“Work Is Love Made Visible” Khalil Gibran

Tears are a normal, daily part of life now. No fun.

But I’m learning that even tears have much to teach us. This is sort of the reason that I’ve taken a couple of extra days to compose this. Well, actually to compose myself, so that I could begin to write this.

What may surprise you (certainly shocked me this time) is that there are some magnificent revelations masked in tears.

When preparing Jacquelynn’s meals, there are many things I need to ensure she gets sufficient quantities of. One of these is something she used to just adore but now finds just plain distasteful. That thing is the dark leafy greens. Spring greens, mescaline mix, chard, spinach, kale, etc. She used to just love her salads with all the myriad greens mixed in, but today, the textures of the darker greens really put her off now. She’ll she stops eating, fishes around in her mouth with her fingers, and pulls the offending “stringy/tough” leafy greens out, depositing them on her plate with a disgusted look on her face.

Knowing how distasteful she finds them, I’ve tried to be sneaky and mixing them up in some of her smoothies, and even chopping them as finely as I can to cook them into other dishes.

What I never did was simply ask her to buck up and eat the damned things.

That deep, untrusting mistake came to light when I stressed to her how important it was that she finish the salad I had brought home for her.

I found a local organic restaurant called Balance Café and Smoothies that does a fantastic grilled salmon (wild caught!) salad.

She devoured the salmon, sucked down her smoothie, and was done.   When I insisted she needed to eat at least some of the greens. “Why?”   “No one ever told me it was important.”

And she was right.

It had initially been very necessary to tip-toe around such things.   I had to pretty much treat her meal prep as if I was trying to get a stubborn kid to eat his broccoli. First rule is to not let them know it’s in there.

I’ve since learned that, as she progresses in her healing, I need no longer treat her like a child. In fact, can no longer afford to do so. She needs to know that I trust her strength and her judgment. That I will be up front and honest with her at every turn.

She needs to be able to trust me, and that isn’t possible if I’m deceiving her about what I’m feeding her (or about anything else).

That wasn’t a tear-free conversation. Not by a long damn shot. What it was is more undeniable evidence how far she’s come.   Trust has been re-established, and new determination has been forged.

 

Furthermore, she has asked for my help in sharpening the tools she’s beginning to use again. I noticed last week that while we were watching “Jeopardy” (our favorite show to watch together), on several occasions, she casually spat out a correct answer. While that may not sound significant on its surface, consider that it wasn’t preceded by several minutes of working and sweating to access the neural pathway which would allow her access to the answer; it didn’t require gnashing of teeth and muttered profanity before finding the word. The answer just popped forth from her lips like they used to.

We used to play each other quite competitively as we watched. I won occasionally, but only when either sports or pop culture were featured categories. If the “answers” were academic in nature, I didn’t stand a prayer. I’m a pretty sharp fella, but as bright as I may sometimes feel, I’m like a candle in a fireplace compared to her.

She also used to LOVE her logic puzzles. You could ask my sister; Cheryl used to send her a box of logic puzzle books every Christmas. Ten, maybe twenty books, every year. By Valentine’s Day, they were all done. Spines broken from being folded back and creased, pages dog-eared and frayed, but (and this is telling) there were never any notes scratched in the margins. She took the notes in her head, retained them completely, and worked the solutions before ever putting pen to paper. Yes, pen. She worked logic puzzles, crosswords, and sudoku puzzles in ink.

So, we’ve developed a plan. I’m going out tomorrow and purchasing some basic, easy-level logic puzzle books, some kid’s flash card learning games, and a few small jigsaw puzzles. I’ll be helping, of course. She still hasn’t sufficient fine motor control to write or draw, so I’ll be her hands. But she’ll do as much of the work as she can. We’re going to dedicate one hour at a minimum each day to working on filing the rust off and sharpening the blades of her incredible intellect and help her begin to get back what Type Three Alzheimer’s Dementia stole from her.

 

Lots of tears. And lots of very, very good progress being made.

 

And Lots of work to do. We can handle that, though. After all,  read the headline: Khalil Gibran said: “Work Is Love Made Visible”.

