Hopeless comes to mind...

It's been an incredibly hard, busy, sick week.

Sunday I had acupuncture. It was for pain relief and strengthening the tissues around my skin grafts and scars. It was fine, except the needle she put in my right hand hurt a lot, and when it came time to take it out, it continued to hurt, and I could barely use my hand the rest of that day or the next day. By Tuesday, a big red spot showed up spreading around my hand.... warning sign. I know that warning sign very well, I've had cellulitis many times. I went to the doctor, and the doctor sent me to the ER. I waited an extraordinary amount of time (like usual), and finally got an IV of antibiotics flowing. After that one dose, they sent me home with oral antibiotics for the rest of the week. They tried to tell me I don't have cellulitis... simply because my white blood cell count wasn't high. Well, my white cell count wasn't high either when I had NF. I had an expanding red patch on my hand where a needle had been inserted a few days earlier, it was hot to the touch, and hurt like h*ll, all the way to my wrist. I'd call that cellulitis.

the needle went in at that spot between the thumb and the first finger...
where it's red here, three days after the fact.

IRONY: for those of you who can't read Hebrew-
This is my number I held while waiting to be called into the doctor.
At the bottom of the paper it says "acupuncture is very effective
for pain treatment! The introductory meeting is only 70- shekels, blahblahblah...
And there I was in abdominal pain, and hand pain, with a new case of cellulitis from
the acupuncture. Oh, the irony.

I got home at 3:30 am from that.

Then the next day I drove into Tel Aviv to pick up my brother at the airport, then take him to his apartment (in Te Aviv). We met with another friend there, but it became clear that I was an impediment because I couldn't walk much, and they were looking for a place to eat. So, I took a bus back to my car on a Tel Aviv street, and drove myself home. That was Wednesday.

My brother told me about how things were at my late parent's house for the month. He & my other brother worked very hard cleaning it out. VERY hard. It is now echo-empty. Not a carpet on a floor, or a picture on a wall. His last parting action was to take the mezuzzah off the door as he left for the last time. Now it's up to the real-estate broker to sell it. It really left a deep impression on me... that house being completely empty. I grew up in that house from the age of four. It's a big deal. My home-base in the US is gone. I know that my memories can't be taken away, but this is a huge step in grief. I'm sad that the house, holding bad memories as well as the good ones, is gone. It's not sold yet, but it's gone. Another family will be raising their children there, going to the schools I went to. It's the way of life. And another nail in the coffin for my soul to deal with.

Thursday brought me to Jerusalem to a surgical consult about my abdominal pain problem. This was an indirect recommendation from Rabbi Fisher... he had recommended the head of the department to me, but it turns out I learned from the secretary that this particular doctor no longer sees hernia patients. So, he recommended me to go to one who specializes in hernias.

That is the one that got me totally depressed.
He basically said he wouldn't touch me with a 10-foot pole. I have no stomach wall at all (destroyed by the NF), and the mesh that is in there is holding well, he said. He looked at the CT scan, examined me standing up and lying down, and said everything is fine. No surgical intervention recommended, no explanation for the pain I'm in.

I know he's not the end-all-and-be-all of opinions in the world. But that visit broke me in a way that I hadn't broken before. It was his "sucks to be you" attitude that I left with that made me so depressed. I cried to my friend Hadassa on the phone... then she popped in to the hospital where I was for a hug and a chat. (Thanks, Hadassa!)

All Thursday I had a headache.

Friday I had a headache, and stayed in bed just about all day.
Friday night I sobbed my eyes out, just feeling so hopeless.

I don't know if I'll go to the Mayo clinic or not... they accepted my case, and I have a date. But I have no hope. I have no reason to believe that they will see things in a way others aren't. It's a lot of money for me to spend, and I am not sure there is any hope for help there. I don't know if a surgery to break up adhesions would help, any surgery could make things worse of course.

Maybe I need to try to get in touch with a doctor for my case there, see what they are thinking in general. It is a hard decision to fly all that way (very difficult for me) thinking that I may just be told there is nothing they can do for me.

I don't know if something is wrong with my digestive tract; I'm certainly taking a ton of vitamins and supplements these days. Something is CLEARLY wrong, though, somewhere in my abdomen.

