It’s 3 AM and I’m wide awake. I’d been admitted at midnight.
The clatter in the halls and the soft, incessant beeping of machines, as familiar as they are to me, could not be ignored. Television wasn’t an option, I had turned it off at 2. Canned laugh tracks weren’t masking the all-too-familiar sounds and sensations of the hospital room. I’d never been in this particular room before, but if hospital rooms were hotels, I’d qualify as a certified TripAdvisor reviewer. Trust me, they’re all the same.
I was preparing myself for a sleepless night. Once a huge deal to me, now it was no big deal. In a former life, being awake at 3 AM was panic time. I would be so worried about being able to carry out the responsibilities of my work day on no sleep that I would obsess about it and be up all night. Alas, that was when my life was structured and meaningful. Now, being up all night barely affected me or my meager itinerary. As I sat up in the uncomfortable, narrow bed I looked forward to the one thing I could always count in during a hospital stay, some good thinking time.
The last 3 days had been a blur. After a 3rd day of failing to get out of bed for more than an hour at a time, shivering under blankets, a non-existent appetite, and experiencing complete exhaustion at completing even the most mundane physical tasks I had forced myself to take a shower at 8 PM. The thought of removing the 3 layers of clothes in order to even get in the shower filled me with dread. I ran the water until the bathroom steamed up a bit and I forced myself to get in. As I did that I was already dreading stepping out of the shower to get dressed. I have never felt so vulnerable to cold as I have lately. I ran the water hot, hotter than usual and hoped that it would wash away whatever toxins were stealing my life force from me. The effort that it took to wash my tired body sent me into a coughing fit. I nearly passed out I was so short of breath. I stayed in the shower longer than usual, enjoying the heat and steam, and still dreading the brief but brutal moments of drying off and getting dressed. After mustering the courage to do so, I found myself so winded by the mere act of getting dressed that I had to take a break. That told me all I needed to know, I was going to the ER. I was finally convinced that this wasn’t just another “episode” that CKD patients go through. I was more than run down, I was sick.
The 30-minute drive to the hospital was easy. Sitting was no problem. Walking the long corridor from the main entrance to the ER proved to be more of a challenge. By the time I got to the registration desk, they were already scribbling “shortness of breath” as the cause of my visit. Never having been to this hospital, I had to go through the entire registration process. By offering up “transplant patient” at the beginning of the visit, I certainly sped things along. I was immediately seen by the best doctor they could offer that graduated from the bottom 3rd of his graduating class. I’m not being cruel, it’s a small NH hospital that is only equipped for so much.
I explained my history, as I had done so many other times. They took vitals and made pages of notes. When they didn’t recognize half of the meds on my carefully crafted list I immediately knew I was in Mayberry R.F.D. They got the chest X-Ray done and, as I suspected, it was pneumonia. They immediately, and by that, I mean in 2 hours, admitted me. Which brings me to where I am now, wide awake, without comfort, body worn down and my mind searching for clarity.
Despite my serene surroundings, I am bombarded by my thoughts. The last month has been a blur of illness and disappointments. Flare-ups of symptoms once under control had dominated my time and energy. Medicinal changes and side effects have sidelined me from almost everything I enjoyed doing. I am annoyed that the pneumonia is back. This is the second time I’ve had it and the last time was the final blow that forced me out of employment. I’m annoyed at the perceived quality of care I am going to receive. The staff is nice, but they clearly have very little experience with a patient with a history such as mine. I have enough free time to embrace some bitterness also. I have been so disappointed by the events of the Friday before. I had gone to meet some friends at a long-anticipated event and despite the excitement and the planning, I had felt so miserable that I had to leave early. I had so many questions and things to learn from these people. But my expectations of tales and laughter and stimulating conversation over a bountiful meal turned out to be sipping ice water and picking away unenthusiastically at a meal that barely interested me at all, trying not to show my guests how nauseous, exhausted, cold and dying to get out of there and into my warm bed at all costs I was. It further annoyed me that I was already “writing off” the events of the past week as “just another setback” and a part of the new reality.