“I Am Not Ill”

With every day comes more good news. Yes, every day has the opposite, as well. There isn’t a day without something to view through a lens of concern, but we choose to focus instead on the positive here, and there is also always at least some of that.

Today and tomorrow may very well be the last great weather days for walking for the next few weeks (or months), so we are taking full advantage it.   Now, when we go for our walks, there are a few obstacles Jacquelynn has to negotiate which cause her some significant difficulty. First among these is the curb at the end of our driveway. It often feels like an unreasoning fear, but that’s just a judgment, which serves no one. Whatever the reason, she can be very intimidated by the curb to the point that a couple of weeks ago, she went out on her own to visit with the neighbor and her new dog. After several minutes, she came back in almost in tears, ashamed to ask for help.

I’ve tried many times to talk her through it, and even helped then, but those one-time solutions don’t stick with her. She has limited short-term recall, remember. So each time has been a challenge and a new confrontation of her fears. But now the memory of how best to negotiate the curb is beginning to stick. Up and down have both been a real challenge for her, but she’s remembering how to do it. She’ll walk up to it, place her feet carefully, and step, sometimes without breaking stride at all, which is a BIG development. As recently as last week, if I could keep her talking as we approached the curb, she would, only occasionally, just step without even thinking about it. More normally, if she should break stride and stop, that would focus her on the curb and therefore on the fear. Then it was a huge task for her to take that step. A few times, we even had to go back inside when she couldn’t get past it.   And she has always needed the moral and physical support of holding my hand in any of these scenarios.

Today, on our walks, every one of these obstacles reared their heads, and not one of them caused her the slightest pause:

First, she stopped at the top of the curb. Then she just stepped off of it and continued on her way. I immediately expressed my observation to her and, after a moment of internal review, she realized the reality of it.

I always remark on anything I see that can be labeled an improvement. I want to make damn sure that any positive progress is foremost in her mind constantly.

So we did our walk, about ¾ of a mile at a relaxed but brisk pace, and returned to the same curb. Surprising me, she shook her hand free of mine, “Let me do this,” and nimbly stepped up onto and over the curb then over a small crack in the sidewalk and then reached for my hand again, a big, bright smile on her face!

Finally, and I’ve mentioned this process before, she’s much more aware of the uneven sidewalk sections and the trip-bait ledges that rise where these sections meet. I try to make a point of pointing them out to her, and now she’s occasionally pointing them out to me.

Jacquelynn is also getting incrementally better at manipulating her silverware. There are still moments that piss her off tremendously (this happened at lunch today), but when I take a moment again to point out to her how much less frequent these are, and that now it’s a dropped spoon rather than a fork flung across the room and salad dressing splattered on the television, it takes some of the sting out of it.

Taking the pills is slowly shedding some of its drama, as well.   She’s not struggling to lift the glass far enough to drink, and while she certainly doesn’t enjoy taking so damn many pills each and every day, she’s embraced the necessity and even reminds me and asks to be sure we’ve taken them all. She really dislikes the nasal spray antibiotic (two shots in each nostril three times daily), but reminds me of it constantly.

Yes. Improvements are mostly incremental rather than dramatic. What else do we honestly expect?

But they’re still there. These improvements are important, and they’re real.

 

And they’re hers. She owns them and they are the lifeblood of her faith in her health. If you talk to her today, she’ll tell you she’s not ill.   Her health is returning as her body heals. She is not ill.

 

That gets her through every day.

A Difficult Confession

Okay.

This part isn’t easy.

I came to a realization today. It’s not like I was out looking for it or anything. Actually, I was writing a little, working on one of the three books currently swimming around in my head. At the same time, I was watching/listening to my classes (I’m trying to take an online writing course).

Anyway, I’m contemplating a certain character in the book, addressing her arc, while I’m watching this video about one of the authors teaching this course, and all of a sudden, I’m in tears. Still fighting them back here, as I write this. “Still” being a relative term; as I write this, it has only been a few minutes since it hit me.

Here it is:

I need help. I’m totally in over my fucking head and I need help. I need a nutritionist, I need a health coach, I need a cook, a housekeeper, and a physical trainer.