I feel that I am going to spend the rest of my life in this half-life way, in pain, with no hope of anything changing. I can't even write how awful I feel, It's beyond my words. I can't even imagine getting my life back. I can no longer imagine myself being back in my life as it was-- even just seven months ago.

What is happening to me? I am disintegrating before my very eyes, and I don't know how to reverse it. I am a non-person, just existing. I am in such a deep depression, I can't express it.

On top of this all, the MRI results from my thigh joint and knee joint was not great. All that pain I have when I go up and down stairs is from a new disease I have in my knee-- basically together with arthritis-- bone-on-bone-- it's just too depressing to deal with. I'm supposed to see an orthopedist also and deal with that, too? I can't. My abdomen hurts too much.

I just turned 50. Yay me.
I feel like I am at 50 what my mother was as 80... in bed and dying.

These could be some amazing years. How am I going to turn this around? How is the pain ever going to go away? This is very serious. I am at the bottom of the ditch.

Next week also holds a lot of traveling. The pinnacle of which is on Thursday when I meet a new healer in Jerusalem, but I am guarded in having my hopes up. I feel I can't have any hope for anything anymore.
It's a bad situation, guys.

In transit... between two worlds, visiting all my worlds

[I returned home Thursday evening, no problems, BH. We went to a wedding Thursday night-- yes, crazy, perhaps, but this was a special one-- it was the daughter of the woman who's father's funeral I attended in NY.-- father buried one week, daughter married a week later.
I was running on pure adrenaline.
Friday I slept all day, woke for Shabbat dinner. Shabbat, slept all day. Sunday-today- I am up, but not on schedule yet. Lots of pain, but I'll be OK. Getting overwhelmed with Rosh Hashana coming up so soon!]

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OK- this entry started on the day I was leaving NY, last Wed, the 17th. I started writing it in my parent's kitchen, continued it on the plane, added the pictures here in Be'er Sheva, sent it out Sunday.

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The car service is coming in an hour to take me to JFK airport. It's a spectacularly beautiful day here in the little country town of Glen Head, a hop-skip-and-a-jump from Long Island Sound. It really is so beautiful around here. It rains frequently, and everything is so *lush* and green. Incredibly green- thick trees and bushes of every sort, moss on tree trunks, and all the streets are shadowed with thick, rich, tall trees. The air is sweet... the smells of cut grass, that sweet after-rain smell, and there is a fall nip in the air. Sounds like utopia, right? Sometimes it actually feels like that.

down the street from my parent's house

I didn't leave America because of discontent. Israel is 100% my home, I never have any doubts about it. I am fortunate in that I have a deep, loving appreciation for the wonderful attributes of each land.

my girlfriend and I rendezvoused at a gas station when we discovered that we were
talking on the phone to each other, a mere few meters away from each other!

I'm returning to Israel soon...  my flight leaves at 9pm tonight. It has been a *long* trip. I feel like I've been away for months.

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On the plane now.
Take off will be in about 20 minutes.
It is such a long haul to pack up and schlep everything! I was up most of last night, packing and organizing myself. OK, well, I'll be on this plane for the next 12 hours. So far, the middle seat to my right is free. It'd be awesome if it stays that way! I'm planning to sleep lots. It was a FULL, busy, fulfilling trip. The two highlights were the writer's conference, and the time I spent with my parents- quality *and* quantity. It has been a *long* time since we had that sort of uninterrupted time together. I am aware of the reality that we can't know when that may, or if it will, happen again.

I attended a funeral last week. It was the father of a dear friend of mine from Israel. My friend was brought up in NY. Her father passed away, and she flew out to NY the next day. I joined her at the funeral. It was strange to be with her in NY! We had never seen each other out of Israel. But it was good to be able to support her, and to be there.

Funerals in America are so different than they are in Israel. In Israel, people are buried in shroud cloths, no casket. When I was watching the funeral home director trying to direct the casket of my friend's father down into the grave, it was scary. It is so heavy, and the people holding it have to stand on planks which are placed across the grave, lowering it with the help of straps. Once it's in, then the grave diggers have to check if it is in properly, and in this case, the casket had to be repositioned. It seems so much smoother and easier when there is no casket involved. I don't know. I guess it's awful any way you do it.

