A Moment Of Spiritual Perspective

A very important aspect of Jacquelynn’s treatment, and stressed by Dr. Ross, is finding your spiritual peace.  It has been proven more times than can ever be reiterated in the space I have here that worrying and fearing and stressing over your health has an inevitable and profound effect, causing a continued downward spiral.  The return to health simply can NOT happen if you’re spending your energy wallowing in your illness.

Our faith is something with which we are very comfortable.  I almost typed “which we take very seriously”, but honestly, I believe that humor is inseparable from faith.  If you’re too damned serious all the time, life and faith are both going to be pretty dour.  We are decidedly NOT what anyone would call religious people, but we do have our faith, and it is very important to us.

So you’ll understand what I mean when I say that, in as non-denominational a way as possible, I had on Monday a ”religious” experience second to none in my life.

I’ve been cleaning what used to be “my room” (Jacquelynn and I kept separate bedrooms up until last winter when she needed me there at all times, and quickly became permanent), sorting and organizing while preparing the room to once again become my writing space, and to double as a guest room when friends or family come to visit, as so many have recently been volunteering to do.  Much though it sometimes seems as though we’re out on an island here, I really do have a tremendous circle of love in my life, and I am inexpressibly grateful.

While cleaning, I’ve also been listening to music on my phone, it sitting on the bureau behind me as I sit on the floor at the closet door, rotating randomly through all the 2000+ tracks randomly.

Taken from the advice of Abraham*, one of the habits I’ve developed over the last few years is keeping what is called a “Magical Wishing Box”.   In this box, actually a repurposed and very ornate Christmas cookie tin, I keep my wishes. Only the very most important wishes go in, writ bold on a piece of notepaper, and when I close the box, I recite “That which is contained in this box IS”.  This is a very prayerful and meditative ritual for me, and that wording is repeated on the handmade label on the lid of the box.

I was casually sorting through a pile of things next to the closet door, and the wishing box was atop that pile. Playing in the background was a very good Neil Diamond song, but I wasn’t paying the sharpest attention to it. It wasn’t until I picked up the wishing box and opened it, and my eyes fell upon the largest of the two pieces of paper in the box that the music really caught my attention. Neil had gone silent, and at the very instant that my eyes beheld the paper reading “FULL HEALTH FOR JACQUELYNN”, the musical lead-in for Louis Armstrong’s “What A Wonderful World” began.

At. Precisely. That. Instant.

This is, to my ears, the loveliest and most special and hopeful song I have ever heard. It has, for many years, meant beauty, peace, and contentment to me, and hearing it at that very moment as I read my wish-note, resonated and echoed in my mind and heart in giant, sky-high letters as

EVERYTHING IS GOING TO BE PERFECTLY OKAY.

It took several moments for the flood of joyful and grateful tears to slow, as I wept and hugged the box to my chest. Afterward, I checked my fitness watch to find my heart rate slowly coming down from 107 bpm.

 

I’m still reeling, and still overflowing with joy and gratitude.

 

It’s rare, this kind of profound experience. Rare and not to be ignored.  I go forward today with a renewed and vibrant confidence.  I no longer have doubt and fear, I have banished uncertainty and replaced it with full confidence and unshakable faith.  We ARE on the path to full health, and we will not waver from it.

 

*From “Ask And It Is Given” by Esther and Jerry Hicks

 

Supporting vs Helping

Recently, I joined a virtual support group for dementia caregivers on Facebook. I did this for a few reasons.

  • 1) An honest desire for support. While I do have a few friends and family members who will listen to me and offer a kind ear, it’s very different than talking with people going through their version of the same thing you are. Even though my eldest sister was our Mom’s caregiver for years, the last year or so of which was colored by her growing dementia, I feel as though I’m dredging up things she’s working to get past when I discuss it with her.
  • 2) A hope to be of service. While getting help is terrific, nothing is more fulfilling than actually being of help to someone in need.   In this group, I figured I would be able to reach out and touch lives with compassion and love.
  • 3) Lastly, I wanted to expose the group to the fact that a dementia or Alzheimer’s diagnosis is not the inarguable death sentence that many (most) doctors will tell you it is.   Jacquelynn is recovering from this diagnosis, and so can many of them, potentially.

The first two of these goals have been met and were almost instantly upon joining. This is an extremely compassionate and empathetic group, and everyone is always eager to offer love, advice, and prayers wherever needed.

However, I have been frankly shocked by the responses I’ve received upon mentioning the possibility of recovery. Yes, a couple of people have asked for details and links, but by and large, I’ve encountered everything from indifference to criticism and vitriol. I’ve had comments deleted and gotten “angry” emojis.

Why?

