It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
The music makes my body sway. The upturned faces, smiling, as they nod their head to the beat. Music fills the room, and the old, young and everyone in-between, are caught up in the moment, and their energy. Parents have their phones out, trying to video tape and take pictures in a darkly lit room. Grandparents are singing along, not bothering with capturing the moment on film, they are content to watch. Matthew and I had snuck in, half way through the show, standing along the edge of the auditorium, as there are no seats for those who have arrived late.
Finally, her choir comes on stage…
She is in the very back. ..the back of the stage where I can’t see but the tip of her head. The songs are sung back to back, with little to no break in-between. The singers are smiling, all wearing ridiculous renditions of what they think the 1970’s and 80’s styles were. I suppose a few of them aren’t too far off. Their dance moves are more for themselves than to show their skills, but they have pure joy on their faces.
I feel it.
I see it.
It engulfs me.
The audience has come to watch these children perform one last time.
I begin searching, reaching back into my memory. Was I every so carefree at that age? I can’t remember ever feeling like that, feeling so much joy? I must have, but it seems so foreign to me. I can’t remember my high school years being very happy ones. If anything, I was in such a hurry to get it over with. I often felt alone, as if I didn’t fit in. I suppose I often feel like that still.
Suddenly, I see my daughter’s face. It is lit up, blissfully radiant, as she has completely let herself fall into the rhythm and song.
When was the last time I saw her like that?
I am struck with fear and regret and shame and guilt. Every emotion comes rolling into me. She will be a senior in high school next year! But when I look at her, all I see is that sweet, innocent baby toddling down the pathway, her little pigtails, and her excitement at every new experience before her.
I can’t remember if I was ever so happy when I was her age, but I want to hold this moment for her. I want to tell her to lock it deep inside of her. To pull from it when she has lost her way. I want to hug her, and tell her that I will always love her, that I am so proud of the woman she is becoming.
I need time to slow down.
It’s going too fast! Please… I haven’t had enough time with her!
I haven’t gotten to enjoy who she is today yet!
I need to tell her how much she means to me, how much her laughter makes my heart burst with happiness and pride. I need her to know that I am harder on her, not just because she is the oldest, but because she has such naïve innocence, and such a trusting and open heart, that I am afraid that if she doesn’t learn fast enough, the world will swallow her up…and I am scared she will make choices out of fear, instead of searching for choices that suit exactly who she is, and who she will become. I simply want her prepared… because those were the choices I made. I was scared…and I was alone…and I didn’t know how wonderful the world could be…
I want her to know that I am here for her…even when she doesn’t do “life” the way I want her to. I want her to hold on to this moment..this exact feeling of freedom, and take it with her, to let it guide her on her way.
So many children, almost grown, all in the spot light, with their fresh faces and youthful innocence. I can see pieces of who they are, and who they are going to be. Some are so confident, yet others have no idea yet the strength they possess. The coming weeks, many of them will walk on stage again, this time to be handed a piece of paper that signifies the end of their childhood. They are rushing towards an unknown, and doing it with such excitement, I don’t have the heart to burst their bubble.
Each of them will fail.
They will fall again and again, and it will hurt. Most of them will stand back up, wipe the dirt off themselves, and take another step forward. The world is wide open for them, and their paths are unknown. I am excited for them… and I am scared for them. Mostly, I am scared, because this is the first time I have felt the intense sadness that this time next year, my daughter will be walking towards her own unknown.
I don’t understand. I am standing there, and I can remember being that exact age. Did I look like that? Did I have confidence, or was I simply placing a smile one my face, trying not to fall to pieces, as the world was suddenly larger than I thought, and there was no one I could fall back on when I failed.
Does my daughter smile, hiding her fears, trying to be brave…for me? Or for the world around her? Or both?
She gets that from me….because I am smiling as I sway along to the music. The song is almost over, as they begin slowly moving and bending, arms outreached, as they softly lower their voices and slow their tempo down. The song, “Stairway to Heaven” is almost over…and with it, the ending of a part of their childhood.
ALS Fact of the Day~
Today may be significant for some of you. Or the hours may have ticked by just like any another day. Maybe you didn’t give much thought to today, but you have been making plans now that summer is coming, and you are looking forward to the things that include BBQ’s, fireworks, sunshine and water!
It is the first of May!
And just like every year on this day: It is the national day to kick off the campaign for ALS Awareness…
This is also the third time I will be reminded of this date’s significance.
