It’s (Not) All About Me

not_meChronic illness has a way of redefining who you are if you aren’t very careful.  It engulfs every waking moment:  medicine schedules, treatments, therapies, doctors appointments, research, dealing with symptoms, support groups, thoughts, prayers …. you get the idea.  It’s a full-time job. And for awhile there, I fooled myself into thinking it was my full time job, and mine only.  But I was wrong. Very wrong.

As my disease has progressed, I’ve watched my family become “sick-centric”.  My illness worms its way into decisions as mundane as who will drop off my daughter at the library, to bigger things, like where (and if) we go on vacation this year. Too often, family activities are dictated by whether I’m having a good day or a bad day.  And, since most household chores leave me gasping for breath, my husband has taken over all the shopping as well as most of the housework — in addition to all of the yard work.  I see the strain on his face and it tears me up inside. Like so many people I’ve met with PF, the guilt can be overwhelming at times.

Yet, even though our activities have changed drastically, I still clung to the hope that my kids were relatively unscathed by all of this.  We’ve talked about my illness, and I’ve told them I’m always here if they have questions or want to talk.  Since both have remained fairly mute on the subject, I figured they each viewed all of this as just a bump in the road.  Again I was wrong.  So very wrong.

My daughter had to write about a personal experience for an English assignment.  She chose to write about when we learned of my diagnosis.  We sat in my bedroom, talking about that day.  She distinctly remembered  a frigid winter landscape, bare trees, gray skies and icy streams.  I was diagnosed in early fall — September.  The trees were still green, the sun bright in the sky and the temperature was almost balmy.  She became very upset, convinced I was wrong, so I told her to write it the way she remembered.  When I read the finished essay, I realized why she was so adamant about the weather.  Her memory of a bleak winter day was so vivid because that’s exactly how she felt.

The piece was beautifully written, and brutally honest.  And in it, I discovered that the news that day crushed my daughter’s innocence.  The mother who was supposed to always be there, no matter how much teen angst she tossed my way, was suddenly fragile and broken. She could no longer be certain when or if I’d be there. I’ve sobbed over that essay, especially as I see the same theme pop up in other projects and assignments.

My son, who is pre-law at Saint Louis University, has been deeply affected by my disease in his own way.  He’s a born debater, and unlike most kids his age, he uses his Facebook updates for serious discussion of issues that concern him most.  During the Presidential election, he posted a plea asking people to stop their political mud slinging for just a moment and take a wholly humanitarian view of “Obamacare”.  He used me as an example of the importance of universal health care.  My PF bretheren and I are uninsurable.  In my case, I’m looking at four years before I will have insurance to cover a lung transplant.  Since ability to pay is a prerequisite for getting on the “the list”, I risk the very real possibility that I may never make the list, or be dropped from it when I am most in need.  It happens, I’ve seen it.  And my son worries about that.  While I’m proud of his understanding and vision, I also know that he’s just 18.  Right now he should be focused on his studies, his girlfriend and hanging out with friends.

It’s not all about me.  And yet it is.  My disease is indiscriminate. Though it attacks my lungs, it devastates the whole family.  I can only hope (and pray) that whatever I learn/understand/accomplish through this illness, will be shared by the people I love most.


8 thoughts on “It’s (Not) All About Me

  1. Lori,
    My Husband has PF and we just found out about it March 2013. It’s the chronic cough that seems to do him in. I keep looking for anything that would make his cough slow down and feel better. Its still so new to us.I read about it and we have seem the specialist.

    • The cough is miserable. Your doctor should be able to help stabilize things for your husband. Prednisone works for me, so I’m on a maintenance dose of that. I also take another immunosuppressant, which helps with inflammation. Nebulizers and inhalers help with my cough, too. I suggest you check out, the PF groups on Facebook, and — they all offer access to other puffers who can help with suggestions and feedback on treatments that have worked for them. I wish you all the best and hope you will keep in touch. The most important thing is to find a good medical team to partner with you — professionals you trust who are knowledgeable about PF. PF is a hard disease — but it isn’t steady. Your husband could stabilize and stay that way for a very long time. There’s just no predicting. My prayers are with you.

  2. I read every word, Lori. And I do my best to understand — yet I know I can only touch the outer edges.

    I am struck by something you may not have focused on. You are teaching your children about boundless love — way beyond what children recognize in normal situations. You are teaching them, by example, the true meaning of courage. You are teaching them about  the value of soaking up the good moments in the”now.” (A lesson we could all learn.)

    And I’d guess that these children are blessed with a mother who absorbs their ups and downs more than most, who listens intently, to their everyday, mundane experience’s, a mother who is more “there” for them then ever before —  in the ways that really count.

    Just sayin’.   


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