Saturday, December 9, 2017

There Are No Words

It’s been a while since I wrote last. Generally, I write when I have something to say, but this time I am writing because I have nothing to say. My words have stopped working. Words are merely names we have given to feelings and emotions and things. They don’t begin to scratch the surface of the depth, the intensity, the fear, and the pain. A month and a half ago I almost lost my Yitzi, my heart, my soul, and my best friend. What words would even remotely work to describe that?  It is taking me a very long time to get past that. In the past, I have prepared for all sorts of emergencies, just in case something happens. I told myself-although we need to be prepared, thank G-d, we have never had an emergency. Now not only can I not say that but I know how one minute may mean all the difference in the world.  I fooled myself into thinking we are stable and are not in any imediate danger. So how can I possibly sleep? What if this time I don’t hear his machine’s alarm? How can I even think of traveling? Yitzi of course bounced back five minutes later. He has totally refocused on writing even more, learning even more, and telling the kids where they come from so they can see where they are going. He is so busy living in the best way possible, and I find that both amazing and slightly annoying.  He is thriving and I am not.

At the same time we have had a huge shift in our nurses. All of the nurses we had 4 months ago, left. One had a baby, one got an awesome job as a hospital administrator, three went back to school and the last was just working too many jobs. We have had some luck on getting new ones and will keep working at it until we are fully staffed. As you can imagine, or better yet, as I hope you cannot imagine, this has not made anything easier. The many nights I have stayed up just watching the man I love sleep- making sure he is still breathing and listening for any changes in the sounds of the flow of air- has made things even more challenging. It is  lonely to sit in silence just watching for hours on end. I can almost hear the sound of my heart breaking. If I ignore the tubes and the machines, I can fool myself into thinking nothing has changed, he is just sleeping.  I took a little break from anything public. No talks for two months, no traveling, and just focusing on my family. I thought this would be a good way to recharge and reassure the kids and find some sort of strength from somewhere so deep I am having a hard time locating it. I had hoped I could take the kids out on sundays, do things Yitzi used to do with them. The beach, the mountains, play games, ride horses, eat ice cream. But what I have done is stay up every weekend night and sleep all Sunday and cancel time after time on my kids. They know someone has to be nurse, but as they say, neither their father nor mother can do regular mommy and daddy things. I am so tired of disappointing them. Thankfully there are a few young men in the community that have been helping out the last few weekends and I actually got to take one daughter to the dentist but we have yet to make it to the horses. There are times when I wish we could lock the doors and hide from the world. Just hug the kids and focus on them. They want so much to be a regular family with privacy and routine. The younger three have really been struggling with the constant flow of people at all times. We tried implementing certain visiting hours. 
Monday through Thursday from 5pm and on is family time, but there has yet to be a day where it was enforced and that is my fault. I want Yitzi to be happy and he loves all of the visitors, and I have a really hard time saying no. But Yitzi has reminded me that he is a father and wants the kids to be happy and he will be happy if they are. So from here on we will be closing our door on occasion and perhaps telling you it’s not a good time. And hopefully soon the kids will feel 'normal' again.  
I am looking forward to a day when this trauma becomes the foundation to something positive that can be built on it, but for now, I am doing my best to practice what I preach.  Find things that bring some joy and some peace of mind. Be patient and kind to myself until I am able to stand a bit more firmly on my own two feet. And recognize that when things are not OK, its acceptable to not be OK (temporarily). I am looking forward to the day that I can once again smile from my heart.

