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A new beginning.

בס׳׳ד

The bill arrived and was automatically paid.  This tells me that I have had this blog for more than a year; clearly it is time for my second post.  Also, it is time for me to settle down and just write.  So I hope what comes out makes sense, but if not, so be it.

Recently I’ve been thinking about anniversaries.  Five years ago I was in rehab, fighting with the staff and getting ready to enter my first nursing home.  Now I am in my sixth nursing home, I’m still fighting with the staff, I’ve been here for two-and-a-half-years and have no plans to leave any time soon.

A psychologist told me that what I thought were hysterics technically are called ‘outrage bursts.’  I’ve had quite a few outrage bursts since I’ve been living in institutions.  I had one today.  There’s a lot to be outraged about.

(About the one today – boy, am I in trouble.  I called the head nurse bad names as I was leaving, which she heard.  Oops.  Tomorrow will be awkward.  I’ve already been spoken to this evening by two aides who were present at the scene.  They’re petty mad at me, which is only fair, since I was furious at them.)

One difference between rehab and long-term care is that people in rehab tend to be more polite to each other.  You are only together for a few weeks or months, not long enough to abandon courtesy.  In a nursing home it’s like family (or maybe jail):  you are always together, and for years.

It’s time to eat dinner, so I’m going to post this now.

4 years ago today: my first nursing home.

Picture me 4 years ago: I’m 53, just finishing my second stay in rehab.  I’m in Israel.  I have multiple sclerosis (MS), complicated with chronic bladder infections (UTI’s).  My first rehab had been great:  really tough, but I left walking better than I had in years.  I could even climb stairs.  Then I fell and broke a bone in my foot.  After it healed I thought, ‘Hey, go back to rehab, learn to walk again, no problem.’  Right.

My ticket to rehab is another UTI.  I arrive sick, weak, deconditioned.  The staff think there is no hope.  They think I am in denial.  “Diana, you don’t realize you have a progressive disease.” They sincerely believe the best thing for me is to go into a nursing home.  To stay.  Forever.

My great-grandfather spent the last 20 years of his life in a nursing home (he lived to be 103).  I can do the math:  103 – 53 = 50 years.  Not if I can help it.

They have 3 weeks to go through the motions until they can be rid of me.  They don’t say this, but I know.  No one likes to work with hopeless cases.

I don’t think I am in denial. I say “maybe.”  Maybe the MS is worse and therapy won’t help.  But maybe it will.  The only way to find out is to try.

People don’t like to hear ‘maybe.’   We argue every day.  One of the things we argue about is my walker.   They insist that I use their therapeutic walker.  I think theirs is harder to use.  My walker just sits in my room.

After two weeks, I’ve had it.  I grab my walker on the way to therapy.  Pushing the walker in front of my wheelchair, I roll down the hall.  Somehow I maneuver it and me on and off the elevator, then back down the hall to physical therapy (PT).  No one says a word.

My walker sits there while I do PT.  It sits there while I do occupational therapy (OT).  It sits there while I do more PT.  Finally, Elan asks if I want to try it.  I nod my head, “Yes, please.”

I stand up and walk down the hall, leaving my wheelchair behind.  It marks my progress:  I could walk!

I can’t walk today.  On March 4, 2013, I entered my first nursing home in Ranana, Israel, not to stay for good, but to see how much better I could get.   Flying back to Massachusetts 4 months later, I got sick again.  Fortunately, the ER doctor (in Worcester MA) had studied in Israel and could read my discharge papers.  That’s just one of the miracles that has happened.

I’ve been in 6 nursing homes, 3 rehabs, and 4 hospitals, and I’m still not done.   My friends have been telling me I should blog about my experiences and what I have learned.   I am posting this today, to celebrate my 4th anniversary.  We’ll see how it goes from here.  Thanks for reading