Another slip off the wagon and I’m trying not to make it a habit. Yet, my attention has been everywhere else as of late and it becomes difficult to pull away. In part, a lot of good thing are happening and I’m finally starting to see some progress. Yet it has come with its own pitfalls and I can’t rest yet. Despite getting things sorted with Voc Rehab and getting comfortable with my new counselor, I still have to keep on them because they drop the ball at every turn. No matter how many times I’m told that they are here to help me, I feel like I’m the one helping myself. It’s rewarding in a way to know that I’ve accomplished what I have but the weight is crushing me. Unfulfilled promises, unnecessary pressure, last minute plans that are in constant flux… then they wonder why I won’t trust them. I’m a stubborn asshole that never wanted help when I was younger and now that I’ve choked down my pride, I feel alone. I have so much to be angry about while I try and find some joy in the few victories I have achieved.
The good news is that after nearly two years of fighting and five long years as a semi-unwilling hermit, I finally have a powered wheelchair that is mine. It has everything I’ve been saying it would have, Bluetooth, infrared, seat lift and tilt. This machine is an enormous beast compared to what I’m used to. I’ve decided to name it Metal Gear Kei and I’ve already had some time to test it out and get some real use out of it. It has gotten me to my current school of choice and back, managed the bus just fine, and I have some hopes to bring it to something recreational in time. Just having it has provided some kind of release and made my day to day much more bearable and with being enrolled in school for the 2016 Fall semester shows that I’m going somewhere. I tell myself that I should be happy.
At the time of writing this, things are not as well as they should be nor are they any amount easier. One would assume that as you accomplish the little goals, the grand scheme seems far less daunting. I’ve mentioned before that this business is never simple and there is always a new war at the end of a battle. Despite having the wheelchair in hand, which should mark the end of that adventure and label it a success, I find that not all the paperwork was done with my doctor. In fact, even though I was told that it shouldn’t matter who I have sign the paperwork be it nurse practitioner or doctor, they now need everything from a doctor I’ve only seen once and can’t manage to be clear or direct with what they need. I’m left in the dark on what they require to finish this. Admittedly, I’m scared. Five years without my independence was rough and all I can think is if this is how they take it away again. If they don’t take it away, do I get stuck with the bill? So many ways to go wrong and I don’t know the details to even begin to wrap my brain around it. So I am left with the only thing I can grasp and that’s fear.
If that wasn’t enough, I have a wheelchair evaluation this Monday to look into adaptive equipment and modifications to get me reading for the swift approaching semester. This would be more manageable if I was notified of this prior to Thursday or required to bring my checkbook to pay $305 that I was supposed to get in the mail from Voc Rehab that still hasn’t shown up nor would I be able to cash said check if it arrives Monday morning. It would be more manageable if they could make a plan and stick to it instead of making more tweeks to a last minute appointment on Friday and still not get me the address I have to sit on a bus for an hour just to get to. I can see where much of this is even out of their hands but I’m the one who has to jump through the hoops and suffer. I wouldn’t mind as much if they could manage to communicate to their own departments instead of praying to whatever deity of their choice that someone could be bothered to keep me in the loop. It would be more manageable if they could fucking help me instead of hanging me out to dry. Instead, I’m alone and fending for myself in a spot that has me feeling out of my depth.
I have so much to be angry about. I’m angry because of the weight they have dumped on my shoulders, angry from the failure to do as they promised. Worst of all, I’m angry from the fear that has made my heart sink far below my gut. Even I said this wasn’t going to be easy but now I’m in the thick of it and I’ll be damned if I repeat the mistakes of my younger self by jumping ship. They will tell you they are here to help or that they have your best interests at heart. They will tell you they went to school for this and it’s true, they have the piece of paper to show for it. Yet don’t you let them trick you. They excel at getting you all twisted up and finding ways to deny the help they promise. The only thing you can do sometimes is not let them win. I’m not giving up but I’m certainly ready to make them regret the game they play.