She must have noticed how my face fell in disappointment as my head turned, first to the right, and then to the left of me. I had run into the store to grab a prescription, leaving everyone waiting in the car. As I went to close my door, he asks me to quickly grab him something as well.
I nod my head, irritated as I hurry inside.
Matthew had a craving for Reese’s Peanut Butter Cups lately and asked me to grab a few. I tried to remind him that we had plenty of M&M’s and Kit Kats at the house, sitting in the freezer. The kids had been gone for several days, so the candy hadn’t been gobbled up just yet. But, no, his craving was specific, and judging from previous experience, if I don’t acquiesce, than the craving builds into some incredible hunger monster of epic proportions, often resulting in his “Go BIG or go home” philosophy that ends up with him miserable and having a stomach ache.
Now, I am standing there, prescription paid for in one hand, and three king sized Reese’s packages in the other, hoping to get through the checkout in a minute or two…not the twenty minutes it looked as if it were going to take, judging by the long line of full grocery carts in front of me.
“Would you like to go in front of me?”
I looked up into a sweet face, waving for me to come closer.
“That would be great, thank you!”
I squeezed in between the cart and her, sucking in my stomach as I did this, shuffling my feet in a strange dance as I place the candy bars down on the conveyor belt. In full disclosure, sucking in my stomach does not, in fact, make my ass any smaller as I try this…but it is always worth a try.
I had noticed, as this older lady and I had done our strange shuffle dance, that she had a bandage just under her shirt. I assume it is a port, and I try to glance away quickly so as not to make her uncomfortable that I had been staring. My eyes venture over to the stacks of pizza boxes and frozen egg rolls, and various other over-processed foods. Maybe she has a Matthew at home as well.
She reaches over to rearrange the food, smiling.
“My grandsons are coming over tonight for a sleep over. They are bringing some friends and instead of cooking, I am hoping this might be enough to fill them up for a while!”
I know all too well how hard it is to feed the never-ending pit of teenage appetites. I learn that her grandsons are in their teenage years but still love coming over to Grandma’s house. I share with her I how I can’t wait to become a grandma!
I quickly clarify that I can in fact wait, as my oldest is not quite 18 years old, but that I am looking forward to spoiling babies…only handing them back when I am done!
She mentions that she has enjoyed having her grandbabies over since she moved her almost thirteen years ago.
We talk more about parenting and the joys of kids.
She tells me how perfect her grandkids are. I nod, telling her that my children are also pretty perfect.
“It’s the parents, you know.” She leans in to tell me this as if it’s a secret between us. I laugh, telling her I don’t think I had much to do with it. I was really just blessed with great kids.
“When people tell me that kids today are awful, I just don’t agree! It’s the PARENTS that are awful!”
I can’t help but agree with her a bit on this.
She mentions the cancer.
She is doing really well with the chemo. In fact, today was her anniversary and she celebrated by having another chemo round. Her husband wasn’t doing anything to celebrate, but she seems content with feeding teenage boys with copious amounts of junk food.
She proudly pats the stylish grey bob on her head, “I did lose my hair, but I have plenty still to spare!”
I tell her I am sorry but that I am glad she is still feeling so well.
“It was more emotionally hard seeing all the other patients come in, looking sicker and sicker with each round.”
I nod in agreement again. I have no experience with that, but I can imagine it must be really scary and difficult not knowing.
She says how thankful she is, because she knows it can be worse.
I mention that my husband has ALS but that I have learned to find even the smallest things to be grateful for.
Her eyes widen, and then fall as they fill with sadness, her hand squeezing my forearm.
She gets it…
I give her a small smile, trying to comfort her as she tries to apologize for something she has no control over.
I don’t have any person experience with cancer. I know people who have had cancer. I knew people who have passed from cancer, but my experience with having a close loved one with cancer and caring for them is next to nothing.
However, there is something comforting about looking into another person’s eyes and finding compassion and understanding.
For just a moment, two complete strangers were able to connect about how life isn’t fair, but that joy can still be found in the love for family, a few boxes of pizza and maybe a Reese’s peanut butter cup or two.
