Forgiveness and Consequences

I forgave myself this week. I forgave myself and allowed myself to tell me “I love you”.

Please forgive the horribly me-centric nature of the above statement. It’s a very difficult sentiment to write in the first person, and I’m quite certain that I’ve muffed it, though I am certainly not perceptive enough to see how.

The point is that this week, something inexpressibly profound and meaningful happened to/for me, and I felt the need to share it here. Initially, I posted about it on Facebook and figured that would be the end of it, but the more I consider it, the more I believe it needs to be recorded here, as well.

So, I present the original post here, after which I will attempt to elaborate just a bit:

I just did something I never envisioned myself actually doing:
While meditating, I was inspired to put my hand over my heart, and in that moment, I said “I forgive you, Matthew, and I love you.”
I’ve NEVER in my almost 54 years been able to say those things to myself. But tonight, I did, and I meant them so completely that the truth of it broke me down into blubbering tears for several minutes. So much so that I’m only now able to breathe again.
My self-loathing and guilt have become such an integral part of my identity that it was physically traumatic to have them just wrenched away in an instant like that. But I feel so inexplicably different now.
I have an intense feeling that things are going to begin to change very quickly now.

Thank you. Thank you God, thank you Universe, thank you Life, thank you Sky…
…and thank you one and all, my dear and beloved family and friends. You all mean more to me than I can ever express.

There.  It was, in an epic understatement, quite the moment.

I was doing a “guided” meditation using the Insight Timer app, a gratitude exercise which was designed to bring forward in the mind the blessings in life; to remind one of all the gifts with which they are surrounded even in what may seem to be the darkest of times. I do such meditations frequently, as I believe that gratitude is among the most powerful and creative emotions, opening the floodgates of life for countless more things to be grateful for.
This was, however, the first time I had done this particular meditation, and as it suggested putting hand to heart, I did something very unusual for me; where I would normally move my right hand to cover the spot on my chest just left of center (this is the motion with which we are all programmed from youth, whether pledging allegiance to the flag, standing for the national anthem, or swearing to tell the truth, the whole truth, and nothing but the truth), I found my left hand moving on its own. Being a lefty, this felt hugely significant to me, though even in hindsight I can’t recall a conscious decision to use my left. When my hand rested on my chest, however, all awareness of the meditation guide speaking through my headphones disappeared, and the electricity of that touch was the sole focus of my attention. At the very first sensation of fingertips to chest, my mind and heart lasered in on those eight words, and they came forth, all bud unbidden, from my lips: “I forgive you, Matthew, and I love you.”
I don’t think I can possibly overstate the impact of this moment on my body and my soul. Imagine carrying a load for 40 years, a load so heavy and overwhelming that your back is permanently bowed and each moment is a torture, struggling for every step and breath. You’ve carried this load for so long that it has become an integral part of you. You don’t even give the weight conscious consideration anymore, you merely exist with it, and accept the constant agony as your “lot in life”; this is so enduring and unshakeable that it must be what you deserve, what God (if you can still allow yourself to believe in such a thing) intends for you.
Then imagine, without thinking about it or planning it in any way, you just cast that weight away. Just like that. Suddenly, pain-free and with straight back, you realize that this burden you’ve carried for so long was entirely of your own creation, and carrying it was your decision and there is no one else in the world to blame. Instant elation and immeasurable relief followed immediately by crushing self-recrimination. But you’ve already let that burden go, so this time the anger and guilt and self-loathing just wash right away, like water from the proverbial duck’s back.

In the wake of that moment two nights ago, I find myself feeling different in every moment. I still cry almost constantly, but not like before, not sad tears brought on by loneliness and grief; rather tears of beauty and appreciation, as if every perceived moment of beauty were amplified a thousandfold and exploding within my heart, welling up and spilling forth from my eyes. Just an hour or two before this happened, I saw a television commercial for a jeweler, with the man giving his wife the lovely diamond Valentine at dinner (yes, six days after the holiday the ads were still airing) and wept at the cruelty of never doing that again with my Jacquelynn. I saw a similar ad today and wept again, but in joy for the idea of that love expressed and shared. Literally, ANY moment of joy or beauty generates tears now. Heaven forbid anyone be in the room if I watch another video of a dog being reunited with a returning military parent now!

I’ll be an absolute mess.

A joyous, celebratory mess.

