Becoming, and becoming a nurse

It's been a whirlwind since I started nursing school.
Classes almost every day, tests all the time. Memorization, memorization, memorization. Learning and studying constantly. When I'm not in class I am home studying and making summaries in English of the classes (which are all in Hebrew of course). (I do try to get to the gym still, but it's more like once a week...) To say it's been challenging is an understatement, it's been so intensive and difficult for me I feel like I am just scraping by. But I've passed all the tests (so far?), and am keeping my head above water. The amount of learning feels like first year medical school, honestly, with the in-depth details of illnesses, syndromes, and complications we learn. Soon we start a class in pharmacology, where the level of memorization will skyrocket to heights yet unknown to me. Then pharmacological mathematics, where, if you don't get a 100 on the test, you don't pass the course.

Two more years to go.....

Today I had a test in Pathology. It was mostly about cancer tumors, post-mortem exams, various illnesses with varying and complicated names for tumors and irregular developments. What didn't I have to work too hard to learn? That which I've personally been through-- Lipomas, hypotrophic scarring, necrosis, infections that can lead to necrosis, sepsis. I am a pro in those fields of information.

Funny thing is that the test was in a classroom in Soroka hospital, the place where I went through all that stuff. Usually our classes and tests are accross the street in the teacher's center building, but it was closed today so they sent us to Soroka to take our test. Aside from not wanting to run into the doctor from the NF, I was also flooded with memories of my hospital stays there. I was in the area where it all happened, the main area. Recently, like for the past few years, if I've needed the hospital at all, I've only had to go to the out-patient building, and not experience flashbacks. And honestly, I've been so healthy that I've only been to the hospital grounds a few times, and those were to finish my series of immunizations for getting ready to be a nurse (lots of vaccinations in order to work in the hospital).

Today there was anxiety and flashbacks. It was murky. But oddly positive, too. Appealing to me in some way. I studied so hard for the pathology test, but the unexpected flashbacks weren't helping me retain my material. It's hard to describe this relationship I have with that hospital, where I'll soon (January) be doing clinicals in the wards with the nurses and doctors. In one way, that hospital is a magical place, a place where I changed, emotionally and physically, and where I survived, when death was a real possibility. It brings up all kinds of feelings for me, some challenging and some positive. I am drawn to being there, to hopefully help others who are in similar position to where I was 16 years ago. It's not going to be easy, though, I know this.

My scar still hurts often, and I might be having some kidney problems. My upper leg and half of my belly area are forever numb. I still deal with PTSD, although recently not as much, thank G-d. There are daily reminders for me of the NF. They will never go away. I hope that physically I can do the nursing that I want to do. In some ways, I wish I could train in a different hospital, clean slate. In other ways, Soroka is where my tikun lies, and I am relieved and excited that I am on track to meet it face to face. Being there today was good. I got a great parking space. And the test went well. :)

The wake of insomnia in 5780

Some of you look for updates, and I think they are getting fewer and farther between. I think that is overall a good thing, that I don't have huge medical issues to write about, or lots of hard feelings to get out. Truth be told, I feel so much like an empty slate these days that I'm not sure what feelings I have, and whether or not I have to get them out. It's so un-me-like.

One thing I can tell you is that since I went off my sleeping medicine (two weeks ago when I returned from New York) I've had two weeks of insomnia. True, up-all-night-listening-to-podcasts-and-audio-books insomnia. I also did a lot of rummaging through my medicine drawer to find cocktails that would put me to sleep. That is a path I've been down before, and it doesn't lead to anywhere good. Last time I let the insomnia go on for two months (when I had the PTSD relapse last year) and wound up in the psych hospital. I was seeing the writing on the walls here, and was wise enough to talk to my doctors about it. My family doctor was even generous enough to get onto messenger with me at 1am last week and "talk" me through what was going on. (Thank you, E!!)

It really was up to my shrink, though, because she is the one who directed me to go off my sleeping medicine. She felt it was too heavy for me (she replaced it with something that didn't work for me). That's why I went off it and stayed off it, even though I wasn't sleeping.

Damn I wish my body could sleep without medicines. It just seems to not be able to, no matter what I try. But two straight weeks of insomnia (and a small traffic accident in there which gave my PTSD a party for a few days) is nothing to play around with. When I spoke to my shrink finally (not on Messenger at 1am), she said to of course go back onto my sleep medicine, and come in to see her so we can discuss options. Oh, OK, so it wasn't written in stone. That night I took a half pill, and slept fitfully, but slept nonetheless. A full pill makes me too foggy the next day. It may not be the best medicine for me, but I'll discuss that more with my shrink when I see her. But why can't my body sleep without medicine? I've been in this scenario before, it just won't sleep. Not since I had NF and started with the sleeping pills because of the PTSD. Twelve years of sleeping pills, and no memory at all of being able to sleep without medicine. It is what it is. I hope to get the sleeping back on track soon.

Well, with the first Shabbat of the Jewish year behind us and Yom Kippur ahead, I'd like to wish everyone a *healthy* and loving new year! I want to thank each of you for your support here on the blog and off. It's the support that I feel from you guys, the readers, that keeps me going during the hardest times. May we only know true light. The cracks in our souls (our imperfections) is where the light can seep in and heal us. So yeah, may we all know true light and give it freely. Onward to year 5780!

Life is good, healing is miraculous.

I won't set off metal detectors anymore! Almost all my staples are out!

Yesterday I got amazing news from my surgeon... my healing is way ahead of schedule, and I can go home after my appointment next week!! We were originally told we'd need at least 30 days from surgery to stay put, and only then would we re-evaluate how the healing is going to see when I can get on a plane and return home. Well, We haven't even come close to 30 days, and he is so pleased that he said if I needed to I could go home now (!), but ideally he'd like to see me next week before I go. So yesterday the medical assistant took out almost all of my hundred+ staples. She left about 6 or 7 in still, just in the area where there is the most tension; where he worked most to cover up gapey with muscle and skin. That, unsurprisingly, is the part that hurts me the most from everything he did. But it will get better, I know and believe that now. The recovery has been tremendous. What a total free gift from Hashem. Proper healing, ahead of schedule. I could never have guessed that this would be the case.

me and my surgeon, Dr. Margiotta, and his physician's assistant Lauren,
who has been so very helpful throughout this whole time.

And you know what? I have had no PTSD whatsoever this whole time. I mean, gapey was messed with big time, and I had no PTSD. I think that's because I had such a great preparation for six months beforehand, at the psych hospital and day program that was helping me heal my PTSD. I think it all played a factor in my amazing healing.

So we are terrifically grateful to be going back home in about a week and a half. We'll be there for a week before Dov's induction into the army, which at first we considered the possibility that we might miss the whole thing if healing wasn't going well. I have so much gratitude it's unbelievable, really. I miss home so much.

Having said that, we have done some very meaningful things while we've been here. You'd be surprised what you can accomplish even being in a wheelchair. (I can't walk more than 5 or 10 mins max at this point, and my doctor said that is a lot and don't push it). Robert has wheeled me all over this city! We went to the 9/11 memorial museum which was very poignant. It had videos of survivors and first responders telling their stories, plus many artifacts and personal tributes to individual people. From there we went to "Ground Zero", where the world trade center towers used to be, and we saw the "Freedom tower" as well. Came home exhausted from all that!

