Friday, October 26, 2012

Past the hidden saddness is beauty. Keep chipping away.

The most miraculous thing about Monday evening's yoga class was that, even though it was *really hard*, and I tried to keep up, and I passed on some of the moves, and I sweated lots, and I thought that I'll be so sore the following day... I wasn't! I wasn't sore on Tuesday at all. I was in shock. I felt fine! "How can that be?", I asked myself. I worked hard and used muscles that hadn't been worked in a long, long time. But there it was, me... not sore. Whaddya know!
I am planning to try another type of yoga class and then compare, and I'll chose which one suits me best. I felt so weak when I returned from the class. I could barely life my arms. I was shaky from challenging under-used muscles. But I woke up feeling fine. Yeah!

I had a pretty good week. Still very little pain in my hips. Amazing trend here! I am still so exhausted all the time, though.

I think I forgot to mention that I have been receiving reflexology sessions pretty steadily now for... three weeks is it? It started one evening when our friend, who knows reflexology and reiki, came over to pick something up. Robert told him I was upstairs with a migraine, and he came up to do some reiki, and then reflexology. I got to sleep well that night, drifted off without medicines, the migraine reduced to a mere headache.

Our friend offered to come back and continue reflexology treatment in hopes of keeping migraines away for a long time. Who am I to refuse such an offer? So, he has been doing it twice a week now, for I think three weeks.

I have been mostly out of pain, and migraine free, until.....

last night.
He came over to do a session, and I had a headache at the time. I was way over tired, and the tired headache was coming on. We hoped it would stay small or even go away with a reflexology session. Unfortunately, it blew up to a full-on migraine, all night. At one point I did manage to fall asleep, but I dreamed an awful dream of pins in my eye, and I woke up feeling exactly like that. It lasted into today, as well. I tried to get up and get to my MRI this morning, but I was so weak, and still had the migraine, so I had to cancel. I have never canceled an MRI before- they are not easy to get lined up. I had no choice, though- I was just so weak, and could not imagine being in an MRI tunnel with that jack-hammering constantly in my ears, while suffering a migraine. Fortunately I got another appointment for a few weeks from now, still in plenty of time before I have to go to see Prof. Meller.

I spent the rest of the day in bed, resting on and off. This evening our friend who has been doing the reflexology came over specifically to do reiki healing on me in hopes of getting rid of the remaining headache.

At this point now, I still feel pressure behind my eyes, but the pain is reduced. I need to go to sleep soon.

I realized that not a week goes by without me taking a full day off. Usually in bed the whole day. Have you realized that? Every week, I am pretty sure, I take at least one day off (besides Shabbat) to heal from the exhaustion of the previous days. It is usually Thursday and/or Friday, because those are the days Robert doesn't work out of the house. I am able to push through the beginning of the week, Sunday and Monday without Robert (he sleeps over at the high school where he teaches, and returns late Monday night). Tuesday & Wednesday nights he isn't home either until late, and our nanny is here with me. She comes four afternoons a week to help me out. (huge out-of-pocket expense)

By Thursday (that would be now... I have already dozed off twice while writing this, even after spending the day in bed) I am wiped out. There are many times I am in bed Friday's, as well. Robert works so hard during the week, and when he isn't at work, he is often on household duty all day. Also, he often is the only one who cooks for Shabbat. I am so ashamed to say that- I want to be the Jewish woman home-maker. I haven't made the challot in a long time. I want to be able to at least cook for Shabbat. It is just *so* frequently I am completely unable to do it. If I do try, I feel weak all day, shuffling my feet as I walk, doing things slowly and inefficiently, and winding up down on myself because these things are so out of my control.

Sometimes on Friday nights (Shabbat evening), when we sing the song "אשת חיל", I feel like I am not deserving of feeling that the song relates to me. It is so integral for me to feel like I am good home-maker, I get so down on myself when I can't do it. I wonder to myself "what would happen if I didn't have a husband (G-d forbid), or if my husband could not do what Robert does?" Then I can berate myself and answer that I'd just have to step-up-to-the-plate and get it all accomplished... no choice. But honestly, when I can do it, I really DO IT. I can go and go and go non stop when I am feeling well and get a zillion things done, and have a smile and a positive outlook for my kids to enjoy, as well. 

Why would a person berate themselves for having a disability prevent him/her from doing what they want to do? But yet, here it is, I am doing that- all the time. I apologize to Robert for being in bed so much. I know, intellectually, that it isn't my fault. However, I read these books about people who overcame maiming of all sorts, disease, all kinds of adverse conditions, to come out being the altruistic hero, overcome depression, and have books and movies done about them, and I feel like there must be something wrong with me- I am not emerging out of disability with heroic triumph. I struggle, I get depressed, I complain, I get angry, I feel defeated with exhaustion. I try and try to strengthen my faith, and it just isn't always there to lean on.

These are the hidden hardships that outsiders don't see when they look at me, and that I cannot explain when talking about what I have gone through (and continue to go through). These diseases I have lived with, insidiously chisel away at my self esteem. Mind you- it wasn't so strong to begin with. 

I dream of participating in the orchestra's all-Beethoven week (the orchestra I played horn with for 13 years). I would do anything to sink my teeth into some Beethoven symphonies again, to feel the awesome feeling of strong and heroic music surrounding me as I add to it my part in the harmony, and to the melody. The horn parts in Beethoven symphonies are magnificent. I love it with all my heart and soul. I played horn professionally for 20 years (including all the Beethoven symphonies, multiple times). Then I got sick with NF, and gradually stopped playing. The constant pain, the surgeries, the complications took it away from me. It has been over two years since I picked up my horn at all.

