Seeking, Finding, and Embracing Gratitude within the Chaotic Mess…

I wish I could lead a medically drama-free life. I wish I were not ill. I wish I were not in pain all the time. I wish my fragile mental health would allow me to process things like pain, disability, adversity, and inaccessibility without crippling panic attacks and deep, dark, depression. I wish a lot of things along those lines, but I have to face up to the fact that it’s just not my reality at the moment. I do the best that I can with what I have.

Most of my days typically consist of not seeing or talking to anyone other than my pet birds. I live with constant pain, nausea, racing heartbeats, shortness of breath, panic attacks, and… just plain terror. My mental health has left me in a place where I have little to no interest in… anything. My depression has become so bad that I have had some suicidal thoughts lately – especially when I was dealing with intense pain and no pain relief was available for days on end. Feelings of abandonment, inadequateness, of being simply burdensome to everyone, and filled with deep regret for not being able to accomplish the things I’d set out to do back in 2013 when I went back to school with a focus on obtaining an AA, a BA, an MA, and a PhD and becoming a university lecturer in Shakespeare studies, (OR an academic specialist librarian). I got my AA. I got my BA (Hons) in London. Then I promptly came back home, got very ill and was physically confined to a bed or wheelchair. I was also the primary carer for my beloved and adored terminally ill, elderly father – slowly watching him fade in front of my eyes, mostly via video camera screens (intervening via technology when needed) as I could not access the lower part of my home due to it not being accessible to me. I cooked his meals upstairs and sent them down on a stair lift that was, at that time, not accessible to me. I managed his meds as well as my own. And I continued to helplessly watch him spiral downwards. I have a LOT of trauma from that period. It weighs on my mind every single day. I can’t escape it. I try, but it keeps haunting me.

Since Dad died in Oct 2022, I have been fortunate to have a few modifications put in place to help me get around my house a bit better. Some of them are a bit rickety, but for now, they work, and I am grateful. I can now get down the stairs on the aforementioned stair lift that makes awful noises and… cuts out a lot… but it eventually (usually) gets me where I need to go. I have a wooden ramp out in my garage that the local high schoolers built for me so that I can come and go from the house to the driveway. I have newly and very generously donated and installed laminate flooring all through my house that is SO much more wheelchair accessible for me, and far less dangerous than the nearly 20-year-old carpet that had been in there before. It’s also healthier with my asthma, as I am no longer breathing in the fibers from that carpet that had disintegrated so badly. I am beyond grateful for the changes that have taken place.

I have someone who has offered to come and put a little concrete pad in my yard so I can have a level place to sit outside in my wheelchair. They’ve been really busy, but I think they are going to come and look at it soon and maybe start working on it. Right now, the only access to the outside of the house for me is… my driveway. The driveway is inclined, so imagine sitting at a downward angle in a wheelchair… it isn’t ideal… but I am grateful to be able to get outdoors! Being outside in nature helps my mental health a LOT, as it makes me feel more grounded. Being stuck indoors is so hard for me. Due to all of the trauma of being trapped upstairs in my bedroom for 4.5 years, I now deal with feelings of claustrophobia and sort of… I guess… PTSD… when I have to be confined inside for very long. I want to be outside. Always.

I am lucky enough to have 1.25 acres of land where my house is. There are quite a few nice trees – even shady ones… but I can’t get to any of them, and… it looks as though I may never get back out there – close to them again.I can’t take my wheelchair out into the yard/grass on uneven terrain, etc… I would either need a long, winding concrete path poured or another mobility vehicle. Sure, there are all-terrain mobility scooters out there that could do the job, but… those cost money – which I just don’t have. The cheapest I have found is over $2000. It’s on my Amazon Wishlist (the Dream list… lol… ) but for now… I sit in the driveway, in the hot sun, and look longingly out to those trees in the shade… It’s one of life’s “It is what it is” kind of things. There are a lot of those. I think all of us encounter them. But despite my longing to be able to access all of my yard, be able to get into my back yard, etc… at least I *am* able to get out into my driveway, and I could not even do that a year and a half ago. That’s progress.

I recently wrote about my setback with my health – due in large part to some herniated discs that threw me right back into that bed that I was trapped in for so long. I did NOT handle it well. I am still dealing with the backlash of all of that. It affected my mental health FAR more than I was prepared for. Now, I am trying to take things day by day, hour by hour, minute by minute… but I *AM* trying. And I am incredibly grateful for the help from the kind people at my chiropractor’s office. They’ve had me in disc decompression therapy three times a week, adjusted me, and continue to monitor me, treat me with dignity and compassion, and support and encourage me. I am super blessed there. My chiropractor Josh has gone out of his way both professionally and personally, as a friend, to help me. I will always be so thankful for him.