Monday, September 18, 2017

We Can Make The World Better

As this year comes to a close, it is time to look back at the last year and see what we have accomplished and where we could have done more. Personally and professionally. The highlights of the year and the lowlights. Where our strengths lie and where our weaknesses lie. Professionally, it was a good year. I spoke over 50 times in over 30 cities. I fully acknowledge that with this challenge of ours, G-d has given both Yitzi and I a gift. A job and a mission. Although I am certain I can always do better and do more, it was quite a year. I cried with and laughed with and hugged people around the world. We shared our pain and our challenges and our love with each-other. And then I went home and fell apart. It is so hard to hear the pain that is in your hearts. I am not the type to forget it and not too good at compartmentalizing. It weighs heavily on me and on some days when I have not slept enough, it seems that the pain of this world far out weighs any good, and I feel so sad. I realize that there appears to be two different sources of our pain. One is Directly from G-d, and the other is indirectly. We know that really it is all from G-d, but the way of the world is that it appears to be brought on by other people. This second kind of pain is much harder to carry and tends to make people so bitter. In traveling around, I have heard so many stories of injustices brought on by friends, family and people we work with. Injustices so severe, they cause health problems. Some as serious as heart attacks and some as seemingly benign as headaches and lack of sleep. I know for myself that I can pretty much cope with my life, but when someone I rely on is not reliable, I do get mad. When a night nurse does not show up, I become an angry monster. How dare people make life harder then it needs to be? This is where I think we can all do better this coming year. G-d has given us enough challenges, who do we think we are to add to it? My resolution for this year is to NEVER add to the pain of another person. Whether they are my friend, my family, strangers, or people I work with, it makes no difference. They are all people who have enough pain in their hearts to last a lifetime. I beg of you to join me in this. Make it your mission to only be a source of goodness and kindness and compassion and love and generosity and discipline. (For now, I think honesty is going to be put on the back burner. Honesty can be mean and hurtful when it is spoken without compassion, and yes, it hurts me to say that.) If what you want to accomplish cannot be done with positivity, then don't do it. If G-d is good, and we are in his image, we need to be good. If what you are doing is causing pain to others, you are not acting in His image. It does not matter what your job is and it does not matter what the other person did. You are responsible for you. If you want this world to be better, be better. Next year, at this time, I want to be able to honestly say, I made this world better. I listened and I cried and I laughed and I helped. There are parts of our lives we have no control over, but how we treat others is well within our control. Let's do better. Let's be better. Perhaps we cannot fix the whole world, but we most definitely can make it so much better. May G-d bless you with a good and kind heart, with good health and beautiful families. May you always have plenty of resources to give- time, money, love and kindness, and may this year bring us everlasting peace, the ultimate healing, the coming of Moshiach. 

Monday, August 7, 2017

A Few Thoughts on Love

Today is a fabulous day. It is the day we began writing our special Torah, 4 years ago in a beautiful Vinyard in Temecula. It is also the day Yitzi comes out with his fabulous marriage advice for men. He works so hard in the hopes of bringing couples closer together. I am really no match for him, but I would like to share a thought or two on marriage advice for wives. It's more important to have a beautiful marriage then to have the perfect husband. It is our choice weather we engage fully in our marriage or not. It is up to us to cherish what we have everyday, because who knows what tomorrow may bring. We need to recognize that our heart beats in our husband's chest, and when he is happy, our heart is safe. When he feels unappreciated and alone, our heart that he holds suffers. Be loving and creative in ways to connect to each other. Do not live in the past, live today and dream about an even better tomorrow. None of us are perfect and hopefully we all learned from any mistakes we have made. Let it go and be open to positive change. As long as there is life, there is hope for love, for connection, for companionship and for dreams. BE ALIVE.

As I write this, I am waiting to board a plane to Australia. I am so excited to meet so many people there, and I am terrified to go so far from Yitzi. He has given me his word he will be there waiting when I get back. I travel and speak because Yitzi believes I must and his faith in me has made me a much better person. This I believe is the most powerful gift G-d has given us. The ability to love so much you go beyond yourself. As this auspicious day comes to an end, I bless all of you to love and be loved so strongly that there is no room left for fear, for doubt, for hurt, for anger and for hate.

Wednesday, June 28, 2017

May You Be Blessed


Birthdays for me are a bit challenging.  Every year I have high hopes of what the next year will be like, how I will grow personally, and how I can do my part to help others.  I usually set that bar pretty high, and of recent years, I have not been reaching it.  Not necessarily my choice, but nonetheless, not reaching it.  On the other hand, we survived another year, and that is very good.  We started this year a family of nine and Thank G-d, we are still a family of nine.  We have grown a year, learned a whole lot, made new friends, tried new things, and shared many good times together.  We are living a life I could not imagine in my wildest dreams, in positive ways and in other ways.  I feel a bit worn out, but hopefully that will pass soon.  I would like to share the blessings I wish for my family and for all of you as well.