I still don’t know what tomorrow holds, and I don’t harbor any illusions that I’m done with my grief. But I don’t fear tomorrow, and I don’t believe that my grief will hold me back anymore. I’m no longer afraid to move forward for fear of repeating the same “mistakes” or of opening myself to vulnerability. I believe beyond any doubt that I am now living and will continue to live my best, blessed life, and it will get better with every breath, every tear, and every day.

And I believe in the fullness of my heart that I have my Jacquelynn and her letter to me to thank.

Along with every one of you, as well.

Letter From Jacquelynn

I was walking the dog yesterday, which just happened to be Valentine’s Day.  This was a day we always celebrated with great enthusiasm and joy, sharing gifts and cards every day for a week, culminating in the “primary” gift and card on the day itself.  We made a game of collecting the best greeting cards throughout the year, and deeply enjoyed sharing them.

This was, of course, my first Valentine’s without her since 1999, and I was all prepped to suffer through every moment of it, but was, instead, having quite a spectacular day.  I began it with a Facebook post expressing deep gratitude rather than another lonely lament, and life began rewarding me for that almost immediately.  From the beginning, I felt as if Jacquelynn were herself gifting me with these moments of joy.

It was during my walk with Sky that maybe the best part of an already great day came to me; her voice in my head, essentially dictating a letter to me.  “Write what I tell you to write”, she seemed to be telling me, and the first paragraph was emblazoned on my mind at that moment.  All I needed to do was begin to write, and the rest would follow.

That letter follows, for what it’s worth.  The typing was done by me, but I honestly believe the words come from her.  At the very least, she inspired every word, and I know her voice and heart better than anyone else.  This just feels like her.

My Dearest Matthew,
I hope you can take this to heart, in your grief. I see what you’re feeling, and I’m so pleased that you are doing a little better and getting back into the swing of life. You need people around you, much as you like to imagine yourself as a loner. You have always thrived on your relationships, and I’m glad to see you developing friendships again.
Please, please know how much I have always loved you. You’re finding all sorts of evidence of that as you clean and pack up the house. I’m trying to make certain you find these things at the most appropriate and necessary times, to bring you comfort and joy rather than more fear and grief. Take these tokens and memories and reminders to heart and hold our love close. Read that again; hold our love close, but do NOT lose yourself in loss. The only thing you’ve lost is my physical companionship, and that’s plenty difficult enough. But you haven’t lost ME, and you know that. I’m with you now, helping you type this letter, and I’ll always be here, at your side and in your heart, where I have always been. Don’t grieve what has not been lost.
I know it’s hard for you to think of yourself this way, but you really are my hero. I know that as my illness claimed more and more of me, you came to deeply doubt your service to me, disputing the idea that you were truly of any help at all. It’s time for you to let go of that doubt. If you look inside, you know you saved me. Not in the way we envisioned, of course; we won’t be dancing together or walking along the beach again anytime soon. But in the ways that truly matter, you did save me. You saved me from dying alone and forgotten. You helped to give me many more months of lucidity and love before it simply became too much for any one person, out on an island like you were, to handle on their own. I’m not angry about that, either; moving me to the nursing home. Honestly, I’m grateful because that moved saved you. I don’t think you would have survived last spring with me there, your self-care had so declined. The real Jacquelynn, the one trapped behind the illness, never wanted you to sacrifice yourself for me.
I just wanted you to love me, which you did more and longer and better than any other man ever could have. You gave all of yourself to me, for me, and I thank you.
You should be so proud of yourself, Matthew. Proud of your sacrifices, proud of your accomplishments, and proud of your strength. The only person who doesn’t seem to recognize this is you. Even the nurses and aides at the nursing home (I LOVED some of them so much!) were blown away by your love and dedication to me. Even now, I truly don’t understand what I did to warrant such commitment.
But I do know that I’d have done the same, to the best of my abilities, if the tables were turned.
I feel I owe you so many apologies and explanations, but that time has passed. So instead I send you my love, eternal and unlimited love, and my deepest gratitude.
Thank you, my Handsome Matthew.
I will always be right here. Wearing that smile you always told me you loved so much.
I will always be
Your Jacquelynn.