And that craving of Matthew’s?
Yeah, those king-sized bars made their way into the freezer, along the other piles of junk food…
It is the same process, every single night.
Mundane…sameness…always the same monotonous events that take place for bedtime.
- Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
- Wash his face, but only in certain spots. It makes him chilly to have his face damp.
- Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
- Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
- One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
- Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
- Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
- Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
- Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs. (The cough is weaker now. Nothing much ever comes out. I can’t tell if I should be thankful for that or not.)
- He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
- Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night. He gives me a pouty face, as I apologize…again.
- My face turns red as I pull and twist the metal contraption over towards the bed.
- Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.
Pay attention, Theresa!
- Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it. Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
- Pull the straps and the sling out from under him.
- He winces.
- Place the bandaid over the bridge of his nose. It looks raw and sore again.
- The mask goes on next. Hit the ON button. It screeches to life.
- Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
- Laying him slowly back, there is one more thing. Scratches…
- Grab the baby powder by the night stand
- Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
- Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
- Check for pressure sores. On the back of his legs and his buttocks.
I grunt again…I swear he is more square than he is round.
- Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)
I give one more hard push…
- “OWWW, I think you did something to my back!”
I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent
- “I don’t think my legs work anymore!”
- Then he giggles.
- Rolling my eyes when I realize he was trying to be funny.
- “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
- “I’ll be right here!” He yells.
- “Don’t move!” I yell back.
- I shake my head with a little grin.
- It is always the same thing…every single night.
He said, “Wow! It’s nice to meet you!”
She said, “hello….”
He said, “We have a mutual friend.”
She said, “She invited me to come listen to the music with her.”
He said, “I am glad you could make it”
She said, “Thank you. I don’t get out often.”
He said, “Can I buy you a drink?”
She said, “no thank you”
He said, “Its been months, how are you?”
She said, “The summer went by too fast”
He said, “Can I buy you a drink this time?”
She said, “Sure, I would love a water!”
He said, “It’s loud in here”.
She said, “WHAT?”
He said, “Do you like live music?”
She said, “Yes, It’s my favorite!”
He said, “You came with her again?”
She said, “I’m her designated driver.”
He said, “Here is your water.”
She said, “Would you dance with me?”
He said, “yes”
She said, “You can DANCE!”
He said, “Wow, so can you!”
He said, “Will I see you again?”
She said, “Maybe…”
He said, “I haven’t seen you in weeks, where have you been?”
She said, “My life is complicated….
He said, “What do you do?”
She said, “I go to school”
He said, “would you like to go dancing?”
She said, “ok”
He said, “Are you seeing anyone?”
She said, “No…and I want to keep it that way!”
He said, “Why?”
She said, “I am recently separated.”
He said, “I was married for a long time too”
She said, “I have children”
He said, “I bet they are great!”
She said, “You aren’t my type”
He said, “I know, but can we keep dancing?”
She said, “Yes, I would like that…”
He said, “We have been dancing every month for almost a year now!”
She said, “I just want to be friends…”
He said, “I know…”
She said, “I’m not ready for a relationship.”
He said, “I understand. I am happy just being your friend.”
She said, “Thank you for being such a great friend to me”
He said, “Who are you here with?
She said, “I am here on a date tonight”
He said, “Do you like him?
She said, “I don’t know yet”
He said, “That guy shouldn’t be flirting with your friends”
She said, “I guess he wasn’t that into me”
He said, “He’s an idiot”
She said, “Thank you”
He said, “You deserve better!”
She said, “I agree..”
He said, “I like spending time with you”
She said, “I need to take things really slow”
He said, “Of course”
She said, “I think you are looking for more than I am ready to give.”
He said, “I have all the time in the world.”
She said, “What’s wrong with your fingers?”
He said, “Nothing, I am sure it’s nothing”
She said, “I am not ready”
He said, “I’ll wait.”
She said, “Please go to the doctor.”
He said, “Go to Cabo with me!”
She said, “I am a single mother, I can’t go to Mexico!”
