Friday, February 17, 2017

An update from hibernation

The wind and rain has been so cold, and the sun rarely warming anything during the day. I have been taking the opportunity to hibernate. I am so cold, always. I wear three layers to everyone else's one or two. I put the heater on, but it takes too long to warm the rooms. I've always been more of a summer/heat/beach person.

I'm stying right in here, thank you very much.

But you didn't come here to read about the weather in Be'er Sheva. I just don't know how to start writing. I'm going for calmness, equilibrium, and quiet spaces. Things have been possible lately. I say it that way because during the time period that Sabrina was getting sicker and passing away, things were impossible on every level. I stepped away from everything after she died... well, after my father (who had pneumonia) left after she died.... well, after Ya'akov's hernia surgery after she died.... you get my drift. No more drama. I almost couldn't bear to see the hospital any more. My soul needs calming. It's been through so, so much. So I think I am able to give it calming now. I am able to step away from, or avoid loudness, or take it in small quantities if I am up to it. Like shopping with my 14 year old girl. The stores today's girls want to go into... makes me crazy with the loud music and perfumed air. She knows I have a half-hour limit there. I'm so old. :)

I am sorry to report that I am in pain all the time... again.
That hip surgery I had October 2015? It's effects are gone. Osteo-arthritis in full bloom. Very painful, practically every step. I have been following a low-inflammation diet, taking cartilage supplements, and... it's back anyway. At the time my orthopedist said he didn't know how much time be "bought" me before needing a hip replacement, but now we know.

Thing is... hip replacement surgery? Now?
Next month I finally have my appointment with the throat/swallow guru of the country to finally [hopefully] correct my dislocated cartilage in my throat from that last surgery. I have waited six months to see this guy, my throat clicking away with each and every swallow.

Now I need to do another surgery, and intubation, and all the pain of recovery and physical therapy and no driving and and and and and??? (actually driving is already getting hard for me... I feel it creeping into my life- cutting out quality of life things because of pain. I've been here before too many times.)

I can wait, it's not an emergency, of course. The arthritis gets worse, but not that quickly. But I know I will not go on pain meds, so I don't have much to rely on as this is worsening. I just am doing less. Even playing ping-pong with Azriel kills my hip, and that's really not so strenuous. But he's so cute and loves it so much, I hate {{again}} having to say no to him because of my physical or emotional shortcomings at any given time. The kid barely ever knew me not sick.... or I should say, as strong as I was before I got sick in 2007.

Shabbat is approaching. I'm glad I got to write a bit... thanks for hanging in there with me.
Love from cold and rainy (and hail-y!!) Be'er Sheva.

Tuesday, January 31, 2017

My fight is gone

I want to scream from the hilltops: This Is Not Me!!! I am not the one who is weak, in pain, and often feeling ill. Who the hell took Sarah and left this ghost in her place? I don't want this life. I want life, but not this one.

These days I am one "how are you" away from crying. Raw.

I think Gd cries with us when we are sad

Since age 39 I lost my careers. I was an orchestral musician and a birth doula (y'all know that).

I still feel the victim of someone's mistakes. I feel that my life, as I was building it, was stolen from me. No, I have not gotten over it yet. Or maybe I did get over one stage of it, but it's back for more healing. The thing is that it happened when I was young... it's a long time to live the life of a patient rather than working at the careers I loved. I *want* to work, and can't. I'm 48 years old, reasonably with a long life ahead of me still... of this? Do you know how awful it is to be turned into a full-time patient? I never feel well, I don't know what is wrong this time. I am avoiding going to my orthopedist, avoiding doing the next round of blood tests. Should I go back to the vitamin doctor? (I am still taking a good strong regimen of vitamins) Is there a test I could do that would show us why I never feel well anymore? What would life feel like if I got some strength back?

I started back with my previous therapist, hopefully that will help some.

I don't like being this me. I walk through my days, sometimes better than other times, but, talk about mourning... first my Mom, then Sabrina, and... and now the old me. This is the hard stuff of life. Dealing with the fallout.

Someone told my yesterday that I should do "inspirational speaking". I don't feel very inspirational, though. I feel like a wash-out.

I think Sabrina's passing is working it's sadness on me. She was always my "person" who was fighting harder with her harder medical problems. Since she's gone, I feel like "what's it all really for"? Why fight so hard?

My fight is gone.

Tuesday, January 24, 2017

Mornings are the hardest

The mornings are the hardest.
I just cannot get out of bed, no matter if I've slept decent hours at night or not. It's partly due to depression, partly, well, me. This is the product of these past nine years of surgeries, illness and heavy medicines.

Can I hope that this will change?
Recently I don't hope for much of anything, to tell you the truth. I have it pretty bad.

I can still put on the happy face, though. But I know my kids feel the difference, I've been laughing less, enjoying life less, doing less for myself and them.

It is what it is.