I am overwhelmed, and I’m afraid I can’t support and give Jacquelynn the best chance to fully recover from this deadly diagnosis on my own. I need help, and I don’t have a damned clue what to do.

It’s difficult for me on many levels. First and foremost, I have to create a way to pay for help.   I’m unemployed, remember, and I can’t bloody well just go back to work. She needs me here, and I was an absolute neurotic wreck when I had to be away from her for the workday. We both were, actually, and I honestly couldn’t tell you which of us was worse.

I’m also a bit of a control freak. There’s NO friggin’ way I could just turn her care over to someone else.   I’ve been with her through every step of this, and pretty much 24/7 these last two months. I know her and I know what she needs.

But I can’t provide it the way she needs it. I can’t be the guy that makes her take the pill she hates (she doesn’t get petulant often, but it tears me apart when she does; I’m not good at playing “bad cop”), or that lords it over her on the exercise bike pushing her beyond her comfort zone. I simply can not intentionally hurt her feelings, and sometimes that’s necessary.

I need help, and I don’t know what to do.

Teeny-Tiny Bye-Bye

I gave Jacquelynn her final Risperidone today.

It is this drug, this teeny-tiny pill, which was prescribed to her in March to curb what I came to call her “episodes” or “disconnects”, but which the hospital dubbed “psychotic breaks”. Risperidone is an antipsychotic drug designed to treat schizophrenia, bipolar disorder, and irritability caused by autism. Some drug websites state that it is strictly not to be used to treat behavior problems in patients with dementia, but others tout this as its primary function.

The “funny” thing is that, of all the things this drug is supposedly designed to prevent, each and every one of them is also listed as a potential side effect.   She’s experienced a few of them, and while they’ve generally been assumed to have other sources, I’m intrigued to see if some of them (the muscular twitches, in particular) reduce or even disappear entirely as the drug leaves her system.

Be all of that as it may, today she took her last one. It is hoped and expected that she has come far enough along in her treatment cycle that it will no longer be necessary.

Yes, we are aware of the potential effects of cold-turkey cessation. To tell the truth, she was off it a bit over a week a couple of months ago, and we had only one very minor scare, for which even then I knew I was fully responsible.

If you read my previous post The Other Side Of Dementia, then you recall my terrors over these episodes. It’s a huge leap of faith from this point to assume that we’ve reached the point that the meds are no longer necessary, but we have stated from the outset that so-called “maintenance meds” are not part of our long-term plan, and leaving this prescription behind is necessary on both a medical and a personal level.

Don’t think I’m making this decision on my own, though. I am talking with Dr. Ross’ office Monday, and if they believe that she should stay on it for a while longer, she’ll call in a refill and we’ll dutifully take it. I’m no doctor and I don’t make medical decisions lightly or without professional input.

But I do believe in my heart we are, she is ready to move beyond it.

Keep her in your thoughts, please. If you pray, we’d be grateful if you would do so.

Thank you.

Hope MUST Endure

Jacquelynn fell last night.

She’s okay, but she almost fell two more times, once before the actual fall and another after, all within about five or ten minutes.

I credit some of it to the fact that she was freshly awakened.   She’s always pretty fuzzy both physically and cognitively for a while after she wakes.  It started with her “twitch”, when her right arm (and her left as well, this time).  When both arms flail forward, she bends at the waist as if to counterbalance, then overcompensates when she straightens too quickly, and begins to head towards the floor butt-first.  I caught her the first time, preventing the final overbalance rearward, but she was a foot further from me a moment later when it happened again, and she quite quickly went all the way down.

Now, Jacquelynn has never had an excess of padding back there, and after her weight loss is essentially nothing but skin and bones in that area.   The whole second story shook with the impact, and I was immediately afraid that she’d truly hurt herself, but aside from coming damned close to busting her pretty skull on the bedroom TV cabinet she was totally unscathed and bruise free.  Not even a little sore.  As I mentioned, it happened a third time, and she successfully caught herself that time.