On another day we went to a local museum here in the Lower East side, talking about how this one particular community center assisted with childbirth, and general the needs of the poor and ill immigrants living in the squalid conditions of this area. It was done so well that by the end I wanted to leave a donation for the place! It still operates as a community center for arts, soup kitchen, and general reaching out to needy community members.

Then came yesterday... the day I got all (most of) the metal armor taken out of my abdomen! Definitely a landmark day for more reasons than that; I finally, for the first time in my life, went to the top of the Empire State building! Yes, I grew up in New York, and never went there. (I've never been to the statue of liberty either, but that will be for another time.) It was wonderfully exciting, **but** unfortunately a rainy day. There were no lines, though, so at least that! I got some great pictures from up there in the clouds, but one bad thing happened... taking pictures in the rain broke the screen of my phone. I'm so, so forlorn about that. I just basically lost communication with the world, you know? We are so connected to those phones! Good thing I have this blog and my laptop! :)

So, after buying some obligatory Empire State building souvenirs, we went out into the rain (totally unprepared, without umbrellas etc) and on the way back to the ferry we decided to stop into the hospital where my surgery was because we had left some personal medicine there. It took over an hour to get people to search for us where my meds could have gone to, and in the end they were nowhere. I was cold (air conditioning after being out in the rain) , tired, and in pain (remember, staples had just gotten taken out earlier that day), and it was getting really late in the evening. I was getting very cranky. Then we went to go to the ferry to get back to the Lower East Side where we've been staying, and it left the dock without even opening the dock for people to board!!! And there we were in the rain, getting quite soaked to the bone. We then took a cab back home. I was wet, cold and cranky when we got into the apartment with our friends. Immediately, though, they cheered us up! It was wonderful! They were so happy to hear our good doctor news, they said some Psams (tehillim) to praise G-d, and gave me a blanket for around my shoulders, and then a cup of mint tea appeared in my hand. Ahhhhhhh, how quickly moods can change, thank G-d!

So it turns out that our remaining plans are that on Tuesday of next week we are transferring to my dear friend Devorah in New Jersey (we grew up together). We'll be there for the week (with a ride back into Manhattan for my Thursday appointment for the remainder of my staples hopefully), and then take off for home around the 23rd or 24th. We haven't rearranged our plane tickets yet. That's for after Shabbat. I miss my kids and my home so much, I can't *wait* to get home!! Surgery really makes one want to be home. And the apartment shuffle, although it worked out, has been trying in many ways. But the end is in sight! As a gift for our gracious hosts, we have shopped and prepared all of the Shabbat food for them and us together. The lady of the household went to the botanical gardens as a getaway. Yay!

OK, getting ready for Shabbat now, so everyone have a wonderful Shabbat Shalom!

Long, long time ago.... (hat tip to Don McLean)

Honestly I don't know how to write about what I am going through. It's all very private, not for the un-leashed nature of this blog, or of the internet. And I've written about some pretty deep down, deeply private things. But this, this work I am doing on the abuse from childhood? It's deeper than deeply private.

I can talk about how things have been going with it.
I am in this program at the psych hospital every day, and have two different psychologists (well, one psychiatrist, and one social worker). Recently I just cry. All. Day.
Recently I've been suicidal. But I tell them, and they get it... and take care of me. They suggested re-hospitalization so I stay safe, but I know in my heart of hearts I won't do it. I can't leave four kids with that traumatic legacy. It's just not in me. I look at my kids' pictures on my phone when I start to really make plans. But yes, things feel *that* impossible to get through.
It's the flashbacks that are just not stopping.... I get to re-see this stuff from my childhood All The Time. Sometimes I see new scenarios, ones that I wasn't aware happened, but apparently did.
When you see it again, often times you get to feel it again, on some level, as well. Nausea, hard to breathe, all of it. (that's in my case, not everyone feels that)

Meanwhile, it is getting harder and harder for me to share what is going on with me in the therapy groups, and in general. There are lots of people in the group (usually between 15-20 any given day), and I find it daunting to speak from my heart in such a large group. And there are a few people who I don't feel are "safe", that makes a difference, too.

I like the art therapy we have, and I like the yoga, and music therapy. The music therapy guy is trying to get me to relate to my horn again, but I'm not ready. I don't know if I'll ever be. There still isn't a day that goes by that I don't miss playing, though. Tremendously.

I haven't been so successful with going to the gym... if I get there once a week that's a good week. But I aim for more. Tai Chi is also mainly on hold. I just can't get myself and my strength together to do anything productive. It's *so* hard what I am doing each day, it's all I can do.

The other night Robert & I got "away" for a night in a lent apartment on the sea in Rishon LeTzion. I saw an ad put out by the DJ's who we used for Azriels's Bar Mitzvah, as well as for Shifra's Bat Mitzvah, and they said the first three people to write to him about it will get it for free for a night. So, we went! We had a lovely dinner right on the beach. It was delicious steaks, salads, grilled vegetables, and the ocean waves right in front of us and blankets over us. It was really lovely!

The night was lovely (although we both fell asleep watching a movie- it was a boring one!)
The next day we spent some time bowling, but it wasn't good for me. We decided then to go to the  the beach, and we stayed there a long time. It was cool, breezy, and lovely. I have a beautiful shell collection from that day (and the other day when I went myself) and I hope to make a beautiful project with them all at the day center.

Then we went to lunch. Sushi. :)
But that is where the smiley faces stopped.
I went to wash in the bathroom, and for no reason I am aware of, I had a flashback, a big one. Totally freaked me out.
I got back to our table and I couldn't eat more. We wrapped up our meal and headed out to come home again. I was pretty disassociated, and very very upset.

I want this to end. I want the visions, the flashbacks to end. I never asked for any of this to begin with. We all have to live with that which we never asked for, don't we.

There is no date on this picture, but I think it was before the abuse started, but I'm not sure.
I certainly don't look happy, but there could be a million reasons for that.

When your hero has to go to jail

In high school I had a teacher who was someone very important and special for me. I often didn't feel emotional support from my home, and this teacher somehow was able to fill the vacancy for that emotional support I lacked. Yes, I took his classes (physics), but much more than that, I sought him out after school hours and talked many things out with him. He was always there for me, honestly.

After high school was over, I kept in close touch with him. I graduated in 1986, and to this day I am still in touch with him. While he was still living on Long Island, each time I went there to visit my family, I'd always make a point to call him and go out for dinner or something, to catch up face to face. There were always emails in the interim. He was one of my heroes, for sure.

The other day, I got a Whatsapp message from my brother. He received it from a friend of his who went to our high school. It was about this teacher. It was a short article, with my teacher's mug shot, saying he has been charged with nine counts of child sex crime charges.

I gasped loudly
I screamed "noooooooooo!!!!"
I clicked on it and read the article
I fell into the couch and cried.
And cried and cried and cried.

Here I am, going through this life-shakingly difficult path in therapy about my own skeletons in my closet, from my childhood sexual abuse, and THIS?!?!!?! One of my heroes, to this very day, brought up on charges of child sex crimes? My world shattered a little bit more that night. I was shattered. I tried to imagine him in this light, and it didn't compute. I couldn't let it be real, but it was there in my face, as real as....life. Maybe he was framed, I thought?