May you and your loved ones be blessed with good health

May you be blessed with good Shidduchim

May you be blessed with good children

May you be blessed with prosperity

May you be blessed to see goodness and kindness wherever you look

May you be blessed with exceptionally good character

May you be successful in your studies

May you be G-d fearing and righteous

May you be hard working and responsible

May you be blessed with a joyful disposition

May you be blessed to sleep with a peaceful heart

May you be blessed to be successful in all you do

Keep your eyes and your heart open to all of the good in the world

Be part of all that is good in this world

Recognize the kindness of G-d and His people, and be forever grateful

Do not fear love, it is the foundation of all we hold dear.

Do not be afraid to break, there are parts to you that are unbreakable for they are your G-dly parts, and that is the essential you and all that really matters

Never give up on your dreams, you only fail when you stop trying

Know that you are loved in a way that goes beyond this world and its limitations

You are more precious then gold and diamonds and as holy as a Torah

I wish I could promise you that life will be wonderful and assure you that miracles will happen, but I do promise you that I will be right there with you, holding you up until you can stand on your own.

May we all be blessed to welcome Moshiach together very soon

Monday, May 29, 2017

Mussie's Bas Mitzvah

Yesterday we celebrated the Bas Mitzvah of our daughter Mussie. It was beautiful and she was beautiful. I would like to share with you what Yitzi wrote and what I wrote. It was surprisingly difficult for me to get through it. I cried numerous times. I often speak to people about the hardships of life and get teary eyed, but this was so different. She is my baby and life has been so challenging. I so wish I could just tell her that things will be ok, but that honesty thing. It really gets in the way. 

Dear Mussie my precious pretty princess,

Since the day you were born, you were special. You always lit up the room with your smile and you knew how to make others feel good. You also have the most beautiful voice and you love children and they love you. You love to help people, you are a little mammaleh. You are also beautiful like your mother, and that is because, like her, you are beautiful on the inside and that comes out for everyone to see.

These are just some of the gifts, that Hashem gave you. It is clear, that Hashem wants you to use these amazing gifts, to lift the spirits of others and that is a true blessing.

My wish for you, is that you strive to be the most happy and wonderful version of yourself. You are our little light, our beautiful Mussie.




To My Dearest Daughter Mussie,

Mazal Tov on this very important occasion. A Bas Mitzvah is such a special time for a young lady. We welcome you to your place among the Jewish people and more specifically, among the Jewish women. The strongest, smartest and kindest people I know are Jewish women. Hashem has given you the most important task in the world, to make sure our future is strong. You are going to need brains, creativity, hard work, a big heart, a beautiful smile and unshakable faith. It will be like a recipe. Add a bit of everything and mix with love and care and often tears, and the outcome will be delicious. 
In the summer of 2013, your father and I went to Israel for a medical trial. While we were there, we davened (prayed) at many holy places, but specifically by the gravesite soft our Matriarchs. There is nothing like crying to your mother, and a mother always wants what's best for her children. We were heading to Kever Rochel (the gravesite of our matriarch Rachel) when we bumped into a girls traveling camp. They were so excited to see us as they had been davening for Tatty (Daddy) all summer. They gave us many blessings for a speedy recovery and asked if Tatty would speak to them. It was quite difficult to understand what he was saying at that time, but there, just outside Kever Rochel, Tatty gave his last speech, and it was to young ladies much like you. He told them that Hashem loves them, and how the Rebbe has so much faith in them. He told them that they are the key to our future. It will be up to them to determine out future. Right there, outside the gravesite of our mother Rochel, who is also called the mother of Galus (exile), he told these young ladies that although this exile is hard and bitter, they have what it takes to endure, and not just by the skin of their teeth, but magnificently. 
Mussie, your sunny disposition is the most similar to your father's. The way you sing while you work, the way you love to laugh and wake up with the sun -at least before you became a teenager. The biggest gift in life, to yourself and to those around you, is to be happy. It will make every part of your life better and more enjoyable. 
We watched as Tatty lost the ability to sing and to laugh out loud, and in loosing your ally, it became harder for you to maintain your sunny disposition. As our lives got harder, and we left our beloved Shlichus, being so happy was not so easy. I want to remind you that this is who you are. Sometimes we can forget who we are, but returning to yourself is like coming home. It is not nearly as hard as changing your nature. Your nature is beautiful and joyful and loving and nurturing. 


