I could be poetic, but that’s hard to do now. I am grateful to My Maker for keeping me alive and sustaining my hope for a return to a normal life. Someday, somehow.
But if my life were “normal” these are the things I miss. Some may be familiar to you.
Waking up in a Bed
There is something about waking up in a bed, with sheets. Pillows. Blankets. Sleeping flat or snuggled next to your little pup or your partner. Waking up and stretching under the covers, warm and safe.
I remember those days. I’m sleeping in the passenger seat of a ’98 Olds Cutlass and the leather seats are going. And my tailbone hurts 24/7 because I wear adult diapers at 54. The “side effect” of a vascular lacunar stroke.
Eating at a Table with Real Food
Eating almost every meal in the car – it sucks! Food ends up in your lap, or on your top, or on your pants (that’s Will). I miss soup. A simple bowl of soup! And real utensils, not a spork. Whoever made that thing should be made to eat everything with it the rest of his life! Have you ever tried to eat sliced beef with A Spork? How about sliced turkey with gravy, stuffing and mashed potatoes with a spork? In a paper clam-shell that’s disintegrating in your hands? And since it’s the only warm food you’ve had today, and it’s not breaking 60F and raining, you asked for two servings. That little clam-shell is heavy! And you are holding it and it’s not sitting on anything, because you’re eating in the car because you can’t take the noise or the questions or the general polite conversation in the eating hall.
It has been over a week since I took a shower. It’s been two weeks for Will because he gave up his spot last week so I could take a shower. He is so good to me. And the shower we will use is considered a handicap shower at the Church that offers it for use M-W, 12-5. There are many who take advantage, and there are other regular showers. The Handicap has a seat in the shower and space for privacy, or space to fall and not die if you’re unstable. The mat they put down hurts my feet, but otherwise the floor is slippery.
And I don’t have shower shoes.One more thing to keep track of.
You know when you get ready to take a shower? You turn on the water so it’ll be the right temperature when you get in. The water cascades over you, warming your cold bones and muscles. Perhaps easing that ache in your lower back that just won’t stop. Warming your cold feet and hands. Cleansing your face and body. You soap up your scrunchie, or washcloth, and scrub your neck and arms and legs until they squeak. And, if so inclined, shave the bits that shouldn’t have hair.
You grab the shampoo and pour it into your hand, applying it to your hair and luxuriating in the suds encasing your head. You massage thoroughly and you may rinse and repeat before doing the conditioner. Letting the warn water pour over you, rinsing your hair and you shake your head and wring the water out and decide to let it warm you a bit longer.
I remember those days. Now I have to wait for my turn, if I get it, and the plumbing isn’t great and you go from a hot shower, to a cold shower, to a lukewarm shower, to cold again to hot. It’s like living in an old house and your husband flushed the toilet (it happened – more than once).
You ever have a feeling that you’re kinda hungry, but you have no idea what to have and you don’t want to cook a big meal – or you have a hankering for leftovers from last night?
What about just toasting a slice of that Whole Grain bread you bought at Whole Foods the other day. With some cream cheese and honey on top? How decadent.
What about that bit of rib eye you didn’t finish the other night? Slice that up and add some salt – that would hit the spot.
What about that can of Tomato Soup Progresso you found in the back of the pantry the other day? That would be delicious with a grilled cheese sandwich. More work than you wanted, but Tomato Soup and Grilled Cheese? Yum! Comfort food extraordinaire!
You don’t really think about that too much. You take it for granted. Purses hung on over door hooks of nails throughout the closet. Shoe racks under the line of clothes – hung by season and color – from daily wear to evening wear. With tubs with lavender and cedar protecting your kint wear that it has taken decades to acquire or actually make, and not look homemade.
All the socks you’ve knit! There was a reason you were the sock queen! So pretty. So comfortable.
All those sweaters! How you miss the lavender one. It was so cozy and you got so many compliments.
“Where did you get that?”
“I Made it.”
“Ohhh. Nicely done! Wish I could do that!”
A Comfy Spot
You have a spot you like to nest in? The corner of the couch. An old comfy chair. That spot your posterior has been working on for years? You know that spot. When it’s cold and raining and you have a chill, you wrap yourself in a cardigan, or favorite blanket, curl up and read a book, take put your knitting, get that piece your stitching, or the Sunday Times Cross-word. You know that spot? The one that you fall asleep in when you’re not feeling good?
I remember how my couch felt.It’s in storage, waiting for a new home and my posterior again. My comy nest, with my stitching stand and projects in on rollers and in wicker baskets. My knitting projects in their bags with the instructions and my “sock” kit, ready to cast-on a new pair. Or my Cancer Cap bag, with yet another cancer cap in progress for the annual donation. The Red Scarf Project for Foster Kids that have aged out of the system. The Comfort Blankets or ARF, for the pups and kitties being adopted to hopefully their forever home. And all the other charity projects.