I could barely get myself out of the chair. I could barely catch my breath from crying. The kids were home with me, Robert was at work. I vaguely explained what I was crying about, but the kids didn't know him. They gave me hugs. My kids don't know what I myself am going through at the day center at the psych hospital these days. They know I am getting treated for PTSD, but they think it's from my hospital traumas and having had NF. We are letting them think that. I don't want this seedy underworld stuff in their minds. Not in relation to their mother, anyway.
(and no, they don't read my blog, even though I told them they can)

That night I was plagued with flashbacks from my own young life, it's like a film loop once they get started, I find it almost impossible to stop them. The medicinal Cannabis helps with that. So I got pretty stoned that night. And I took maybe one or two more pills than the prescription directed, so I could get to sleep. When my PTSD is up, as we well know, I don't sleep. As it was, with all the pot and extra meds, I still didn't sleep much that night, I listened to an audio book all night. That is one of my ways to stop the loop of flashbacks. My alarm did wake me up though, so at some point I did fall asleep.

Immediately in the morning, I remembered about my teacher, and the awful feelings.
When I got to the day program, I shared in group therapy what had happened. I looked like I'd been through hell when I showed up (with puffy eyes and dark circles under them), so my group was waiting for me to share what it's about. I briefly said what happened, and I said "why do good people do such bad things?"

It's because it hit me at this very vulnerable time in my life that it hit so hard. I know that our heroes are just people, and can fall just like anyone can. But, being that the nature of the article about my teacher was so vague, I didn't know if he hurt children, or what was involved.

I decided that evening that I had to call him. I had to know what he did. I had to hear it from his voice. And, I didn't know if email was safe to write anymore, being that the FBI probably has his hard drive. I also worried a bit for myself, being that I had just written him emails from when I was in the psych hospital, and telling him why. I was slightly worried that since I didn't mention the name of the perpetrator in my youth, the FBI would read my letter and want to round up another pedophile along the way. Was I ready to press charges on him? No, I am not ready, not strong enough yet. It's not a goal I have. What if he would deny everything? I'm not strong enough for that, and I'm not sure about if there were witnesses or not. But that's off the subject (kind of)...

I called my teacher that night. He was shocked to hear my voice at the other end of the phone, almost as shocked as I was to know that he answered, that he was indeed at home, not in jail (yet). He asked me if I'm out of the hospital yet, how are things.... I skipped right to the point. No small talk.

me: "I saw the article about you; my brother sent it to me, he somehow got it from a different friend"
him: "Wow, all the way to Israel people are seeing that article."
me: "I need to know what you did. I need to know exactly what you did and what the charges are"
him: yes, I can understand that, being in the situation you yourself are in, trying to heal the fallout from childhood sexual abuse"
me: "so?"
him: "you deserve the truth Sarah. I've always been truthful with you".
me: "that's certainly the impression I was under, but I don't know what to think now"
him: "I never touched or hurt any children"
me: "go on"
him: "I have a problem, I am in therapy for it, but the police caught up with the problem before I had enough therapy to stop it"
him: "I look at child pornography. There was some sort of flag embedded in an image and the FBI caught up with me by tracing it back to my computer"
him: "I know that the pictures are child exploitation, and I know I took advantage of someone else's exploitation of that child, but somehow knowing I wasn't directly hurting the child somehow made it ok in my mind." "I was wrong"
me: "what now?"
him: "awaiting sentencing, I think. There are people who do real rapes and real awful things, and their jail time is less than what mine is probably going to be"
me: "I guess. It's all bad though." I think I said "how could you?" Or maybe I didn't say that but I wanted to.
him: "Sarah, I never hurt any child, ever"
me: "I believe you".

We went on to talk a bit about how my kids are doing, how his kids are doing (he's divorced), life's ups and downs. It was a pretty short call, maybe 15 minutes, half hour, I don't know.

After I got off the phone with him I had another wave of tears... for my fallen hero.
When my therapist a few months ago asked me "Sarah, who supported you?" I said this teacher. He was my support system in those tumultuous years. When I told this teacher of that conversation with my therapist, and thanked him for being "my person" during those hard high school years, he wrote back and said of himself that he was just a bandaid for me. But he was a lot more than that. He was a stability of support and acceptance that I craved, not getting it from my home. I got support in my home when it came to my music, some of the time. That I was clearly successful in, so I got acceptance and approval for that from my parents. But little else that I did in my life amounted to anything positive from them.

Anyway, that was then, this is now. I could have never imagined I'd be in this position at 50 years old; finally dealing with my demons from so long ago. You know what? It's hard to go to "work" (the day program) and battle your demons every day. I'm exhausted emotionally and physically every afternoon. I cry every day. I have to push flashbacks and "that space" out of my head when my kids are home. It's not simple in the slightest. I have been recommended to another program in the psych hospital for parents who are dealing with emotional/mental illness while living with their children. I tell you, there are so many programs in this hospital, I am incredibly impressed. I never knew all this was available. And it's all free, thanks to socialized medicine.

I am still working the program that the Rav who I am learning from has on-line for his students. It helps me so much to connect with G-d and live in that positive space more. And it fills a void for me-- it's actually exactly what I need at this time in my life.
And I am still going to the gym semi-regularly to work out and get fit. It's hard when I'm in a sad/heavy frame of mind, but sometimes I give myself a break, and don't go, and sometimes I push through and go. And I started up Tai Chi again, thankfully.

I'm reading a book now called "Close to the Bone", life-threatening illness as a soul journey.
It's very different than my book; much more philosophical, and I'm enjoying it. (thanks, MM!). I will end with a very appropriate quote from the beginning of the book, page 10:

A life threatening illness brings to end a phase of life, as it may to life itself. A life threatening illness has the impact of a stone hitting the still surface of a lake, sending concentric rings of disturbance out, as feelings, thoughts, and reactions radiate out from this center. It impacts relationships, it stirs the depths of others, it potentially brings the patient and those who are affected "close to the bone" into a proximity of the soul. Soul questions arise about the meaning of life when the mind is ill or the body is ailing. Healing and recovery may depend as much or more upon a deepening of relationships and connection to one's own soul and spiritual life, as on medical or psychiatric expertise. 

(Jean Shinoda Bolen, M.D., author of "Close to the Bone")

Update from the hospital to heal the soul

Today is my 13th day here in the psych hospital.

I am envious of all the people who can just lie down at a normal time of the evening, and maybe read a page or two of something, and drift off to sleep. Sleep is an integral part of life... without it, we get unraveled.

I got unraveled.

During the waking hours, I felt I could deal with the PTSD relapse. But the less sleep I got, the less hold I had on day-to-day life. From up-close, though, I didn't really notice. I only noticed that here's yet another night I can't sleep. Or if I did sleep, I would wake up in a screaming nightmare. Then after that, I'd be up for the rest of the night.

I got here after taking too many medicines, in desperation to sleep. "Accidental overdose". If I look back on texts I had with our counselor, I can see the pattern happening. But in the day-to-day, I didn't take too much notice of how things were getting out of control.