This experience brought to mind something that happened just after Jacquelynn and I returned from Savannah after our first appointment with Dr. Ross to get her started on the Bredesen Protocol. I have a close friend who is caregiver for her mother, also an Alzheimer’s patient, although much farther along than Jacquelynn was. When this friend saw the list of supplements we had been prescribed, the response was a disbelieving “THIS IS FOR ALZHEIMER’S?”, and I haven’t heard directly from them since, save in rare and curt response to something I post on Facebook.

At first, I thought perhaps I had said or done something wrong, but it occurred to me that it probably wasn’t me. While I don’t for one second think they or anyone else wish ill for Jacquelynn, I do think it possible that they reject the idea of recovery for several reasons.

One of those reasons may be guilt. Perhaps they feel they missed something and feel as though they’ve let down their loved one by not researching alternatives.

Another possibility is fear: I spoke to a dear friend recently whose friend has a mother recently diagnosed with dementia. The very concept of restricting her mother’s diet and working to help her is anathema to this woman. Her mom has a terrible sweet tooth, so restricting sugars is out of the question.   Out of whose question?   Are you truly so desperately afraid to upset your mother that you’d rather just let her wither and die, possibly over several years serving as her only caregiver and destroying your life as well, than to at least make an effort? Survival is work, for God’s sake, even for the healthiest among us.

Largely, though, I think it’s a result of an out-of-hand rejection of anything outside the medical mainstream. Their doctors have been telling them, and the media in all its myriad forms perpetuates it, that there is no treatment, no hope, and no future.   More money is spent each year on breast implants, one popular meme will tell you, than on Alzheimer’s research.   This mindset, fertilized by doctors and the useless monotasking medications they’re all so eager to prescribe, can only grow despair and hopelessness. It’s only crop is death, and we’re told only that “we’ll do everything we can for you until the end” because endings are so much easier to imagine than hope.

Doom-and-gloom is the fuel of desperation, and no hope ever grew from it.   I only wish to sow the seeds of hope, to enlighten people that there are alternatives to withering away despondently toward an inevitable and miserable end.

This is human existence, and not a single one of us is getting out of it alive. In the meantime, however, life is meant to be lived, and there IS hope for those with the courage to reach for it. PLEASE don’t reject hope out-of-hand. You haven’t failed your loved one, you’ve worked and sweated and sacrificed for them just as they have for you. Research.   Inquire. BEG for help.

I don’t consider myself or my dedication extraordinary. I’m a normal human desperate to save his wife, who is just as desperate to save herself. We’re a team, and we believe in our goal and its success. My purpose is not to elevate myself as some voice of authority, but merely to open eyes to the fact that there are alternatives, and Dr. Dale Bredesen has more time and commitment invested in this goal than any other single doctor on the planet, and the results he and his team are seeing are nothing short of miraculous. Eventually, mainstream medicine will be forced to accept and endorse his protocols, but can you afford to wait for that to happen? I know we couldn’t, and I’m damned glad we didn’t.

I thought long and hard about leaving the support group out of sheer frustration, but that would be quitting. As I said earlier, I’ve had a couple of requests for more information, and if that leads someone to seek help while it’s still possible than I’m elated to have served. So, I’ll be staying, learning, asking, and sharing in any way that service dictates.

I’ll be doing what little I may to save lives.

Please continue to follow and share these posts. Please do your part to help save lives that so many have already given up on.

Am I Who I Think I Am? Does It Even Matter?

Newsflash: I’m human.   I mean very human. I’m imperfect and flawed in ways I don’t even fucking want to talk about.

And every day, this situation brings them up and slaps me in the face with them, highlighting them in ways I never imagined. I stand exposed and emasculated at my million little failures, seeming to dance a vicious and taunting ballet of shortcomings and mistakes.

Often, I begin to retreat into myself. “I shouldn’t even try”, I curse to myself.  “I should just serve and shut up, not even try to communicate or deal with her socially.  It’s the only way to avoid being misunderstood and inadvertently hurting her feelings.”

Of course, I know that it is only by constantly communicating and engaging her that I have managed to pull her out of her shell, to engage parts of her brain as she regains access to them and to energize and excite the healing process, thereby accelerating and optimizing her usage of that most amazing tool she was born with.

I know these things, and I am beyond committed to continuing on course.

But still, I feel so small, so horrible and cruel when I make her cry.   It was certainly not intended, and seeing her in pain (especially when I am the cause of that pain!) tears the heart from me.  But I should know by now, right?   I should fucking KNOW how easily a remark can be misheard or misunderstood.  I should god damn well be able to predict and prevent most of these incidents.

Could it possibly be that some small, vicious part of me is doing this on purpose?

Fuck, I hope not.  I hope I’m not that person anymore.  I’ve worked so fucking hard to not be that person anymore.

