This question is very high on the agenda. Can I visit you or are you uncomfortable? In itself understandable, the question. But hey, I don't necessarily look the part, but I'm still the same dumbass I used to be. Nothing has changed in the fact that I like company and can get anyone into bed.
And let's face it. In my blog and the book I might be working on (or maybe not, who can say) you'll find photos of me taking a shit. How much lower do you think you can fall? The fact that these pictures are taken from my care instructions and only illustrate the toilet use of a quadriplegic ALS patient doesn't really make it any better.
The much more exciting question is how you deal with it. You probably don't know that yourself yet. But I can answer that even less than you can.
I'll spoil a little bit what you're getting into here. These are just a few things that come to mind spontaneously. I could extend the list of curiosities and disgusting things even further, if I would only try a little harder...
- To pee, the male nurse puts the urine bottle between my legs. I piss while lying in bed.
- If I have to take a shit while you are with me, it will be even funnier. Then the nurse shoves a disposable pad and liner under my bum, sticks a Dulcolax up my arse (because as a Tetra without trunk muscles I can't "push" and nothing works without a suppository for expectoration), lays me on my side and then we wait. A long time. Very long. It can take 1.5 to 2 hours until I'm done, cleaned and made fresh for you.
- If you visit me on laxative day or the day after, you will have to live with me wearing a nappy. The suppositories like to work twice.
- I form more or much more mucus in my throat, depending on the day, which has to be sucked out irregularly on a regular basis. Maybe that's not everyone's cup of tea. No kidding, many a horror film special effects artist could learn something from me.
- I like to make a mess when I drink.
- When I eat, which is also a liquid, I always make a... what's the next best thing to a mess? Mess?
- I'm not very talkative. You will have to make do with my voice computer.
- Especially if we haven't seen each other for a while, you'll be shocked by the first sight of a 40 kilo skin & bones Patrick. But hey, like I said, that's still me. In fact, that's me now. That's how it is.
- By the way, our worst case scenario would be if for some reason I suffer from acute respiratory distress while you are visiting me. Then you'd get the whole gamut from mask changes, ultrasound inhalation, coughing with Cough Assist (cough aid, cough machine) to deep suctioning. I have 30 centimetres of suction catheter stuck in my throat and it sucks out everything that doesn't pay rent.
- And if all of this is to no avail, then it's off by ambulance and emergency doctor once again with a short detour via the emergency room directly to the intensive care unit. Welcome to the next bronchoscopy.
I don't just write about all these things. I also put hundreds of photos of myself on top. If that's not actually embarrassing, then I don't know what is. In any case, it doesn't raise the question for me whether your presence might make me uncomfortable. That's the wrong question to ask. Rather, it should be whether you find it too unpleasant to experience me like this. And you have to find that out for yourself.
Or are you looking for a way to get out of it without making a decision? Then the question still has to be called something else. How about, for example, whether it makes me uncomfortable that it could make you uncomfortable? Clear answer: no. Come over, I'm looking forward to it. You can still run away. Unlike me. I don't run after you.
