What's In Your Coffee?

I can't remember when I started drinking coffee. I have always loved the taste and couldn't wait to grow up so I could drink it. My mother told me that it would stunt my growth and at the height of almost five feet, I just couldn't risk it. Sometime after high school I started. I never bought fancy coffee, in those days almost no one did, just taster's choice. By the time I got married I was a coffee drinker. Once married, Yitzi would make me coffee. Not that if he didn't, I was insulted, it was just one of those ways he took care of me. I don't sleep well so I am always tired in the morning and it also helped with the slightly low blood pressure.  When I got pregnant with my first, without saying anything, he switched it to decaf. It was a month before I realized and knowing that caffeine is not great for the baby I allowed it. By the other pregnancies, I already knew better. No tricks this time. I argued that I also had a responsibility to take care of the baby and then the babies. None of that would be possible without the coffee. I didn't drink a lot, just one or two cups of instant a day, and I wasn't picky, just don't buy anything that's not taster's choice. Yitzi experimented with flavoring along the way. A little cinnamon, some vanilla, caramel... They were all delicious but don't mess with my first cup. Anything after that is game. Eventually I started drinking more, the one or two didn't work that well, but how I drank it never changed. When I started it was with milk and sugar. Then we found out that sugar is the great Satan and I switched to Splenda. When Splenda went to the dark side, I switched to stevia. But I always had that sweet cup of coffee to greet me in the morning.  On several occasions I have tried to quit (usually before a fast day), but have never been successful. I remember calling my brother and telling him that in cutting down from four cups a day, I am now at six. 

In my quest to take better care of myself, I have cut certain foods out of my diet. Among them is milk and any kind of sweetener. My coffee is a disaster. It makes me want to cry daily. A few days ago I was telling a few friends that it was like a big delicious hug every morning for twenty years, and I miss it. I know that words have meaning and the words we choose to describe feelings are often very telling.  Many of us have emotional bonds with food, and it can evoke many feelings. My cup of sweet coffee is like a hug. It's not that I miss having my coffee just so, it's the man that always brought me the coffee. It is a hug from him that I miss. It's the way he made me feel cherished that I miss. After having a good cry on the subject, I decided not to belittle my feelings. This is hard, and I miss being taken care of and its ok to feel that way. 

This morning when I made my not delicious coffee, it wasn't disgusting, it was just sad and that's ok for now. Hopefully soon I will learn to enjoy the taste of plain coffee. After all, it's just coffee. 

My Soul Cries For Jerusalem

Listen carefully. Do you hear what I hear?  I hear the sounds of good people doing nothing. That's right, nothing. No outrage, no reporting, and no honesty.

When I was a child I had a reoccurring nightmare. I was screaming and nobody could hear me. I was waving people down and they couldn't see me. They were unaware of the terror I was experiencing and my cries were invisible.

Today we are living this nightmare. We are yelling from the rooftops and the world ignores us. How bad would it have to get to get your attention?  Raping women? Enslaving children? Or my personal favorite, sending your children to kill other children? Would you sit up then? Would you take notice? Would you get off your high horse of contempt? Would you sacrifice your fear of offending anyone and start saving lives? Would you venture out of you oblivious comfort bubble and see what a mess you have helped create?  Would you respect life and not color or religion. Would it be more convenient if we were an endangered species? What is your breaking point? When will it begin to bother you? When will you remember your younger self? The one that instinctively knew what was right and wrong. The one that would have done anything to make this world better. What happened? Did you get educated out of morality? Are you proud of yourselves? Do you realize what you are leaving to your children?  My hope is that they will be the opposite of you. Grow up with no hope for a better tomorrow and decide that that is not acceptable. Recognize the inherit right of people to live and that all those who would deny or destroy that right are just evil. Make a United Nations that is not just united in its hatred of Israel, and complicit in the slaughtering of hundreds of thousands, but one United in its goal of making this world safe and good.  