I’ll be honest…I will more than likely do what I do every time it is ALS Awareness Month. I will make resolutions to do something to bring attention to the disease Every.Single.Day! And just like every year, I will make it about a week or so before I have petered out, and my attention has been lost.
Please don’t take that personally. I do care about ALS, and all the families this disease has affected. But I also care about other things as well.
So this month, I will once again attempt to write something every day…(knowing myself well enough to know that the chances of me following through with that resolution is about as good as me saying that I will exercise every day, no matter what! Or the times I tell myself I will quit drinking wine…only to start again at least a couple months later…or the time I told myself that I would always fold the laundry immediately after I remove it from the dryer…yeah! I know! It’s never going to happen!)
Here is what I can do:
Today, I will write a little something about ALS. Tomorrow, maybe I will, and maybe I won’t. I’m not going to think past these two days…But today, I can give you a few facts about what I have learned along the way…
Today’s fun little facts ~
Fact~ You have no control over this disease until you choose to control your thinking about the disease.
Fact~ This disease affects people all over the world. It does not discriminate. It can affect a woman in her sixties, as well as a young boy who is ten years old. At this moment in time, there is absolutely no control over who will be affected or how to stop it.
Fact~ You will never be ready for all the challenges that are thrown at you, either as the caregiver, or as the patient.
Fact~ As soon as you accept that you have no control over the disease, it will stop controlling you…
Fact~ I have been incredibly blessed these last three years. I know this. I am beyond grateful for how much easier my life is compared to so many others. I try incredibly hard to give back as much as I can in other areas, because I understand how lucky I am. Gratitude is practiced…every day…One person is not born with the ability to be grateful all the time versus another person who can never find it.
Practice Gratitude…every day!
Fact~ No matter how good or bad your situation is, you can still find things to be grateful for. You are still in control of how you respond. (Don’t believe me? See the fact listed above!)
Fact~ What you say, how you say it and how often you say it WILL affect your thinking. Maybe that is why I try my hardest to never say “F*ck ALS”
I mean I say a lot of swear words…daily but saying that only feeds the anger and rage at something that is out of my control. Why keep repeating and reminding myself… I get it! I live it..
Fact~ Many things suck in this life. So what! What are YOU going to do about it? Are you going to swear and get angry at the things you have no control over? Sure..get angry for a while. Kick, scream, cry…fall to the ground, punch a pillow! Do what ever you have to do in the moment…. But don’t stay there….Don’t keep that anger inside of you…
Fact~ You cannot get through this alone…so don’t try.
Fact~ There are always options. No matter how bad it gets, how horrible and rock bottom you think you have hit….there are ALWAYS options!
Don’t believe me?
Read the book, Man’s Search for Meaning by Viktor Frankl.
There are always options…even if the only option is your attitude about having no options…that is still an option! 🙂
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…
The stucco house could be found on a quiet street, neatly kept along a wide road. The giant tree outside was planted especially for each and every child who tried to wrap their arms around its giant girth, for family photos throughout the years. For the really adventurous, that tree stood strong and steady for each child to pull themselves up to the nearest branches and claim victory to those who were unable to scale its massive trunk.
I had never noticed how small the house was. I only remember feeling excitement every time we would pull the car along the curb. Every single time, without fail, there he would sit. He always wore a white t-shirt, his suspenders to hold up his sagging brown pants. It was hard to see from the street, but he wore an eye patch over one eye, and kept his spittoon near-by to spit his Copenhagen into. Sometimes, the spittle would run down his chin and onto his white t shirt. He would wipe at it from time to time with his hankie, with only a few fingers on each hand. He had been missing fingers and toes for I don’t know how long, but I had never thought much about it, since that is the only way I had ever known him to be. He would gaze out his window, at the giant tree that intimidated some, gave shade to many, and seemed to give him company when he no longer had anywhere he needed to be.
The walkway was narrow, and with a pull of a handle, the door would give a familiar squeak. I remember hooks to hang your coat on, a dark small cramped area to remove shoes and then with a few more steps, and a push of another door, a small warm home enveloped all who entered.
My grandmother would be sitting in her chair, across the table from my grandfather. My grandfather would bluster, yelling for us to come in and close the door. My grandmother would gingerly stand, and I would run towards her, anxious to smell her, and feel her arms surround me. I can picture them as if it were yesterday. I remember the smells of soup on the stove top, the lemon candies in the glass bowl that would make my face pucker. I would sneak more when no one was looking. My grandmother seemed to delight in anything and everything I did, and she loved to watch me dance, or play. She had a magic about her that I have never felt since.
