Wednesday, February 17, 2016

living parallel

I've realized it's parallel... life. Not going in an upward direction, not heading for some point. If you are lucky, it doesn't go downward. It is parallel. Mine is, anyway. I thought I was heading for certain points... reclaiming my talents, etc. But I'm not. There is no high point to aim for. It's all parallel. There are high points in life, for sure. But we don't aim for them, they happen. They pop out of the parallel.

We (people who deal with chronic medical issues) watch the world go by, watch our kids grow up (at least, the lucky ones do), we do as much as we physically are able to do, but the goals just never seem graspable. I'm fairly sure I won't ever play in an orchestra again. That hurts my heart, but it is reality. And as far as returning to any other sort of normalcy, well, I think I have it the way I am ever going to have it, right now.

Yesterday in Tel Aviv, at my orthopedic surgeon, I got the "all clear". The healing is going well after surgery, and I can expect more, steady improvement over the course of the year. That is *good news*. My right thigh joint is on the right path. The pain is very minimal, and things are moving the way they are supposed to. I will get back to stability with regards to that leg. It will continue to get stronger, and then it will level out and no longer be a problem. Don't get me wrong, I am happy about this. It brings a "low" situation back to parallel.

Regarding other issues that NF (and Fentanyl) left me with:

Sleep problems. Big time. Awful sleep problems. Awful headaches. It started with the insomnia from the 10-month withdrawal period from Fentanyl, and hasn't gotten back on track. If I can sleep and wake up during regular hours, life will be parallel again.

Gapey: rashes and small infections on a fairly regular basis. I always wonder if this or that little painful nodule is the one that is going to lead me again to cellulitis. It hasn't recently, thankfully. That situation is a little lower than parallel. I am also always uncomfortable without the prosthetic pillow. I may have to start wearing it again, but that brings down other things about quality of life. We're looking for parallel here.

Also sub-parallel regarding gapey is that my bronchitis is back. The internal bleeding episode from last time (two weeks ago) has barely fully drained (there are still purple marks), and the pain is coming back again because of the coughing. That one clip inside gapey- the one of many- the one I feel strongest- is again getting irritated. I am taking cough medicine to try to keep on top of not coughing, but I am still coughing.... hard. Kept me up last night, made a migraine get harder. That was after I returned from Tel Aviv. Gapey hurt so much. So yes, it is good that my right thigh joint healed well, I am eternally grateful, and I mean that with all my heart and soul. I don't take anything for granted. But the rest, the fallout from NF, I just try to maintain parallel. I am a very strong woman, and can handle A Lot. And I fight these things that hold me back because of the deck of cards that I was dealt.

But maybe fighting isn't what we are here to do. Maybe just parallel is OK.

I recently changed the subtitle of the blog- I doubt anyone noticed, except the person who encouraged me to take his suggestion. Instead of "Rebuilding my life...", it's now "Building my life..."
That is a subtle, but powerful change. I realize I am no longer trying to piece together what was. I have to let go of that. I am just living parallel after what I could build out of the rubble. I built, it got built, and now I try to maintain parallel. Does that make any sense?

I have to go get more cough medicine, and Excedrin for the impending headache. And put more antibiotic cream on my skin grafts, hoping that the raw, thin skin won't get angrier.

I am strong, I have what it takes to live a long, good life. Parallel will be just fine. I guess.


  1. I think you might enjoy her writing. Her end message was similar to the one in your blogpost.


    1. Wow, she is an amazing writer. Thank you so much for sharing this. Yes, there are some similarities... it helped me find other words for my experience. "Living in the moment", because striving just isn't in the cards. This couple is also "building" instead of "rebuilding", like me. But they don't get to share memories about it.

  2. I wonder if you mean a plane rather than a parallel. Or a straight line. I'm not sure you've got the right word yet. I am bad at all math but maybe you know a geometrist. In the meantime, yes live in the moment. It doesn't mean you don't have goals or a future plan. It hustle means you are where you should be.

    1. I've been thinking on what you suggested, and I realize that the word "parallel" does indeed speak to how I feel. Parallel to the ground... going up when the ground goes up, going down when the ground does. Not able to strive. Not aiming for something out of my reach, I am parallel, well, to the earth. Does that make any sense?

  3. Oy. I think I just erased my poignant comment. Just wishing you spectacular moments in which to live. The now is special. Also I think you might mean a plane or a line and not a parallel. But check with a math or geometry person.

  4. Yes, I get parallel. A good term. I hug you sister.

  5. And it might be,
    The comfort of a knowledge of a rise above the sky above
    Could never parallel the challenge of an acquisition in the here and now,
    Here and now.