May Hashem bless you, my sweet Mussie Pie, with so much to be happy about. We are all looking forward to the day when you and your beautiful father can sing together and laugh together all the way to the Bais Hamikdosh. 


Sunday, April 9, 2017

The Four Sons

Tomorrow night the holiday of Pesach begins. This is the birth of the Jewish nation, when we went from a family to a nation. G-d took us from slavery to freedom and gifted us with the honor and responsibility of being a light unto the nations. G-d did not just physically remove us from slavery, he showed us how to live with a mentality of a free people and individually as a person without limitations. This is a holiday so rich with traditions and special foods and it all revolves around the children, who have always been the future of the Jewish people. During the Seder, we talk about the four sons and the different questions they ask. The wise son, the wicked son, the simple son and the one who does not know how to ask. And we learn what the proper answer is for each one. Last year as we were reading this part of the Haggadah, it occurred to me that I have gone through each of those 'sons' in the last few years, and that process has repeated itself numerous times. 
When Yitzi first got sick, if I was asked how I am doing, or what can be done I absolutely had no words. All I could do was an 'I have no idea' motion with my hands. I was locked in a silent world where there were no words to describe the emotions and thoughts I had. Slowly I moved to the 'Why' stage and the 'How' stage and the 'What' stage. Why would G-d do this? How will we survive? What did we do to deserve this?  I definitely went through an angry stage. I was sure I could outsmart G-d. I would argue with Him all the time. 'G-d, if you think this is going to make us stronger, or better, or teach us something I guarantee you that it won't work. Soon you will realize nothing good will come from this and you will give up on this grand plan.' And why G-d do You think you get to do this to people and then we say 'May G-d comfort you...' You don't get both. Either you destroy us or you comfort us, pick one!  Occasionally I feel slightly wiser, I can see so much good and can use this to comfort so many others. I see how Yitzi has inspired so many in need of inspiration and reminded us all not to take life for granted. He may be locked in his body but his mind and heart and soul sing with freedom. 
In the Haggadah we learn how to respond to these stages. The one who does not know how to speak, we learn that the mother comforts and opens their mouth for them. Sometimes all we can do is give a hug and be there. You have to figure out how to help and what to do for that person. The simple son needs a simple answer. G-d has done miracles and can and will again. There are no real answers to those questions, just faith. In the Haggadah it says that the wicked son gets a sharp answer. Sometimes perspective is everything. And if one is truly wicked, perhaps a sharp answer, but we are not really wicked. We are scared and angry and feel a total loss of control and if G-d is lucky, (and we are lucky) we argue with Him and don't abandon Him. The wise son gets a more detailed answer. Although I am most definitely not a wise son, I do really want to understand, and most of the time I am open to learn. 
Many of us have experienced this cycle more then once. I hope and I pray that this year we receive the ultimate answer from G-d. The one that leaves no more questions and makes us whole again. Tomorrow night is one of the most auspicious times of the year. G-d personally redeemed each and every one of us and can most definitely do it again. Use your time wisely and ask for what you need. May this be the last of our exile and this year in Jerusalem.

This is dedicated to my beloved husband Yitzi who has been a wise son since I met him. His faith and joy and love has made this world so much of a better place. He is good through and through and I love every day with him. May this year bring miracles and blessings to us all. 