This PTSD is very complicated... it's been diagnosed as complex PTSD (CPTSD). It comes from more than one factor in my life's history. I won't get into details. but this "trigger" that happened about two months ago reaches far back into my childhood, it's not about the adult stuff, not the hospital/NF stuff.

My sleeping now, 13 days after intake, is still not balanced. I'm in a withdrawal process, and because of that I'm dealing more with my restless leg syndrome, also. It always appears strongly during a drug withdrawal. It's very hard to withdraw from the family of Benzodiazepines- the sleeping medicine I was taking for 11 years, as well as the Clonex which I'd been very liberally taking in the recent months. It's in the Valium family, and has hooks in a part of the brain that does not let go very easily. I've been under the impression that it's nearly impossible to withdraw from those medicines. But, here I am, doing it. No choice. There are still bumps along the road. On Shabbat I had a **super delicious** afternoon nap, not induced by any medication. That was phenomenal, in my opinion. But it came unfortunately at the expense of night time sleeping Saturday night. I took what the nurses let me have, but I felt I really needed a Clonex to get to sleep. No Clonex, I'm weaning from that. So, I was up all night. I listened to some Torah lessons, and then most of the night was my audio book. Thank G-d for audio books when it comes to insomnia.

My father (Z"L) used to say the best part about insomnia is the next night... you are so exhausted from being awake two days straight that you sleep well the next night. Well, until now that has been true for me. But not now. Last night, Sunday night, was supposed to be the one where I sleep well. Nope. Again, up most of the night. It's the PTSD, it's the weaning, it's the whole picture. At about 2am, the nurse felt so bad for me (I was crying) that she gave me something (that was OK'd by the doctor on call) that wasn't part of my usual regimen. That got me to sleep. But it can't be regular. So, we are still figuring this out. I am again tired tonight, but that has no bearing on whether or not I'll sleep.

What I hope for when I get out of here is a predictable, reliable sleeping schedule, and therapists to help me slog through the CPTSD. And the courage to do it. I closed that carton a long time ago, never really dealt with it. This relapse blew the top off the carton, and now I have to deal with it. I am praying this place will set me up with the right practitioners for me to work through it, so I will no longer be carrying that carton around with me anymore.

Today I also started dealing with some other medical issues I have to deal with. I can make one or two phone calls a day for other things.

My two youngest kids came to visit me today, it was so, so welcome and good for my heart. Also three friends came to visit today, indeed a blessed day.

Signing off from the hospital which heals the soul.

Sarah Rachel Bat Tova

Finding a new balance

I think that life, post NF, for me, will always need a deeper level of quiet/down time than it did before. I know it's sad, but I can't really listen to music at all anymore, except specifically in a gym, to *my*  music in headphones, if I am working out (which I just started back to do a few days ago!!). It's partially the PTSD- ever since then, I have needed a quiet as possible environment. Now, since I've been mourning my parents for more than two years (they died a year and four months apart), the Jewish laws and rituals of mourning dictate no live music, or listening to music for enjoyment at all. I am OK with that. I have missed some nice concerts I wish I could have gone to, but in general, the quiet is good for me. At Azriel's BarMitzvah we had a DJ (no live music), and when I asked my rabbi about if I can dance at the BarMitzvah, the answer was no, but I could be there. So, I didn't dance (but I wanted to).

Our counselor, on a phone appointment with me the other day, asked how much quiet time I think I need... a few hours a week? A day? A week? I answered I felt like I needed a day per week. But I don't naturally take that time for myself. I usually have to have my body force me into it... which is what is happening today.

Yesterday was Yom Kippur, the holiest day of the year for us Jews. It was a thousand times different than last Yom Kippur, thank G-d! Last year I was in horrible abdominal pain, and didn't leave my bed all day. I did fast (25 hour fast is mandatory for Yom Kippur), but I probably shouldn't have-- I was *sooo* sick by the end of that day. This year, totally different! I was in synagogue almost the whole time, and my fast went pretty well, no big issues. I stood almost all day with the prayers, as is customary, and only near the end of the day did I start to get into some pain. I keep saying that the pain shots got me out of pain about 85%.... but that 15% actually isn't nothing. After a while on my feet, the abdominal pain ramps up.

Then, while already in pajamas ready for going to bed early last night, I got a call from my good friend who's daughter just gave birth a few weeks ago. Her daughter had been having some problems breast feeding, and I have been helping her out when I can. I've spent a few different sessions (2-3 hours each) with her working on the problems. So when her mother called me desperate to help her daughter last night, even though I was exhausted from the fast, I got re-dressed and went over to her. I wound up being with her until about 2am. There were many many issues to sort out... getting her a breast pump from a friend, and since that was on American power, I went to another friend to borrow a power converter, coming back to sterilize the pump parts and take care of the hurting new mommy with a budding breast infection and fever. Not simple. I definitely burned the candle at both ends, but when helping new moms is involved, I have a VERY hard time with boundaries. It's part of why I'm not working. I feel my horn playing, although it satisfies a different part of me totally, is possibly more doable, if I can put boundaries on how much I do on a given day/week. I tend to overdo things.... have you noticed that trait in me over the years?

So, today, I'm down for the count. Been in bed all day, although we have a dinner engagement with family soon which I am looking forward to.

Not only down for the count because I emotionally need it, but my body has been putting up red flags for a week now that I have been trying to ignore. My lymph nodes in my left armpit feel like a golf ball and are painful, I have a little infection on my skin graft (AGAIN!!), and I have to report here a month-or-maybe-more long pain that is getting me worried that something sinister is going on in my left leg again. I can't lie on my left side in bed- my upper thigh- femur actually- hurts. That's where there is all the nerve damage from the NF, but it's a new-ish pain, and not going away. I am slightly worried about an infection in the bone, like osteomyelitis, or something else I don't yet know about. I've lost some range of movement in that leg, too, recently. I decided to tell my doctor all these things today (spending the day in bed can make me come clear about what my body's messages are saying), and I'll start trying to figure out what is going on. Maybe it's just the nerve damage in that leg acting up.

I really want to ignore it all and be not worried. I have that "infection ghost" thing in me, and it's like having a shadow behind you which is 10 times your size and moving like a monster, and you're trying to ignore him all the time. I am so paranoid about blowing things out of proportion that I want to ignore my body's messages. I believe I am inherently healthy, and getting stronger since the pain shots (which, I may only have one more month of enjoying the effects.... we are working on finding an anesthesiologist who can do them here...). Anyway, I put the Manuka honey on the little skin graft infection today, and I'll re-apply it tomorrow (and so on), and hope it'll go away.

So, by hook or by crook, my body takes my quiet day. Ideally I'd be planning it into the week, but when I'm feeling good I don't necessarily need it. As I wrote that, I know it's BS. I always need it. I don't always get it, though. Sometimes migraines force me to take a day, but it's not a *good* day, it's forced by pain, and suffering in a dark room with nobody talking to me. I'm hoping that being 100% gluten free, dairy free and night-shade vegetable free will help the migraine situation. The jury is still out. I've had some doozies recently.

But this passed week I went to the gym for the first time in well over a year, I went grocery shopping, also first time in a year, cooked up a storm for dinners, and cleaned, did laundry, and was basically *in life*. That is a miracle. And I'm grateful.