Onto lighter subjects...
I saw many cousins whom I hadn't seen in ages. In Washington DC I stayed for a few days (including over a Shabbat) with one of my favorite cousins ever! Got to know her husband and daughter a bit better, too. I met with my first cousin on my mother's side, Dina, in Washington DC. I hadn't seen her in probably 27 years or so.

my first cousin Dina, me, and her mother (my aunt who I hardly ever knew!) Shula

 My other first cousins on my father's side, Lois & Ellen, I visited in NY. We had seen each other slightly more frequently, but not much.

My father, Ellen, me, Lois, my brother Peter

first cousins: Ellen, me  & Lois

 I also saw my Aunt Reva, who is in her 90's, may God give her strength and wherewithal for many more years!

My father, me, and his sister- my aunt Reva

OK, know what? I am so flippin exhausted, I need to sleep. The plane is still filling up, and take-off is in 10 minutes.

Oh, and the middle seat, next to me (I'm in the isle) has been taken. Oh well. No biggie.
Oh, I just remembered that I have to go put on my heavy pressure stockings. I should do that before we take off..

Then, I really think I'm just gonna put my computer away and go to sleep. Bye-

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OK, I just had a pretty decent sleep, thank Gd. Woke up two and a half hours before landing, which is good timing. I got a good walk around the cabin a few times. According to the amount of pain I had when I got myself up after sleeping, I could have used some more walking around the cabin.  I drank some tea, chatted with a woman in the next isle over to my left, traveling with her three kids. One is about one and a half. I *remember* traveling at different points over the past 15 years with kids that age, almost every trip.

So yeah, now that I'm a little less tired, I can say that this trip was a true blessing. It was just all good. Hard for me physically at many times, a few awful migraines and nights throwing up, but overall, I held up. The lymphoedema needs some serious draining massage, though. It's been in a constant state of discomfort and swelling. To be expected, I think. I am wearing the dreaded tight tight tight orthopedic tights on the flight now. You know, I timed it this time- putting them on in the tiny airplane bathroom- 20 minutes *just* putting them on. Bleh. Oh well, could always be worse!

There is one huge change that happened on this trip which adds an emotional dimension that I will never forget- I sold my old french horn. *NOT* the one I play usually (or played, to be exact), that one is in Israel. The one I sold is one that I played during the last years of University in Boston, and all throughout graduate school. I did play it my first years in the symphony in Israel, but it isn't in the style (sound-wise) of the horns that Israeli orchestras play.

Each city which has a symphony, in every part of the world, has it's own unique sound. In the wind sections especially, the goal of a homogeneous sound often entails a uniformity of the type of sound that the specific instrument produces. Each "brand" of instrument is known for it's different nuances in sound. There are horns with a small "bore" which means the diameter of the inner tubing is literally smaller than a large bore horn. This, of course, effects the timbre, or color of sound. The horn I sold is my Schmidt, small bore, nearly 100 years old. It's a very, very special horn. In Israel, large bore horns are more commonly played. Many years ago (13 or 14 years ago) I tried out a particular horn someone was selling in Israel, and fell in love with the ease of how it plays. I bought it with an interest-free loan that my orchestra gave me, which was really easy to pay off through my monthly paychecks. I then had two horns on my hands. I tried to sell my Schmidt in Israel, but since it is not a commonly played instrument on Israeli orchestras, it didn't sell. I then brought it to Boston so the dealer who I bought it from could try to sell it for me. It didn't sell in many years in his studio. It was so surprising because that is the horn that the players in Boston desire. After it was in his studio for a long time not selling, on a trip my parents had to Boston (it used to be a regular thing for them every summer to go to Tanglewood to hear the Boston Symphony), they went to his studio and brought it back to their house in NY, and advertised it there. Didn't budge. A few people played it over the years, but no bites. Even a collector of Schmidt's, a horn player in NY, who fell in love with my horn, told me he just can't buy it because he already has 20. But he praised that instrument up and down. He clearly understood it's unique beauty of sound and the special value of that particular instrument. Along came my first horn teacher, Mr. Moller. He also fell in love with the horn, but finances didn't permit him to buy it. Fixing the roof which had fallen in from a storm took precedence. Geez, can you imagine such an excuse? ;)

