The Edge of Darkness

Living day to day, I struggle just to breath.

Trying to keep my calm. Praying for a long reprieve.

Balancing on the edge, each moment that I take.

Stomping down moments of regret, trying to avoid another mistake.

End it now or keep pressing on, decisions never far from thought.

Wishing for a peaceful existence, no demands or responsibilities fought.

For my shattered mind, so fragile, worn thin, how did I get to this place?

Always so strong, so determined, now weakness, an utter disgrace.

Body broken, weighed down, crippled in chronic pain.

Pushing myself, the frustration, no endurance, pushed in vain.

Questioning my existence, anger, fear, and doubt.

Stuck in a hole with no exit, surrounded by a withering drought.

The end so close, I feel it near. Do I reach out and grasp it’s hand?

Even the thought of that decision is simply too heavy a demand.

I think of their faces, my heart and soul, the pain that would never heal.

Do I put that burden upon them? A pain I never want them to feel.

But is my life worth keeping? A weight dragging everyone down.

Unable to care for myself, all the tasks piling up and I drown.

No one here to pass the torch to, everyone looking for me to depend on.

How can they even think it’s realistic, blinded by who I once was, she’s gone.

My hubby, exhausted, I see the burn out taking it’s toll.

He refuses to acknowledge, yet it seeps from his very soul.

My heart breaking in a million pieces, I feel helpless to my core.

Dreaming of winning the lottery, hire help, hire so much more.

Life’s journey, roads traveled, didn’t turn out as I’d expect.

How much damage one’s health can do, lacking services and respect.

No one chooses to be ill, dreams shattered and washed away.

Passions abandoned and unfinished, life in a state of decay.

Never quite enough to qualify for getting my needs met.

Like a dangled carrot above me, while being judged, but don’t fret.

Is it worth hanging on, listening to others scorn?

Sitting in their high castles, while my soul does nothing but mourn?

Cut them out from my existence, not worth the extra stress.

Neither willing to lend a hand, while I continue to regress.

Sitting in judgement seats while my body rots away.

And you wonder why I cut you out, a game I simply won’t play.

Every little bit of stress adds another layer deep.

Breaking down my body even faster while I weep.

My life now down to few, the only ones that matter.

Do I continue to hold on, do I give in to the madhatter?

Like a prophesy once told, left a simple talking head.

But even talking exhausts me, maybe better off if dead.

Dianne MacKay 6/24/2022

A Million Dollars… I can dream, right?

I’ve played the lottery so many times, I’ve lost count. Even if I only got 5 in a row for the million dollars, I’d be content. I’ve entered the HGTV dream home as often as I remember as well. Cash option or the house? What a tough decision but if I won it today, I’d choose the house! (I think!). A fresh start in a new state away from the nightmares of the last 7 years that have plagued me. And better medical! Just the idea of living so close to a good medical establishment is enough in and of itself. A place that understands rare disease, doctor’s who could actually give me and my children a treatment plan and care. Sigh…

The dream of simply being debt free. Free to use the money we have to handle our needs without struggling, without juggling, without having to pass up on things we could really use but can’t quite afford. So many things that could make our lives easier when battling disease but just out of reach for us. A main floor master bedroom with an appropriate bathroom, an office, a pool for hot days when our heat sensitivity flares up as simply entering the cool water lifts the heavy fatigue, dizziness and disorientation in a way nothing else can. I was recently told by my home physical therapist that I simply have two appropriate options for physical therapy that would be a benefit for me due to the conditions I suffer. Water therapy and a recumbent stationary bike. Two items I don’t have and to access them is difficult due to the energy it drains from me simply leaving my home, not to mention how driving is becoming an issue and hubby works too much to take me to my appointments.

To imagine being debt free and my husband being able to simple work a part time job to keep him stimulated while being available to the family to help with our medical needs. I dream. The loss of my career aspirations when I become disabled was a devastating blow, having spent over a decade working towards that goal and then having it slip through my fingers. I feel useless being unable to contribute. Even though I have my VA disability, it’s truly not enough to cover our needs. Imagine being debt free and being able to hire the help we desperately need. Someone to help me upkeep my home, change my bedding, clean my shower, tasks I actually once enjoyed as I’m a stress cleaner and neat freak and now unable to do those simple tasks. It saddens me. I miss my yard work, spending time in the garden. So much work I put into our last home when my condition was moderate and not quite so severe. Yet we gave up that home for extended families sake which ended up being one of the worst mistakes we made.