It definitely could be partially the side effects from my migraine medicine. I take it every day, it's preventative. The good news is that it works; I haven't had a migraine in a good long stretch. Barely even a headache. The bad news, like always, is the side effects. It could be dragging me down emotionally and also making me feel so tired all the time. Those side effects are known about the medicine. At this point I do need the medicine, nothing else worked. The migraines, as we all remember, were horrific.

I kind of feel recently that my writing is useless... doesn't matter if I write or not. Goes with how I've been generally feeling about life, I guess. Useless. I know it's not true, it's just my mourning. My mother is gone, and I just watched Sabrina die. It's been a hard time.

they say that sometimes seeing a butterfly can remind you of a deceased person you loved

My physical health issues, for the most part, are much more under control than they have been since I had NF. Took a long time. The pain I deal with now is from two different places in my right hip... we don't know what is what. Endometriosis is one possibility, but un-diagnosable, and the other possibility is that my hip needs to be replaced. This is the right hip, from the surgery a year and a half ago. It's just hurting more and more every week. The success of that surgery didn't last very long, and although I need another MRI, I think it's completely arthritic, as it was at the surgery.

Tomorrow I head to Tel Aviv, to Ichilov, to my orthopedic oncologist for a follow-up for PVNS. That's the left hip... two different doctors for two different problems in two hips of the same person. I don't feel much pain with the left hip, so hopefully he'll just release me for another MRI in another year follow-up.

Skin grafts on Gapey are not happy- all dry and cracking, no matter how much I put creams on them.

I'm off to the northern beautiful city of Tzfat after my Tel Aviv doctor's appointment tomorrow. It's for my dear friend, Miriam Devora's wedding. Since I am in the year of mourning for my mother, I can only go to the ceremony part of the wedding (chuppah) and not the party, but I wouldn't miss it for the world. Robert and a few of the kids will come on Thursday for the wedding, too. Then we'll make our way back down south for Shabbat... and help other friends celebrate their engagement.

I am happy for everyone who I love and care for with the good things happening in their lives... and at the same time, the Jewish laws of mourning feel so right to me now (no public displays of celebration). I need that protection, mourning is an integral process of life and I feel fragile. So, I continue, as we all do, to search for balance in our lives, however that comes for us individually.

Wednesday, January 11, 2017

More on mourning: not for the faint of heart

The thing about doing the split-personality charade is that there comes a time that you just can't do it anymore.

There is just Too Much Heaviness in my life to "put on a happy face". I can't. I'm mourning. It's so heavy, I can hardly bear it. But yet, I am bearing it. My friend and spiritual healer Miriam Maslin says that I have gone through worse. I can remember being in worse situations, but the edge wears off. Hashem protects us from recalling that edge as time wears on.

I am on the edge of crying, or am deeply crying every day. I didn't know how hard this was going to land. I'm of course talking abut my friend Sabrina's passing. I think, also, because my father was here when she passed away, I had to stash my feelings away for the time he was here so I could be with him. Oh, and he was sick with pneumonia. Then, the day after he left, we went away for a Shabbat for a batMitzvah of the daughter of close friends... and I locked up my mourning box for that, too, of course. I can't charade anymore, though. I'm not really making it by faking it. Not for this.

This is paraphrased from a letter I wrote to my friend/spiritual healer:
I miss Sabrina so much. We were very connected, and she was in my thoughts all the time. All the time. I visited with Tessa the other day, that was great. I saw Sabrina's necklace on her, and I could barely keep myself together for her. I took that necklace (along with her other jewelry as well) off of Sabrina after she died. I told Tessa I took the necklace off her mommy. She was excited about that, but then asked me why I didn't let her do it. Ummm, ya. 
Sabrina was such a complicated person, and could be thorny sometimes. I stayed with her because of my own commitment to myself that I won't leave her alone no matter what, but she sometimes seemed to push people away. Still, she was so funny, and so real. I was intertwined with her, enmeshed with all she went through. And I understood all her intricate medical problems, and saw them all-- infinitely worse than mine. There is a huge hole in my life. It hurts so much. Even though we both knew she was dying, knowledge doesn't soothe emotions. I didn't expect to crash so hard. I'm sure it doesn't help that I am also mourning my mom who passed away six months ago, as well. Actually, there are some connections there........
I need to live, though. I need to get out of bed, I need to get back to the gym, I need to live. I don't feel that life force running through my veins these days. I feel either hurting, or numb. I just don't want to do anything. Yes, that explains how I feel- the life force is quieted. I hesitate to say any stronger word than quieted.
I plan on having a few sessions with my former therapist again. Although not much can be done about mourning except to go through it. You just have to do it. Like most things in my life, though, when it hits, it hits HARD. I feel crushed under the weight.