Gratitude and Confessions

Those of you who frequent this page (thank you!) know that I am a regular meditator. You’ve also read what happens when I let that habit slide, and why I am well motivated to never allow that to happen again. While I inevitably miss an occasional day, My current streak is 102 straight days without missing. Yes, even the day Jacquelynn passed found me in meditation both in the morning before and late in the night afterward.

I try to ensure that at least a few moments of that time each and every day is spent focusing on gratitude. Very often, this can be quite difficult, as I get so wrapped up in my grief that finding the strength to say “thank you” is all but impossible, as is admitting how very much I do truly have to be grateful for. Last week, I added one more very significant thing to that list.

It has taken me ten days to write this. In fits and starts, I struggled with how to say something I feel very much needs to be said without casting it in the wrong light. In turns, it seemed like a great cry for help or an even greater shout from the ego to “LOOK AT HOW STRONG I AM”. Please believe that it is neither of those. What it is, is an essential, watershed moment for me; a true shifting of my paradigm. What my great, late mentor Dr. Dyer called a “Quantum Moment”:

Last week, on the night of Tuesday, January 14th, one month and one day after Jacquelynn passed peacefully from this life, for the first time in longer than I can accurately remember, I went to bed WITHOUT thinking “Maybe this will finally be the time I don’t wake up.”

I can not overstate the significance of this milestone. For the first time in a very, very long time, tomorrow was not more terrifying than oblivion. And it persists. I have not had a similar thought since.

Yes, I still grieve. I still cry when I hear a particular song or come across a love poem or old Valentine’s Day card. I always will. But I will be here for it. I will be in that moment until it passes and I will move into the next moment. I will not linger and cling and rot in that instant of fear and loneliness indefinitely.

I will no longer line up all the old, full prescription bottles on the kitchen island and research how many of which ones I would have to take to make something terrible and final happen.

I am more thankful for this than I can possibly express.  Please join me in that grateful space.

I have much to do. I have a rescue shelter to build, after all. In her name, I will fulfill our dream.

It’s Fine To Not Be Fine

My wife is gone. Only 61 and lost to me. Now I have to survive without her, when to follow her seems the easiest and brightest possible path.
But I can’t be that selfish. I won’t allow the weakness and shortcuts to seduce me.
The only way I can do that is through honesty.
So when you ask me how I’m doing, don’t expect a “Fine” as a response. I’m not fine, and it’s okay to not be fine.

What’s not okay is pretending to be fine to avoid making others uncomfortable.

“I’m holding on by my fingernails.”

“I’m a mess.”

“I can’t sleep.”

“All the crying has the migraines back in full strength.”

“I’m lost and rudderless and I don’t even want to get up off the toilet sometimes.”

I’m going to live my truth until my truth moves on, then I’ll live my new truth. It’s been four days. I’ll blink and it’ll be five weeks. I’ll take a walk then it’ll be seven months.

I WILL be fine. Someday.

But today, I’m not fine, so please don’t expect me to say that I am.

Surreality

It was just last evening, about 21 hours ago as I write this, but the memories have a detached, surreal quality to them, as though I’m watching them happen to someone else.

I was sitting in the cheap wingback chair about four feet from Jacquelynn’s bed and had been texting back-and-forth with the hospice nurse/case manager about getting Jacquelynn evaluated for 24-hour observation and care, due to her declining status.
Awaiting the arrival of the weekend nurse, I was beginning to doze and decided to give up waiting and take Sky home for his evening meal and walk. So I rose creakily from the chair (which is more comfortable than it looks) and stepped to the bedside to kiss my beautiful bride before leaving. Just as I approached, she gave a small hiccup of a final breath, and left. I noticed her silence immediately, as she was not breathing quietly in her 3+ day-old sleep, and I listened closely for another breath before pressing my ear to her still and silent chest.

Telling Sky to stay with Mama, I strode quickly to the nurse’s station and brought the duty nurse back to her room, explaining that I think she had passed, which she confirmed after a brief check. Respectfully and tearily, she excused herself while I knelt by the bed and wept. Sky crowded in next to me after the nurse left the room (he adores her and always sniffs the evidence of her dogs all over her clothes). But, just as the nurse was calling the hospice for me, I had calls to make myself, which I did robotically and almost tearlessly.

Then the texts.

The callbacks.