So many regrets. That home was much more fitting for my disabilities and contained all the touches, blood, sweat, and tears that I was able to put into it, doing my passion, a little here, a little there while still able at that time to at least do something I loved. The regret is a heavy burden I carry, unable to put those touches into our current home that isn’t nearly as set up to meet our needs and nothing left in me to give. If I won the lottery, I would hire someone to design the home in the way in which I imagined when I first set eyes upon it. But I’d still move. I’d probably keep it as an investment but just being able to see my ideas spring to life, even if from someone else’s hands, that would satisfy me. But the cold in our state was not something I thought I’d ever have to worry about.

The bitter cold, so crippling to my muscles. It’s cold about 8+ months out of the year here. That’s just over two months to be able to live my life with less pain and more movement before having to start the cycle all over again and stuck to my recliners and left to my writing, my support groups, and my anxiety over the tasks that never get done. I need a warmer climate. But I feel stuck. The money it costs to move to a whole new state, a new life, starting all over again, I just don’t have that kind of money. The thought depresses me as I know having better health care and living in a warmer climate might actually improve my function and abilities and options. I feel stuck.

I truly dream of buying one of those rectangular hot tubs with the hand rails and moving current. That would be the PERFECT way I could actually exercise my muscles so I don’t lose anymore than I already have. I tend to live at the waterpark during the summer, sitting on a tube in the lazy river and moving my legs as much as I can to maintain what’s left of them. But each year it gets more crowded and the tubes get less and less as I wait for an availability and then worry about having too many pushing people around me shoving me in wrong direction and hoping not to get hurt. It’s not the best environment for disabled people.

And my kids. My kids who need access to top specialists due to certain rare conditions that I would not trust just anyone to take care of. They’re my life. The services are extremely limited where I live. Our state is also behind on access to certain medicines legal in over half of our states but not in ours. A medicine that actually provides some relief and benefit and even suggested by my kids doctor as well as my own but yet, it’s not allowed. What is, isn’t enough. So once again, I feel stuck.

If only I had a million dollars. The ability to pay off every one of my debts, fix the house enough to either be sellable or rentable and the money to move to a place more suitable to our needs, our family. The funds that would then be available to hire the help we need, the devices and services we need, and to finally rest. It’s that time. Rest is needed, the ability to pass the torch and be taken care of. I’ve spent my whole life taking care of others but now it’s my time, my turn, to simply rest. I need rest.

Life’s Downward Spiral… Dreaming of the lottery…

I’m sitting here with a heavy feeling of depression in my gut and tears at the back of my eyes. I feel despondent and at a loss with gut wrenching disappointment and pain in my heart, dreaming of winning the lottery or coming into some money to pay off my debts and simply disappear to a new place far away from my current one. People have let me down. I have let me down. Family, what’s that anymore(?) have let me down.

What is wrong with people in our world?? Why is it that so many look to take advantage of others and then throw it in their face, blaming them instead of manning up and taking responsibility in life? Why?!

I’ve always been a giver, someone who would never leave my family to suffer without offering my hand. We’ve helped nearly every one of our family members at some point in life, even at the expense of ourselves, always at the expense of ourselves (my own family).

Finding out that family doesn’t have our back in kind, doesn’t care about all we’ve done, doesn’t even hold to their basic obligations is worse than a slap in the face. My son says I’m too soft. I’m a bit of an empath, absorbing the emotions of those around me and always trying to help those in need to the best that I’m able. We’ve made decent choices in life to get us where we are financially, living a middle class existence but even still have middle class bills so though we bring in more than some each month, we put out just as much, leaving us still struggling to stay on top of things. Yes, not the best choices and expensive bills. We could have done better. Hindsight..

We actually were doing better just a few years ago, finally paying off bills minus the mortgage and car and living in a nice house that we updated with blood, sweat, and tears as well as a lot of money. We didn’t bat an eye at an evening out for dinner or having a wild Christmas as we worked hard to get us in that place in life. (Or rather hubby did but my disability helps since my health was destroyed and so I guess I earned it by taking one for the team many many moons ago).

Yes, I spoil my children as is my right to do so and my money as well. It is not your business or anyone else’s why I do what I do or how I spend what I spend and most are long term consequences of growing up poor and living on the streets and not having the things my children now do so damn it, I earned that right!! And people who judge and think spoiled actions are the cause of certain behaviors from a child with disabilities can fuck off and try raising their own child with disabilities or maybe do a little research and realize that regardless of ‘things’ the children get, those with the same disabilities still act in kind. It’s the hand we were dealt and I know I’m not alone in this struggle as many many families have children with the same hardships and behaviors regardless of how their raised or the money they have. I’ve LEARNED that and it’s not hard to do a little research realizing the same so you can get off your high horse and quit assuming their, “simply spoiled..”