Is this my new reality? The silent room gives me no answers, and I haven’t the strength in my lungs to hold my breath for one. I am at the point where I know that I am losing the person I was just a month ago. It’s not the illness talking, I know myself well enough to look past how I’m feeling now but to the future. I have been able to pull myself up from so many of life’s beatdowns, dusted off and told it to Fuck off. But at that time, the good days greatly outnumbered the bad. Am I prepared for the days when my “episodes” outnumber my good days?
I have to do something. I thought I have been eating healthy. I can do better. I thought I have been making good choices. I have to make better. I thought I was feeling pretty good. I must do something better.
When I get out of here, I think to myself, I need to make some changes.
As expected, I was released with an antibiotic after only one day. Left to fend for myself again. Left with time to think, to assess and re-evaluate. Where is my source of power? How do I tap into it again? What needs to happen to make me again crave the challenges outside of my doors more than the comfort of my own bed?
I need to be a conduit of inspiration, not an object of pity. I don’t think I’m overstating this. This morning, when I looked in the mirror…I looked sick. That I cannot accept.
Shit, Bill, I did not know! What a struggle you’ve been through. I know the stubborn side of you won’t give up, and that’s good, but the prudent side of you must take whatever time is necessary, to heal. Fight, yes, but do not fight yourself. As Susan said, you’ve already shown something, with the ability to write this (and well!), so keep doing that. But, no, no pity. Empathy, but no pity.
We are here for you, each and every one of us. Ready when you are. We ain’t the League without our Superman.
In the meantime, rest up. The yellow sun is coming back; that always gives you strength.
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I know you will figure this out and roll with whatever you decide is best. Just think of the previous Friday as a rain check that you will get to claim when you’re feeling better. You aren’t that far away
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Billy…you are no object or pity. Yours is a strength that few possess. Small steps. I agree with Bojana. Fight back as only you can!
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You are doing it tough Bill, but i applaud you fighting as you are, take care of you..
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no tougher than the walk we all face. Just going through a rough patch. They always seem to pass. The one that doesn’t I won’t know about because I’ll be dead right?
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One way of looking at it. A lot of folk will miss you though. A good reason to hang around.
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good to know. Thank you
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I feel you already fighting back. You wrote this. You are pretty fucking amazing!!!!!
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Thank you for those things… Whatever they may be
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You really are too kind. I know I’ll be back to my old self at one point but it’s never fast enough
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My thoughts are with you; I’m liking this to offer strength and perspicacity, agility and warmth, a soft shoulder and open hand, maybe a few other things –
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This is a hard post to “like” but I like it for effort.
WELL….what can I say? I am sorry to hear you were out of H after one day. Seems to me at least a couple would have been better…pneumonia on TOP of your EXISTING med. history should warrant a few more days. Christ, I have patients we can’t get out the door – they live here.
I am disappointed that YOU feel disappointed but I get it…I’d feel the same way about Friday. I will speak for myself but I think Steve might agree; we are close enough that we can schedule another (nicer) day in MA…somewhere middle of the way. Until then my friend, you need to recuperate and FEEL better. Don’t push yourself – BE KIND TO YOURSELF. There will be other days.
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Then don’t Super. Don’t accept it. Fight back.
This is also a time when you have to slow things down, to say, it’s ok not to feel ok at times and to pace yourself more. I’ve been thinking about you for days, I knew sth was wrong. I wish you if not a speedy recovery, then not a long one.
If I could take half of your pain, I would. Sending positive vibes and sunshine your way.
Hang in there, my friend.
Now tell me, what are the nurses there like? Any good-looking ones?
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I’ll be back to my pain in the ass self before you know it, I’m sure of it. It’s just been a rough stretch lately. Thank you for the good words.
As for the nurses? let’s just say that if they got paid by the pound Obamacare would collapse a lot earlier.
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HA.
Get well soon, dear. I’m sure I’m not the only one who misses this pain in the ass.
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