He said, “It would mean so much to me!”
She said, “Will you go to the doctor?”
He said, “Of course, as soon as we get back!”
She said, “Its beautiful here!”
He said, “Thank you for coming with me.”
She said, “What did the doctor say?”
He said, “He wants to run some tests…”
She said, “It is going to be alright…”
He said, “I have ALS”
She said, “I know”
He said, “I’m scared.”
She said, “Me too”
He said, “Maybe you should leave?”
She said, “I promise I will stay”
He said, “Will you spend the rest of my life with me?”
She said, “Yes”
He said, “My legs are getting weaker…”
She said, “We need to find a new home”
He said, “I want to marry you and dance with you on our wedding day.”
She said, “There isn’t much time.”
He said, “I am sorry we are rushing things.”
She said, “I am sorry that the last time we danced was on our wedding day…”
He said, “I don’t want to use the wheelchair.”
She said, “It’s there when you are ready…”
He said, “I can’t lift my arms anymore.”
She said, “It’s okay, I am right here…”
He said, “Don’t worry, we are going to be alright…”
She said, “I don’t know how to ask for help”
He said, “Neither do I”
She said, “I don’t know if I can do this alone.”
He said, “I feel like a burden.”
She said, “You are not a burden.”
He said, “Happy Anniversary!”
She said, “It’s been 3 years?”
He said, “Its going by too fast”
She said, “I feel so alone”
He said, “So do I…“
She said, “I never get to go out or do anything anymore”
He said, “Neither do I”
She said, “I didn’t think it would be this hard”
He said, “Neither did I”
She said, “I miss being held.”
He said, “I miss touching you.”
She said, “Where did everybody go?
He said, “I don’t think they can handle this.”
She said, “I am so angry.”
He said, “I know.”
She said, “I had different expectations.”
He said, “I think it’s just you and I.”
She said, “You are my person.”
He said, “Thank God I have you.”
She said, “We still have so much to be thankful for…”
I am a member of a club that is unlike any other club you have ever heard of. It is one of those exclusive types. I say this with more of a shake of my head than with excitement. I have never really belonged in a group before. I am not sure I feel any urge to be in one again. I guess I should explain why.
I don’t really fit in, I never really have. I wanted to be one of the cool kids in high school, but I always ended up just feeling like a loser. I was never the athletic type. Although, I was good at volleyball, my mother decided the one time she would parent me on any issues in my teenage years, it would be about this particular sport. She was too worried that the ball would hit me in the face while I had braces. She refused to sign the parental form saying that the high school would not be liable if something happened to me while playing sports or being transported to and from those games.
That meant that my freshman year I would not be playing any sports, and in an incredibly small town, there is only one way to stay out of trouble in high school.
Extracurricular Activities…AKA Sports
But my mother had put her foot down. That was my freshman year. So, I chose to get into trouble instead. Again, I was a bit of a loser back then.
By the time my sophomore year came along, it was too late. My English teacher, Mr. Wheeler hated me, and he also just happened to be the girls’ high school volleyball coach. I had formed a fairly big chip on my shoulder by that time and walked around as if I could care less what people thought of me and I certainly wasn’t going to go out of my way to be some sort of jock. Teenage angst was in full bloom, along with a full disregard to authority. When tryouts for volleyball were in full commencement my sophomore year, I thought I would be brilliantly sly and smoke a cigarette in the dark room! (Hey, don’t judge me. There were several of us who smoked pot in that room almost daily, and Eve Stuckey, the small and fierce teacher who I could never quite figure out what she taught, never seemed to be bothered to use her authority in those moments. It was only when I decided to smoke a cigarette, that suddenly, I was the bad kid and needed detention!) It also meant I had no chance in hell of making the volleyball team either.
Fast forward to adulthood. I have never worked a normal occupation, so I have no strong ties with any of my co-workers, in any of the states that I have lived in. Therefore, I don’t belong to any special groups of people there. Needless to say, even as an adult, I have never really belonged anywhere or to any one group of people.
