Better? Really? Hell, yes.

There are days, many days in fact, when I wonder if I have imagined Jacquelynn’s progress and improvement. Days when she struggles for her words so badly; when communicating even the most basic concept seems infuriatingly just beyond her reach; days that find her so dejected and defeated-seeming that I truly think it all may have been just the cruelest of wishful thinking.

Then there are the Miracle Days. These are the days on which I kick myself for ever allowing myself to doubt, for my own all-too-human weakness. It’s on these days when I can barely breathe between noting and relating to her the new, long-lost, exciting and watershed moments as she continually demonstrates, all unknowingly, cognition and brain function unseen for more than a year.

Yes, I get weak. I cry myself to a semblance of sleep or simply lie awake all night, too tired to read and too wracked with despair to close my eyes and invite the nightmares in again. But these nights are fewer and further between than used to be the case, and they get rarer as time flows on.

In complete candor, if I had imagined her progress and improvements, she’d be dead or institutionalized by now. But she is getting better.

She has better endurance on the exercise bicycle now than I do.   Granted, I pedal faster and with higher resistance levels, but she outlasts me every time. There are simple things, too; simple automatic, unthinking muscular-memory things which have quietly but sharply improved. For example, ever since her shoulder injury and subsequent physical therapy in 2016, Jacquelynn has had very limited flexibility in her right shoulder. So, I help her into her jackets which she wears constantly around the house (her weight is still quite low, and she gets chilled very easily). The normal procedure has always been as follows:

  • 1) guide her right arm into the sleeve
  • 2) from behind, reach in front of her and guide her left arm down from its constant position against her chest (as if huddled against the chill), and help if into the sleeve, and
  • 3) move around front to straighten the jacket and ask for a kiss.

As of about two weeks ago, one step has been eliminated; now, as I pull the jacket around her back, she’s already reaching back with her left arm, feeling around for the sleeve.

Maybe it sounds insignificant to you, but please trust me, it’s actually a pretty big deal.

Also a big deal is childhood memories reasserting themselves.   Jacquelynn has NEVER been a person to speak about her childhood. She has long claimed to remember essentially none of it, save for her versions of stories her parents told over the years. She has always been very closed off about it, leading me to suspect that there may have been some abuse or trauma hidden in her past.

Perhaps I was wrong, though. For recently, we’ll be watching a television show or just talking and something will strike her in a familiar way and she’ll relate to me an anecdote from her youth. Amazingly (to me, anyway), she’ll often do this with little or no difficulty in finding words or even names (typically the hardest part for her), too.

But with each memory of home and family also comes more hurt.  She is crushed by her mother’s unwillingness to be of any help whatsoever, and every time it comes up, the hurt and rage seem fit to tear her apart. As many times as I beg her just to drop it, I remind her that her mom’s path is her own and irrelevant to us, invariably something will remind her of it again soon, and it will begin anew.

Can you even imagine?   Could you ever just write off your own child? Regardless of the antipathy that has always existed between them, could you ever hear “your daughter has Alzheimer’s and needs your help” and refuse? Even if you had more money than you could ever need or spend?

I apologize. Not the time or place. But I’m leaving it here so you can see inside just that little bit deeper. So you can understand the hurt and shame that I feel when I post and repost our GoFundMe link.

It has been an odd and busy few weeks, and it looks to get odder and busier as I work to find a way to delay the need to return to work full-time and remain home where I’m needed.

 

Wish us luck, would you?

The Lights Are On and Someone’s DEFINITELY Home!

Earlier this week, I had what I will call (for want of a more flattering description) a meltdown.   It had been an excessively challenging couple of days, with Jacquelynn having almost zero energy and growing increasingly moody as her nighttime sleeplessness translated into daytime petulance. This was all made so much worse by the growing clarity that her mother, for all the money she’s sitting on, is completely unwilling to be of the slightest assistance in her only daughter’s recovery.

On this particular afternoon, it seemed that everything I said and did triggered Jacquelynn in some way, and she would be reduced to tears and frustration, feeling as though I was judging her or snapping at her. Once, she even thought I had cursed at her when it was actually myself I had been swearing at. One final, very minor (in hindsight) confrontation led her once more to tears and I kind of lost it. I fled the room and deposited myself on the exercise bike, all but tearing my hair out in my frustration, and 100% sick and tired of being me. Full to overflowing with self-loathing and seeing only blackness in my vision, it was Jacquelynn who once more came to my rescue with a simple, crystal clear and beautifully prescient observation: “You need to get back to the things that bring you peace,” she said. “Listen to Dr. Dyer again.   Re-read that first book.”

It is an indescribably wonderful feeling indeed when I notice and am able to relate to Jacquelynn new and notable improvements n her cognition, but it is an even more magical and brilliant sensation when she notes them herself. This was the first such moment of several this week.