When you punch a 5 year old in the chest, leaving a red mark for hours, don’t you judge me. When you make your own decisions leaving yourself struggling financially, don’t judge me because we have and you do not. When you complain about having to pick up your own dog’s shit once a week saying my own dogs shits are bigger than her dogs shits… WTF? When you say that you want to live near us so you can help with our burden and don’t want to be a burden on us yet you move out leaving a room full of trash, not cleaned, furniture in our backyard and don’t bother to take care of your mess…. WTF? When you think your phone bill to me, that I pay for on my account, is not as important to pay as your other bills, constantly putting it off and paying late, leaving me asking for the money… WTF? (That’s all I’ve got for you, kid, cause you’ve grown up and become a man. Proud of you). When you call your son’s a pregnant wife a “fucking whore” just because and leave out pictures of his ex wife on purpose, someone you also hate… WTF? When you rant and rave during your son’s wedding, causing a scene and ruining the moment… WTF? When you look at my happy little ultrasound picture of the baby inside me and you say, “Looks like she has a penis nose…” WTF? When you purposely come out into the garage while my child is in a raging meltdown just to bate and record him, egging him on, WTF? When you ask whether I’m your sister or you landlord when I’m asking for money you owe me, WTF? When you lived barely paycheck to paycheck, sleeping on couches, cars, ect cause you didn’t have a home of your own and then you tell me living at my home is like living in a Palace and you’re grateful but then when money is due and you move out, not wanting to pay up and then complain about the living conditions, WTF?

I’m just sitting here with a heavy fucking heart thinking about, dwelling on, all the things family has said and done to me over the years and it just blows my mind. Yet we sold that beautiful home of ours to buy a run down giant fix me upper with tons of room and no storage so we can have a place for family to stay, mainly my mother who can’t afford to live on her own, and gave up our great neighbors, children’s friends, and a comfortable fat financial situation to live in a home at the top of our means, with credit cards and loans maxing out to do the necessary fixes to this crappy house and all I can think is hindsight…… Why the fuck can’t hindsight be foresight and work just as well in my disabled foggy ass brain? Cry me a river, I regret it all.

Now I sit here dreaming about winning the lottery after knowing where all the ungrateful family stands, wishing for that sliver of financial security again and a nice pot of gold so I can give what you gave and finally stand up tall against those who’ve thought it cool to simply take advantage cause we were in a good financial position and rather than working with us, you decided to work against us and act like an ass during the process.. That would be nice. My son says I’m too soft. Well I’m not so soft anymore. I’ve hardened my heart or will be after it’s done being broken and I finish my pity party, pull up my boot straps and start moving forward again. I dream of winning the lottery, knowing it’s not reality and like Murphy’s law, when your down on your luck, I already had the almost winning ticket with one number off on each one, like a taunt and a poke… and yet I still keep dreaming.

On top of all that, a man who thinks he’s rules the roost, taking money away from my mom’s spousal support, 4 of 5 hundred court ordered and yet he takes and she has no backbone or knowledge to get it handled, depending on me to help her while I sit here bitter knowing that she rarely helps in turn and yet on top of that money, he owes her 2100$ (ish) in tax money he stole, $1200 in the stimulus check wrongly deposited into his account, and half of a check sent from the escrow on the house they sold… He thinks he can continue to control and dominate her financially while getting away with it and ignoring the court’s order and so far he has. She just needs to file the paperwork which is actually not easy to find due to crappy court system but I’d already started it for her and she’s too intimidated to get it done, again, waiting on me. If I don’t help her then she’s stuck with very little funds to live off which means it falls on our shoulders in the end. That will change. Mark (his name, haha) my words. That WILL change. Only scumbags take money from others…. Seems a lot of those around.

I’m not perfect. I make my own mistakes, I’m a sucky parent, mostly due to being disabled and having severe fatigue and body wide pain keeping me laid up on my back most days and brain fog with sensory issues leaving me seeking peace and quiet due to brain overload and I feel the heavy guilt every single minute of it. The guilt weighs me down and drags me to dark places knowing I don’t provide enough of the emotional support my children need even though they are indeed spoiled, making it up in one area but leaving deficits in others and I hate myself because of it. If I had one wish between money and health, I’d choose health every time cause I have enough skills and knowledge to do great things and yet I sit here, a blob, doing nothing but day dreaming of winning that damn lottery.

This crisis with the virus has really given prime opportunity to see how family reacts and how seriously they take the health of others, namely myself who suffers too many health issues placing me at high risk. I found it to be the old folks, who are also suppose to be at risk, who could care the least, living with the mentality that they if they get the virus, oh well, not stopping to realize that those actions can directly affect me, or not caring in the least… Yup, I know where everyone stands now. A bitter little pill I’m left to swallow. Daydreaming about living in another state, Oregon maybe, and buying a little homestead with lots of trees, where I can live in my own little oasis in peace away from all those who don’t truly value family and put their needs above themselves, a trait ingrained into us military folks… So I sit and dream…..