Exactly When Did I Sign Up for the Ultra-Marathon?

June 8, 2012 at 2:39 pm (Uncategorized)

Please excuse my lengthy absence. I’ve been contending with the assorted crappiness that sarcoidosis brings my way. Truth be told, I probably could have squeezed out a few words these days. I jotted down some profound and uplifting thoughts in between rounds of splitting headaches, faltering vision, vertigo, and fatigue that would have made very good blog essays.

But I’ve been having a bad case of the “why bothers” (which I try very hard not to refer to around my 8 year old as the “f#!k its”). You know, why bother to get into a good writing routine when some new health problem will just lurch me out of it? Or, why bother to get going after the monthly chemo treatments flatten me, when it will be time to get another one just as soon as I’m over this one? Or, why bother to schedule a lunch date with a friend (or promise to do something with my son, or make a plan with my husband) when everyone—including me—knows I’ll either get sick, feel punky, or have to cancel for some other medical reason? I could go on, but you’ve probably exceeded your recommended daily allowance of Rebecca’s self-pity.

What I’m struggling with is the chronic part of the chronic illness equation. Endurance has never been my forte. Long ago, before I gained nearly 100 pounds on prednisone, I was a national-class cyclist. It’s hard to believe now, but my body fat was nearly measured in single digits. Even so, I was on the brawny side for cycling. I was very good at sprinting. If I could make it to the end of a race, the odds were in my favor that I would win the final sprint. Getting to the end was the hard part for me—physically and mentally. I needed to distract myself from the seemingly infinite miles and dreadful climbs between the fast start of a race and the fast finish. Sometimes I could. But sometimes, on mile 43 of a 70-odd mile road race, midway up a hill that I could not see the top of, I quit. I didn’t pull off the side of the road and throw my bike down and announce, “I quit,” though I did want to do just this on more occasions than I’ll ever admit. I was much more subtle. Something in me simply stopped trying to hang onto the lead pack with ever fiber of my being. I kept going hard, but not my hardest. Which is probably why I didn’t make an Olympic team, and why I eventually retired from cycling. I occasionally wonder how I would have fared if shorter distance races had been an Olympic sport for women at the time. I was a sprinter trying to hack it in distance races.

The only spinning I’m doing these days involves the vertigo in my sarcoidosis-addled brain. Nevertheless, I find myself, yet again, trying to keep going in this endurance race, the one for my life. I was diagnosed with sarcoidosis over eight years ago. I’ve had brief interludes when the disease loosens its grip on me, but I’ve been contending pretty regularly with sarcoidosis for all that time. I’ve been getting some form of chemotherapy at least once a month for going on four years.

That’s a long climb for a sprinter’s spirit. I’ve hung in the race so far using some of the strategies I learned in bike races. Focus not on the 20 hills coming up or the 50 miles before the finish, but only on this hill I’m climbing or this mile I’m pedaling through. So, when I start to gasp in despair at how many years of sarcoidosis are ahead of me, I put on mental blinders and tell myself that I only need to make it through this day or this round of infusions. But the sheer length of my current challenge breaks through my mind games, and I find it more difficult to pretend I’m not in an ultra-marathon of disease and loss.

I find it ironic that nearly all of my present life goals require the endurance I’ve told myself I don’t have. Losing those 100 pounds, writing my book, parenting my son, continuing my marriage, and living with sarcoidosis—all mean taking the long-view and staying on hill long past when my legs are tired and I’m ready to quit.

What would it mean to drop out of this never-ending slog against sarcoidosis? I’m not talking about dropping out of the race entirely. But I could stop trying so hard—ease back on the pedals, let the peloton accelerate ahead of me, and the hill loom above me. I could let the lonely open road swallow me up.

But I can’t. I just can’t. I brought a child into this world, and it’s not his fault I got sick soon after he was born. I need him to know that no matter what happens, I fought—and I fought with everything I had. I need him to know I stayed on the hill, even when it hurt. I need him to know that I stayed in the race.

Are you a sprinter or a marathoner? How do you keep going? What are your words of wisdom for persevering—with hope and dignity?


  1. Barbara Barnes said,

    Any words I have after reading this will have “mercy” and “acceptance” and “grace” as anchors… love you.

    • Rebecca Stanfel said,

      Thanks, Barb. Those are some wise words and solid anchors. Thanks for passing them along.

      Sending love back,

  2. Paul said,

    Life in Chronic Town is an Ultra Marathon and to lose sight of the ultimate goal of wellness is to fall into the pit of despair. That being said there are days when you have to put in and do stuff but there are other days when it is better to ease off and just do enough, and others where you just have to hang tough.

    The hard part is not focusing on the bad days and letting them get you down – treasure and enjoy the good days, the downhill coast with the wind in your hair that inevitably follows the hard slog uphill.

    Hang in there -You’re doing good

    • Rebecca Stanfel said,

      Thanks, Paul,
      You sum it up so well. It is hard not to focus on the bad days. I’m also finding it hard to remember (or to believe) that a downhill stretch is coming. I am definitely in the slogging part of it now. So, thanks for the encouragement–and the reminder that I’m in it for the long haul. It helps to get advice and wisdom from other folks in Chronic Town.

      You hang in there too,

  3. livrancourt said,

    I pray that you keep hanging with the peloton and that the good days outnumber the bad,

    • Rebecca Stanfel said,

      Thank you Liv. The community we’ve built through our WANA class is wonderful, and just another example of the unexpected joy that comes with staying engaged with life. Thanks for reading and taking the time to comment.


  4. Martha said,

    I’ve never been a competitive athlete. For me it is always just enough to enjoy the ride, which includes getting off my bike when I’m tired and maybe enjoying a picnic (and a nap) on the way. Kind of like the hare in the tortoise and the hare story–only at tortoise speed. Slow and not so steady–and definitely not winning any races, but having some fun.

  5. Rebecca Stanfel said,

    Hi Martha,

    That sounds like a sound strategy for living. Picnics and naps improve pretty much everything. Thanks for reading and commenting here–and everything else.


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