This all happened between 2-2:30 a.m., as she had awakened to find me not in the bed and got up to check on me.  I had been suffering horrible allergy attacks all evening, with non-stop sneezing and nose blowing.  I tried to join her in bed once but my sniffling and blowing woke her up twice only seconds after she had dozed, so I apologized and retired downstairs to re-medicate and hopefully to get to bed eventually.  So, she was up and I had walked her back toward bed when she fell.  Eventually, she went back to bed, and at around 3, I was able to join her, thanks to a second dose of Benadryl.

When we finally got out of bet this morning, it took her a while find her sea legs again, and there were a couple more stumbles.  This, of course, put me on high alert for the early part of the day, but it turned out okay.  Doesn’t entirely alleviate my case of nerves, but I’ll take it.  It was a beautiful day, and we had a few walks, some good meals, and got some work done around the house.

And when Jacquelynn found herself searching for a word, lost and unable to express her wish for a simple yogurt, she cried.  All my attempts to help just seemed like I was pushing and getting impatient with her, even though the exact opposite was my intent. So she cried.  She shook and wept and sobbed as I held her until she finally wrapped her arms around me and continued until she was cried out.

For most of the rest of the day, even on our walks (which are usually the brightest and most optimistic part of her day), she felt as if healing had stopped, even doubting the progress we’ve made thus far.  I understand the feeling, but I can’t let hopelessness take root, so I spent the evening boosting her mood and spirits.   A successful dinner experiment made her smile, as did a surprise dessert.

I think she felt better as she went to bed.  I know I have to work to make tomorrow better for her.

Hope must endure. Without hope, nothing else matters.

Steps and Strides

When this began, I said I would chronicle Jacquelynn’s progress, either positive or negative, on the ReCoDe treatment protocol. Well, these last couple of days I have seen a few very positive things worth mentioning.

I make a point of bringing these things to Jacquelynn’s attention when I observe them. It brings new light and raises her vibe when improvements are pointed out to her, as it reinforces her already positive feelings. It’s worth noting that almost every day she stops to tell me directly that she simply feels better, and I believe that’s every bit as important as any other metric. It shows me that her heart and mind are focused on her recovery, and that is essential to getting this done.

I have mentioned here before that I am essentially responsible for all of her hygiene now. Aside from brushing her teeth (which I do prepare and supervise), I handle or at least help with all of her personal care rituals. After she went for a walk with the neighbor and her new dog (never miss an opportunity to dog!) Charlie, Jacquelynn came home and wanted to wash her hands. I led her to the bathroom, ready to supervise and guide the process. I make a habit of allowing her the room to do for herself and only assist or take over when necessary.

This afternoon, it was never necessary. All I did was dispense the soap, watch her deliberately and thoroughly scrub her hands, and help her to dry. Now, no more than five days ago, I had to intervene in this same activity to ensure that she did more than just take a little soap, clumsily dab her hands together a few times, and begin to dry them with no rinsing at all. Today, it was just like watching anyone else with some limited mobility carefully washing their hands. It truly was a big moment for me, and after I shared it, for her as well. If this proves to be more than an aberration, then it will go down as a paradigm-shifting event. It indicates an elevated awareness of self and consequences as well as a significantly improved ability to relate actions to results.

Perhaps not so dramatic (I have a low threshold for drama these days) but also of note is a marginally improved dexterity with her flatware.   Tonight’s bowl of soup* wasn’t without its challenges, but she didn’t need my help at all until she wanted a bit of bread (paleo and grain free, of course) to sop up the dregs.  Jacquelynn did get a bit angry at herself for a moment when she spilled a bit out of her spoon onto the bib apron she wears for meals, but she’s always been pretty unforgiving where self is concerned. She’s gaining increased independence on several fronts, and that can ONLY be a good thing. She doesn’t see these gains initially, but when I point them out to her, I enjoy watching her concentrate and realize the truth. It’s almost as moving watching her work to consider and realize as it is to see the gains themselves, because just the act of deliberate thinking and consideration is getting easier and more frequent.

We still have very far to go, of course, but each day is more and more cause for confidence and excitement for our course.

 

*Pacific Organic makes a tremendous line of soups. Do yourself a favor, though: buy them at Kroger for almost a buck-and-a-half less than Whole Foods or Fresh Thyme.