By now the weekend nurse was there and cleaning Jacquelynn up so I was sitting in the hallway with Sky, texting and answering calls nonstop while residents strolled by mooning over the cute dog (they’re going to miss him for sure) and staff expressed their condolences (a word I’m growing to dislike). All the while, I have to keep a grip on Sky even while texting because my normally chill dog wants nothing more than to get back to his Mama’s bedside. Every time I drop the leash for a second, he’s on his way back to her room.

When my patience with the telephone runs out and I just can’t spend another moment trying to talk without losing it, we return to room 321, and the nurse has just finished cleaning Jacquelynn up. I notice the remnants of her catheter in the trash can then loiter a few moments at her side, noting with detached concern that her eyes won’t quite close all the way, which is how she had slept these last few days as well. Sky whines a little and lays resolutely at her bedside, where I will soon have to order him to stand up to leave. His loyalty and dedication to her astound me. The nurse tells me that the chaplain will be in soon, and she’s going to call the mortuary for me.

But I’m finished here. Jacquelynn left the room an hour or more ago, and it’s time for me to do so as well. With a final, truly final kiss, I put on my coat and all but drag Sky from the room.

It’s real. It’s one hundred percent real.

When my heart and brain finally meet on that truth, I’m in for a rough few days.

Compliments

With her pain and agitation increasing, the hospice staff and I have coordinated with the lead nurse on the Memory Care ward to move Jacquelynn’s comfort meds from strictly PRN to a regular thrice-daily schedule with PRN intervention.  This also solves the night shift’s propensity to just close her door and let her moan and shout, paying her no more heed than to occasionally look in to make certain she hasn’t fallen from her bed again.  So, she’ll be getting her roxanol and ativan at 6:00 a.m., 2:00 p.m., and 10:00 p.m. moving forward.  Knowing that, once medicated, Jacquelynn will simply sleep through whatever disturbances come her way, I’ve rearranged my visiting schedule to attempt to catch her at the very end of her medication cycle, hoping to rouse her enough to at least eat a little.  Thus far, my success has been nonexistent; she’s only been able/willing to eat a couple spoonsful of yogurt and drink perhaps an ounce of juice in the last two days.  My hopes are that as her body adjusts to the new cycle, she’ll wake long enough to eat a little at least once daily.  I am prepared for the “if not” scenario, having long ago decided that keeping her comfortable was, at this point, more important than keeping her here longer than she wishes to stay.

Adjusting my schedule to fit her needs is nothing new, of course, and it always seems to meet with some level of shock and amazement among the staff.

It’s become quite common as new aides and nurses come on board; last night as I was explaining my new schedule to the two aides, both quite young and new within the last few weeks, on Jacquelynn’s unit tonight, one stops me with her uber-important input:

“You’re a great man. I just have to say it, but you’re a great man.”

I’m not sharing this to pat myself on the back. Honestly, I wish they’d stop saying this and things like it. I understand it, of course, their need to comment on what they see as an unusual dedication and love. So few people here get visitors at all, and only one other receives anywhere near the attention Jacquelynn does, from her daughter who is here at least as often as I, and she also is now under hospice care as her condition deepens and her prognosis fades.

For my part, I simply cannot conceive of doing any less, and still often feel as though I don’t do nearly enough. Much though I understand the need to live my life, especially as I can now finally search for work once more, I still harbor a great deal of guilt for every hour not spent at Jacquelynn’s side.

At the same time, making myself come here is getting harder every day.  Not because she doesn’t really know me anymore, and not because I know how very limited her remaining time is, rather simply because I can no longer see her as she was, full and vital and bursting with the love of life in all its forms.  All I can see now is less than 80 lbs of skin and bone, sleeping open-mouthed in her adjustable bed, her arms rising and falling as though reaching for some unseen savior, left leg constantly moving, seeming to try to lever her frail form from the bed to follow it.  Sometimes I feel that I can hardly bear that sight for one more moment.  Then I pack another hopeful bag of yogurt, pudding, and juice, strap the dog into his seatbelt harness, and get back in the car again.

So I’m no hero and no paragon to be upheld and emulated. I’m a flawed man still desperately in love and terrified to miss a moment with my wife. Even though she no longer recognizes me.

My single greatest fear is THAT telephone call. I don’t want to receive that call. I want to be right here with her hand in mine when she lets go. Because if I have to drive here knowing she’s gone, I won’t be able to see or hear for the bawling. I’ll be a basket case and the (groundless, I know, but I can’t help it) guilt for not being at her side will be destroying me the whole time.

