"Don't tell God how big your storm is; tell your storm how big your God is."

I believe in God.

Sunday, June 5, 2016

My New Synagogue

Yes, you read that correctly! The Orthodox synagogue I attended this past Sabbath was much more than a "nice place."  Everybody went out of their way to make me feel welcome, and despite the fact that I acted much more like their men than like their women, even though I am a woman, nobody seemed to mind, and I did feel welcome.  Next week I am even daring to take my prayer shawl; I saw another woman there wearing one this week.  It's going to be a while before I let my holy fringes from my undergarment dangle, but possibly I can even see that happening, too.

For Friday night, this synagogue is an even better option than the one I used to attend; I have a strong feeling I will continue going to this one even after I have a choice again.  This synagogue gets a minyan, the prayer quorum of ten required for much of the service, even without counting women; the other synagogue struggles to make that happen, even though they do count women.  Without a minyan, the service takes maybe 20 minutes; it's not worth walking sixteen blocks each direction for that.  Also, this is an Orthodox synagogue that allows women to sing.  (Some don't.)  Everybody present, including the women, knew what was going on and how to participate, and participate they did.

For Saturday morning, I still prefer the 16-blocks-away synagogue, but this one will do for now, and it's much, much better than nothing.  It's also close enough that I can go back for the late evening end-of-Sabbath services and such.

And the best part? The Rabbi, who is black-hat-and-frock-coat ultra-Orthodox, likes and respects me. I can tell.  I spent the whole Sabbath acting more like a man than like a woman, and he could have chosen to be annoyed.  Instead, he sees that I care about my Judaism, and that's what he cares about.  Perfect example: On Saturday afternoon he gave a d'var Torah, a speech about something Jewish.  Everybody else congratulated him with the usual Yiddish at the end; as is my norm, I used the proper Hebrew.  At first he didn't understand what I said; he asked me to repeat myself, so I did.  He didn't say the proper return formula, but he did say "You too."  From the way he said those two little words, I could tell that he was developing deep respect for my knowledge level.

Also, at one point during the service, the Rabbi noticed me sitting when everyone else was standing.  He walked over and parted the barrier between the men's section and the women's section (I was the only woman present) to ask if I was OK! In the moment, of course I just said yes; it wouldn't have been right to interrupt the service to explain.  People are so warm and friendly there, though, eventually I think I'll have to say something about pain, which I haven't yet.

As the Sabbath went on, I lost my shyness and people saw and heard more of how I do Judaism.  I could tell that they were beginning to both wonder why I was there, and to have some inkling that there was more to my story than I had told.  (All they know so far is that I wanted to try out a different synagogue.)  A few people know that I "didn't feel like making the long walk" to my usual synagogue; one person knows that I "have trouble standing."  That's all anybody knows right now, which is as it should be, but especially considering how kind the Rabbi is to me, he at least is going to have to know something more pretty soon.

And another best part? Despite the fact that I am still hurting just as much as I was before (and Friday night was so bad I couldn't sleep with covers), I feel so emotionally energized and recharged, enough to go back to helping the world.  So here is "GRAYSON," the first boy I came to on the Reece's Rainbow "At-Risk of Aging Out" page whom I haven't posted yet.  "Grayson"  ages out NEXT JULY, and is diagnosed with DOWN SYNDROME, CEREBRAL PALSY, FLAIL LEGS, SECONDARY MULTISYSTEMIC CENTRAL ORIGIN DYSTROPHY, DELAY OF PHYSICAL DEVELOPMENT, and SEVERE MENTAL DELAYS.


Friday, June 3, 2016


I'm really, really struggling with pain right now.  I am having a harder time than I've had since the pre-diagnosis days.  I don't really understand why; we did a full week of Ketamine last week, and now I'm feeling worse than I was before.

I am, however, a mighty strong human.  There is absolutely no way I can make it to the synagogue I like to go to (16 block walk each direction) this week.  I could choose to hole up and be miserable, but I am not.  Instead, I am trying out a different synagogue, the Orthodox synagogue five blocks away.  I can even do a five block walk twice, and I am desperate for socialization, so I am going both tonight and tomorrow.  I hope it's a nice place.

The holiday of Shavuot is coming up in just nine days.  Shavuot is when we celebrate the giving of the Torah at Mount Sinai.  I really doubt I'll be "well" by then, which is a shame because I want to hear the Ten Commandments in "my" synagogue.  If I can get there just one day, I am going the first day of the holiday, and attending services at the Orthodox synagogue the previous day (Sabbath) and the next day (second day holiday).  If I am still hurting this much, I will go to the Orthodox synagogue all three days.  I prayed with an Orthodox congregation my entire last semester in college, and on and off before that; I can do it again in a pinch.

At least for the first few times I attend that congregation, I am tucking in my tzitziot (holy fringes).  A woman in a kippah, especially a gigantic kippah such as I wear on Friday and holiday nights and am wearing right now, is shocking enough; I don't need to shock people anymore than I can help.

Back to the pain thing...it really doesn't help that my doctor is on vacation this week.  Don't think for a second I haven't considered calling for the on-call and making this an emergency; I have, because it's that bad.  Two things are stopping me.  Number one, I don't think there's anything a doctor can do for me short term.  The one time I did ask for the on-call, I was told to take extra medication and see if it helped, and to schedule more Ketamine.  Well the extra medication is not helping, and I can't schedule more Ketamine until I can speak to my doctor next week.

The other thing stopping me is whom I might get when I call.  There are two doctors in the practice other than my doctor.  I have nothing against one; he's just not the doctor I have come to trust.  The other one, however, is arrogant and condescending, and it almost literally makes me feel worse just to deal with him.

Depending on how fast my doctor can help me, I'm seriously considering getting a drastic haircut.  That would be sad, because I love the look of long hair; however, it's not worth the pain it puts me in.  I've lost enough weight now that I can pull off short hair.  If I did this, I would get my hair shortened to just one or two inches below my chin.  I haven't had hair that short in years, but again, we're trying to minimize pain.

No Reece's Rainbow kid today.  I need to focus on me.

Thursday, June 2, 2016

My "Jacob" Turns Six

I'm in more pain than I've been in since forever (I'll blog about that a different day), so this post is going to be short, without pictures, because that's all I can manage.  I missed doing it yesterday, however, and wanted to do it before we got farther into the month.

My "Jacob," the little boy listed on Reece's Rainbow whom I've been "praying home" for over three years now, turns six this month.  I don't know the exact day, and I probably couldn't share it if I did, but his description lists him as being born in June, 2010.

Six.  Years.  Old.  My "Jacob," whose pictures still show a two-year-old, maybe even a one-year-old, is turning SIX.  Can you take a minute to offer birthday prayers and wishes for him? Pray and wish that he is safe.  Pray and wish that he is not hungry.  Pray and wish that someone loves him and nurtures him.  I love him from afar, and my next charity donation will go to him.  That's not enough.  It's never enough.

Let's pray him home.


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I am a bipolar, Jewish young adult (had my Hebrew birthday, the one I count, and turned 23 this past January) who also suffers from Reflex Sympathetic Dystrophy. I love life and I live for my best friends: they are my purpose and my reason for trying so hard. I remain passionately devoted to those I love; I will not let my disorders make me totally self-centered. I like to read, write, and sew. My Rabbinical school plans did not work out, and I am now hoping to go into the field of Early Childhood Education. Please note: I am currently maintaining only Carried in His Hands. Enjoy!