If you’ve ever wondered what living with a disability feels like, imagine this:
- Judgment is your constant companion. Family, friends, and even total strangers will suddenly feel entitled to express opinions about your condition, lack of trying, mental attitude, the latest trends in healing, and so on. You may be berated for using a handicap parking space (even though you have a sticker), especially if it’s on a day where you are trying to walk a bit. If your gait is unsteady, and slow, you may be mistaken for a drunk. Imagine living 24/7 with the stereotypical critical mother-in-law: that’s what it feels like.
- You are completely dependent on the help of others, so; be sure to pander to their needs and preferences if you want to go anywhere. They drive; you do not. If they stop offering to drive you are SOL! If you thought you were a people pleaser before, that was only a trial run – you are now in it for survival.
- Abandonment is no longer a fear; it is reality. Think of all the obligations and responsibilities you currently fulfill on a regular basis. Imagine how important you are to so many people. Should you get sick – long-term sick – you can count on being forgotten by most of them. Actually, you may be shocked by the number of people who drop out of your life, for reasons you’ll never understand. The good news is, you will be left with a handful of quality people who help heal the wounds.
- No one will ever really understand. I know this sounds like a throwback to adolescent angst, but it is true. (See point 1.) They may see your life as a continual vacation, but what they don’t appreciate is that even if you were at the beach: stairs, sand, and any uneven terrain are almost impossible to navigate when strength, coordination, or god forbid, mobility are lacking.
- You will become an alien being, devoid of normal earthly attributes. Okay, this may be exaggeration, but why else do people look away, or smile uncomfortably when they see you (children are not afraid to stare, I might mention)? And why else will it automatically be assumed that you do not have any personal desires or ambitions? It’s not hard to notice that tones becoming more condescending or ‘careful’ in your presence. Even loved ones, overwhelmed by the new demands forced on them, will struggle to maintain former relationships.
- Every three months you will have to justify yourself to the insurance company, regardless of your condition. This includes reports from your medical team, as well as ongoing surveillance. If the paranoia doesn’t get you, the depression of constantly having to face the hopelessness of your situation will.
- You cannot decide which is more confining – the wheelchair or the loss of independence.