Fear and guilt and paranoia are nothing to hold up as some great example. They are, however, quite easy to mask as something far nobler.  Forgive me for hiding behind that illusion, but it’s one of the things I rely on to keep me going day-to-day.

Down twenty-nine pounds in six weeks.

Seventy-nine pounds.

One hundred eight in late October, and today just seventy-nine.

Down twenty-nine pounds in six weeks.

Sky and I spent the whole day with Jacquelynn on Thanksgiving. Ten hours, broken only by taking the pooch for a couple of walks and running to the gas station for snacks. Jacquelynn slept almost the entire time, but she knew me and smiled as she ate what little she was able to.

But I wasn’t going to miss spending our last Thanksgiving together, just as I won’t miss Christmas if she’s still here for it.

Which seems unlikely.

Down twenty-nine pounds in six weeks.

While there is still familiarity and comfort in my company, I don’t believe she has really recognized me since Saturday, although there is still familiarity, as though I was an aide or nurse she was comfortable with, but no bright light and smile of recognition. No kisses or strained, barely understandable “I love you”s.  Nutritionally, Jacquelynn is only averaging a single serving of yogurt each day, plus whatever juice she’s willing to drink and the pudding they mix her meds with.

I’m no Ferrigno, but I can lift her easily when I need to move her in her bed, so I asked that she be weighed (which happens the first week of each month anyway), and the nurse called me today as I had asked to tell me she was down to seventy-nine pounds.

Down twenty-nine pounds in six weeks.

Selfish as it seems to me, I’m struggling mightily this week with impending loss. My family and friends all remind me that there is no way to truly be ready for this; that all the preparation in the world can’t prevent the event from crippling you when it occurs. The only thing to do is allow myself to be human and feel what demands to be felt, to flex like the palm trees in the face of the hurricane, bending so as not to break.

I can only hope to avoid the break; to be stronger than I feel, because to be honest, I feel as though I’m already broken. Like I’ve been broken so many times and glued back together so many times that the crumbling just can’t be stopped anymore.

The pieces are just waiting to fall apart one last time.

But I’ll pick them up again, and with some help, put them together in the right order. It barely seems possible now, but I know I will. Life isn’t done with me quite yet.

Even if it is just about done with Jacquelynn.

Down twenty-nine pounds in six weeks.

Sky Knows

I thought, for just a moment, that this morning’s goodbye was the last one.

Jacquelynn was up in her wheelchair when I arrived, sitting up straighter than I’d seen in a while, and she greeted Sky and me with a smile. However, her energy and cheer wouldn’t last long. Though she had barely eaten since yesterday’s breakfast, she would take only a small serving of yogurt and a little pudding before losing interest in food at all. The ten or so ounces of cranberry juice I was able to coax her to drink was of little comfort, knowing that she’s shown signs of dehydration since her hip surgery just over two weeks ago.
As she tires, Jacquelynn slumps in her wheelchair, and she isn’t able to hold her head erect for long. This gets uncomfortable very quickly, slouching in the chair with her head lolling to the side, and she was quickly making a lot of pained vocalizations. As the nurse and aides are busy serving breakfast, I decided to help her back into bed myself. I’ve done this many times, and frankly do so with more efficiency and compassion than many of the professionals there, so she’s soon laying down without further discomfort.
Within minutes she was snoring peacefully.
As is my habit when she’s sleeping, I spent some time just kneeling by her bed, holding her always-gently-twitching hand and speaking quietly to her. Sometimes I’ll sing along with the music playing from the I Heart Radio station I created with some of her favorites. I know most of them by heart now. Today, I just held her hand and stroked her head while her soft snores serenaded me. I whispered to her that I love her, and so does Sky. “It’s okay, My Love, everything is okay. We love you so much…”
The twitching in her hand calmed and stopped at the same moment that her snoring silenced. I slowly rested my forehead on her chest. After only a moment, a short snort was followed by another light snore and a solid push from her hand, and I exhaled, realizing I had been holding my breath.
I called Sky to me, and he hesitated, an uncharacteristic response, especially where Jacquelynn is concerned. I patted the floor next to me, and he peeked around the foot of the bed, looking unwilling to come any closer. When he finally approached me, he kept his distance from the edge of the bed. Looking first at her then at me, he started whimpering, only stopping when I let him move away from the bed.

