Apologies for such a long gap between posts.

Here’s what’s been up with Mary Elizabeth.  She recently started a program at CW Post’s Speech and Communication department which consists of a variety of group and one-on-one sessions – all geared towards increasing the fluidity of her speech and providing a much-needed opportunity for socialization and interaction.

The only drawback is that they’re on an academic calendar so just as soon as she started in April, the school went on vacation for the month of May.  At any rate, the first two weeks were great, and we anticipate more progress in June.  In the meantime, Mary Elizabeth still participates in some group sessions at Transitions so she continues to be active.

There are a few more programs I’m looking into and hope to have some physical therapy lined up, as well as a new group which provides social and therapeutic activities for stroke patients who have moved beyond the scope of places like Transitions.

We’re also getting used to a new addition to our family – Charlie the dog – who joined us a few weeks ago.  He came to us via the North Shore Animal League and is a year-old hound mix.  He’s very cute and gets plenty of attention.

Time to shift gears…

A frequent topic of conversation with kids – and mine are no different – is what kind of superpower would you want to have?  Mega-strength, X-Ray Vision or Gravity-Defying Leaps are some of the ones which come up.  Ironically, Mary Elizabeth and I have developed a superpower which we don’t particularly want, but seem to have nonetheless.

Invisibility.

It’s an issue which I know others in similar situations have faced.  We’re in a strange kind of limbo where Mary Elizabeth is no longer acutely ill, but is no longer making dramatic leaps and bounds in her recovery.

While Mary Elizabeth’s intellect is undimmed, her capacity for conversation has been greatly diminished and casual chats don’t last very much longer than an exchange of pleasantries.  Physically, she’s on her feet now but not for very long periods and she continues to be at a very high risk for falls. She still needs round-the-clock care, and will for the foreseeable future.

Slowly but surely we’re noticing people drift away.  We’ve also encountered the phenomenon of people we know walking past us without stopping or looking in our direction.  We’ve become invisible.

It’s ironic because I’d say that with each passing day, our lives get more and more difficult – in an existential kind of way – and it’s now that we could use the active support of friends.  This is going to sound callous, but I think we’re just not that interesting any more, and as much as I am coping with finding ways to sustain our current lifestyle, I think our friends are also experiencing the challenges of sustainability in a similar way.

So you’re probably thinking round about now that I’m being ungrateful and possibly even offensive, criticizing our friends and family for being neglectful and not interested.  And of course that’s the last thing I want to do.

But I’ve had the experience a few times now of people – sometimes whom I don’t know very well – coming up to me and quietly and with great emotion telling me that they know exactly what we’re going through because they’ve been there.  They invariably add that unless you’ve been through a similar experience, there’s absolutely no way to know what it’s like and how hard it is.  They tend to continue with tales of friendships lost, but sometimes new friendships forged in unlikely or unexpected places.  I find these whispered conversations tremendously moving and somewhat reassuring.

I think I could easily take some responsibility for our insularity.  While I should be actively soliciting people’s help or arranging visits – or just being more social, I tend instead to be focused more inwardly, all the while wishing that people could understand what we’re going through and be more solicitous and empathic.  But of course how could they be if I don’t let them in, or ask for help?  Our goal should be to spend some of the energy we spend feeling sorry for ourselves, and use it to give people the opportunity to help us – as I know they want to do.

So now I’m fantasizing about a new superpower.

Transcendence.

The ability to go beyond where we are now in a transformational and positive way – coupled with the capacity to accept and understand other people’s perspective and need for some distance.

I still have a tenacious faith that Mary Elizabeth’s recovery will continue – and that however far she gets, that we will find peace and contentment with who and where we are.  We’re definitely not there yet – and yes I think we’ll need some help to get there.

And now that I’m thinking about superpowers, I actually wouldn’t mind being able to fly.  It would sure beat the Long Island Railroad.

Happy Mother’s Day to all those mothers and those who mother.