Dearest Rachel –
Each day is another ride on the roller coaster that is life; some days are wonderful and exhilarating, while others make your heart and lungs nearly fly out of your throat. And while at times it sounds like a fun way to look at life – even an actual day at an amusement park isn’t that exciting, with the time spent going from ride to ride, to say nothing of all that standing in line – after a certain length of time, it just gets exhausting, going from high to low endlessly. At some point, you just want the car to pull into the station so you can get off and go elsewhere.
That seems to be where we are these days with Dad. On Friday, we had a team from the hospital’s physical therapy department check him out, in preparation for his being moved from intensive care to general treatment. He surprised himself with his ability to stand up (with their assistance, of course, but it had been over fifty hours since he had been ambulatory at that point) and take a few steps, first to the left, then to the right. Their evaluation was that he could undergo therapy there at the hospital starting Monday, which would be fairly intensive compared to his stay in the rehab facility some two and a half years ago. This, combined with the transfer out of the ICU, appeared to lift his spirits; he even acknowledged that the rehab center involved many hours of boring downtime that he wasn’t looking forward to dealing with.
By yesterday, on the eve of starting this hospital-based therapy, everything had changed. No longer was he looking forward to getting back on the road to recovery; on the contrary, he was clearly not feeling as if he would have the strength to even begin to try. In fact, he was once again expressing a hope that he just could go ‘home’ soon. Not so much back to the house – although I suspect he wouldn’t mind passing away there as opposed to the hospital – as Home, where his parents, many of his closest friends, and yes, even you are.
I have no idea what may have precipitated this sudden change of heart, but then, I’m unable to gauge what pain he might be going through at the moment. Sure, I’ve experienced physical pain – I’ve talked about my ankle and how it takes away my motivation to exercise, and the last couple of days, I’ve woken up with an odd ache extending from my thumb through my wrist that makes typing difficult (carpal tunnel syndrome, maybe?) – so I can understand his diminished motivation, to a very limited extent. But I can’t possibly fathom the sort of pain that precludes one from even being able to scootch up in bed, and how frustrating being unable to perform such a simple motion can be. And of course, that’s just one example of the little things he’s unable to do for himself.
There are things he can do, however – I was pleased to see him be able to brush his own teeth when the orderly brought him his toothbrush and toothpaste, for instance. I assumed that he would have to do it for him, like when I’ve been shaving him on various visits. But he has the motor skills to take care of this, which feels like it should be encouraging, except for the fact that it also seems to wear him out to accomplish.
And that’s the thing; he’s able to perform certain small tasks – and, of course, he’s perfectly lucid and communicative – but everything just leaves him so weary from the effort. For all that he was looking forward to physical rehabilitation on Friday, he seems to have come to the conclusion that the effort is going to tire him out so much as to discourage him from trying.
It doesn’t help that he doesn’t seem to think he has much to rehabilitate himself for, either. He continues to be fed through that gastric tube, which gives no pleasure from eating, and has a tendency to leak, thereby precluding him from being out and about for a number of months now. So he can’t go to church, or really anywhere else; in fact, he’s concluded that, even if he gets out of the hospital, he won’t be able to drive anymore, despite being of perfectly sound mind (unlike many folks still on the road these days). I think he’s worked the calculus in his mind, and can’t justify the effort, given the payoff. What kind of life would he come back to, even if he was able to bring himself back to it?
Again, this is only conjecture on my part, as I can’t feel what he feels directly. But I get that he’s grown weary from the ride, and would just as soon get off at this point. He’s done everything in his life he can – if there are things he wishes he could do or have done, there’s nothing he can do to rectify those. Meanwhile, as between you and me, he has no regrets; nothing to repent of, nothing to apologize for. Nothing left unspoken or unsaid to anyone. So what’s holding him back from taking his leave?
I will say that watching this change of heart has been a bit of a roller coaster for us, too. Just as he seems to be recovering, he starts to lose heart.
The ·will to live [L human spirit] can get you through sickness,
Proverbs 18:14, Expanded Bible
but ·no one can live with [L who can bear…?] a broken spirit.
The weird thing is that this has happened before, and he’s come back from it, so I don’t necessarily know whether to tell you that he’s on his way to see you even now. We’ve been down this road with him, but after several times of seeing him turn around and return, we’re not sure what to make of the moment.
The irony is, while by going through these episodes in the past, we have everything prepared for when the moment comes – all the documentation, both legal and financial, not to mention an order of service for his funeral – when it actually does come, we’ll probably be caught unprepared, as we’ve been expecting him to claw his way back yet again somehow. But without a compelling reason to do so, I can see why it might not happen this time around. The ups and downs are just getting to him, and it’s not as if he’s getting any stronger from one to the next.
In which case, I’d appreciate it if you’d keep an eye on him, and wish him well, whichever way he goes. And for us, too, as we’re getting weary from the the ride ourselves.
Letters to Rachel 