Capsizing in the Storms…

We had a storm last night.

We’ve had worse. Tornadoes, even. But last night’s winds were brutal, and we had quite a lot of rain as well. I surveyed the situation in the light of day and made a little video showing what was what. In making the video, however, everything started getting to me. You can sort of hear it in my voice towards the end as I get choked up. My frustration was wearing on me pretty hard.

You see, it’s about more than just a little windy storm.

I feel like my whole life consists of fighting multiple ongoing storms right now. Health storms. Financial storms. Political storms. Mental health storms. Everything seems to be constantly thundering all around me, and I am helpless to do much of anything about them. I feel as if I am carrying the weight of the world on my shoulders. I do tiny bits here and there to try and protect myself or to “right the ship,” as it were, only to be capsized even more by more storms.

I had a craniotomy in September. It was meant to repair my CSF leak, and I was led to believe that this would solve a lot of my health issues. But it didn’t. It made things worse. It seems that now my intracranial pressure has gone into rebound mode and is high once more… when I was leaking, it would go lower… now it is higher and causing migraines, dizziness, nausea… and now vision issues because of pressure on my optic nerve. So I have to have yet another procedure. On the 24th of this month, I have to go to the hospital and have a lumbar puncture. They need to measure my pressure and possibly drain a bit of fluid (not sure yet). I have to lay flat for a couple of days immediately after to try and avoid springing yet another CSF leak (but this time in my spine). And… oh yeah… even if I take all these precautions, there is still a 30% chance I will spring a leak anyway because I have connective tissue disease. And what if that happens after I have made the 2.5-hour journey back home? I will have to rush to a local hospital ER to ask for a blood patch. They will go back into my spine with a needle again and insert blood to try and patch the hole. It may or may not work. It may or may not take several attempts before it does work. Not to mention, these local hospitals aren’t exactly up to snuff on a lot of this stuff, apparently (which is why I have been sent to Atlanta for my ongoing care in this area). More storms. Capsizing.

All of this is on top of the stress of my mortgage payment, which recently went up $350 a month because property taxes went sky high here. If it were not for help from friends, I would be in a heck of a mess there. Also, I am trying to navigate grocery bills that are out of control and only getting worse (again, getting help from friends, for which I am truly thankful). And… I am being made to renew my Medicaid, Food Stamps, and my Social Security Disability (which includes Medicare) all at once. The irony of the timing is not lost on me with the recent change in our political situation here. It’s certainly no secret that those folks currently in power don’t think I should exist, let alone receive any government support, despite having worked and paid into the very system that is in place to help people like me since I was FOURTEEN YEARS OLD. More storms. Capsizing.

But I digress…

I have a house that needs some attention, but I am physically and financially unable to take care of these things without a little help. I do try. I have been trying. I started to put a coat of paint on the walls (that have never been painted in nearly 20 years) in the living room because someone donated some paint. So now my downstairs is a mess… but I have two walls painted. Sort of. I can’t reach the top bits from my wheelchair, but I am doing all that I can. Then my pressures go up, and I end up back in the bed and sidelined for days, sometimes weeks, with migraines and dizziness. I have also been slowly chipping away at cleaning out the garage and purging stuff. Little by little, bit by bit. I can only gain so much traction on my own, however. I need another human or two to help me… and… people have lives, so that is hard to come by. So I end up overdoing things in an attempt to just get it done, and I lean over far too many times (not supposed to be doing that) which makes my pressures go up, which causes the migraines and dizziness again, and relegates me back to the bed. So my frustration mounts. More storms. Capsizing.

I have also recently discovered that I have termites as well as a mouse infestation in my crawlspace. I had someone come out and investigate. The company was supposed to give me a quote. It’s been a couple of weeks. I keep asking. Still no answer. It doesn’t matter because I was given a ballpark guess of around $1500, and that just can’t happen. I am drowning financially as it is. So I will be living in a termite and mouse-infested house for the foreseeable future. Maybe they will not destroy my electrical wiring overnight… maybe they will take their time with it. I hope so. I am quite dependent upon electricity. More storms. Capsizing.

I try to think of things I can do to distract myself from my destructive inner dialogue. My thoughts can often be rather detrimental to my well-being… I am in this house, day in, day out, with no way to leave and go enjoy any sort of recreational things at all. The only time I leave this house is for medical stuff. The only “escape” I have is to go outside. Only on nice days (because I can’t get my power chair wet). When I am outside, I am limited to my driveway and the walkway right in front of the house because my yard is not wheelchair accessible. I haven’t been in my backyard in years. I have a pretty space here with lots of trees, nature, wildlife, etc, but I can’t truly enjoy it because I can’t get to it. It is what it is. I’m trapped. Still… I can go outside. I couldn’t even do that for 4.5 years. At least I can get out on my driveway. It’s something. I just wish I didn’t still feel so constrained and helpless to do anything to change the situation. More storms. Capsizing.