I have friends who have helped me with groceries… Amazon wishlist items… with financial donations here and there to help me keep the lights on and bills paid. Without this kind of help, I would not have made it since Dad died. I just wouldn’t have. I live solely on a small disability stipend, and I receive about $25 a week in Food Stamps from the state of Georgia. That’s it. By the time I pay my mortgage, electricity, phone, internet, water, garbage pickup, etc… and the few incidental expenses like doctor’s office co-pays, and other normal day-to-day living expenses, I am usually overdrawn a bit. I used to just barely break even, but the cost of living has risen like mad… and I am still drawing the same amount each month. It doesn’t take a Mathematical whiz to know that’s not sustainable long-term.

So many folks have said, “Can’t you sell your place and find somewhere cheaper?” The answer is no. I have thoroughly researched it and taken advice from professionals. I could sell this place, but wouldn’t get enough out of it to be able to buy something else – regardless of size or location. Others have said, “Just move to assisted living…” Well, aside from the fact that I am only 59 and have pet birds… assisted living places are EXPENSIVE and not covered by insurance. The only thing I could qualify for, maybe, would be a nursing home – the type that is out there for folks without any means (and yes, I guess I would fall into that category except that I have a house, so if I sold it, I wouldn’t qualify)… those are the ones where you basically go there to die. The places that are quite unpleasant. The kind of place that I made a solemn vow to my late father to NEVER allow him to end up in (and I made good on my word. He passed away here at home in his bed with me and my friend Ford holding his hands…) So… for now… I am staying put in my little house.

Yes, my house has some… issues. The back is covered in black mould (which I am hoping will be taken care of soon, fingers crossed), but aside from that, the vinyl siding is also falling off. We had someone scam us after a hail storm several years ago, right when I got back from my studies in the UK, and they took our insurance money, barely slapped up some new siding, and did it incorrectly (as it turns out they were not actually siding installers), and never even finished the job. In the process, they buggered up the garage door frame, and it is now starting to fall down. So… there is a lot of work there that I totally can’t afford to have done. I also have a heating and air system that doesn’t function properly. The whole thing needs to be replaced, as the air conditioning part of it runs on freon, which they don’t even have anymore since it is so bad for the environment. One of my units doesn’t work because it has run out of freon. The other unit is on borrowed time. The central heat hasn’t worked in over a decade – I have to use electric space heaters in winter. It works, but those aren’t the safest things in the world. Thankfully in Georgia, our winters tend to be short and not too brutal. My back fence is also falling down because I have a bunch of wild weeds and trees on the other side of it that are pushing it down. Dad and I used to keep that little 4 or 5-foot section cleared back there, but when our health went… so did our ability to get back there and clear it. I have had tree limbs fall on parts of the fence, too. Lots of it needs replacing, I think… or maybe not… maybe just some planks here and there… I am not able to get back there to investigate, you see, since I can’t access my yard… so all I can see from a distance is a fence that is in a pretty bad way.

Yet, despite all of these things – I have a house. I have a roof over my head. I have food to eat. I have my little pet birds to talk to. I have people who check on me electronically every day – even if they may live far away. I have a lot more than many folks out there who are sick and disabled. For all of that, I am beyond humbled and thankful.

I try so hard to look for the good. To find the positives, to go out of my way to show gratitude and humility as often as I can…. and am constantly working on trying to get better and better with that… so when I DO have these just quite frankly AWFUL times when I feel so down… so depressed… so alone… and so worthless, it makes me feel incredibly guilty – guilty beyond measure. Like I should not be ALLOWED to have these feelings at all because of the good things that I DO have going for me. I am so conflicted – but still I try my best.

I am and will continue to be a work in progress. And I will work on myself for as long as I can. That is a promise – not only to myself but to all the people who have helped me and continue to do so.

I still have to figure out some way to get these burdens out of my head and heart. I am not sure I will ever be able to do anything about the financial ones since I am too ill to have a job and bring in an income… It seems like every month I am “begging” on social media for a little help just so I can get through the month’s bills… but I keep brainstorming. I keep hoping. I keep praying. And I keep saying “thank you” every chance I get… for the blessings that do come along, for the things that I DO have, and for the people who DO care.

Thank you.

And I am trying… with all of my might… to get better. To be better. But right now… I am struggling.