I said my goodbyes, as I do every visit now, and we left shortly after that.  In another unusual move, Sky left the room eagerly where usually I have to drag him out. His attitude and body language didn’t settle until he was in the car. Even now, almost four hours later, he will occasionally cry gently, calming when I hold him close. He’s not normally a cuddler, but I’m not going to complain; I could use the comforting myself.

Stubbornness and Consequences

As of Monday afternoon, despite a loudly growling stomach causing her clear discomfort, Jacquelynn hadn’t consented to eat a single bite. If I put a spoon with a touch of pudding in her mouth, she’d take it, mash it around for a moment, then spit it out. Even just moistening her parched lips and mouth with the flavored swabs, successful while she was sleeping, resulted in choking and spitting if she was even partially awake.

Thirty-six hours after the surgery, she would typically be expected to be eating by now. The attending physician gently warned me to be prepared for the idea that she may not choose to eat, asking if I had considered or planned for that possibility. I have, of course, long since; her DNR order is on file at both the hospital and the nursing facility which is her permanent home.

I had even given thought to the idea of not authorizing the surgery while consulting with the orthopedist. The surgeon acknowledged that, in all likelihood, her time is fairly close now, and if she were not to have the surgery, she would be bed-bound going forward, under which circumstances, most patients in Jacquelynn’s condition simply don’t last very long.

Understand that she and I had many conversations about this over the years; the idea of living helplessly, of being a “burden”, and of course of being kept alive when true life was long over. This idea was abhorrent to her, as it is to me. Then I recall how many times before she went to the nursing home when, in those terrifying lucid moments when the enormity of what has happened comes crashing down upon her, that she asked, begged, and even demanded that I kill her. I had promised, she would insist, crying and clearly feeling deeply betrayed. I couldn’t, of course, and never could, but for those few moments of clarity, all she wanted was to die before losing more of herself to this horrific disease.

So it was with a certain difficulty that I reached the conclusion that God will take her in God’s time, and my job here was to help her feel as safe and comfortable and loved as possible up till that time, and I authorized the partial hip-replacement surgery.

Yes, she broke her hip. Refusing as was her habit this last month or two to go to bed, she was still in her wheelchair after 10 p.m. last Friday (10/11/19), and either out of boredom or just her typical stubbornness, she decided (as she often does) that she would get up and go for a walk.

Now, she can and often does walk a few steps on her own, but she hasn’t the strength for more than that, and her balance is certainly not reliable enough for this to be a safe practice (see the comment about stubbornness above). So, the staff keeps as close an eye on her as they can, but there are more than twenty residents in the ward, and one-on-one monitoring just isn’t possible. Still, the nurse saw and started toward her but simply didn’t get there in time. She related to me watching her waver and fall, full-on her right leg, and instantly begin screaming.

After making the questionable decision to help her back up into her chair (picking her up increased the possibility of injuring her further), I was called immediately. Hearing her screaming in the background was enough for me, and I was dressed before the nurse even finished explaining to me what had happened. Upon arriving, I found her in her chair and in obvious agony, either unable or unwilling to move her right leg at all. After a short argument with the ambulance crew about where to take her, I took off in my car for our hospital of choice. I knew she was badly injured and had broken something (probably the hip but perhaps or also the leg), and was going to be hospitalized for some time, and by God, it was going to be where I knew the staff and where her records are immediately available.

Unsurprisingly, the always-efficient and effective ER staff found that she also had another severe bladder infection, which would delay her surgery by a day as they doubled up on antibiotics in an attempt to minimize the possibility of any infection contaminating the surgery wound. After two nights in the hospital, surgery was finally done Sunday morning, and she would hover in the limbo between sleep and pain, squirming in the bed in an attempt to edge away from the ice pack which is so essential in the first couple of days post-surgery. She would grunt and whine and ask in a weak, quavering voice “Why?”. I’m uncertain as to whether she actually recognized me at all in our few interactions those first two days, and her apparent refusal to eat had me anticipating the worst.

