When I write, I never know if what I’m producing will result in a journal entry, written to and for ME, or something that could perhaps be material to share, written to the Third Party Abstract – or you – or her – or him…it depends on the moment.
So here I sit today, with something precious called “time” which came about rather unexpectedly. I can’t go to the store as planned today because I have no one to care for Phil, so I’m at home, and Phil is still catching up on his sleep deficit from the week. It’s cold, and it just snowed last night, and it seems the perfect time to sit down with the old clunky laptop, my morning coffee and cigarettes (having fond memories of my Grandma Straus) and write. Now, understand, I have a whole word document called “Blog Titles”, of things that I intend to write about, but don’t have the time to right then. So, I have a file of phrases and topics I’d like to mint into my two cents. But today, I am having a hard time getting past this seemingly insignificant moment – waiting for something important and meaningful to happen to write about.
It’s been a hard week. Trying to resuscitate our faltering business has us at the store two days a week now – which means trying to find someone to come and be with Phil from 2:30 to 5:45 – and the powers that be have approved those hours and will pick up the tab. But try to find a caregiver.
That’s a frightening thing, the fact that no one wants to be one. Take a look around you, Boomers – do we think we will escape the need forever? How close to home does that little bomb have to hit before we realize that we have kinda failed to prepare our kids for this potential reality. Oh, I’m not accusing us of raising a generation without compassion – but it’s so sanitized. Just like our food. Just like our homes. (With the exception of mine at this time!)
Ask any kid who is job hunting why they don’t go to the nursing home and apply to be a CNA. There is clearly a shortage, and the pay is not bad. They will quite bluntly tell you, “I don’t want to wipe butts.” And why would that be? What have we taught this ultra clean generation? That bodily functions are gross, and to be hidden behind closed doors. That fact that human beings sweat, and stink, and leak, and piss and shit, and fart, and deteriorate, and break, and ooze, and produce phlegm, and spit and cough. We have bad breath and rotting teeth. We are covered in skin which produces varying amounts of oils, and have zits and boils and sores. We are bathed in bacteria. We gain and lose weight, we sag and loosen up as we age. This is the way we came. This is what we all live with, and this is how we leave. And we have taught ourselves to intentionally deny all of the above, and have made an empire out of the heath and beauty industry to make sure that people everywhere believe that this is not so. That we must use product upon product to make sure that no one knows about you what everyone knows about themselves. We are human.
Since we are so busy despising the human condition, and spending billions a year to cover it up, what does that leave a caregiver to talk about? The little contact I have with people usually finds me answering the questions of “How is it going?” with “Fine,” and other monosyllabic answers. Not only do you not want to tell them about all the crap that kept you awake last night, but they don’t really want to hear it, either! (Can you blame them?) And I can’t help but wonder what other people must be facing down that they just don’t want to tell anyone about? My mountain of laundry, my pigsty of a house, my financial terror are all things I avoid talking about.
I recall the days as a stay-at-home mom, where you bust your butt all day and it doesn’t look like you did a damn thing. I find myself in the same spot now, except I don’t even get the housework done. I wake up at 6:00 and get Phil ready for school. He gets on the bus at 7:20 , and I get a cup of coffee. Mark and I head downstairs to pack and ship our eBay stuff.
As an aside here, I will say that while working at home has it’s convenience; it also has its downside. You know how you see the internet ads to “Work at home in your PJs!” Well, what they don’t tell you is that the only reason you are in your PJs is because you didn’t have time to get dressed, much less shower, and you have been wearing the same PJs for three days.
We ship between, say, 6 and 20 packages a day, which takes time and packing material and labels and a trip to the post office – hopefully before 12:30 when they close for two hours. In order to keep selling stuff on eBay, you have to keep listing stuff on eBay. My basement houses inventory I have not even seen in two years. Yeah…it’s that bad. It’s also home to 25 years worth of my shit that has been languishing down there while I get over my emotional attachment to it all. So, things need to be sorted and inventoried and photographed and downloaded and uploaded and listed and described in detail. My conveniently located washing machines and never-ending piles of laundry make sure that I never have a block of uninterrupted time during this part of my work day. Eating between 6:00 and 2:30 is only undertaken when my blood sugar reminds me that fuel is required to keep the body running, and coffee doesn’t count.