I am a mother, but I could never quite fit into mommy groups. I was either too happy (AKA to ditzy) , too young, too old, or too laid back about my children climbing trees and eating dirt. I am divorced now, but I refuse to try to fit into that group. Nope, no groups, clubs or sororities for me. That was then…this is now.
When I think of those really cool clubs I would want to be a part of, I always think of sorority sisters, or fraternity brothers. Those people on campus who are impossibly sophisticated and elegant and can hold their liquor all while looking beautiful and composed. They wear their perfect little Abercrombie and Fitch sweaters, beautiful tan legs, and white teeth. By the way, this is not the kind of club that I am a part of either.
Try not to imagine the golf course types. I am not classy enough to fit in with that kind of exclusive group. No, this club has no type of dress code or prerequisite to join. You are automatically in the club once you meet one simply criteria. It is literally that easy.
I didn’t know this club even existed. Yet somehow found myself as a member. There was no initiation, no drinking goats blood or running around a campfire naked to prove my worth. Although, when I think about it, maybe I would have preferred having to prove my bravery or self-worth to be in this club. Then I would know I was in the right place.
I would have liked to have passed “the test,” and known that I would be a fitting match or been given a code name as a way of fitting in. I certainly don’t remember having a friend refer me or that someone put in a good word for me. This club is incredibly selective, and few people are allowed in. Yet, here I am.
Now I belong in a club! But not just any club. This is a type of club that has so many perks, I don’t even know where to begin. This club is unique in its membership.
I remember the day it all happened. The man walked into the room. I was so nervous. I had never seen him before, but I knew his type. He was kind and gentle and intelligent eyes. He was balding, and his glasses sat on the bridge of his nose. He was getting close to retirement, and one could almost tell he really didn’t want to be in the room with us.
I knew what he was going to say before he even said it, but I guess I was hoping for a different outcome. He set his file down on the desk. I was so focused on his shoes. As silly as that sounds, I couldn’t look him in the eye. I stared at the sole of his shoes and wondered if they were real leather or the cheap version at Target. Probably real. I glanced up, gulped air in to my lungs as quietly as possible as I squeezed Matthew’s hand, and sat up straight.
No matter how hard you try, you will never be prepared to hear this. I thought if I looked on the internet and knew all about it, it would lessen the shock.
I thought I could somehow prepare myself.
“Matthew, I’m sorry to have to tell you this, but I believe you have ALS.”
I held his hand, and in that moment, I was immediately sworn in to the exclusive club. I just didn’t know it at the time.
I am his person. I am his caregiver. Not just any caregiver. I am now in the club of people who care for someone with a terminal illness.
Not just any terminal illness, but ALS.
Amyotrophic Lateral Sclerosis.
A disease so devastating, that most people turn away with fear and trepidation when they see us coming. Apparently, we make people a tad bit uncomfortable. But it’s okay. I’ve grown used to those people who lower their eyes and walk past. We are in a club that I hope they are never invited to be in. So, they can ignore us if it makes them feel better.
It has taken me a while to wrap my head around this drastic and sudden change in my life, but now, Matthew and I are a team. Where I go, he goes. We are a unit, a duo, a set, a pair. I am his person, and he has become mine.
I belong to a Facebook support group. Again, this club is so exclusive, we even have our own online support groups. I belong to a group for caregivers who are spouses. I know what you are thinking? They have support groups online?
Yes they do!
I get the pleasure of reading messages meant only for myself and the club members. Those of us who are in this club, we are there for each other. We support each other. There is no judgement, no ridicule, only love and support.
Every day I read messages like this one:
“I know its been a while since I have posted, but I just want to tell everyone thank you for always being there for me when I needed to vent. My husband, my hero, my PAL, is at the end of his journey. He will be taking his last breath soon, and when he does, I don’t know if I feel comforted that he will no longer suffer, or if I am scared to be all alone.”
Or like this:
“I JUST WENT OUTSIDE BY MYSELF AND I CRIED, I CRIED BIG CROCODILE TEARS, WHY , OH WHY , OH WHY …….!!!”