A New Dawn

When I awoke this morning, something felt different.

Not with Jacquelynn. This was within.

I went through the first portion of our day feeling incredible.   All smiles. We went to the grocery, took a nice walk. It was a beautiful day, too, sunny and 80f with a cool breeze.

It wasn’t until we went upstairs to take an afternoon nap (yes, a nap; don’t judge) that I began to realize what was happening.

As I lay there, with Jacquelynn already breathing deeply in her sleep, I took a moment as I often do, to meditate. I closed my eyes, took a slow, deep breath, and as I exhaled, ever so slowly through my nose, a smile that would shame the Cheshire Cat split my face.   I couldn’t help it. The huge grin was completely involuntary, but it wouldn’t go away. Not that I wanted it too; I just wanted to understand its genesis. Why was I smiling so wide and joyously?

As my breath deepened and my thoughts slowed, I silenced the questions and opened myself to answers. With a clarity I’ve seldom experienced, I felt, no, I knew that something had changed. Something spectacular had happened in our lives. Something paradigm-shifting.

Typing this now, 8+ hours later, I still have absolutely NO idea exactly what has changed, but I know beyond any shadow of a doubt that it has.

Something MARVELOUS has dawned in our lives.

I spoke to Jacquelynn about it, a little after our nap and after she’d awoken fully. Turns out she’d felt something “in the air” today, too. I recognize the likelihood that she had just been feeling what I was projecting, and I’m okay with that assumption. But personally, I believe she was feeling, best as she’s able, exactly what I was. At her healthiest, she is one of the most perceptive and judgment-free people I’ve ever met (it’s one of the things I found most attractive about her, early on), and she is more than sensitive enough to perceive this. The energy around her, around us, has brightened.

Something incredible has happened, and I’m excited to learn more.

 

My wife has Alzheimer’s.

Even now, many months in, it’s an incredibly difficult thing to type, let alone to say out loud. She’ll never hear this from my lips, but there are times when I see the dementia in her eyes. When her warm smile goes vacant and she waves at dogs as we drive by, it seems that anyone who looked would know instantly that she was ill.

Those moments still break my heart. Walking through the store and losing her seconds after turning my back, then trying so hard not to be cross with her for wandering off.

 

My wife has Alzheimer’s, and today I couldn’t stop smiling.

 

About the lead photo: in this house, Pooh=Joy.  I took the photo in Orlando in 2010, on our last vacation.  The only one we’ve ever taken in 18 years together.

Inspiring Courage, and A Gradual Awakening Dawns

Awareness. Like most words in the English language, it has almost countless meanings, and they all vary further depending upon context.

Awareness is the best word I can find to describe the growth and improvement I’m seeing in Jacquelynn as we proceed with the ReCoDe protocol. It manifested again today in a new way, which surprised me once more.

Some context first: today my nephew and sister visited for a short while. I had gifted Alexis, my youngest sister’s oldest child (31) and only son, my 1982 Yamaha motorcycle and his Aunt Cheryl offered the use of her truck to tow it back to Indianapolis. Now, Jacquelynn adores Cheryl; there’s something unassailably genuine about her that has always struck a chord, and they’ve been friends since their very first meeting. They’ve had very little interaction since Jacquelynn’s health began to decline, and although she didn’t relate it to me, she had apparently hoped to spend some time catching up while Cheryl was here. But, as Alex had rented the trailer for only one day and they had to get it back before closing, there was no opportunity to linger. They came, chatted, loaded, and left.

After they were gone, Jacquelynn (who had gone inside early on) was visibly agitated. After some digging, I would discover that she felt excluded and upset over not even getting to say goodbye. She wasn’t angry, but disappointed, and that, for her, can lead to distraction and can make her a little extra emotional. Hoping to redirect and maybe focus her energy a little, I suggested a walk.   Being Jacquelynn, she jumped (almost literally) at the suggestion, and by the time I had gone upstairs to get my mailbox key (our ostensible destination), she was pacing impatiently to get her feet moving.

Before we were to the end of our very short driveway, a smile had split her face and she was almost bouncing. This wouldn’t be the high-energy hustle/walk/jog of early in the day, but an almost meandering, hand-holding stroll spent reveling in the glory of the outdoors.

