Sometimes voices from the blogosphere get stuck in my head or maybe they’re hallucinations from mowing the lawn at 100°F (37.8°C).
As a caregiver, I live in the world altered by Multiple Sclerosis but I must also live and work in the upwardly mobile world.
I stand with a foot on each side of a widening chasm, one moment I may be trying to share the excitement of someone’s upcoming able-bodied vacation plans, then only hours later trying to find anyone to share or even grasp my excitement over a successful one person transfer of Patti from wheelchair to bed.
Once we had two incomes and yes with two cats in the yard our house was a “very, very, very fine house”.
This entry from a blogger with MS has stuck in my mind for almost a month. I suspect it captures a universal truth.
“What I mean is that everything around here is breaking! …… plans were heaped on the trash pile once I stopped working, along with so many other things. … … that has to go on the ‘must do’ list. Each time something goes on that list, something from the ‘want to’ list suffers … … I so wanted to start on the ‘want to’ list, but that keeps fading more and more into the background. I think with MS and disability, that must happen a lot.”
"Disability is part of the human condition," says Margaret Chan, director-general of the World Health Organization. "Almost every one of us will be permanently or temporarily disabled at some point in life. We must do more to break the barriers which segregate people with disabilities, in many cases forcing them to the margins of society."
Caregivingly Yours, Patrick Leer
web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer
So true. I work in a hospital for children with developmental disabilities and I see the struggles parents go through every day to keep their children integrated in their lives & families as well as the rest if the world.
ReplyDeleteThanks for the mention, Patrick! BTW -- the stuff is still broken!
ReplyDeletePeace,
Muff
make sure you are hydrating well, Patrick, while cutting the yard in that heat!! We're stuck in June Gloom here in southern California, LOL; most Junes, sometimes May, especially along the coastal area, we get days of cloudy cool weather because of the marine layer; so pleasant weather here :)
ReplyDeleteYou did bring up a good point; going from two incomes to one income, especially when you didn't foresee it, could be hard to get used to. We were on track to get things paid off and get ahead a bit when hubby decided it would be a good idea to quit his job and move closer to his parents (still having trouble dealing with it all, can you tell???) so we are down to one income which was the lesser of the two incomes so I totally understand the must list versus the maybe if we can stretch if list, etc.
Made me think that they say it takes a village to raise a child, maybe it takes a village to walk alongside someone dealing with a disease like MS to help them along with repairs etc. The repairs the lady mentioned in her post were not overwhelmingly expensive if spread over a few dozen or more people, but individually it does of course add up. If coops or something could be set up with able bodied people willing to help out with things like this, I can see that people with disabilities might not get shoved into the margins of society. But how to put it together and make it all work, I don't know. But it sure sounds good on paper. I know within my means I would try to help up in such a worthy adventure and I know a lot of other people, especially when they stop to think of how they are blessed, might consider the same.
I can see you guys as yuppies, I really can........
stay hydrated and cool!
betty
I haven't thought of "yuppies" since I left Eugene, Oregon. Haha. That city was full of Yuppies and Hippies.
ReplyDeleteI kinda miss it. ;)
I know your life is "broken, altered" and changes forever now.....I hope you feel less broken now??
ReplyDelete