On any given day, the eBay job is further interrupted by phone calls that have to made, bills that have to be paid, letters and e-mails that have to happen, bank deposits, grocery shopping, feeding the dogs, physical therapy appointments, occupational therapy appointments, doctor and dentist appointments, the ever-popular DMV visits, car troubles, kids activities, school activities, meal preparation, the intent to clean the house and bathing. Not necessarily, but pretty much, in that order. And then Phil comes home. And I’m always happy to see him – but now my second at-home job kicks in.
A trip to the bathroom is usually on the schedule, and suffice it to say, I shouldn’t have anything on the stove when we undertake that activity. This is where the brakes go on, the door gets closed and we don’t talk about what it takes to help another human being with this particular bodily function. Most of us alive today have no clue why they ever had an outhouse with multiple seats in it. Half the population has “shy bladder” and can’t possibly do their business in the company of other people without at least a partition between them. But in the home of a caregiver, this has been taken off the list of things we don’t talk about, and moved into the realm of things that happen every day, the matter-of-fact.
In fact, I now envision the multiple-user outhouses as a rather sacred place. When you are involved in an activity with another human that involves the basest of human function, superficiality is suddenly absent. We understand this in term of sex – where the primal intimacy between lovers results in uncensored pillow talk and some of our most meaningful conversations. Things are harder to hide when you are flesh to flesh. The static fades, and there sits the REAL you. But subtract the romance and take it from the bedroom to the bathroom, and suddenly to the average person, it sounds like an “I really don’t want to go there” place. But I’m here to tell you that it tends to be much the same encounter, on a different level. What a better place to ask questions about sensitive subjects, that you really can’t ask when you’re watching TV or eating dinner. Talk about a captive audience. Is there a better place to sit laugh about all the woes of being utterly human? Don’t we all talk about envisioning an audience in their underwear? Well, this is the epitome of that. This is the place where I get to be a 12-year old again, and Phil gets a glimpse into the 40-something life. Over the commode, we have had some great laughs and a few cries. We have talked about birth, and death, and sex and babies. I’ve answered questions that I’m willing to bet many parents have not had to answer for their 12-year-old boy, mainly because the only safe time to ask what certain words mean without fear of raised eyebrows and voices is when you are on the shitter with your pants down. But it’s not like he’s going to find out from his friends behind the tree house, and I don’t want my son to be the only one when he does get together with his peers to be confused about the terminology flying around, appropriate or not.
Having made it to around 5:00 o’clock , we have to at least THINK about dinner, if not actually make something. And the thing about being broke is that your refrigerator does not contain any food. Just ask Phil who will stare incredulously into the refrigerator and exclaim, “There is nothing to eat! There are only recipes in there!” Another night of the ever-disgusting Hamburger Helper, frozen pizza, buttered noodles, or the old stand-by, cereal. I peruse the nutrition label on the box while eating just to make myself feel better about the whole experience, and feel amazingly glad that Phil’s primary source of nutrition is direct deposited during the night via his g-tube. No matter what’s on the menu, it requires time to sit and help Phil eat. He’s got a neat little mechanical arm called a deltoid assist that we hook on his chair and he can raise and lower his arm to the tray, but he still needs supervision and service.
While the other kids have entertained their social lives between the hours of 3:00 and 7:00 or so, Phil likes to spend some time playing video games, playing legos, or indulging in his Facebook social life. (If you are his “friend” and see him on line, hit him up for a chat, eh? He loves to chat and will watch TV with his Facebook open in hopes someone will pop up in the box and talk with him. Breaks my heart sometimes…but the social life of a kid in a wheelchair is another blog altogether.)