Dinners were filled with cousins running throughout the house, and aunt and uncles taking up space in the chairs, couches and love seats. I could crawl into each and every lap and know, without a doubt, that I was loved. No matter the time of year, if we visited my grandparents home, it was filled with family, laughter and love, as if these emotions and people were bursting from the seams of every room. Outside, a fridge filled with soda, lawn chairs and a wooden swing, and most importantly, the bug killer! This caged blue light seemed to hypnotize flying insects of every size, zapping and sparking, delighting every child, as they watched with excitement and a bit of awe, as each bug would fly to its doom, causing the blue lights to spark and flash. The strawberry patch, the gardens, the flowers and the fence. There are just so many memories packed into such a small time frame for me.
These are my earliest memories. These memories are of a childhood, and of a time that seems to have stood still for me. For just a moment in time, I had a real family. Parents, two brothers who I loved to annoy, but would protect me at all costs. Grandparents, aunts and uncles with cousins running everywhere.
Those memories stop when I was five years old. My father died. With his sudden death, everything in my world changed. The good times became less and less, and the safety and security I felt in those early years were just a memory.
Is this why I struggle now? My expectation of what a real family should be is so deeply ingrained in my memory, that there is no way anyone could ever hold a candle to “how it should be.”
All these years later, I have yearned to experience those moments again. When I was eighteen years old, I eloped with a man. He was an only child. There would be no cousins for my children to grow up with, to tease and torment, and stand in unity against the world. Many years later, when I met another man who would ask for my hand in marriage, I would have an expectation again of what family should be. I have since learned that my dream of having a close family, with cousins for my children, and aunt and uncles for my children to lean on for support will never be their reality. I think this has been weighing on me more and more the last few months.
This time, I am older, and I realize that expectations are as close to the devil as one can get. But damn, sometimes it hurts to realize that moments will never be repeated. Feelings can never be undone, or forgotten, and families will still disappoint.
Is it the innocence I miss, or the disappointment that my expectations were set too high? After all, expectations are just disappointments…better to not have them, so as to keep your disappointments to a minimum…
The parking lot is full. Thankfully, I am in my car by myself, so I don’t have to try to look for a handicapped parking space. That doesn’t mean that I don’t hear Matthew’s voice in my head, making fun of me for wanting to come to this store. I kind of smile a little. He doesn’t know this, but even though he is at home with the caregiver, I can still imagine his comments or what he would say to me when I am running my errands.
As I go another round through the overly cramped parking lot, a car pulls out in the front row.
I pull my car forward slowly and try not to get too close to the overly large van parked illegally in the spot right in front. Irritating, but not impossible, I inch as close as I can, while still allowing whoever parked like that to be able to get in to their vehicle. I notice the handicapped sticker hanging from the rear-view mirror.
As I approach the front of the store, I notice that there are no handicapped spots available.
The van stands out, not only because it is parked in a no parking spot, but because of its size. It is the older version, a 1980’s heavy, over-sized and two toned blue. Newer vans are sleek and blend in with other mini-vans. It is hard to tell the difference between a mom or dad with small children in their car versus a person driving someone who is handicapped these days. I smirk as I see this van sitting there, obtrusive and large. It is how I would have wanted to park if I had been in a bad mood. I can hear Matthew’s voice again in my mind telling me to have some patience, and to keep driving till a spot became available. I would listen to him, but inside my head I would want to park exactly like that giant dark blue van, as if to say to the people who designed the parking lot that they planned poorly, and I would shove the stick into the P position as if I were parking with a middle finger in the air.
Inside, I grab my cart and head straight for the produce. I love grocery shopping. It is the only shopping that I love to do. To see all the brightly colored fruits and vegetables, and to smell and touch, and pick out each piece. I can feel myself relax. If I don’t have children or am not rushed, I will linger in this area longer, often buying much more than I need to.
As I am picking out my oranges, I see him. It’s not hard to figure out that he is the owner of the big blue van.
He has a Vietnam Veteran Hat on, his pants are saggy on legs that have no muscle left, but his forearms are strong from pushing his wheelchair where ever he needs to go. I am several rows back, so I can observe him without seeming rude. I notice how some people take up a wide berth around him, as if their body language suggests that his handicap is contagious. They don’t make eye contact with him. They shove their carts quickly away. Others pretend not to see him and stop right in his way, looking intently at what they are grabbing, trying to act as if he doesn’t exist.
