We live in a culture that can be extraordinarily giving and generous to those in need. I can attest to that firsthand as most of the largest and meaningful changes to my life I have overcome with help of the community. I don't like to ask for money, I would love to work for it, unfortunately, it's a little more complicated than just wanting to work especially if you are really disabled. The rules are very convoluted, rarely it's as simple as if blank then you need to proceed blank way. Too many overlapping layers of beaurocracy. I don't know why it's like this. It doesn't make any sense, but putting that aside, I can get there. The government, while it has programs set up to help, they don't actually work. Really, I've chased them down to the ends of the Earth, and the only thing that happened was I ended up with no home care for six weeks. Really, and the people in the various organizations have become so desensitized to the difficulties of bureaucracy and disability that they avoid it. While, the physical disability is enough to prevent one from working I havecreated my own system that works with my disability, it helps with a lot of the out of pocket costs of disability, but it's nowhere near the level it would need to be at to cover everything.
despite the drawbacks of these challenging issues, the community around me have always rallied and provided what I needed without hours, and hours on the phone, or hurtling my fruitless efforts at getting whatever I may need. Some examples being an upgraded electric chair that stands up, which helps improve my health , a bathroom remodel which just made it possible for me to be able to be rolled into the shower and a mini split heater. This heater has proved to be a major pain alleviator. Thank you for all of this.
So with that in mind, I'm reaching out to you today to help me out with a few things I've outlined below. It's been a long winter here.
As a disabled person, finding and maintaining proper care can be an ongoing challenge along with supplies Health care neglects
All of this Coupled with the difficulty of establishing meaningful goals and accomplishing them, it can be hard to find hope in the midst of such struggles. But hope is vital. Without it, life can feel meaningless. That's why I am reaching out to ask for your support.
For the past four yearsI have been living with a spinal cord injury, and the challenges have not lessened. I am in and out of the hospital often. This winter was particularly difficult as I had a recurring Mersa infection. It ledme to the hospital at least half a dozen times, the first time I had a 106 fever, and was very close to becoming septic. I ended up having surgery to remove a cellulitis on my arm, and after that I was good for a while butit started up again and wouldn't let up. It was every two weeks I'd be in the hospital for three days. I had a really big hole in my arm at one point. It was scary because it happened in three days. It started out as a small pimple and by day three it was a massive hole which grew every time I woke up it's also strange, because they almost always seemed to start on a Thursday or Friday so by the time it was obvious I needed to go to the hospital. The hospital staffing would be terrible
It's hard to tell whether I'mexperiencing nerve pain or sick as the nerve pain often resembles burning or freezing. I am lucky to have two good caretakers who genuinely care as sometimes you'recaretaker does not suffice in fulfilling yourneeds. I am grateful to have them, l I have to pay out of pocket for Sundays due to a silly rule.
That and driving, I have a van , but I don't have a special license to drive it or the modifications – they are very expensive. Especially because I have no core muscles. I just flop over. So it would require installing a joystick to steer which is much more expensive than just a paraplegic who needs a much less expensive modification . Not being able to drive on the East End really takes a toll on your relationships with friends further exacerbating loneliness after that long Covid lockdown. I feel like I was in lockdown before lockdown even happened.
The van needs more repairs. the alternator and tires need to be replaced. The ramp is broken again along with the door, the ABS system is alerting me of its malfunction. And the navigation system, which has never worked still doesn't work z. The community really rallied and got me the van. It has almost no miles on it, but it needs new engine mounts, which is very strange. I almost feel like the odometer was Set back on the van. These and having a rainy day fund in case one of the caretakers decides to leave are the two big reasons for the plea for help.Not knowing who is going to get you dressed and up in the morning is one of the most stressful feelings I've ever experienced. but it takes like six weeks to get the person approved and in those six weeks I won't have anyone to help me and by helpI mean with everything from showering to dressing to you, name it. I have made quite a bit of progress despite my physical limitations. And, I really want to work again - I do but just during the summer. I have my photography business and I'm starting a candle shop, an online job. Ultimately, I'd like these two to turn into a full-time job where I have a paycheck every week but as of now it's really just refined to the summerfine art festivals. Thank God for them, though as they serve, not only as financial support, but also as a means of socializing. I'm also having a fun raiser because my four year anniversary of my injury is coming up and not to sound too glib but it's a very depressing day so refilling my rainy day fund would be a great gift
Events keep hope alive, hope for a better day m, hope for better future, hope in keeping your dreams afloat,. In a dire situation, Hope is the foundation on which your survival stands. I hope that one day I will be able to travel again, it's something that I loved doing, it will take much more planning, and, be more expensive but it's possible if I find the right people to help me. And obviously the financial means. That and the extra income will help further develop photography business into cinematography, abstract art, and other startups like my candle shop . There is no saying that it will succeed, but as they say, nothing ventured, nothing gained.