Footnote:  My blog is usually reserved for personal stories and thoughts on our struggle living with ALS. I thought a thousand times before posting something of this nature. I am a proud Jew living in America and I am scared. I wonder how we would get my husband to Israel if the threat to American Jewery would get more serious. I know I am not alone in my fears and worries. I have a son and daughter studying in Israel and like most of my fellow Jews, that is the home of my heart and soul. Given to us by G-d thousands of years ago, it is the Jewish homeland.  Today it is under constant attack and the silence is deafening. The condemnation is loud and clear. If I am silent because I am afraid of what you may say, I become the person I detest. The silent majority that allows all of this, and that would be unacceptable. If the truth offends you, you are not my intended reader, and who cares?Being offended is not the worst thing in the world. Being murdered is.  I write what I see and experience. I write the truths of our lives and for Jewish people,  this is the most important subject of our times. 

Healthy Inspiration

How often do you appreciate the opportunity to do a Mitzvah?  Because our bodies more or less work, we don't think about what a privilege it is to be able to shake a lulav, or eat in the Sukkah, or do many other Mitzvos. Today Yitzi went into the sukkah. It took over an hour to get him there, and when we got there I noticed he had tears in his eyes. He "told" me that it has been two years since he has been in a sukkah. So here I am wondering if and how it would be possible to love our Mitzvos as much as Yitzi does without the challenges he has. First of all we have to think about it and how fortunate we are that we can easily do what HaShem asks of us. Second of all, it has to matter enough to us that we feel a pang of envy when we see someone love doing a Mitzvah. And thirdly, we get to see people like Yitzi and be inspired and reminded that this is special. We have an opportunity to connect to HaShem. So now I ask myself, would there be a way if Yitzi didn't show me? Can we learn all of this from a healthy person who doesn't face these challenges? I am hoping we can, for if not it is necessary for there to be people like Yitzi. So how can we show HaShem it is not necessary. How can we inspire each other and take care of each other without severe circumstances?  How can we pay attention when it's easy? I don't have the answer but I think it is a key to healing the pain of this world. Healing each other long before we are this broken. Taking care of people before they fall. Until I figure that out, I am just going to follow Yitzi. He seems to know what he is doing.  

There and Back

Well friends, it's been a year. A year since we went into the hospital with pneumonia and came out with a tracheostomy. A year since Yitzi could communicate with his phone to the whole world. A year since he could drive anywhere in his wheelchair by himself. A year since I was enough to take care of him. 

We went into the hospital one way and came out totally different. The doctor told me that his life will be easier but mine would get infinitely harder. He told it to me as a warning, like a gentle question. "Can you handle that?" Of course, do whatever it takes. Thinking I understood what that means is like imagining you will handle childbirth. It was shocking. It took a long while to get used to this new life, for Yitzi, myself, our families and friends. The first month was a page out of a horror story. The next eight months out of a tragedy. The last few months have been good, thank G-d. What is good?  We are managing. We have reliable help, and there have been no traumas. We are steady and managing. The kids started a new year, life is continuing and we are taking part in it. Yitzi has mastered the art of communicating with his eye gaze computer and has more guest then most people I know. He has a very active social life and has found a way to balance all the changes he has been given better then imaginable. He is still a fabulous teacher, an involved father and a romantic husband. He learns daily and is as funny as ever. He even fixed the air conditioner this week. He told us the problem and how to fix it. He is annoyingly always right and if only my brain worked half as well as his does, I would be in pretty good shape. He writes me a letter every Friday, and writes the kids as well. He is in touch with many of their teachers and checks up on them weekly. I am in awe of him. When we got married, I knew how special and unique he is, yet watching it to this level is absolutely a marvel. That being said, I so miss the days when it wasn't heroic to smile and to laugh and to just enjoy the family. When it didn't take superhuman strength to do everyday things. When there was no clock reminding us to enjoy every second. When we were just us. Although we are doing the best we can, we long for the day where we can breath a sigh of relief. Where our hopes have changed from thoughts and prayers to actions and reality. Where we can speak to each other and sing together. Where we can dance and play guitar, where we can be like we were, yet so much better for all we have experienced. 