(recently I re-posted my NF story on Facebook, I'll repost here, too. There are enough people at this point who don't know the whole background, this explains it well. It's from the NFW website, where there are many, many other people's NF stories, and an opportunity to donate to our foundation.
https://tim-hayden-7rt5.squarespace.com/klein-sarah-1/)

Post Traumatic Stress Disease... the gift that keeps on giving

Recently I've joined a few on-line support groups for people who survived NF. Sometimes I forget that there are going to be things specific to the fact of having been through this particular nasty disease and it's ramifications. One such ramification that nearly everyone relates to and talks about is the aspect of PTSD afterward.

This is what is going on with me...
I'm having a recurrence of the PTSD. It took me a long time to identify it, and there are other things in the mixture that are affecting what is happening with me these days, but that is a big factor. I believe it is stemming from being with my friend Sabrina while she was dying. There are many gory details that I don't need to, or want to get into here, but what I thought I could handle went into hiding in my subconscious for a few months and has been eating away at my emotional state, my sleeping, and at this point just about every aspect of my living. My PTSD was so bad after I had NF, a year later (2008) I was hospitalized for three weeks in the psychiatric hospital here in Be'er Sheva.

PTSD is insidious. You don't know that it can be responsible for depression and sleep problems, among other things. My depression has been getting so bad lately, I cannot enjoy anything. I mean, I can enjoy things on a surface level, really enjoy being with friends and in social situations, but darkness lurks for me when I try to go to sleep. I thought it was my sleeping pills not working anymore, but now I realize it is the PTSD. I haven't had it this bad for a long time. And, it took a few months, since Sabrina passed away, to manifest so strongly so that I could clearly see it. Same thing happened after I had NF; at first I even went back to work with birthing couples, and even playing horn in the orchestra for a few months. Then, at about the six month point of after NF (physical wounds still not even healed completely) I had a break down of sorts, and checked myself into the psychiatric hospital at my psychiatrist's advice. That was my introduction to psychotropic medicines and sleeping pills.

I had no idea that my PTSD could ever get that strong again.

Well, it can.

Also, problematic here is the fact that my medicines have changed drastically over the past few years, and I haven't had any psychiatrist at all in my life going over it, giving input. I've kind of used my neurologist for that because of needing to deal with the migraine problem, but one hand did not speak to the other. I went off the Fentanyl, went off Lamictal (which was specifically for PTSD), and am now on a large dose of Depilept for the migraines, and my GP raised my Cymbalta. All of this with no input from a psychiatrist. So, it's time for that.

I plan to go back to the one who I last saw at least three or four years ago, because she is the last one who knew my case. Robert tried to call her this morning, but she wasn't in today. It is urgent. We will try to get in to her tomorrow. If not, maybe they can give me someone else. She specializes in PTSD, though. We are even thinking about the possibility of another hospitalization, but are very much hoping on getting a hold of this as out-patient. The depression and sorrow are sucking away my life, I can no longer cover it up. I'll get help.

I know that Hashem (God) is always there for me, stretching His hand out to catch me when I am falling. The challenge is to stretch mine out to grab on and feel my will and life-force again. It's in me, but quite buried. Buried under hospital nightmares of the past... which are still quite present for me.

Brain MRI

Wow, Robert and I are under tremendous pressure these days. We are leaving for a month-long trip to the states, and things are wild and wooly. Neither of us are keeping it together so well, but it's gonna be OK. It has to be, right? We've done harder things. But as my dear friend Ken said earlier today... life is messy.

One of the zillion things I had to worry about this week was doing the brain MRI, and that was this morning. What a thing.

Oh, but I didn't write about how my hip/leg MRI came out from last week... I have the results from that. All-n-all, seems like things are OK around my hip joints. The MRI noted the lymph edema present, which I already know about and try to deal with. Problem with that is that I have to wear the pressure garment more, but it gives my skin grafts and the skin around it a heat rash in the summer months. So that makes me not wear it for a few days until the heat rash gets better, then I have lymph edema swelling again, and round-and-round we go.

There was one other small finding, but I'm completely not worried about it. It's some sort of cyst near the surgical area of my recent right leg surgery (from October).

I'll go back to my orthopedic oncologist after our trip to the states and clarify anything more. I am pretty pleased with the results, though, thank Gd. *No PVNS*. That is what we were praying for, No imminent surgery. Baruch Hashem.

About today's brain MRI... whoa. A whole new experience in MRI'ing. Wayyy not something I ever would want to do again. Please Gd I won't have to. All of you out there who have to do brain MRI's on any regular basis...? So sorry dude. It really is the pits.

Picture lying down in a head rest which encompasses your head until your face, then having a cage device put on your face which clips into the head holder thing. You can smell the cage thing, it is that close. OK, picturing that? Now that you are all snug and can't move your head or shoulders, imagine putting yourself, lying down on a stretcher, into a long, white tube, which is small enough that your feel your outer arms being pushed ever-so-slightly on your sides. You look around and all you see is cage on your face and white tube surrounding you. Claustrophobic? Problem.

Now, with all that happening, the MRI noises start. This time, it's all around your head! (I am used to the multitude of MRI's I've had for my pelvic area, hips, etc. That noise was further away from me, and my head always got to be out of the machine.) Then the machine starts up...LOUD.... zzzing...zing....bang-bang-bang for many minutes, more zingzingzing for another few minutes, clip-clip-clip-clip for another unbearable amount of time, and repeat all those sounds, randomly, for like 15 minutes. Then, you get rolled out of the white tube on your stretcher, and get shot up with contrast dye. Then you get rolled back in and another 10 minutes or so of the chainsaw sounds and jackhammering at your head, but this time with a strange burning sensation in your body from the contrast dye.

Oh, and the bit about the contrast dye? Well, today I had no veins for the first time in my life. The doctor couldn't get an iv into me, and he poked at my arms with needles 5 or 6 times, on both arms, before he gave up. He announced my veins "too scarred". I showed him the vein the other guy used last week for my other MRI (it was still a tiny bit bruised), and he tried it, but the needle bent... too much scar tissue. I've had a lot of iv's recently, in the past few months, with all the visits to the hospital for the migraines. That's, of course, not to mention nine years of manymanymany iv's and blood draws and hospitalizations. I never thought I'd be the one with no veins, though. My friend, who is a cancer patient and on chemo for the second time in as many years, *she* has no veins. Chemo does that. Well, maybe the doctor today just didn't have the "knack" of getting an iv going. I look like a junkie now, though. So how did they get the contrast dye into me? It was lovely, let me tell you. They rolled me out of the white tube, head cage still buckled tight, pulled an arm out, and fiddled again with my veins. "Don't move"... yah, gotcha doc...
They somehow got the dye in (I couldn't see how because my head was locked down), and rolled me on my stretcher back into the tube for more amplified jackhammering and zinging. This time with the weird warming sensation whizzing around my body from the dye.

I used my powers of disassociation as much as possible. I was organizing our trip in my head, making mental lists of calls and errands, thinking about the beaches we'll go to, worrying about my mother, worrying about my father, organizing life. Mainly trying not to get freaked by my encroaching PTSD from the loud noises and feelings of helplessness. I hate loud noises.