One of the more memorable posts recently was by a man who has had ALS for 30 years! He decided he could no longer go on living. The stress of trying to find a caregiver to care for him, ways to manage money as well as his health, and maintain some semblance of a life, all by himself, with little to no help, and only his eyes left moving in his body to communicate, was simply too much. So, he went online, said his goodbyes, and had the tube in his throat he used to breathe with, removed.
He didn’t want pity, so I won’t dare give him any. The sad part was that he didn’t have a person. He had to be in the club with no partner…
Being in this club isn’t all sadness and death and tears. There are times we laugh, and funny moments we share with each other about being a caregiver. We talk about poop….a lot! We comfort each other when one of our own has had to put their PAL on the toilet for the tenth time that day, or when their oxygen mask doesn’t fit properly and it takes 20 tries to make them happy. We rejoice when there are happy moments, and we cry when we feel helpless and too far away to be of much help. We all feel lonely at times.
Of course, many of us also get the added bonus of being caregivers while working full time, and/or raising children. This club has a vast array of people, of all ages and life experiences.
And for some strange reason, this club seems to alienate all other family members. It’s as if ALS is a great way to let all other family members off the hook. They get to go on vacations, and play on the boat, and go dancing, while we, in our exclusive club, sit with our person, and we stay.
Yes, this is an exclusive club…
I pray you are never invited to join.
I forgive you.
It has taken me five years, but I can finally say these three words and truly mean them.
I forgive you.
It has been five excruciating years. I have held on to this sadness and this rage for so long, I can’t remember what it’s like to look at you without feeling such grief. Trust me, I have tried to move on, I have tried to let go, and still, there it is.
At first, I thought it was my fault. I thought I had done something to make you go away. Maybe I said something? Maybe I didn’t say the right things? I would lay awake, wondering how I could act better, do better, or say the right thing. Maybe I was too weak, and you couldn’t watch my struggles?
When he told you he was dying, you wrapped your arms around us both. We cried. We were all scared. He was dying. You wiped your tears away and looked at us both and promised you would be there for us.
I don’t even know how it happened. It was so subtle. You were busy… Of course, you were. You had to work, or you had obligations. You always needed to be somewhere else.
At first, I made excuses for you. Because I knew there would be no way you would leave me to go through this alone. I knew you cared. You were just busy.
But with every missed phone call, every text message left unanswered, you were in fact, telling me your truth.
You couldn’t handle it.
It’s okay now. I finally understand. Every Facebook picture that showed you laughing, and smiling, each weekend out on the town. The ski trips, the vacations…I saw them all. I wanted to be happy for you. I really did. At first, I even made comments of how happy I was for you. After all, you still needed to live your life. Sometimes, I would stare at those pictures…detesting you. You were so happy, and carefree…
I stayed by his side. I took him to every doctor’s appointment. I kept notes, I kept files, and eventually, I kept sheets, organizing every medicine, every procedure and how to handle each situation, just in case you came back. I wanted to show you what I was going through. I needed you to see what WE were going through together. I needed you to see how overwhelming it was, the day-to-day routine of dying.
I began to hate you. Your text messages saying you would stop by with an old friend. I would dress him and get him ready. He would pick out that shirt that he knew I couldn’t stand, the one with the holes. But it was his favorite because YOU gave it to him. He would be so excited to see you. The excitement would slowly fade from his eyes when he realized you would be later than you said. He would wheel himself back into his bedroom, his shoulders slumped…hoping you were coming.
An hour…maybe two would go by before you would finally appear. The knock on the door, and the loud jovial booming voice, the announcement that you had arrived. Maybe you didn’t understand that we had nothing to do besides wait for you. You would bring another friend, and it was clear you had been drinking, and having fun. Making plans to continue your carousing. We were just a quick stop on your way onto your next adventure. And just like that, you would be gone again. His smile would fade, and he would turn inside himself, wondering why you wouldn’t come around. I started to despise you.
