I’ve been writing in recent weeks on how much our lives have changed as a result of Mary Elizabeth’s stroke, and how challenging it can be at times to embrace a future that we weren’t expecting, without pining too much for the past.

I went to a support group a few months ago, composed mainly of women in their 60s whose husbands had suffered strokes in the last 3 years.  I was clearly not in their demographic, but we all had something in common – a spouse who had been profoundly disabled as a result of a stroke.  I asked the group if any of them ever felt like they were in mourning for their pre-stroke husbands, or if they felt as if their husbands were different people.

Immediately, I sensed I had asked the wrong question and hackles went up around the room.  Each lady in turn responded fiercely that their husbands were the same people down in there somewhere, and they had never left.  There was an awkward pause and then one of the more quiet women started to speak slowly, her voice quavering.  “My husband died the day he had that stroke.  The man I am married to today is not the man I married 25 years ago.”  With that she let out a stifled sob and began to weep quietly.

It’s a complex issue and one that’s hard to talk about without feeling uncomfortable, guilty or embarrassed.  By expressing feelings of grief or loss for somebody who’s still alive, we’re tacitly acknowledging that there’s something about our loved ones that’s gone, and that we’re not expecting it to come back.  And that contradicts the oft-expressed hope that recovery will be swift and complete.

I’ve said before that I can’t see a video or picture of Mary Elizabeth – or even her handwriting – from before the stroke, without overwhelming feelings of loss and  sadness.  But is that giving short shrift, or dishonoring the Mary Elizabeth that sits next to me and holds my hand in the movies, and sleeps next to me every night?  The Mary Elizabeth who survived 137 days in the hospital, working through endless hours of physical and speech therapy to get to where she is today?  She was and is a remarkable woman.  But a different woman than she was before December 5, 2009.

I’m also aware of myself, and my role as a caregiver to Mary Elizabeth and my children, and how important it is to take good care of myself.  Because I read a sobering statistic the other day about divorce rates in marriages where one spouse is a caregiver for the other.  Do these divorcing couples fall out of love?  Is it because of exhaustion or burnout?  Or is it because one day somebody wakes up and realizes that they’re married to a stranger.

I can say with certainty that my love for Mary Elizabeth is undiminished.  But it has changed.  Like any human emotion, love is multi-faceted and multi-dimensional and ever-changing.

As she lay unresponsive and inert in a London hospital bed, my love for her was primal and fiercely protective, overshadowed with the fear that she might not wake up.

As she began her recovery and made rapid progress, my love for her was brave, and filled with exuberance and hope for a full recovery.

As her advances slowed down and we began to adjust our expectations, my love for her  was enveloped with concern and again protective, and yes, tinged with doubt.

And now, as we continue to adjust, my love for her is becoming supported by understanding, acceptance and realism.

So yes, on one level we’re going through wrenching, cataclysmic change, but underneath it runs a quiet, no less persistent force of evolution and transformation.