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So which would you rather have- a progressive disability like Primary Progressive Multiple Sclerosis or a sudden disability like a spinal cord injury?
If you take a snapshot in time, depending on when you press the shutter release button, these two types of disability can appear to be very similar. For example, right now my situation resembles that of a person with an injury in the mid section of the spinal cord, a location where you lose most leg function but maintain a significant portion of your upper body function. If you took that picture two years ago I would have resembled a person with a slipped disk. If you take that picture a year from now, I'll probably resemble a person with a spinal cord injury much higher in his neck.
So here we go...
The advantages of having a progressive disease versus a sudden disability are, in no particular order:
- If you have a progressive disability for, say, 40 years, then for some number of years you may have enjoyed relatively high function. I did for a few years. Whereas if you have a sudden disability for the same 40 years, you didn’t have any low disability years on the front end.
- With a progressive disability you have plenty of time to mentally adjust to your situation. Typically at time of diagnosis disability is relatively mild.
- With a progressive disability you have plenty of time to take tangible steps to adjust. You have time to put ramps in your house. You have time to shop around for mobility aids. You have time to make career changes in order to maintain employment.
- Your world is not turned completely upside down in a period of seconds with a progressive disease. The trauma is not acute.
- Oftentimes, once you recover from the disabling event, your situation is somewhat stable. Although the disabling event was extremely unexpected and traumatic, you often get to a point where your level of disability is only slowly increasing or not increasing at all.
- Because of item 1, when you employ an assistive device it can typically be used for a very long period of time. With a progressive disability, you have to stay ahead of the curve. You don't want to be buying assistive devices today that you should've bought yesterday and that will become inadequate tomorrow.
- Once you recover from the trauma of the disabling event, both mentally and physically, the uncertainty in your life is much lower than the uncertainty in the life of a person with a progressive disability.
So, those of you who are still reading, and don’t find this thought exercise completely abhorrent, what do you think? Would you rather know it is coming, and have time to make adjustments, or would you rather rip the Band-Aid off suddenly, so to speak, and perhaps be more stable going forward?
Pick your poison.
Next week…Progressive Disability versus Cancer.
Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.