Monday, March 20, 2017

Recognizing Loss and Changes

It's been over four years since Yitzi was diagnosed with ALS. That's two years longer then we thought we had, thanks to the tracheotomy.  To say this has changed us would be too much of an understatement.  For the last four years I haven't taken a deep breath, slept a full night, or felt at ease.  I know that I try to focus on the good most of time, but this time I just want to focus on the losses and the changes we have gone through.  That doesn't take away from all of the blessings we have, for it's a world of duality.  We have suffered loss, yet we still have a lot.  Not a contradiction, they are both truths.  The core parts of us have not changed.  Our character is the same, or maybe even more developed, our capacity for compassion and kindness has grown.  There are things that really get to some people that we don't have the patients to care about, yet on a bad day the most trivial issues drive us crazy.  We can sit and talk to you about matters of the heart, but small talk is torture.  As time has gone by, I see that we have changed in many ways, yet these are changes that I could not have foreseen.  Being in a state of panic for long periods of time affects us physically.  Our bodies are not made to be in fight or flight mode for years at a time.  I have asked others who have lived through similar situations how it has effected them, and these are some of the answers I got.  Decreased concentration, Insomnia, loss of interest, irritability, depression, hyper-vigilance, little or no memories, self destructive behavior, substance abuse, eating disorders, chronic pain, chronic headaches, emotional overwhelm, panic attacks, shame, nightmares, startle response, chronic fatigue, bad or no decision making skills to list a few.  Now this list is not what Yitzi is going through.  This is what families of a loved one who is sick goes through, and primarily the spouse or caretaker.*  This is something we need to talk about.  I have had thousands of conversations with families like mine, and each and every one of them is surprised that they are not the same person they were before.  They are going through extreme stress, and on top of that, they are disappointed with themselves for "falling apart".  When I tell someone that 'I am really not holding it together', they tell me one of a few things.  'How could you?', or 'who would be able to?', or 'nobody expects you to', or maybe even, 'I can see you, and you are doing fine'.  (Let's put aside the last one for now.) But when you are pouring out your hearts to me, you don't say the same.  You are expecting too much from yourselves.  It is not possible to live through this and still keep up with everything.  And when you try, you are harming yourselves and your families.   Aside for all of these unwelcomed changes, there was another response I got from almost everyone.  Do you take care of yourself?  Almost all of the people who responded were women.  (I am not going to get into why that may be, but it is noteworthy.) Mothers, wives, sisters, daughters and friends.  People who are the caretakers for a loved one.  After giving their everything for months or years on end, they begin to fall apart and learn the hard way how important it is to take care of yourself as well. Not just if you have time, but as necessary as gas is for a car to run, you need to take care of yourself.  Some people are better at this then others.  I am not very good at it, but I am learning.  This is what I have learned so far.  Make sure to eat at least two meals a day, preferably healthy.  Vitamins are essential.  Seven cups of coffee and two bars of chocolate are not helpful no matter what.  Walking in a place with more trees then people sets my heart at ease.  A waterfall earns extra points, a rattlesnake does not!!  Talking to a good friend who loves me even when there is nothing left to love, is even more important then the vitamins, but take the vitamins anyway.  Buying new lipstick or new shoes can be very helpful as well, but sometimes the thought that buying something will somehow change my circumstances, is laughable or cryable.  Depending on the day, even if it is on clearance.  Reading a good book, coloring with my kids, or watching the waves at the ocean.  Each person takes care of themselves their own way, but it has to be done.  
There is another aspect of long term illness I want to share.  Along the way there are so very many losses and each one is painful.  When Yitzi first got sick, I knew with absolute certainty that I would not survive without him.  Is it even possible to live without your heart?  Without the person who makes me me? We did everything together.  He was a very hands on father and husband.  He took care of so many things, how could I even manage without him?  I feel like it is a bit cruel, to force me to manage without him before I have to.  I was perfectly content to die with him, or at the very least, to stop living.  And now, I do almost everything on my own and I am not dying.  (We have so much help and support from the community, so in no measure am I actually doing it alone, but I am refering to living my life as a mother and wife and friend.) I am going to have to live without Yitzi.  I have already lost his smell, his sound, his music, his touch, his easygoing way of taking care of the kids and me.  I have to function in a world where for the most part, he is not by my side.  It is true that I still have him, and of course I love that and thank G-d for that daily.  But the losses, well they are there to great me every night instead of sleep.

*These same symptoms would apply to people suffering prolonged abuse of any kind as well.