 14 days. She’s arranging for cremation in Mexico. There will be a memorial service some time after Jonah and I return with the ashes.
I don’t really agree with her decision but — knowing how much she suffers on a day-to-day basis, with her condition only getting worse — I also do not disagree. There is even some question whether she’ll make it to January.
She feels confident and at peace (80% of the time) about the decision. She has undergone a lot of very painful treatments to keep herself here this long. She says she’s just too tired to keep going.
She feels that Jonah’s (more or less) grown up and bursting with independence (relative to his poor vision). For example, now he’s acting and performing music on the big stage in a professional acting company.
The last year has been particularly rough. Nicole’s losing more and more mobility due to heart, blood pressure and feet problems. She’s having coughing attacks throughout the day and night. She collapses after eating food due to low blood pressure and can only consume 1-2 meals a day. In order to keep her stable she is having as many as five to six dialysis treatments a week. Notwithstanding, these treatments are not proving as effective at removing fluid.
Failed kidneys no longer have the ability to convert vitamin D into an active form. As a result, Nicole’s calcium levels have dropped below the normal range. This causes high sodium levels in the cells. And that causes a host of problems including heart failure.
She doesn’t want a traumatic death or debilitating stroke. She’s had too many close calls in emergency rooms and feels her luck is about to run out. She’d rather pass away peacefully in a Mexican retreat, in a regular bed or out in the warm sunlight in the gardens — not on some stretcher racing to a hospital in an ambulance.
Despite the success we have seen with improving her condition (including increasing urine output and regenerating infected and damaged feet) it has been very much 5 hard steps forward and 4 easy steps back. Nicole would rather put her remaining energy towards emotional, mental and spiritual healing, rather than trying to fix a body that is dependent on a machine to keep her alive and only partially functional.
From our previous experience and talking to palliative care, as long as she doesn’t eat food when she stops dialysis, there is almost no suffering or pain.
We don’t feel stopping dialysis is “suicide.” It’s just letting nature take its course. Who knows, if she just fasts and stops dialysis, maybe she’ll get better?
We are letting everybody know who donated towards her dental surgery that the surgery will not be happening. If you would like your donation back, just let us know, and we’ll refund you immediately. Otherwise, the money will go towards paying for the one-way “hospice trip” to Mexico and related funeral expenses.
I plan on continuing to post to Diabetic Dharma for the purpose of eventually compiling all the entries into a book. It will tell of Nicole’s story, and the results of our experiments (successful and not) in dealing with T1D and its many complications.
I’ll also keep you posted (as best I can) on how Nicole’s final adventure in Mexico unfolds. She is trying to keep an optimistic and humourous perspective to what awaits her on the other side. In particular she finds this clip of Robin Williams from the movie Patch Adams very helpful.
Part of me still cannot believe this is how her Diabetic Dharma Story will end. But as a wise man once told me: “If it’s not a happy ending, then it’s probably not the ending.” Nicole wishes to bravely and consciously pass onto what awaits all of us one day when the impermanence of physical life takes hold. Having reviewed over a hundred near-death experiences, I think we can safely assume that the adventure continues.
One thing is for certain: Soon, all too soon, Nicole will no longer have type-1 diabetes. As hard as her cure may be to accept, it will certainly provide a freedom she has not known since she was a little girl.
Thinking outside the T1D Matrix,
John C. A. Manley