Watching TV from my corner, or reading a book to the end while Kevin watched TV. Rooting on the Vikings! Watching the Oscar’s or the Tony’s or the Emmy’s. Or the Simpson’s. Or the Superbowl. Or a rented video.
Streaming stuff from the computer. Yeah, I can set that up on HDMI. No Chrome Stick of Amazon Fire. Who wants you TV watching you? Creepy. Network with security and no hackers.
I miss technology. Sadly, it’s sitting in my storage unit with everything else.
Last but not least – the Toilet
You don’t think much about that, other than “where is it”. It’s down that hall, by the elevator, at the Taco place. It’s close by or you know where one is. And, hopefully, no waiting.
This past Thursday, I saw a Gyne-Urologist. I was tense, worked up, anxious. I have had too many doctor’s appointments where I was told it was all in my head. I need to see a psychiatrist. I’m a hypochondriac. I shouldn’t step out of my lane and assume I know more than a doctor.
Well, if you won’t diagnose me, what am I supposed to do when there is something actually wrong?
Dr. Frink kept me waiting – 3 1/2 months for the appointment and 1 hour and 15 minutes in the Exam Room, but she was worth it.
“So tell me why you’re here?”
“I had a Vascular Lacunar Stroke….”
“That incontinence is bothersome, isn’t it?”
She knows what one of the aftereffects is! I didn’t have to explain anything! This is the just the second time that has happened.
I’ve had this issue since my first lacunar infarct – or four years – and she has a solution. It won’t be easy or quick, but she has a solution. And I am thankful.
I have hope that I can stop wearing the adult diapers that have left my tailbone so sore due to the car and how I have to sit. I can wear Poise Pads again and normal pants, instead of sweats that make me look like I’ve dumped a load and walking around with it. And with the Overactive Bladder medication, I won’t be “leaking” while walking to the restroom at a local Starbucks of Safeway or Home Depot, as most 7-11’s have personnel that speak broken english and are from countries that women are seen as property, and don’t care if you need the restroom. “Go to the Gas Station across the street,” as a staff member goes into the restroom made for the public, but requires a key.
And all those times I would walk to the restroom and I would start leaking, and end up crying when I would finally get to the stall, as my pants are wet, my shoes and socks are wet, and know I have to change so I don’t smell like urine. Get into the stall, take off my shoes, strip my pants and diaper, get out the Personal Wipes and clean up, put on another diaper, dry the sweats with the hand dryer or put on another pair of pants/sweats, new socks, wipe out the wet spot from slip on shoes (can’t do sneakers with the laces – too difficult), and make sure my bladder is empty before getting up and leaving.
And hope no one is waiting or banging on the door to hurry up. It happens at Starbucks I shit my drawers waiting for the restroom one time. The dude was on the phone. And laughing. I hear him as I was humiliated. No one should ever experience that circumstance. No one.
A toilet. No matter it’s age, as long as it flushes and is available, it is a welcomed entity in my life. I worry about having access to it constantly. I worry about an employee giving me grief over needing to use it. A basic need and it is embarrassing asking if you can use it and you’re told no. They don’t offer public restrooms. Then I use the disabled card and who will refuse that?
My Day in the Life. I could write more, but I think you can sense the difficulty for me and Will. We’ve lived in homes we owned. Had furniture and necessities that were useful and provided physical and mental comfort. I miss my books. The feel of them. The smell. I miss knitting, which is so difficult to do in the car with everything else.
I took several hours today to write this because I needed to get it out of my soul It eats at me daily. Like thousands of Sugar Ants crawling around my brain looking for water and a way out.
My therapist Pam had a suggestion to ask my psychiatrist if BrainSpotting may be useful. They map the brain for how your process or react to specific actions. I need that, since I have physical reactions when I feel intimidated or cornered, and I wail and become extremely anxious. Pam also suggested I get a MedicAlert Bracelet since I am unable to talk when these episodes happen, and I don’t need to be 5150’d again because I can’t talk and they think I’m having a bad trip.
The “episodes” really upset Will and he finally understands it isn’t something have and control over currently. The stoicism is gone. I feel stripped naked and on display. It is the most humiliating occurence that could happen to me, and it happens regularly. Why I avoid people. I don’t want anyone to see the crazy freak I become and I hate it to the core of my soul.
Why do I share this? Because I can’t *speak* about it. But I can type. Exactly. My voice is still here, but when I type. No sound out of me. It is so slow and clunky and awkward. Nothing like I used to be. Maybe someday.