**********

On a much brighter note, there is more and mounting evidence of her undeniable improvement.  Yesterday was shower day.  You may know that I have, since approximately last March, taken complete responsibility for showering Jacquelynn.  She essentially stands there, trusting me without question as I wash her hair, get her all cleaned and primped, and dry her off.  Then she sits calmly as I comb and dry her hair, doing what I can within my (very narrow) limits to brush and style her hair as best I can.

This is our common and very familiar routine, as this process has evolved over 3 or 4 showers every week since last February.

Until this last week.

Gradually, over the last two or three showers, Jacquelynn has begun taking a more active role in her showers.  She’s twisting herself into position to rinse herself more effectively; taking a towel and working to dry herself, especially her hair; even running her fingers through her hair to measure moisture as I work to dry it.

 

Honestly, Jacquelynn’s courageous and miraculous journey amazes me every day. I took her aside this afternoon specifically to make certain she knew how indescribably proud of her I am.  Her incredible strength and bravery in facing this illness inspires me every day to strive to be all that she needs me to be.  As I stated above, I inevitably fail, but I will never stop trying, and I will never abandon her.  Nor will I ever trust her care to anyone else.

Yes, we cry.  We both occasionally hurt one another’s feelings.  We get angry and we calm down and make up.

We are married, after all.

Such is life, and we are completely succeeding at life and at love.

Two Thousand Seventeen Is Gone; Long Live Two Thousand Eighteen

It’s Twenty Eighteen, and I want to thank you all for the gift of your time and attention these past months. Those are the only things you can never recoup, and to give so freely of them to this blog is a staggering gift. I will do my very best to continue to earn it.

As her improvement grows, Jacquelynn is coming more and more into herself. As her self-awareness grows, she becomes, well, more her. The woman I fell in love with was a focused, determined professional woman with no patience with weakness, most especially her own. While this can render her almost furious with herself (and occasionally me) when she struggles with expressing herself, this falls mostly and in a very large way firmly in the “benefit” category.

Where before she loved her walks, she has resisted riding the recumbent stationary bike I purchased for her last September (at her request).   This resistance was at least partially because she was uncomfortable climbing on and off of it. Her improving coordination plays some part in the new willingness and eagerness to get on board. She is renewing her complete dedication to full recovery and getting sufficient exercise plays a key role in that recovery.

She’s also enjoying a renewed interest in quizzing with the flash cards we purchased for her a few weeks back. She asked me to quiz her today, after waffling and putting it off recently. The results were, frankly, shocking. When last we went through the deck of 52 images, two for each letter of the alphabet, several weeks ago she had a lot of difficulty coming up with the correct word, scoring on just short of half the deck (22 cards). Today, it was only necessary to set aside and come back to 8 cards, and she was successful on the second attempt on all but three of those. That is, by any measure, an incredible improvement, especially considering that she hasn’t played with or leafed through the decks even once in the interim.

As I was attempting to write the rest of this post, I realized that all I was doing was re-writing something I’d already posted on my personal Facebook page.   So, with respect, I’m simply going to share here what I’ve already posted publicly, mildly edited.

2017 is over, and given what we’ve been through, many may expect me to celebrate its end as having been a horrible year, and glad to have it behind us.

Not so fast.

Yes, Twenty-Seventeen brought us a horrifying near-death experience (on Valentine’s Day, of all days), followed the next month by a sobering and terrifying diagnosis. We also said a tearful farewell to my mom after her illness. All ingredients for a truly shitty year, right? I don’t think anyone would argue with me if I raged at the departed year while begging for a better new one.

I’m unemployed. My wife has a terminal disease with no recognized treatment options. I’ll never see my mom again.

But look at it as I choose to:

Jacquelynn defied a 75% mortality rate for her “Severe Sepsis w/Acute Kidney Injury”.

We were in a position to allow me to take an extended break to be at home where my wife needs me.

Despite her regular doctor telling her there was no treatment for her illness, Jacquelynn is making a recovery that can only be classified as miraculous. Especially given that, without treatment, it’s likely she would already be essentially lost to me. Now, I can confidently project that 2018 will see her completely returned to herself, to me, and to the world.

Mom, much though I miss her and still weep at the thought of our loss, is truly home and free from her suffering.

So, while I’m not going to miss 2017, neither will I lament what it brought us. You’ve probably heard me say (and I believe this 1000%) that life happens FOR us, rather than TO us, and I look at last year in that same light. Nothing happened that wasn’t necessary to get us where we need to go, and we are, without a shred of doubt, on the right path.

 

I bid you WELCOME, 2018. I greet you with tremendous expectations and open my arms to whatever blessings you may bestow.