When you have a permanent disability, your presence among those who knew you before you became disabled, changes dramatically. I think that mostly, it has something to do with your presence. A presence that reminds most people of their fragility of being human and most don't want to be reminded of that by having you around.
Disability is always with you and even on those few days when you feel good, the number of pills that you have to take and/or the injections by syringe that you administer, reminds you that all is not well. You one day, finally come to terms with your disability, for sanity's sake but you never feel whole again. The relationships that you had before your disability, become a thing of the past and the memories, sometimes as corrosive as any acid.
The one's who once expressed love for you, well, many become distant strangers and those few who you do see sometimes, reluctantly remind you that you can't do this or that you can't do that, so you keep your distance from them too. You find yourself enveloped in a cocoon of deceit, by so many people around you, who offer a superficial smile, while trying to hold back their disgust of your situation.
You reserve yourself to your time by yourself, hoping that when you feel good that day, that you can commit to something briefly with the hopes of finishing, just one small task, but the challenges of remembering what that task was, when you pause, leaves it unfinished and you clueless. So, nothing meaningful gets done and everything meaningful, is forgotten. The ones you once loved deeply, are just an allusion of all that love once represented.
So, you persevere hoping that you'll live long enough one day to take advantage of any medical discoveries or medical advances, that may be relevant to your condition. Meanwhile, the absentmindedness, pain and the suffering continues and so too does the reality of it all.