You promised I wouldn’t have to go through this alone. Where were you when he became weaker? Where were you when I had to learn about suction machines, and oxygen rates? Where were you when we discussed bolus feedings, and then gravity feedings? Where were you when he was choking? I would pound on his back and scream, as his face would turn purple. I would be shaking, wondering if the ambulance could get there in time, or if I could help him breathe in time…Where were you?
I would cry. I never did that in front of him. I saved that for the times he couldn’t see me. Standing, with the water running down my back, my hot tears matching the stream swirling through the drain. I would let myself cry, folding my arms around myself, and rock. Where were you when I need someone to wrap their arms around me and tell me I would be okay, that we would get through this? I needed someone to be there for me…
We would try not to become too hopeful if we heard about a “breakthrough” or “new therapy.” We would try…I began loathing those who found optimism in every ALS walk, or those who rallied to raise money. Why? What was the point?
I began hating Facebook. Suddenly, ALS was everywhere, and everyone knew how to cure him. Where were you when we would get article after article sent our way? Would you have demanded people stop sending snake oil cures? Would you have intervened when those well intention people mentioned traveling to Israel or South America for the latest Stem Cell Therapy? Would you have rolled your eyes with me, as we read yet another well-meaning person’s attempt to convince us he had Lymes? Disease, or it was simply a misdiagnosis? Maybe others wanted to find some sliver of hope as well? I had lost mine long ago…
Five years has come and gone. Your visits were short, and few, maybe a handful of times. It must have been so uncomfortable for you to see him like that. To see the tubes, and the skin hanging where muscles used to be. To not be able to hear his voice anymore. I know it bothered you when he lost his voice. I could see it on your face. You kept trying to talk to him, but he could only grunt…and when his lips couldn’t contain the spit he could no longer swallow, it fell slowly from the edge of his mouth, onto the towel I always had placed under his chin. I saw it then. The look of panic in your eyes.
Did you finally see us? The exhaustion on both of our faces? Did you feel regret for not coming by more often, or did you just want to run away again, to escape looking at someone you claimed to love, to get away as fast as possible? I wanted to run away too. Did I ever tell you that? I was scared, and I was so alone, and I had no one.
He had me though…
Because I promised him I would never leave him.
And I kept that promise…
At the funeral, when you tried to hug me, and I walked right past, I am sure it must have stung a little. I don’t think at the time I could have mustered up a fake smile. I have built my wall. I no longer need you. I handled everything, alone. I wonder if you regret that?
But I kept my promise..
Everyone told me. You know how small towns are. They all had to make sure I understood what you were going through. They told me how distraught you were that he was dying. You were so sad, it was tearing you up from the inside. They would shake their heads in pity, obviously so worried about how you would handle it.
But I have lived with a grief unlike anything you will ever understand. I hope you never understand it. I have also gained so much from this experience. You left, you chose to walk away when it became too difficult for you. But I chose him… I still choose him, even knowing everything I know now. I still choose being right there by his side. I made a promise and I kept it. And for that, I have no regrets. I can now walk away, with my head held high, knowing I loved him and cared for him the best that I could. I am tired. I want to close my eyes and find peace, and I cannot carry the burden of his disappointment in those who let him down. I do not want to feel grief or sadness anymore. Not towards you, or him, or anyone else.
I forgive you…
Imagine laying on the bed, a small blanket covering you to your waist. You try to pull it up, but it is too heavy. Your hands can’t grasp the edge and pull. You feel your arms getting colder. You lay there, forcing your eyes shut, trying to ignore the chill.
The blanket is warm against your legs, but it feels so far away. Such a simple thing, to reach down and pull it up, and to snuggle back into the pillow.
Finally, you can’t take it anymore.
“Hey babe….Can you cover me up?”
They reach over, pulling the thin, electric blanket up, and the soft snoring can be heard again within minutes.
Soon, you wake again. This time, as you are laying on your side, your hip begins to ache. You need to move to your back. You know that you have already woken the person beside you several times and its only been a couple hours. You stare at the back of their head, see their body move ever so slightly with each breathe. How long can you hold out?