One thing happened which I am just "letting go" of, because this is all out of my hands, you know? I'm sure it was just some technical glitch or something, but in all my experience of MRI's, this never happened....

I was in the tube, and the noises were happening for about five minutes, then machine just stopped. OK, that does happen a lot, they do their techie thing. But this was a really long time, inordinately long, that I was just lying there, head in the cage, with no pictures being taken. Then I hear the outer door, the technician's room door open. I hear more footsteps into that room. Door closes. I am in the tube thinking "seems like another person just came in". There is a little rear-view mirror thing attached to the head cage thing, where I could see an angle into the technician's place. I think it is there to help the claustrophobic people to see out of the tube. So indeed, I noticed there were three people there instead of just two. They were all looking at the computer screen. Was a new guy brought in to see something unusual? The worry takes root in my harnessed down little head. Honestly it felt like forever, but it was probably just 3 or 4 minutes, then dude number three walks out, and the MRI starts up again. What was *that* about?

At the end, I was happy not to hear what my little brain feared: "you have an aneurysm, you need immediate surgery". Read again- I did *not* hear that from the technicians. But my mind went there. Tricky little things, these minds we have, even when buckled down in a cage. *Especially* when buckled down in a cage.

At the end of the whole thing, I asked the technician if that big break was anything to worry about. They said that they are not allowed to say anything to the patient about the test. They are just the technicians, I need to wait for my evaluation to be ready in 7-10 days. I then said I am flying overseas in a few days, and I asked if there is anything I need to know about. Again, the mantra: you will get your results in 7-10 days. "Have a good trip". Okee Dokee, techie man, thanks! I'll go do that!

And now my friends, I am exhausted. I have so much more to document, but not enough time in the day. I honestly don't know if I will find any more time before we leave on Sunday morning. I stole this time from myself; it could have been my resting time. But I needed to write.

And with all this? Just the tip of the iceberg. It's been a crazy time period. I have let important people down because there is just too much on my mind and heart. I hope those people really forgive me.

My mom is not doing well, over the last few weeks there has been a drastic deterioration. She's not the same mom I left last summer. She isn't communicating much anymore. Sleeps a lot. Very sad for my kids that they haven't seen her in 2 and 1/2 years (at least that's true for the boys. Shifra and I were there last summer.)

What happens if I get a mega migraine in New York? Or any other destination? I pray. I wait it out. Maybe I go to the local ER if I just can't take the pain any more. It's out of my hands. I'll have the evaluation of my MRI from today in 7-10 days. I have access to it on-line.
The rest of it, it's out of my hands.

We did an awesome thing, though... we rented a house on a lake in Connecticut. Just for the 6 of us Kleins. You see, during the year, my older boys learn out of town in Yeshivas, we only are together Shabbats, and not even every Shabbat, at that. We have not spent quiet time together as a family in a long, long time. This house we are renting is right on a lake, and there are canoes and boats for us to freely use. It's called chill time for the Kleins. I am so looking forward to that, you can't imagine. I NEED it desperately. I want to coast on the gentle waves in a canoe, and just listen. Heaven. Quiet, clear, water. It is what is saving my sanity on this trip. I pray for that. I live for the water. I live for Torah, and I live for Hashem. And my family. Especially my family.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ps- I had to totally go off the medicine that my neurologist gave me which was meant to be protection against the migraines. It gave me awful tremors in my hands, shortness of breath, weight gain, and other undesireable effects. I now have no medicine at all for the migraines. Hashem, please protect me and hold me in Your hands.

Sweet potato salad, with a side of relapse

It took a long time before my dear friend Miriam and I could find a time to have a "date" together. Life is so busy, it's a rare opportunity when it comes around.

We went to a cafe in a mall. It was *packed*... something we didn't expect. It was the day before the fast of Esther (two days before Purim), and all the high school kids were dressed up in costumes, as is the custom for Purim, and that mall was apparently the place to be seen. And what a scene it was... cupids, zombies (complete with fake blood), pirates, prisoners, an eerie fellow wearing a mask of "The Scream" (by Edvard Munch), Goldilocks, and yes, even street walkers (how do their mothers let them out of the house like that??!!). I'm telling you, it was strange, mostly because, even though Miriam and I both are raising teenagers, we didn't know that this is the thing to do. Our kids didn't do the "hang out in costume at the mall" thing. It caught us off-guard. And it was so *loud*! But since our time together is so limited, we decided to take a table at the cafe anyway (instead of relocating), and order our lunch. At one point I got a call from Robert, and I actually had to go into the elevator corridor so I could hear him, it was that loud.

Near the end of our meal, we suddenly see and hear costumed teens at the top of the nearby escalator running and screaming. We had no idea what was going on. I thought it was some sort of Purim prank (weird things happen all over this country around Purim, expect the unexpected). But, like an ink spill, people all over the mall were also beginning to panic and head for the exits. Rumors using the word "terrorist" could be heard, yet nobody around us knew what was going on. We obviously got up and headed for an exit as well. I instinctively reached out for Miriam's hand, I was getting a bit freaked out. Holding hands, we decided to wait for the elevator (where minutes before I was calmly talking to Robert on the phone), because everyone was crowding the escalator.

As we waited for the elevator, people were scattering all over; some panicked, some bewildered, most were worried. The absolute strangest thing? That these were also all sizes and forms of people in costumes... there were teens running around with fake blood on them, a guy dressed all in black holding a long knife/sword thing, and girl/hookers. The only word to describe it is SURREAL.
Was there a knifing? Is the terrorist running free? Is anyone hurt? Nobody knew anything.
While waiting for the elevator, we heard what, to me, sounded like a gun shot. I lived in Manhattan on the edge of Harlem in 1991, I knew what gun shots sounded like.

We were all alarmed. Well, Miriam was pretty calm. I wouldn't let go of her hand, though.

Eventually, within 10 minutes, the entire contents of the crowded mall spilled out into the parking lot. On the way out I asked the security guard if he had any information, and he also didn't.
People (teens mostly) were crying, shocked, and traumatized out there waiting around in the parking lot. And all the costumes and elaborately made-up faces.... it was like out of a Fellini movie. I, personally wondered if a terrorist with a knife was going to run out in our direction at any moment.

Miriam asked me if I'm OK. I said yeah.
A few minutes later I said "...actually, Mir? I'm not so OK".

We made our way to the car amidst the sounds sirens, police on their way. We didn't see an ambulance, so we hoped that was a good sign.

We got into my car, and I kept pressing the code pad on the dashboard with the code I was sure was right. I have driven that car for four years, I *know* the code. But in my shock, I didn't remember it. I called Robert to ask him the code. He was surprised, but I didn't want to startle him and tell him what was going on (and we still didn't really know what was going on). He told me the code, and we weaved our way past police cars to get out of the overloaded parking lot, to the exit.

As we exited, we heard two huge booms.
Me to Miriam: "did you hear that"?
Miriam: "yes. Let's not jump to conclusions..."

At home, I told Robert about it all via texting with him (he was at work), but we still didn't know what, if anything happened. There were no news reports yet. I talked about it a lot in those next hours. I told my kids what had happened, I was definitely in a state of high alert, possibly a little shock in there, too.