So I thought maybe setting up a little workshop and craft area in the garage would help. I do love to paint and to build small things – work on small woodworking projects, etc. but my garage cleaning/purging project is on hold until I can get more physical help to purge stuff and move things around. I also really need a workbench of some sort- an accessible one that can be on wheels so I can move it out of the way when not in use. If I had the lumber, I could probably make one – it doesn’t need to be huge – maybe a 4-footer. I have *some* woodworking skills – I am my Daddy’s daughter, after all. He taught me a lot. I have his tools plus a few of my own. But lumber is expensive. And I would still need help assembling the larger bits. They sell them already made, but they are a couple hundred dollars. Not exactly something I can handle. I have three plastic folding tables out in the garage – the large one is full of boxes of Christmas decor (it’s where that stuff lives – to keep them off the floor). The other two are holding tools and plastic boxes of stuff I am sorting through. Both are small and of the rather lightweight/flimsy/folding variety. Not exactly ideal for woodworking projects anyway. Ah, well… maybe someday I could make a crafting/makers area out there to help take my mind off of things – and give me a nice distraction, but for now, the barriers to that just stress me out more. So… you guessed it… More storms. Capsizing.

And… I would LOVE to not get political because, honestly, my mental and physical health is too fragile to deal with it all right now. But things are a real mess in my country and getting messier by the day. It’s not only worrisome for people like me who are disabled and chronically ill but also for other marginalised groups. Things are being done, changes being made that affect the people in my life whom I consider my chosen family (since I don’t have much family anymore… none that ever really check on me or come to see me, anyway… they all have lives… it happens). Some of the things that are happening and the rights that are being taken away from people are making me sick to my stomach. And again… I feel completely helpless (and as such, worthless) in the fight against it all. I am terrified of where things are going. Quite honestly, I would leave if I could, but I am stuck – both financially and physically. I also don’t know where I would go. Things are getting bad all over. So where does ANYONE go? What do we do? Those of us with an ounce of empathy and care for others (despite who they love, the colour of their skin, their nationality, what language they speak, etc…) are now being seen as the crazy ones… the ones who are “woke” and surely don’t know what’s best for them. This is by people who purport to be Christians, though they don’t even vaguely resemble any Christians I was taught about growing up. I honestly think Jesus would hang his head in shame over some of the things being done now. Above ALL ELSE, we should love our neighbours. This is not happening. Quite the opposite. And it is turning me inside out, emotionally and physically. It is making me sick. So… DEFINITELY more storms. And more capsizing.

This whining and complaining may sound silly to some people. After all, I have a roof over my head. I have food to eat. I have clothes to wear. I have clean water. But the sustainability of all of these things is in true jeopardy right now. The least little thing can throw it all into turmoil, and I feel as though I am dangling from the thinnest of threads most days. I genuinely do not know what I will do if I lose my Social Security Disability, my Medicare/Medicaid, etc. Those things are keeping me alive at the moment. And my health issues keep plaguing me despite my fighting as hard as I can to overcome them. I am getting more and more tired with every battle… but I SO want to live.

I don’t want to JUST live, but actually THRIVE and… dare I say… try and make a difference in this world for others. I want that so badly. The experience I have had the last several years has made me want to start a non-profit to help other sick and disabled people like myself… an organisation that would consist of volunteers who would sign up for “shifts” to go and visit the sick, disabled, and shut-ins, and help them with little things around the house… maybe even help with light repairs/maintenance… or just sit with them and have a chat over a cup of tea… or maybe even take them to a park to enjoy some different scenery. Possibly someone to pick up groceries or prescriptions for them – do you know how much I have shelled out in delivery fees and tips over the past several years because it is my ONLY way of getting food and household supplies? Having a community support “buddy” (or multiple “buddies”) could save people a lot of money! I don’t know the first thing about how to start something like this or if it is even feasible. I know that I would want people to be background checked as they would be going into the homes of some of our most vulnerable people, and that isn’t to be taken lightly. But honestly, other than that, I wouldn’t think it would take a lot of money to start something like that up, as it would be mostly volunteer-based. (If anyone has any ideas, please reach out to me.)

Anyway… so amid all the storms, I am still fighting… still daydreaming… but doing so whilst also flailing limply in the deep, dark, murky waters. I want someone to throw me a very large life raft – one that cannot be capsized. Does that even exist? Please, someone, for the love of all that is good, tell me that it does. I need to believe in something.