Sleep is not coming. Instead, your mind wanders. Back to past memories. Like a black and white sitcom, you play them over and over. Remembering the smiles, and hugs from family members. The holidays. All those firsts. Then it turns to the sadder times. You remember scenes from each moment as if they were on repeat. The angry words thrown at loved ones, in anger and in pride. Suddenly those moments that seemed so important, now seem trivial.
Your hip is throbbing.
Still, you refuse to move. You try to make a deal with yourself. You won’t call out until they move first. Remember that game? The one where you would stare and not blink first? Doing anything and everything not to blink or look away. You always won that game! You can do it again.
Whoever moves first, loses. Ignore the pain. Ignore the tingling and sharp needle like pains running down into your leg. You can win. Just don’t think about it.
Has it been an hour? It feels like it. You can’t take it anymore. You break.
“Hey babe…Can you roll me over?”
They groan slightly, moving so slow. Please hurry…
Finally, they sit up, legs go over the edge of the bed, they stand. Why are they moving so slow? Don’t they know how long you have laid there, in excruciating pain? Don’t they understand how long you held out?
The floor creaks, as their feet shuffle.
Finally, they come to the other side, taking the blanket off of you, and grab onto your legs and shoulders, to roll you.
Your bladder sends a message to your brain.
Do you have to pee or not? Because they are up, and if you do and they lay down, you are going to have to hold it…
They turn to go lay back down.
“Hey babe? I need to pee.”
You hear the feet stop. You can tell they are irritated. They turn, mumbling. You don’t ask. You can tell its not something you want to hear anyway. The blanket gets whipped off, a little less gently this time. They grab your leg and shoulder again, this time rolling you the opposite way, and if they aren’t steady, you’ll fall to the floor like a bag of potatoes. Something cold touches you. It’s the cold plastic as they press the urinal against you.
Damn. It doesn’t just happen like that!
You need a few minutes.
Finally, right when you are sure their patience can’t possibly hold on much longer, you feel your bladder cooperate.
Several more minutes later, your pillow has been readjusted, your legs and arms are covered, and they lay down again.
You immediately feel guilty. You know they have to get up soon. You lay there thinking about how much is happening for the day. You know each day the work load gets heavier and heavier. Your guilt builds. How much more can they handle? How much more sleep deprivation and stress can they take.
You can feel your skin itch. You try to move your arm, but your hands aren’t strong enough and it only makes it worse.
You lay perfectly still, trying to breathe through it. Trying to think of another childhood game where you can’t move, you think of freeze tag. Don’t move or you are out…
The back of your head itches. That one is easy enough. You shake your head from side to side, digging your head into the pillow.
Sweet relief for just a moment!
Now the mask over your face has moved from your damn spastic head shaking. Before you can decide if you should call for help, the alarm sounds next to you.
You look to your side, just in time to see them jump out of bed, running over. Their face full of worry.
“Sorry babe, the mask needs adjusted..”
Their eyes go from worry to irritation.
They reach over, pushing the off button. Fiddling with the straps, they get it placed back on, and before they turn, you ask if you can lay on your side again.
With the finesse of a WWE wrestler, they quickly roll you to your side. Adjusting your legs, and blankets and pillows, they stomp back to their side of the bed.
You lay still, trying not to make any more noise than you have to.
You wonder what time it is? How much longer before you can have them get you up and put you in your wheelchair? At least then, you can move a bit more. You hate being in bed.
You hear them snoring again.
How can they do that? How do they fall asleep so quickly?
Then you remember. It’s been years of this. Every night. Some nights are better than others, but every night, you wake them up.
Your mind wonders to Chinese torture practices. Is this how they do it? Wake a person up every twenty minutes? Can a person go crazy?
How long can a person go without sleep? You wonder if you are going crazy?
You giggle, because this isn’t funny, but it is either laugh or cry.
Then the giggle turns to a groan. Okay, this definitely isn’t so funny anymore.
Your hip starts hurting again. You wait. You really try to. Until you can’t handle it anymore…