No Soy Deportista

Act I Anticipatory Grief

A recently retired colleague of mine is spending her husband’s last days on earth caring for him, loving him as he makes what she calls his “transition.”  The decision was made to cease treatment for his brain cancer, and home hospice care has been initiated.  My heart breaks for her as she chronicles what she knows are his final days on her Caring Bridge page.  She wrote recently about crying–much and often–wrung out in her grief already.  Anticipatory grief. Mourning a finality not yet final.

I had not considered that term, anticipatory grief, since my undergrad days, when I felt lucky to have scored a seat in the popular Psychology of Death and Dying class.

The death of a husband and my son’s muscular dystrophy diagnosis are not comparable life events.  Even a yahoo like me is sensitive to that.  But ever since she reintroduced anticipatory grief into my lexicon, it’s all I can think about.  I spent so many days, weeks, OK, three-plus years now, preparing for my son’s eventual decline, envisioning worst case scenarios.  He remains far from worst case status, but since January 21, 2015, there has not passed even a single day that I’ve not mourned for what he will miss, what he has missed already.  When he practices his Spanish conversation homework identifying personal traits and interests, repeating “no soy deportista” (I am not athletic) and “no me gusta correr” (I don’t like to run), my heart is hollow all the while it races.

The earliest days of this blog were me trying to keep from losing my shit, seeing a future with a decidedly un-sunshiny aura.  It was all quite nebulous then, somedaySomeday, he won’t be able to ride a bike.  Someday, he won’t be able to walk.  Someday, he’ll need assistance dressing and trimming his nails.  My poor friend Nicole had to deal with my work tears two weeks or so back, when I wondered aloud who would take care of my boy if something happened to me someday? Someday is already here.

Act II Coming Out

So he’s not athletic, and doesn’t like running.  He also doesn’t enjoy a four-hour drum rehearsal.  Can’t endure it really.  He’s part of his school’s percussion unit. Ramping up for December’s district competition, they rehearse after school 2-3 nights per week, and have occasional mini-camps, which are four hours in length. This is a child who fatigues while walking or carrying a backpack.  Four hours is a non-starter.

What’s the opposite of not looking forward to something? That.  And that is killing me, because until these marathon rehearsals, playing and looking ahead to the competition was something he very much enjoyed.

Me to my son (significantly edited because I don’t remember every word I said, I mean, I can barely remember to grab my lunch bag some days):  Do you think it’s maybe time to ask your band director for a break?  Can you ask for a short rest period every so often?  Most people think that crushing a practice builds endurance.  For you, intensity of activity only makes you more tired, not better or stronger.  Most people don’t think about it.  Even if he knows you have MD (which he does), he probably doesn’t make it his top priority.  But it’s YOUR top priority, and you, like it or not, are going to have to become an advocate for yourself, son.  You are going to have to get what you need to take care of you, but YOU have to ask.

My son to me (this one I remember verbatim):  I don’t want him to know.

Me: Do you want me to contact him?

Him: NO

Me: Can you maybe think about talking to him?  Just think about it?

Him:  Maybe.  (Clearly placating his mother, “maybe” is code for this conversation is done, get the hell out of my room)

What will it take, which someday will it be before he asks for help?  He’s shown tenacity and commitment to the things he loves–his bass and his drums–but at some point, he won’t get a pass, he’s going to be called to step up and perform on a par with everyone else. He will have to identify himself as a person with a disability. Someday.


Equal vs. Fair, illustrated. Imagine this, but with a large drum strapped on your shoulders. Then imagine you have a muscle disease that affects the muscles attaching at your shoulders. Thanks for the illustration, imagemart.

Act III The Happy Ending

There’s no happy ending, I’m just messing with ya.  I’m just sad. Just another day.  Earth continues to revolve around the sun, and Thursday will come as it always does, right?  Sometimes the right person comes along at precisely the moment you most need someone to make you laugh though.  You pass an hour trading text messages in between dishes and dinner preparations, and you snort once or twice.  You’re busy cracking wise, trying to be clever, because laughing is freaking amazing medicine.  You’re grateful for the diversion.  There have been 1,658 tomorrows since the diagnosis, and another tomorrow will surely come.  It’ll be OK.  Or it won’t, but it’ll get OK.  OK-er anyway.


5 thoughts on “No Soy Deportista

  1. I feel your pain, my friend. I don’t know what the research into MD is like, but I remember that when my sister-in-law was diagnosed with juvenile diabetes over 40 years ago, it was devastating for the family, because back then it was a death sentence. But with new and better treatments and more understanding of how to manage it, she just turned 50 and is incredibly healthy–not perfect, but far better than anyone thought so long ago. I don’t know much about MD and I hope this doesn’t sound like I’m being glib or dumb–sending you hugs:-)

    Liked by 1 person

  2. Anticipatory grief is a cruel phenomenon, isn’t it? It compels us to feel bereavement for something that hasn’t yet happened — an exercise that doesn’t even soften the blow when someday finally arrives. But it’s also a reminder that every extra tomorrow between now and someday is an opportunity to make the most of the time we have, whether that’s fighting a little harder (for better treatments and technologies, as Suzanne suggests above), or simply caring for those you love, like your colleague and her husband. As someone once told me, all we have is time — and how we choose to spend it. I like to let anticipatory grief remind me to spend it wisely.

    Beautiful post, Wendy.


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