Feeble attempts to clean up the kitchen and fetch the laundry and tie up any loose ends on eBay are made, before exhaustion sets in, and we have to think about bedtime. I am learning never to use up all of my energy before putting Phil to bed. It’s the last 90 minutes or more of my day, and it’s a marathon. It’s a routine of feedbags and bed prep and potty and g-tube and medicine and warm milk and changing clothes and tooth-brushing and bed boots and blankets and pillows and supports and stuffed animals and positioning and reading or talking. By the time I have brushed my own teeth and gotten ready for bed, it’s about time for repositioning, and finally, I get to crash – at least for a few hours, laying there thinking about how old I feel as I fall asleep. Until I hear Phil call again, needing to roll over.
Next thing you know, it’s 6:00 a.m. Wake up and trudge into the kitchen to make the coffee, and look around at all the shit you didn’t get a chance to do. Vow to do it today after you’ve taken care of all of the same stuff you did yesterday. Starts to feel like Groundhog Day. (If you haven’t seen the movie – you simply must.)
So in the context of this life, and all that you must do, and all you cannot do, or can no longer do, I’ve arrived at yet another life lesson, which we talk about, but rarely do unless forced to, and that is:
To live in the moment.
It’s a fine aspiration…a great credo…a noble goal. But the reality is that unless you are given to contemplation on a mountain top in Tibet Europe , but a week-long excursion to the hospital, most expenses paid. What in insane adventure that was! It’s about quality time, not in the hot tub on a cruise ship, but stroking my son’s hair as he falls asleep and not being in a hurry to get somewhere else.
How many of us would love to throw the clock out? Well, other than a few highlights on the dial, I have actually accomplished this. The position of the sun doesn’t mean much anymore. Make sure Phil gets on the bus on time, and be there when he gets home. Other than that – it is of no consequence. It’s an autopilot feature that doesn’t even suggest that you look at the clock when he calls out in the middle of the night. Who cares? To look at the clock in the middle of the night is to fuel thoughts of “Oh, my god, I’ve got to get up in x hours…I’ll only have gotten x amount of sleep”, and other such depressing views. He needs to be turned in this moment. I’m going to do this, and enjoy the moment of seeing him comfy again, and the moment of getting back into the comfort of my own warm bed when I am done – even if only for a small amount of time.
Life happens in increments – small ones at that. It doesn’t lend itself to accomplishing cleaning out the closet, or tackling the clutter, but every moment is just that: A moment in and of itself. I can live in it, or I can live like I have for most of my life, looking past it to what is next, barely noticing a smile, a smell, a look, a detail within that moment. When I find myself hurrying through some task, just to get to the next one, I find myself angry, and flustered and upset and riled up. But when you see me swearing at the computer for not printing a label fast enough, it’s not about the computer. It’s about living for the next moment instead of this one. And the lesson of late has been to slow down and wonder if the package I am printing the label for is going to THE Terry Bradshaw, or someone with the same name. It’s about taking the time to be amazed at something as simple as a roll of tape, and wonder how they mass produce the stuff. And being glad I found my postal supplies so cheap, while I wait for this space-age device to spit out the postage – a feat we never thought possible 30 years ago. It’s taking the time to marvel at the fact that there is never nothing going on.
It’s taking time to overcome and cancel out years of conditioning to be proactive and forward thinking about everything. But the exchange is a free pass, of sorts, to ignore tomorrow in lieu of today. It’s giving myself permission not to freak out about stuff I have no control over, and look for just one piece of the puzzle at a time, and not feel that I have to finish the whole thing in one sitting. Kind of like a “Get out of Stress Free” card.
I’ve come to the place where Reinhold Niebuhr perhaps found himself when he penned what we know today at the Serenity Prayer, in an extended version:
Grant me the serenity;
To accept the things I cannot change;
The courage, to change the things I can;
And the wisdom, to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace.
Amen.
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