I often wonder if people are really that obtuse, or if they really aren’t aware of what is happening around them. I can see the flicker of irritation on his face, as he has to maneuver his chair around them, while balancing his small basket of produce on his lap. We eventually end up in the same area together. I make eye contact and smile. He gives a small smile in return, intent on his mission to get in and out as quickly as possible.
I continue on my way throughout the store. I buy more than I need, which happens when I don’t have a list to follow or a menu for the week.
That man and I cross paths several more times, both smiling and nodding as we grab what we need.
It must be so frustrating to be so limited. I have a cart that I can fill to the top with items, most of which are probably not necessary for the next week, while he has no choice but to only get what he needs because he can’t push a cart and operate his wheelchair at the same time. While I can easily walk up to the check out and unload my purchases, and chat with the cashier, he has to navigate and maneuver, and scheme to do his errands. It must be so difficult for him to do things that I take for granted.
As I push my cart outside, he is there, next to the big over-sized van. The lift is being lowered for him to be able to wheel inside and drive away. I ask him if he likes his van.
Not the most intelligent of questions, I know, but I wanted to strike up a conversation with him. I could sense that he was shocked that I had stopped to talk to him. I walk closer, so he can hear me better and repeat my question, asking him if he liked his van or if he would prefer to have a newer one.
It is amazing when we allow others to talk, and we engage with them. People want to be heard. They want to be seen. I also think, we all just want to be recognized and accepted for who we are.
He tells me he is a Vietnam Veteran and he spends his time between here and a small town in Montana. I am familiar with the area, as it is twenty miles from my home town. We talk property prices, and how the area is getting crowded. We complain about the people moving here from California, and how this town is changing so fast. We both agree that having a cabin in woods, far away from people seems more and more appealing. He has been paralyzed for over 40 years. He was in the Army. I tell him about my husband, a former Marine. We talk wheelchairs and vans. I tell him about our non-profit foundation and home automation. His eyes light up and he wants to know more. I hand him my card and he promises to keep in touch.
He is flirting with me the way older gentlemen do. I smile, and flirt back. I don’t get compliments often these days, and it is nice to be told I am beautiful, and I imagine that he doesn’t get many women who smile and giggle with him as well. He is old enough to be my father, but it is still nice to feel a connection with someone.
We say our goodbyes, and he loads himself up into his van, starts the loud engine that gives a puff of black smoke. As he drives away, he gives me one last smile and a wave.
I haven’t seen or heard from him since.
Many people believe they are inclusive and accepting, but I see their actions as otherwise. It is human nature to turn away from that which makes us uncomfortable, or from those who are different. Those who are handicapped live with the struggle of simply living every day in a world that does not accept them or want them.
When is the last time you made eye contact with someone, simply acknowledging them with a nod and a smile? When is the last time you chose to have patience instead of irritation at someone driving slower than you, or who accidentally cut you off in traffic?
Can you say, with absolute honesty, that you have looked at those around you, and made sure to accommodate them first, even if it meant waiting a few extra moments for them to maneuver or navigate the same area as you?
Look around you.
What does it take for a person who is in a wheelchair, or who may not be able to open a door, or speak with clarity to move in a world that does nothing to accept them? The elderly move at a slower pace yet feel ostracized for their lack of ability to keep up. Often being almost pushed to the side to make room for those who are younger and more agile.
Hotel rooms advertise handicapped accessibility, but really, all that means is that they have installed a handrail next to the toilet and shower.
Parking spaces are few, and are open for all with a handicapped sticker, leaving those who are really in need of a closer space to wait or go to the very back.
Aisles are not open enough, and checkouts are ridiculously narrow. Have you ever noticed the handicapped stalls in the restroom? Can you imagine trying to move from a chair to the toilet with so little room?
This is what I see everywhere I go.
A world that does little to accommodate or make it easy for those who are different. The actions of the people around them prove to them every day that they must change, adapt, or stay home, because the majority will not notice or care.
Next time you are in a crowd, stop and look around you.
Notice what others take for granted…
Bad things happen in three’s. This is a true story about those three things…a computer, procrastination and panic, and a razor.
I woke up this morning, knowing I need to hurry up and get out of bed. I am mentally preparing myself for the fact that I have to scramble to pick up the house before company comes over. My computer had been glitching out the night before, and I had an ethics paper due by midnight tonight. I did my usual and procrastinated. Of course, as soon as I realized I really needed to start the paper, my screen went blank.
“okay…what just happened?”
I turn off the computer, count slowly to 30. Then hit the button and see the light appear. I try again. A few minutes later, as I am reading what the assignment entails, the screen goes blank again!