When I was returning for this present trip, I advertised the horn again, announcing the dates I will be there, and that it is still for sale if someone wants to come try it. Again a few emails with the guy who collects old Schmidt's, but he still couldn't swing adding one more horn to his menagerie. Lucky for me, because the long awaited phone call came from... my old horn teacher (he's not old, perse, but old meaning long ago in the scope of my life)! He was in a position to buy the horn, and was so happy to see the ad I placed, that it is still available. He came over a few days ago. It's always awesome to see him, a real childhood hero for me. Very special man. His encouragement, patience, and belief in me is what set me on course for my successful career. Well, with cash in hand, he checked out the wonderful instrument again, and made an offer... higher than what I was asking. I came back with a lower offer. It was an unusual, odd sort of haggling, but I wanted him to have the horn, and I couldn't see taking so much money from such a special person in my life. We agreed on something in the middle of his offer and my expectation. Unmarked bills exchanged hands (they are unmarked, right Mr. Moller? ;)), and my beautiful, special, antique horn went to the most wonderful person I could imagine playing it. I am deeply moved by this all, and yes, a little wistful. But, it is all the natural process of life.

well, "can't take it with you", as they say!

Here are pictures of the monumental tectonic shift:

Mr. Moller- may you play this horn with your natural vitality and health, and may it serve you as well as it served me all the years!!

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Well, we are now about to land! Should be in about 45 minutes or so. I'm almost home.

The trip was certainly memorable. My world shifted in many ways, both small and large. I just realized something- I actually lived all three of my careers on this trip. The writer's conference of course--

All the conference attendees!
I'm standing in the second row from the top, wearing white, about half way in...

then selling my horn and entering that world. I even used my doula skills. That was when I was trying as best as I knew how to encourage my mother in her physical therapy to stand. She did it- with the physical therapist and my father on either side holding her up so most of her weight wasn't on her, she, herself holding onto a walker with much of her weight, and me holding her around her middle in a big bear hug. She did it. She lasted about 20 seconds the first time, then after a rest had the courage to try a second time, for about 10 seconds. It hurt her all over, of course. Her body is quite atrophied from being bedridden for two and a half years already. But, she tried. The future is unknown, and the past is no longer ours, only the present is ours to use. That accomplishment, for my mother, was a very courageous use of her present moment. May you keep strong Mom, and remember- replace the phrase "I'm scared" with determination.

We're in a holding pattern now over Ben Gurion airport in Tel Aviv. Too many planes there at the moment for us to fly in. I heard there was a strike at the airport today.

I just may finish this blog post yet!

Mission accomplished regarding the tight tight tight lymphoedema stockings. It took about 15 minutes this time to take off. Putting on my "regular" pressure garment feels loose compared to those. Usually that one is tight and uncomfortably hot, but after the "flight tights" (hey, new nick name!) it's obscenely loose. :)  Oh, this is awesome- the captain just announced that we are cleared out of the holding pattern and are going to land soon! And I finished this entry. How inspirational.

Home. Be it ever so humble. I am yearning to feel my children's hugs, look into their eyes, and hear their voices and laughs.

And Robert, my love. You gave me a gift that is more valuable than you can know. You, yourself made my reservation, blessed me to go to the conference, and added much more time to spend with my aging parents. A true, selfless gift, from a true, selfless man. Thank you with all my heart.

Hanging out with Mom & Dad, Long Island, New York

The house I grew up in from the age of 4...
(born in Chicago, moved to Oregon, then back to the east coast,
a few places in neighboring towns, then this home.)

Wwwrrrrrrrroooooooooooo~wwwwwrrrrrooooooooo....!!!!!

The pitch goes up and down and up and down repeatedly. I woke up with a huge startle and adrenaline running through my veins... first thought: siren. Go to the safe room. Where are the kids. Make sure everyone is getting into the safe room. Heart beating fast...
oh, wait, it's a fire siren. I am in Glen Head, NY. fell back into a very deep sleep, but with extremely vivid dreams this time.