Normally, especially when we’re going to the mailbox bridge, most of our path is, by necessity, along the sidewalk. Because she doesn’t really lift her feet as high as most people, Jacquelynn is prone to occasional tripping. This happened just yesterday and she nearly sprawled into the bushes in front of a house along the way. Then, I was quite impressed with the quickness and agility with which she recovered, as I was less than useless in assisting her to stay upright. I hadn’t seen her instincts take over that fully and quickly in some time. Normally, as we walk, I point out seems and ledges in the walk, to help her avoid a mishap.

Today, she turned the tables on me and pointed a sharp rise in the walk to me, which would likely have tripped me up.

I know, that sounds incredibly minor. So, she saw a crack in the sidewalk. So what? Well, I’ve grown quite used to her almost complete oblivion as far as her surroundings goes. She’ll wander into the middle of the street while we walk, regardless of traffic, if I don’t walk to the outside (the polite thing to do anyway) and sort of “steer” her toward the edge. She’ll step on/trip over even a large-ish stick or obstacle in her way if I don’t point it out to her and direct her around it. I constantly remind her to avoid the painted lines in parking lots when it’s wet out, and still she’ll step right in them seconds after I urge her caution (she slipped on a slick paint stripe a couple of years back and damn near busted her head open against a parked car).

So, yes, having her point out a potential hazard on the sidewalk was a big deal for me.

 

She hates taking all the pills. There are 22 pills and one nasal spray awaiting her each day. I do what I can to mix some of them into her food, just to relieve her of the onus of choking back so many, but she takes them.   Even when she’s so tired she can hardly lift the water glass, she takes them.

She also conquers her fears, which must be unimaginable to you and me, every single day. Remember what Jacquelynn has accomplished in her life. Her 160+ IQ. Never acting it for a second, but always knowing, deep down, that she’s the probably the smartest person in the room. Then imagine her struggling today to ask me to change the channel on the television. It took several minutes of looking for the words until she finally gave up with a profanity I’d only seldom heard from her in our first 17 years together but which has become oh so common since. Eventually, she had to take me by the hand, walk me to the TV room and point at the set, and spat out “I don’t want that!”

The helplessness, the futility, the impotence, and the inexpressible fear.

 

And she conquers it. Every. Single. Day.

Drugs

Eventually, medicine at large is going to wake up. It won’t be an easy task, but it has to happen.   Someday.

With the stranglehold the pharmaceutical industry has on both the academic and professional aspects of medicine, largely controlling the way it’s researched and practiced, it’s going to take a very great deal of work.

But the time for patiently waiting for results has passed.

One of only two medicines approved to “treat” Alzheimer’s, Memantine (trade name Namenda) was the prescription written by her doctor immediately upon deciding upon his diagnosis last March. Now, Namenda, like all other big-time prescription drugs, has side effects. As we were told it would, it caused some involuntary popping in her jaw, primarily in her sleep. She also lost quite a bit of hair, with it coming out almost in clumps when I combed it out after her showers. Not cool, but also not crazy bad, as side effects go. Assuming that the medicine actually works, of course.

Yeah, right.

The goal of the meds, said the doctor, is to try to slow her decline.   Hopeful and not having yet done any research, we acceded. More accurately, I acceded. At this point, Jacquelynn was both terrified and deeply in denial, acquiescing to my recommendations blindly (which honestly speaks more profoundly to her declined state than any other example I can imagine).

Jacquelynn’s decline continued unabated, if not accelerated.

Jacquelynn was on one other prescription at the time, which had been initiated during her third stay at the hospital. It is (she’s still taking it daily) Risperidone (Risperdal), an antipsychotic administered to help curb her “disconnects” as described in my post The Other Side Of Dementia. The current program is to render it unnecessary by the time her current scrip runs out.

I have great expectations that we’ll accomplish exactly that. One reason that I’m confident in this is the primary side effect, only discovered through my own research (never disclosed at any time by the medical professionals dispensing it) of Memantine; hallucinations, seeing and hearing people and things that are not there.