A while later, Robert texted me to ask if I am OK, if I felt that I am over it. I wrote "yup", with no hesitation. By that time we pretty much knew that the gun shot sound was a firecracker that someone set off in the mall (very common on Purim), and that also two teens were having some sort of an altercation, maybe a knife was pulled, maybe not. The news reports were contradictory. What was clear was that nobody was hurt, and there was no terrorist, thank Gd.

I was over it.

The next day, I started feeling that cotton-heady feeling, dizzy, and like my limbs were all heavy. Incredible fatigue. It was a fast day, but after about one in the afternoon, it was clear to me that I had to break my fast. I did so, and I had hoped it would make me feel better, but it really didn't help much.

We went to the synagogue for the night of Purim. I felt awful, physically, but I got there. It was the first time I didn't go in costume... I had no energy for that.

The next day, the big, busy day of Purim, my limbs felt like anvils. I was so weak, I felt faint just walking to and from the bathroom. I didn't leave my bedroom all day, even though there was Purim going on. That was the day I wrote my last post- the one called "I'm getting lost". I didn't get to any Purim festivities, including our traditional community feast, which I have *never* missed. It was truly sad for me, and for my family to have to separate. I just could not move. Oh, and I had a migraine come for five hours, then go, in the middle of the day, as well. It 'went' because I used some heavy medicines to take myself out of my misery.

Friday was the same. A tremendously busy day, but I couldn't do anything. I did get out of my bedroom, but again, my limbs felt heavy, and I was so weak that my joints actually hurt coming down the stairs. That *never* happens. It was so uncharacteristic. I was convinced that something big and bad was wrong.
Thankfully for us that our guests for Shabbat actually canceled, and we (Robert) had less cooking to do.

Shabbat came, and by afternoon I was feeling much better. I went out on a walk with the kids, actually, which felt awesome, like I was breathing for the first time in three days. And just like that, I was feeling normal again.

So, what is the explanation of all this?

We'll never be sure, but, on Friday I had a conversation with my wise and intuitive sister-in-law, Rivka. She already knew the story of what had happened in the mall (as did anyone else who read my Facebook update that day). She suggested that it was a relapse of the PTSD, triggered by the mall incident. Even though, intellectually, I knew that there was no terrorist attack, for a long while there it felt like it, and that is all your parasympathetic nervous system needs to "know". PTSD is like an instinct, once a person has had it, it comes back when the primitive part of the brain stem gets activated by trauma.

What strengthens this hypothesis more is that the day after my conversation with Rivka was when I started to feel the fog lift. What I know from physical responses to emotional triggers (a whole book in and of itself) is that once the person names the emotional problem that triggered the physical response, the physical response no longer has the need to be there. In my history, I have had a certain chronic back pain, and I know that it happens when a certain type of stress and trauma enters my world. When I feel it, I "tell" myself the message like this: "I know what you are, back pain, I don't need to pay attention to you. I get what is going on here, this [subject] is an issue these days". And, it always goes away within a few days. If you want to learn more about this issue of physical pain being a manifestation of emotional triggers, I highly recommend the book "Mind Over Back Pain" by Dr. John Sarno. I read it in 1990, and it changed my life.

In 2007, about six months after I had NF, is when I got hit hard with PTSD. I spent three weeks in the Be'er Sheva psychiatric hospital because of it... it was *that* bad.

So it is quite possible that what happened last week after the mall incident was a relapse of the PTSD. All the symptoms lined up, hit me over the head, and then went away.

I am constantly taken aback when I learn more about the delicate and intricate network which is me, in the aftermath of being plunged into that crazy disease, Necrotizing Fasciitis. We know a lot about the revealed complications and ramifications, which this eight-year blog discusses regularly. The psychological, more hidden repercussions, however, are much more subtle because they disguise themselves as a physical malady to be grappled with. I feel as if I have been enlightened tremendously by this episode. I hope that, if it happens again, I will be able to recognize it and talk to my body, telling it that we don't need to act out emotional triggers. We can just recognize them, and let them go. And move on into health.

Strong and struggling

Sometimes I feel that something is Really Wrong. Other times I am so energized and able-bodied that I feel I can take on the world. And, when I feel those times, I do take on as much of the world as I possibly can. I've been working-out at the gym, and basically doing everything normal. There is that word again... it's a rather judgmental word, actually, right? I mean, nobody is normal. Only to *us*, "everyone else" is normal.

But since I've gone through much more, medically speaking, than most people, when I have ongoing symptoms, I have a tiny voice in the not-so-far-recesses of my psyche that something Big may be going on. Yet, I often choose to ignore it hoping it will go away. I have seen too many doctors, had too many surgeries, gotten too many diseases, and had too many scares to go dashing off to the doctor every time things are not quite right. Some may think quite the opposite- that I'd be the one to go dashing off to the doctor with every little symptom. But I am fed-up and jaded about doctors, and their tests. I've had enough surgeries, heavy medications, pain, infections, and rare diseases in the past eight years... it'll be nine soon... and the medical tests that go with that stuff, to last someone about 12 lifetimes. I am at the point that avoiding more conversations with doctors and more tests is my goal. To that goal, I am taking many vitamins and minerals (which I never used to do- I hate taking pills), trying to keep a good, balanced diet, working-out in a very healthy way, and trying my best to keep a good attitude about life.

But I gotta get to the bottom of what is going on with me.
I don't want to. I hate going to doctors, and I hate all the tests. Have I said that before? Ive been through too much. Today, while talking to Robert about my now-daily headaches starting first thing in the morning and lasting usually throughout the day, he asked me why I haven't seen my neurologist. My answer: I don't want to. He's an awesome person and doctor, I just don't want to chase him down to get in before my June appointment. I don't want to talk about problems and medications, go through tests. I know he will see me earlier- my history with him is that he will take me and give me a full consultation if he can, just when I pop my head into his office during his office hours. He was amazing during my withdrawal from Fentanyl. I just don't want to chase. I don't want to need anything medical. I am tired of it.

I need to get off the [eight years] of sleeping meds- I think that is a major cause of the headaches. I could be wrong, though, just my own theory. One of my doctors told me that the withdrawal from this sleeping pill (in the valuim family) may be worse than the withdrawal from the high doses of Fentanyl (morphine family) I was on for five years. I am so scared to make a real plan to start weaning from the sleeping pills. I'm actually terrified of it. And there isn't much I'm terrified of. I know that the times now that I have tried to cut down a teeny bit of a pill, I can't sleep. I've tried numerous times. My body *cannot* get into a deep sleep without the sleeping pill(s). It all started eight years ago when I had post-traumatic stress disorder (PTSD) and couldn't sleep at all, and was having horrific nightmares. A well-meaning psychiatrist put me on sleeping pills. I asked if I should take one on an SOS basis, and she said "no, you take one every night. That is the only way to get your body sleeping through the night again". And thus it began....

The past week, the first thing that goes into my digestive system in the morning is... Excedrin. I wake with a headache. Before this week, Excedrin and Zomig (my migraine medicine) have been part of my almost every day. My headaches are getting intolerable and more frequent.

That, along with two months of a consistent cough and sore throat, and I know I should be doing something about my health, but I don't want to. Don't worry, though, I will.

Remind me how is it that I question myself when it comes to the fact that I am not working at my careers?

