[I'm smiling now that the roaster is up and running, but 24 hours before this picture was taken, I was in major distress.]
Sometimes it’s paralyzing.
For example, I’ve been trying to get my Huky 500T coffee roaster up and running again for six months. I’ve had it for a few years but we’ve moved since then and it had to be disassembled. I needed to reassemble it but first, I had to order new parts. Unfortunately it’s not as though Step One is simply “order new parts” and then I can move on to Step Two. Step One is to remember to order parts. Step Two is to be near a device and keep focused long enough to open my email and compose a new one, because the parts I need can only be requested online from a very specific source. Step Three is to spend an unnecessary amount of time agonizing over what the email should say, and that’s assuming I already know everything I need to know about which parts to order. If I don’t, it’s even more agonizing over which parts are the most ideal and optimal for what I need, because if I end up with the wrong tools or parts and I need to order more, it could be weeks again before I am feeling enough clarity and have enough bandwidth to retry that task. Tasks requiring multiple trips to a hardware store or similar may as well be its own torture chamber of sensory nightmares on a bad day and are enough to knock me out of commission. Prepping for it, doing it, and decompressing from it afterwards can take all day for what others would consider a simple task.
When I finally have all the parts and tools I need for the job, it’s hard for me to focus on and follow written directions, but unfortunately that’s the only kind of instruction that is currently available for the machine I have. If I have a question, or something in the written instructions is even slightly ambiguous, I will fixate on that and descend into what my husband refers to as Analysis Paralysis. It’s hard to ask for help on the niche forums and Facebook groups because everyone just refers me to the instruction manual, even when I tell them over and over again that I’m autistic and am virtually incapable of gleaning the information I need from written instructions. Diagrams don’t help, either. More often than not, they make things even more confusing which flies in the face of what they were designed to do: help people understand. What I really need are instructional videos with clear labeling, clear direction, and closed captioning where they map out every single morsel of detail, but nine times out of ten, they don’t exist. This makes me terrified to take anything apart because I’m convinced deep down that I’ll never be able to put it back together, or even find someone who understands what I’m going through enough to actually help me the way I need to be helped without judgement or tone-deaf suggestions.
Help is another thing altogether. I hate asking for it. I despise being associated with burdens, but this world is not set up in such a way that I and people like me can live completely independently. The resources are lacking and we end up needing someone else to help us, someone whose brain is wired for this particular brand of problem-solving. If I am lucky enough to have someone around who is willing and able to help me, it’s profoundly difficult to externalize what the problem is and what I need in order to fix it. I know in my head what I need but when I try to express it, I have no words. Inside of me, the concept is crystal clear, but I can’t force it out in anything that could be called a tangible language. This is frustrating not only for me, but for anyone who tries to help me as well. It can make it seem like what I want is someone to “just do it all for me” but nothing could be further from the truth.
On top of all that, there’s a certain amount of guilt and shame that comes from feeling this helpless. I’m very lucky that my husband is handy with machines and can easily understand assemblage. I’m lucky that he cares enough about me to take time out of his busy day to help me with the things I need to pursue my ambitions, but I haven’t always been so lucky, and that goes for other people in my position as well. I’m supposed to be this independent entrepreneur, an authority on her niche craft, but there’s this big ridiculous wall in front of me preventing me from putting together the equipment necessary to make it happen?! Once it’s set up, I’m an unstoppable juggernaut, but the challenges of taking something apart and putting it back together is akin to attempting to solve a Hellraiser puzzle while underwater in the dark, while someone tries to yell instructions at you from the surface.