I can't even show up to an average day sometimes. I can't get up early in the mornings consistently, and I barely have energy to finish out the day with my children, and that is *with* a nanny in the house every evening. I'd have to practice intensely for at least six weeks in order to play well on stage again. How am I supposed to do that? (tears welling up). I have to face reality, and I try so hard to be OK with my lot in life. Indeed, I am very blessed and deeply spiritual about what I have been through, and all of you know I can be very positive about being turned into a stay-at-home-mom, even though it wasn't by choice. Ultimately, I know that Hashem is Good, and that there have been many, many gifts that have come out of my illnesses.

But still, the days that I am defeated, exhausted in bed all day, fighting nerve pain, hip pain, migraines... those are the hidden hardships. Don't even get me started on the hidden expenses of this post-NF life. You would be shocked to know our financial issues. It is not only because I don't work (and 100% disability with four kids is tuppence, believe me), but the other hidden expenses- it is just astounding. Some time I may itemize it all for you.

Comparing myself to others is useless; even dangerous. There is a blog I read which is written by a woman who survived a plane crash, with more than 80% if her body burned. She spent months in a coma. She went on to have another baby, painfully stretching all her skin grafts, to heroically carry this life inside her. I cried when she wrote the entry about finding out that she is pregnant with a girl. She never complains in her blog- only expresses gratitude. She is quite visibly disfigured, but yet seldom speaks of the hardships that go along with that. Her husband is her hero, her children are all close to her, and it is a happy life they lead. She doesn't write like I do. She doesn't complain.

My disfigurements are all hidden to an outsider's eye. Always have been.
Robert and I- we live with the reality of the fallout after NF, and the other complications that arose. We know everything that is hidden to the outsider's eye. We struggle- on so many levels. It is HARD. Our spirituality has been challenged also, to rise above what could be bitterness about the situation. I often see him as put-upon. I think he sees his life that way, sometimes, as well. Who could rise above all the time? So, communication is difficult. Many hidden thoughts and feelings which just feel useless to discuss. Distance forms, and hardship wins.

These are the hidden things you don't know about. The things that are very real struggles. I have to sum it all up for myself in saying that I know it was all tailor made for us to rise above, and to grow into the beings we were formed to be. I pray that we will grow stronger, and closer together through this all. Quite a challenge, indeed.

As Robert points out sometimes, in a philosophical mindset: when something is chiseled away, it means that the parts which go crumbling to the ground from the chisel are "פסול", or disqualified, wrong, waste product ("פסולת"). What is left becomes the piece of art, the statue... the פסל. All three words are from the same root. Meaning, only with the creation of wrong material can the "right" hidden qualities emerge. Beauty is uncovered, not outwardly created. We must uncover it, we must chisel away the waste product. The hidden- what I have been talking about here for over an hour of writing- must emerge with working hard at chiseling away the waste product.

It's just that I feel not strong enough to chisel. I don't own a chisel, and there is so much hidden beneath the surface. Illness can chip away at feelings of self worth. That is what I am trying to say here, which took me many many words to try to say.
I need a hug.


  1. sending a hug from New Joisey, America. 000000.
    Beautiful post. We are often our own worst enemy, expecting so much from ourselves and falling short.

    lila, it's late here.


  2. Sending you a virtual hug.... :-) Must tell you about Drawers class. We spoke about our constant struggle to find peace between our warring selves.

    Love, Miriam

  3. Oh Sarah, I feel all of that stuff all the time and I don't have health issues like you! Why can't I do better, why can't I always be nice to my kids, why can't I always cook a healthy nutritious dinner and have a clean house. Other people seem to do it, why cant i? I couldn't imagine doing what you do and how you just keep going. And Just because someone only writes positive things doesn't mean they only feel them, it's just what they choose to write about.

  4. Thank you precious Sarah. You will be released soon from this I know it. Love Paul

  5. Hugs and more hugs. I almost cried when you wrote about your eyes welling up. Gosh....its amazing how your body works-the hip pain subsides-but then bang-the migraine. Grrr. Hang in there girl. I hope next week will be better than this one.

  6. However you feel about yourself I read your blogs with amazement that you do as much as you do. Don't be so hard on yourself. I am accumulating health issues-compared to yours almost insignificant- but they make going to work, relating calmly to my kids, playing horn a real challenge some days. My house is always a mess and I am not a good cook (glad we have a kibbutz dining room) and I also berate myself for not doing more...but I am thankful for what I can still do and hope it is enough. I think your family knows you try and that you care for them.

  7. Dear, dear Sarah,

    Shavua Tov and I’m sending you a huge hug!

    I’m also sending you this link. Please let me know if you’ve already heard it:

    Lots of love,

    Miriam M.

  8. Where to begin? Sara, thank you for your honesty. Life is often hard, especially in Israel, even without the huge trauma you lived through and are still living through. Add to that the tension in the south right now, and the fact you're getting out of bed at all is pretty amazing.

    Like the ladies above, my house is a mess, papers piled high, kids screaming they don't want to do the homework, me losing it with them. Even our Susie Homemaker mothers felt inadequate most of the time.

    My prayer for you is of course continued recovery and a big windfall, so you can hire someone to make all the yummy, health food you love.

  9. Thank you Michelle!! A windfall sounds great about now.... I'd love to have a personal chef. Oh yeahhhhhh...