When her Namenda prescription expired, I did not seek a renewal.

When her current Risperidone scrip runs out, I will not seek a renewal of it, either. With the progress she’s already making, and with all the Namenda (presumably) out of her system by then, we’re going to take a BIG step forward and cease taking the last psychoactive of her medications. I’m (we’re) a little nervous, but we’re also confident and determined.

The rest of this trip, this journey, this quest, to reverse the damage done to her body and brain, will be accomplished without the “benefit” of psychoactive medications.

They don’t help. They CANNOT help. There will never be a pill that cures or even significantly addresses all the possible causes and contributing factors of Alzheimer’s.

The drug companies probably know this by now, but they damned sure aren’t going to admit it. Because, as we all know, “treating” a patient is a hell of a lot more profitable than curing them.

We’re curing Jacquelynn, and we’re going to show the world that curing Alzheimer’s and eventually so many other “diseases” isn’t about a pill, and it isn’t about treating symptoms; it’s about the patient, and treating the entire bioorganization that is an individual human being.

 

So you know, since getting off the Memantine, Jacquelynn’s hair loss has completely ceased and her hair is thickening and beautiful.  I very much enjoy shampooing, combing it out, and drying it for her.

Rising

There are a few qualities which I’ve noticed lacking from Jacquelynn’s interactions since this whole mess began. Chief among these was inquisitiveness. Curiosity. Aside from simple day-to-day inquiries (“What is…?,”, “How do I…?”, and a whole lot of “Why is this happening?”s), there weren’t a lot of question marks punctuating her sentences.

So, today, when she pulled me aside to ask some very pointed and very intelligent questions about this blog and its consequences, I was as shocked as I was thrilled.

Yes, she still had to work a bit to get her questions across, but they were there, and she needed them answered.

They were interesting questions, too.

Before I get into that, though, let me clear something up in advance:   Before I started this project, I had a thorough discussion with her. I was going public with a very impactful and, to some, immensely embarrassing diagnosis. I did everything I could to make this clear to her. I was very direct about what I wanted to do and what I hoped to accomplish.   I did not sugar coat it, and I did not soft-sell the impact it could have on our lives. On her life. She was as aware as I could make her about this, and without her agreement and blessing, I would not proceed. She agreed, and you’ve been reading the results.

Last Friday evening, I uploaded a post titled “The Lights Are On And Someone’s Home”. For whatever reason, that post generated more reads and site hits than ever before, in twenty countries. Following that, Jacquelynn has apparently felt a bit more exposed. Excited for what we could eventually accomplish, also, but still concerned.

So today, she asked me about her personal exposure. Is someone going to want to talk to her on TV? How big is this now and how big is it going to get?

On the face of it, it may sound silly, but it certainly is not.   Not to her. Jacquelynn has been on television and radio before, interviewing for and promoting projects she was working on. It’s no strange land for her, and not too much of a reach to imaging that her story could inspire such interest.

I’ve no question that it eventually will, honestly. But not yet. We average a bit over 20 page hits per post at this time. One post generating 150 hits and generating global interest is a start, but it’s far from what one would call “viral”. I promised at the outset to protect her, and I will keep that promise.

****

After she was comfortable with my answers, I took a moment to explain to her why I was smiling around my responses. Until very recently, these questions would never even have occurred to you, I told her. This is more unquestionable and wholly quantifiable progress. I was near to tears again myself (not rare, if your curious) just explaining this to her.

Later, in an interlude that began with her giving me mooneyes from across the room, I walked over, knelt down beside her chair, and almost lost it.   “You have no idea how many times I’ve cried myself to sleep, or cried all night instead of sleeping, for fear of losing you.” I told her about my terrors watching her slip away more and more, losing ground seemingly daily. My nightmares, my frantic calls to different doctors and home care agencies for help.   Absolute paranoia about having to surrender her to a full-time home to take over her care.

Now, the decline has honestly halted. She’s not slipping anymore. The floor of the valley is still very visible behind us, but she is GETTING BETTER. We’re far from done, and we have a very long and occasionally very difficult road ahead of us, but she is getting better. Undeniably and clearly better.

 

She is getting Better. Every. Day.