Shabbat Shalom

Memories and flashbacks

May, 2007
Huge rainstorm over Shabbat
I worried, he was planning on taking the "back roads" home.
I wanted to know he was safe, I needed my doctor.
He called Saturday night, just as he did this evening with my friend.
I was relieved he made it back safely.
I only knew I needed him.

He apologized, asked for forgiveness.
I, confused, still in the thick of it.
My children were so young... 1+1/2, 4, 6, 7+1/2.
I couldn't take care of them.

I didn't yet understand the magnitude of how my life was to change.
Yes, I forgive you.
I didn't yet understand for what, exactly.

It was confusing.

PTSD came on strong, I was lost.
Psychiatric hospitalization, 2008, three entire weeks.
medicines, coping.
I called him from that place. It was again Yom Kippur, a year gone by.
I said I didn't forgive him, I now know more about my story.

I was angry, weak, still sick.
Hospitalizations, infections, operations.
Many, many more doctors. All shocked, I was so young.
It kept coming at me, like speeding cars at night.

One operation broke me, it was just too painful. The mesh inserted under gapey.
One whole year I felt the sharp pain of that surgery, the clips attaching it, latching on to what muscle was left.
Morphine, Methadone, Fentanyl, nerve pain medicine, more and more Fentanyl.
Pain relief.
I still feel those clips in my belly. Every day, all the time. Even at this exact minute.

I still couldn't take care of my kids.
Nanny's in and out like a revolving door to my house.
One actually stole from us at the same time she was caring deeply for my children,
lying down with my baby to help him sleep.
I wanted to do that.
She stole things from us.
Caring for my baby was stolen from me.

Did I forgive him?
He called that night in the rain.
He worried about me,
I worried about him.

I developed an odd dependency.
It was unexplainable.
I didn't see him much,
didn't want to.
Not a day when by that I didn't think of him, though,
think of how messed up things got.
hated him for his arrogance.

The years went by that way,
Countless trips to the emergency room.
My husband and I had a routine by that time. We'd look at each other,
waiting in the temporary bed, saying "here we are again".
Another week lost to the hospital, stolen from my kids.
Hospitalizations, surgeries, anguish, lost careers.
Morphine, pain.

Then I learned more.
More about what really happened in those harrowing days before and during NF.
A medical detective, sorting through my file.
Slowly facts filtered down to us.
It was written up, this medical detective was angry.

Now I see him, hear about him from my friend all the time.

I am strong, off pain medicines, but usually in pain.
I am strong.
In the near future, another surgery looms.
The "virgin" right leg, never had an operation.
The left leg went through so much,
limping, crutches, scarring, favoring,
The right leg has problems now, as a result.

How long can I live without pain medicine?
Only time will tell.

Pain is in my life to stay.
Doctors are in my life to stay.
The Doctor, as fate would have it, is in my life,
to stay?
To stay.
I will grow from this.
It's called "Post Traumatic Growth".

I can do this. I am strong.
So many memories, where can I put them?
They are coming back to me fast and furious
as I go through my friend's story with her, every day, in that wing, of that hospital.

She says I "ground" her.
I massage her feet and legs,
we listen to interesting and funny podcasts,
My tension rises along with her fever, my muscles (and soul) relax when the medicine works to bring it back down,
I feel relieved when I see her rest.

Now it is she who cannot take care of her child.
I understand on such a deep level, it hurts.

There is nothing simple, or clear about these stories.
Please let me tell them,
Don't be afraid, or feel bad for me,
just be with me.

It's not about anger,
I've shed that entirely. A gift of time.
It's not even about illness.

It's about three souls intertwining.
Four souls... her five-year-old girl.
Light, wise, expressive, happy, dark.
I'm taken by her.

These souls are forever joined.
We may never understand why.

Now I have unburdened my soul,
and I can continue on being who I have chosen to be.

Thank you all, for being my people.
You ground me.

Bedside Tehillim (Psalms)

ב"ה

תהלים

From the book of Psalms 

(יב through) לח:ד

38:4-12

"There is no soundness in my flesh because of Your wrath, no peace in my bones because of my sin. For my iniquities have inundated me; like a heavy load they are burdensome beyond me. Putrid and rotted are my sores because of my folly. I am bent and bowed exceedingly, all day long in bleakness I go about. For my loins are full of a loathsome affliction and there is no soundness in my flesh. I am faint and crushed exceedingly. I roar from the groaning of my heart. My Lord, before you is all my yearning, my sighing is not concealed from you. My heart is engulfed, my strength has forsaken me; and the light of my eyes, they, too are no longer with me. My friends and companions stand aloof from my affliction, and my close ones stand at a distance.

...continuing with (38:18)...לח:יח
For I am prone to crippling pain, and my ache is always before me.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

These verses caught my eyes as I was reading the Tehillim by my friend's bedside today in the ICU of Soroka. You can see why these particular verses gave me pause. I was once in that position, and my skin was indeed dead and afflicted. My youngest child was 1, the oldest a mere 8.

There I was, sitting (or standing) beside her, looking at her, holding her hand. She, on a respirator, anesthetized, in a deep sleep. I read Tehillim (psalms), in English this time, so the meaning can sink in on a deeper level. It sure did. I felt deeply that I was beseeching God to save her from more cancer. She's younger than me, her daughter 5 years old.

Just a few short weeks back I was reciting the same tehillim for my other friend who passed away last week.

It's tremendously heavy to be in the ICU watching my friend breathe, her lungs expanding and contracting with the clicks and beeps of the respirator. I actually remember those sounds; they are embedded into deep recesses of my soul. It is all very familiar. Freaked me out a bit, but I just kept praying, saying the psalms, there by her side. I was in trauma-land, and Soroka land, and surgeon land. A very hard place for me to be, personally, but I felt I needed to be there with her. I stayed for a few hours until my Tehillim reading was finished. It took me a long time because of breaks to talk to nurses and doctors about her, and because I was really, deeply connecting with the poetic, but sometimes incomprehensible words and meanings of the text. I did what people had done at my bedside 8 years ago. It awakened my PTSD, but I am stronger now, and I can give without being sucked into the vortex. Hovering around the trauma vortex, however, is not where I want to be. I have to be careful not to fall in, to be too drawn in to her story.

Changing the channel abruptly, the rest of the day was spent at the science museum for children. With me was Azriel, his friend, my friend-in-the-hospital's five year old daughter, and the woman who is temporarily taking care of her. The kids learned, played, laughed. The older ones watched out for the little one. We talked a lot. While we were lazing on the thick, plush grass of the science museum's campus, the woman taking care of our friend's daughter texting with the surgeon, and our friend's brother overseas. Yes, it is the same surgeon. From his texts he seems confident that our friend will get through this, and her situation is not so precarious. I'm not comforted by his confidence.

Walked a lot, talked a lot, prayed a lot.

Tomorrow morning is the neurology clinic at Soroka to take care of the Cannabis paperwork, then I have decided I am going off to the beach. Alone. I need the ocean, and I need time and space to grieve losing two friends a few weeks ago, and to organize my feelings about my other friend's situation. It's been heavy, and I feel a dark cloud hanging over me wherever I turn. Being at the sunny Mediterranean ocean will give me exactly what I need. It always does.

Me & God, we meet there. We always have.