She was, of course, absolutely right. I knew it the moment she said it, too. Since Jacquelynn first gifted me with Dr. Dyer’s “Wishes Fulfilled” collection (book, 7 audio CDs, and 3 DVDs) in 2013, the (now late) Doctor has been a true guru and mentor to me, and his words and voice bring me peace and restore me to myself.   It has had precisely that effect, too.   I’m progressing through the book for (at least) the fifth time, and the countless YouTube videos, which she and I are watching together, are a truly transcendent experience for me.

Even more than that, though, was the absolute clarity and precision with which the thought was formulated and translated into speech for her. She not only recalled and cherished his impact on me but also remembered and spoke his name without struggle or hesitation. If you only understood how special and unexpected such a moment was, you’d be tearing up just as I am now recalling it. Then to see the light come on behind her eyes as she tilted her head toward me, a smile growing on her lips as she realized what she had just accomplished…

“I did that all on my own.”

This time, our tears were joyous and free-flowing.

Another similar though far less traumatic instance of clarity and recall occurred this morning…

There rests atop our refrigerator a gorgeous birch-bark basket (the photo above this article). A product of her impeccable decorating taste, she’s had it far longer than she has had me, and it’s been sitting right there for years.   Today she looked up at it and said, “I’ve always loved that piece. I wonder what’s inside it?” So, of course, I reached up and brought it down to eye level for her. There wasn’t much in it, as it turns out, save a few hair clips, an emery board or three, and an old greeting card. I picked the card up and read the front to her.   Halfway through my reading, though, she giggled and said softly “I LOVE this one”, already recalling and anticipating the punch line inside. She was actively laughing by the time I got to the inner page and read it for myself.   Yes, it was very funny. Far more significant, of course, was her clear memory of the card and its contents. She realized this just as I was about to mention it, and again her face lit up: “I did it again!”

As recently as a few weeks ago, let alone several months back, this level of casual recall would have been impossible.

Yes, my friends, the lights are coming on, one by one, the thousands upon thousands of rooms in the vast mansion of Jacquelynn’s mind are lighting up and doors are creaking open.

 

 

 

 

 

 

Hero, a poem

I felt inspired to compose a bit of poetry this evening.  I posted it on Facebook, and I wanted to share it here as well.  Thank you for reading.

Hero

 

Faced with necessity, I walked toward destiny.

Embracing need, I fled convention.

Into uncertainty, into fear,

I tread unknown paths on determined heels.

The courage is not mine, the strength I hope only to augment

Is Hers.

 

Her breath is my drive, her light my sunrise.

The power of her determination moves me,

Moves Worlds.

Moves History.

Changes all it touches.

Saves.

 

Facing today, we see only tomorrow.

Embracing Now, we pursue purity.

Into certain success, past fear,

We walk our path with faith and trust.

Her heart, my hands, our strength propels us

Forward.

 

Heart-guided.

International Women’s Day, and My Hero

Today is “International Women’s Day”, and like many other people will undoubtedly do in their own forums, I am going to spend a few paragraphs honoring my women hero.

Much as I love and respect (and miss!) my beloved mother, and believe me, she’s as worthy as any woman on the planet of honoring on this day, I am going to shine the light of reflection and gratitude on my brilliant, brave, and beautiful wife.

As many regular readers here know, my Jacquelynn is an accomplished scholar and scientist.   With an advanced degree in mechanical engineering, she launched her career by turning a then-groundbreaking hand-made diabetic blood tester into a hugely successful mass-produced game-changer for patients and the parent company both. Parlaying that triumph into many, many more in the field of medical science and other disciplines as well, she was known and respected throughout the industry and was the go-to engineering manager for medical start-ups, often turning down new and challenging offers while focused on her current projects.

Today, she sometimes despairs that she’ll never work in her beloved field again. She can be forgiven the occasional bout of fear and even shame, but I must never fail to remind her just what she’s accomplished thus far in her latest task.

She’s recovering from Alzheimer’s disease. This is not possible, according to currently accepted medical knowledge (though that is beginning to shift), but she’s doing it.

It’s not easy, and she still has far to go, but she is inarguably getting better. Even she notices it now, where before I had to point out to her the grains and evidence of progress, now Jacquelynn will stop in mid-sentence and remark “You know, I don’t think I would have gotten/realized/remembered that before.”

Jacquelynn is my beloved wife, the undisputed love of my life and a partner whom I honestly feel I have known and loved through many a lifetime. She is also, without doubt or hesitation, the bravest, strongest, most dedicated and focused individual I have ever known. Woman, man, child or adult, I have never encountered a truer hero and inspiration.

I go through every day just hoping that I can be enough, that I can serve and support her journey sufficiently. I strive to be what she needs me to be, and I can only pray that I can be even a fraction of the Matthew she deserves.

And I ask you again, if you are capable of doing so, to please help in any way you can.  With our finances running low, I’ve launched a campaign to help.  Please read and share the link, and you have our deepest gratitude for any assistance you are able to offer.

https://www.gofundme.com/savingjacquelynn

Namaste.