!!!BOOM!!!!! CRACK!!!!!!!!!!!
Again, I am awakened with a start, more adrenaline, OMG, a bomb that landed close by, with no siren. Crap! OMG!
Oh, again, the fog is lifted in a second, and I am in my brother's old room in the house I grew up in... and it's raining with loud thunder. Oh yeah, rain! I haven't seen, smelled, or heard a rain storm in many months. What a crazy way to wake up. And the vivid dreams that pulsed through my blurry mind thereafter, wow, talk about strange. Toto, we aren't in Kansas anymore! (in the Wizard of Oz it was meant a little differently than I mean it here, of course.)

Jet lag will do that.

The plane ride went fine, technically. Personally, not so great, though. Sleep was not an ally for me. I was in too much pain and couldn't get comfortable. I was wearing a very tight garment because of the lymphoedema, and it isn't something one can ignore when wearing it. A sleeping pill made me sleepy, but it didn't take the pain away, and I couldn't sleep for more than 5 or 10 minutes. 11 hours goes very slowly when you hurt. Oh well. I walked around the plane a lot. I was told to do that because of my lymphoedema. Maybe that's why Hashem didn't let me go to sleep.

The Shabbat before school starts; traditionally,the Shabbat of the *special challot*. I make challot in the shapes of the grades they are going into. I made a "gimmel", a "vav", a "tet", and a "yud". Third grade, 6th, 9th, and 10th grades. The kids love those! Makes it a special time, gets them excited about school starting. Unfortunately, I forgot to take a picture! Oh well, next year. :)

I missed the first day of school today, but it seems to have gone well. I spoke with all my kids after school. Ya'akov is the only one this year starting a new school- high school. The new school is in Jerusalem. Sunday through Thursdays he stays with our cousins who live there. I am *so happy* about him being at this specific school. Since there is no dormitory, my cousins have been gracious (and brave?) to open their house to Ya'akov. I feel in my gut that this is a good match... praying on it! Honestly, I am overjoyed at how this has all worked out. The past few years Ya'akov has been miserable in school. We knew his school wasn't the right place for him, but we didn't have any other good choices. Now that he can study in Jerusalem in this very special [private] school, I think things will begin looking up for him. Please Gd. And I hope we get financial aid. Please Gd.

So, here in NY.... my parents are doing fine, thank Gd. Not worse... but not better, either. My mother is in relatively good health, but bedridden. My father is also, thank Gd, in good health, although he walks with a huge limp. He says he's not in pain, though, so that is good.

Lovebirds

Mom & Dad on the back porch

I took a walk around the outside of the house today. I was seeing my childhood in my mind's eye. ...That tree I used to climb- but they had to cut off the limb I climbed onto.

Can you see that "scar" halfway up the left-most trunk? That is where the branch was that I climbed out onto.

...That other tree had the tire swing.

Tire swing tree in back yard

 The rock patch is no longer, covered over with moss. The crab-apple tree is gone. But mostly, it's all there. My childhood- it's all there... here. The only thing is that I can't sleep in the room I grew up sleeping in because the caretaker who lives here with my parents lives in my old room. So, I sleep in my brother's old room. No problem at all. I love the caretaker who is here with them- she is a wonderful person, and takes fantastic care of my mother (and father).

Yes, this is a genuine, original dial-up wall phone with a coiled cord. It **STILL** works, and they still use it. YUP.
When I was a teenager, I used to take that receiver with me down the basement stairs (door at left),
sit around the corner in the basement (stretching the cord way passed capacity!) and gab away in privacy.
Every now & then my mother or father would open the door and yell into the dark abyss "Sarah! Off the phone!
You are stretching the cord too far! Who are you talking to? We need the phone! Get off the phone!
You'll see them tomorrow in school!"

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I'll be leaving on Thursday to go to Maryland for a week. First I'll be with cousins who I love, then to Baltimore to the writer's conference which inspired this trip! I am so excited to go there. I will eat up the writing inspiration and advice, wisdom, tricks of the trade, clarity, and whatever else I know I will eat up from the three day conference. I honestly can't believe I am going to it! In my life, it is so hard to make any long-term plans, and be able to carry through on them. I kept thinking that I'll get sick, or something will happen to make me cancel this trip. But, here I am!

A huge thanks goes to Robert for supporting me to come!! And taking care of the kids, and all the arrangements necessary to do that. He's such a special husband... gratitude abounds. :)

Signing off to watch TV with my parents before we call it a day. Such is life.