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All day today I spent preparing my son Ya'akov (16) for his hernia surgery tomorrow. We had the appointment at the hospital for the pre-surgery check-up, and all day he was asking me questions about what to expect. I have to balance my answers with equal measures of "don't worry, it really is small, and very different than my hernia surgery", and "yes, it will hurt when you wake up, you may be nauseous or throw up, I understand you are scared...." I can explain all aspects of going under anesthesia, what it looks like, feels like, everything. Rationally, with extensive knowledge, I hope my preparations ease his mind and not the opposite.

Under the layer of the words I am telling him, I wonder if he knows I am Very Scared about this. He's joking that he will die tomorrow (you have to know Ya'akov to understand his joking). He saw me go through the Flesh Eating Bacteria after my hernia surgery, he saw the countless complications and surgeries thereafter... the lawsuit... my health decline. I am trying to be strong for him, but I crumpled in Robert's arms the other day because I am so scared about putting him through this.

Tomorrow (Thursday the 12th) at 4pm Israel time. 
Ya'akov Ariel ben Sarah Rachel. 
Thanks.

Oh, and did I mention I am barely sleeping? Seems the sleeping pills no longer work on me. It's a whole other post actually. Pretty awful. Makes pain much harder to tolerate.

Yeah, things kinda suck.
But only with the existence of dark can light be known... I'm trying to be patient.

Tuesday, January 3, 2017

Mourning

The opening paragraph of my book is planned to look something like this:

I really wanted that baby. I wanted to get pregnant and give birth again. I felt that there was a soul flying around in my universe, needing to land in my family. Being a doula, I needed another chance at getting birth right, after having had a c-section with my last baby. I was looking forward to a positive birth experience that would repair the last one.
In time, the very essence of the words “repair” and “birth” would take on entirely new interpretations. I planned, I prayed for what I wanted. What I now realize is that I did receive repair, and I did receive birth, but only my Creator could teach me those concepts in the way they were tailor made, and intended for me.
I had a plan. As far as I was concerned, it was 100% foolproof. I had no reason, in my small scope of living, to think that things would turn out differently..... 

That's the opening concept... that I wanted another baby. That was the reason I had the hernia surgery.
Along with mourning all I lost to NF after the hernia surgery, I had to mourn not having that other baby. There was no way in the world I could physically or emotionally bring another baby into my family at that point. I know, I have four *amazing* children, and they are true blessings and each one an incredible soul. But mourning what you didn't have doesn't cancel out what you *do* have. Kind of like having a healthy baby after a cesarean section when you had planned a home birth. Yes, I was *of course* happy to have Azriel, and that he was healthy after the crazy birth we had to go through, but I had to mourn the home birth I hoped for. So, too, I talked in therapy about that baby I had prayed for, what it meant to me, how I can move on anyway, and I learned to put those feelings safely away.

What I didn't know is that there was another level of mourning waiting for me regarding that fifth child. It seems I am doing that now. I was ready and willing to adopt Tessa. I loved her mother, who just passed away. I was taking care of Tessa a lot the weeks before Sabrina passed away. It was hard for me, I was giving my all, and exhausting every emotional and physical resource to do it. I was also trying to take care of Sabrina, driving her to Tel Aviv for her appointments, visiting, errands. But I had it in my mind that I was ready to adopt Tessa if things turned out that way. Sabrina had chosen someone else to adopt Tessa, and that me and my family would be "back-ups" if something with the first choice arrangement didn't work out. During those last few weeks of Sabrina's life, I really got to know (and deeply admire) the person who Sabrina chose. We had some very deep heart-to-heart talks near the end, of course. I had to know where she stands, and she had to know where I stand.

It's just that I thought I stood in a different place. I assumed my kids did, too.
Turns out I really couldn't give Tessa everything she needed, while giving my own children what they need as well.

Turns out that what we learn from our kids is *always* our tikun. Once again, they taught me what it means to mother them.

And thank Gd Tessa's soon-to-be adoptive mother is able to make the difficult changes her life will need to take Tessa into her home, and they have a very wonderful relationship. I will still be in Tessa's life, of course. She'll always know where I am and that my door is always open to her. I'll be a loving auntie.

But right now my heart hurts. I am again mourning. Honestly, it's been so tough. Mourning Mom has been more real-time with my father here. And of course Sabrina's passing is so fresh. Then there is also this other little person who, for a few weeks, I thought I'd be bringing up... well I'm mourning the plan of that. It's so interesting how children show us exactly what they need. All we have to do is listen. They are a little piece of Gd that way, you know?

"Mother these souls. The ones I've already given you. 
I heard your prayers, I saved your life. 
I've cradled you in my palm."
-God
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Thank Gd my father is indeed recovering from the pneumonia. He is starting to get a little stronger as you can see in this picture from our walk outside today.


Tomorrow is his last full day in Israel... Thursday is their flight home. I'll miss him, and I'll also look forward to quiet. I really, really need quiet more than anything these days. Quiet to rest, to write my book, to mourn, to heal (will I ever heal?).
One important concept I am learning to incorporate is that mourning is not depression, that there is a very clear distinction. That is somehow comforting, right?