But Tuesday morning would be better, with Jacquelynn clearly recognizing me with smiles and even a couple of “I love you”s, and she even ate some yogurt and drank a few swallows of laxative-laced juice.
Although I personally didn’t think she was ready, Tuesday was also the day she would be discharged and sent back to the nursing home. Fortunately, the staff on duty when she got there were a group I have a good feeling of trust in, and the next shift as well. We arrived just as dinner was being served, so I helped her eat a “magic cup” (frozen ice cream-like supplement), which she wolfed down and eagerly chased with an apple juice before falling fast asleep.
Wednesday was mostly sleep for her; she was out like a light at both mealtimes and I let her rest rather than waking her. I knew the staff on duty and trusted them to feed her when she woke, which they did. Thursday morning was a real thrill for me, though. When I arrived, she was laying in bed talking to herself when I walked in with Sky. The instant I put myself in her line of sight, her face lit up with a huge smile and a “Hiii!!!!” She kissed me and told me she loved me in her very-dry-mouth voice, then made all kissy-face when Sky bathed her in doggy kisses. She ate a (comparatively) vigorous breakfast of yogurt, juice, and jello. Dinner was an even fuller meal, and she finally began asking what had happened. Although I knew she wouldn’t retain it, I explained briefly how she got hurt and why caution is so vital moving forward. I’ll remind her of this many times over the next week or so.

Friday was another pleasant surprise when I arrived for breakfast; she was sitting up in her wheelchair! She seemed quite comfortable and Sky and I both got another enthusiastic greeting, and she positively attacked her breakfast, eating everything she would normally have (there was a banana and a pair of sweet rolls on her tray which she just doesn’t ever enjoy). They were putting her back to bed as I left, as she was clearly getting quite tired and uncomfortable already, and there’s no point in pushing too far, too fast. She would still be in bed when I arrived for dinner, but was alert and enjoyed a bit of yogurt and pudding with a full bottle of cranberry juice before falling right back to sleep.

I’m fully cognizant of the likelihood that, after four full days under heavy sedation and pain meds, it’s probable that Jacquelynn will lose some baseline, meaning that she may not be fully the same level of herself as before her injury. It has happened before, and the docs told me to expect it. There are signs of this already, but some of it may be the meds she’s still on. For my part, I’ll take whatever there is of her and love her with all that I have. But I’m aware of the limits on our remaining time, hovering over my head like Damocles’ sword. I feel a pressing need to maximize every moment, but still honor her need for rest and recuperation. Sky even gets a tad impatient with me as I prolong our stays while she sleeps.

 

The lovely lady whose room adjoined Jacquelynn’s via a Jack-and-Jill restroom passed away over the weekend. She was a wonderful pianist and could play any old standard or hymn from memory on request. She was also a sweetheart who loved complimenting Sky and how much he and Jacquelynn love one another. She seemed quite robust and I saw no outward indication that her time may be near.

There is simply no predicting the when with this disease, only the inevitability of it.

I’m as ready as I can be. I know I’ll still be an absolute wreck when it happens, which is why I’m endeavoring to make as many arrangements as possible now, so I can afford to crawl under my bed covers and shake for a few days when the time comes. I waver between praying it never will and praying for a hastened end to her suffering.
All in its proper time. That’s how it’s going to work out anyway, so fretting over it is a waste of energy. Energy I hardly have available to waste.

The Lament

The quiet Why couldn’t it have been me?” isn’t the guilt-ridden Matthew-torturing-himself lament it once was, but a sincere question to the cosmos.

It’s taken a very long time, but I’ve moved beyond the guilt and anger to finally accept that this was Jacquelynn’s agenda all along, and mine as well; to serve and learn and be forged into whatever I need to be going forward.

No, this time it was a legitimate question, muttered into her shoulder at 1:30 in the morning, as she calms from the tantrum that always accompanies getting cleaned and changed. Imagine that feeling; you’re an accomplished professional, highly respected in your field, and strange people are pawing at you, laying you down on a bed and rolling you around, doing to you what mommies do to their infants, and you just can’t understand why. You can’t stop them and ask what the hell they’re doing, caged uncomprehending as you are in a body and mind that no longer obey your commands or answer your requests. So you cry and scream and lash out because that’s all you can do.

So yes, I ask why it couldn’t have been me because I’d give anything in my world for this not to have been her. Not to have to hear her weep helplessly as the STNAs dodge her kicks and flailing, claws-bared arms, swearing as the one person I’ve ever known who has never intended harm to any other being connects with a vicious scratch.

I couldn’t wish this on anyone else, so “Why couldn’t it have been me?”