“Oh no!” Heart pounds, anxiety level increases, brow furrows.
1. I can grab one of my children’s laptops. They don’t have Microsoft word, and I don’t remember any of my passwords to get online for my classes.
2. Cry and whine about it and feel as if life is cruel and unjust. Lament at how technology hates me and try to come up with a believable story to the professor as to why I can’t turn a paper in, that I have had more than enough time to finish.
3. Text message and appeal to Microsoft professionals that I need help, and hopefully they take pity on my plight and offer their assistance!
I went with Option 2 and 3!
Text message appears that help will arrive in the morning! (It helps to know people!) I quickly calculate that I only need about 3 hours to pull this paper off and make it look like I know what I am talking about, so anxiety level goes back down! I’ve still got time!
What do I do instead?
I stay up till midnight, because of course that makes sense!
Matthew wakes me at least 8 more times, till finally, in the wee hours of sunrise, he finally falls into a deep sleep. Who am I to wake a sleeping giant? I sleep too! Until suddenly, my phone has a text message that my knight in shining armor and his lovely assistant are arriving as soon as they eat breakfast!
Matthew is still sleeping, the house looks like miniature terrorists have been camping out for weeks and I am pretty sure I can not get away with a perfume bath for the day! So I lay there, pondering how I can get at least one of my children to bring me that sweet nectar of life that I need in order to function each day.
Not a single sound can be heard, and the teenager isn’t answering her text messages with my plea for coffee.
I must get it myself.
Then I realize I have spent more time trying to coerce people into bringing me coffee and I have less time to get Matthew up, brushed, washed and medicated now.
With a flurry of activity, I start yelling at my children to help!
“Kaden, put the clean dishes away…Richelle clean up the couch!”
They grudgingly comply.
I manage to get everything looking as if I have had it all together to begin with, and jumped in the shower, when I hear the dog bark. This tells me that I need to speed things along, as company (AKA – Microsoft god who can fix my technology issues because I procrastinated and have to get my computer fixed in time to write a paper I care nothing about, nor have read any of the material on, ! Shhhh..don’t tell the instructor!) has arrived!
I lather and begin to scrub my body and reach for my new fancy HENRY razor!
Dog keeps barking, as I am shaving…with my good arm…because now I have a pulled muscle in my shoulder from lifting Matthew a few nights before, and a wrist that has severe inflammation and tendinitis… again, from moving Matthew. So essentially, I am down to one good arm!
Did I mention that this new razor is AMAZING!? Yep, best razor I have ever used!
Until I notice I have given myself about four tiny cuts around my ankle from that razor!
WAIT! Cause it gets better!
I look down and can’t believe I have cut myself so badly.
I keep shaving, still trying to hurry…
And I cut myself again with that new razor, just under my knee!
I go to switch legs, and the dog barks. Now this is the strangest part of all!
I turn my head to yell at the dog who is actually on the other side of the house. Why I am screaming from inside the shower to get the dog to stop barking is beyond comprehension at this moment. I go to switch legs, and somehow, and I still have no idea how I did this, I slip my razor across my nipple in my rush.
I kind of glance down in disbelief, hand stopping in midair.
Did I really just cut my nipple with my HENRY razor?
Then the stinging begins, followed by droplets of blood.
I am not the most graceful of creatures. I know this. Everyone who knows me, knows this! In fact, I believe Matthew has referred to me as a “Bull in a China Shop” more times than I can count.
But seriously….I cut my nipple?
So, I rinse off, step out of the shower, grab a towel to dry off. I look down. I am dripping blood from my boob to my feet! It is everywhere!
I didn’t think nipples and face wounds were in the same category for blood and gore, but apparently they are!
I am trying to get dressed, but it looks as if Freddy Krueger took a few slices at me, and I am smearing blood all over me, trying to dry off! I keep rushing, trying to throw a little make-up on, and not look like I have been in a bloody war zone when I emerge from my bathroom, when I jab my eye with the mascara wand.
That was it!
I ran out of the bathroom. I was liable to get hurt worse than I already had and could not be trusted alone!
Alls well that ends well however!
The computer appears to be fine. We had a lovely visit and I am not doomed to bleed out from my poor nipple anytime soon!
I am trying to find the lesson in procrastination and razors and nipples, but nothing comes to mind at the moment.
But if you ever wanted to experience a moment in a caregiver’s life, I thought I would be as open and honest as I could be, just to make you understand some of the trials we face on a daily basis!
Some are self-inflicted, and some are out of our control!
We just gotta take the good with the bad, I guess!
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…