I Would Certainly Die For You, But Can I Live For You?

There are so many songs and poems about dying for someone we love. Perhaps that is difficult, but not the most difficult. My struggle is living for the one I love. 

I spend many hours a day sitting with my husband. We talk, listen to lectures and music or just sit quietly. That is the easy part of the day. Walking out of the room and into the world is the hard part. He wants me to enjoy life, to grow and to experience more. I want to do that with him. I was never the type to adventure by myself, we did everything together, and always dreamed of what else we would do once the kids are a bit older. I tried doing some things with a friend and I would put on my brave face, and then the second I come home go running into his room crying.  It wasn't my friend's fault, she is just not Yitzi.  It's even harder when well meaning people tell me how brave I am to go out by myself, please don't remind me that I am by myself. I must be very stubborn to be still holding on to option A.  (I heard this term from Sheryl Sandberg who lost her husband and had to try option B, to raise her kids and live her life without him) I try to find things to do in his room. I painted a table last week, that was fun. When he has physical therapy, I do Pilates. Perhaps I will try guitar lessons, he always wanted to teach me, we just never had the time. Yet there are many more things outside of his room. I have gone into the outside scary world and tried to "live" for both of us. Sometimes it feels miserable and sometimes I enjoy it. It always comes at a price of exhaustion. Like a vulnerability hangover. It takes so much energy to hold my head up and smile, even when I am really happy to be doing what I am doing, it comes at a cost. Recently I went to a very close friend's wedding. I was away for three days. I really was so happy to be at the wedding, to meet the family I have heard so much about, but the next day was so hard. To go from such joy back to our reality, to remember the dreams of our wedding, to imagine my kids weddings... 

I still think it is worth it. Experience joy and meet new people even if it costs a lot. No matter how much we would like it to, life does not stand still. On my birthday this year I wrote about beginning this brave journey of finding out how to live a good and productive life despite my circumstances. It's like a slow waltz with one step in one direction and then in another.  And let's just say, my dancing skills are laughable. My hope is that I will be able to function in both worlds adequately. With my husband in my safe place and out in the world, where our children are heading.  As the new year approaches, I look back at the last year and let's be honest, it was hard. Not the type of hard I have the strength to repeat. I am tired. I stood still for much of this year and my kids all moved forward. My oldest, who literally saved me much of the year, has left to Jerusalem. While she learns and grows, she will be praying in all of the most holy sites we have daily. She is so brave and positive. Always happy and loves to make others happy - just like her Daddy. My other kids are getting older and learning more and are thankfully, really good kids. I have been so blessed in so many ways and I am so grateful to G-d for what he has given me. But please G-d, make this year better then last year. As much faith as You have in me, I have more in You. 

May we all be blessed with a good and sweet year. Yitzi always says that sweetness comes from having what you need. Being healthy, having resources to care for your family, and having family to care for. May it be so sweet. 

My Journey Back in Time

A few weeks ago I went on a most amazing trip. I went with Miryam Swerdlov and her girls camp and a group of women to spend one week in Ukraine touring the grave sites of the early Chabad Rebbes. For me the trip was intensely emotional and very personal, and at the same time I shared all that with 70 people.  Before the trip I did not bother to find out who else was going, it didn't matter, I had to go. Once on the trip, it was because of who was there, that it was such a unique experience. Friendships that will last a lifetime and girls that have so much energy, talent and heart. It surprised me how much we enjoyed each other. I cannot give enough thanks to the  teachers who taught us all about the lives and teachings of who we went to. Because of them, we felt connected to the Rebbes and familiar with their stories, making our prayers there much more personal, we were talking to someone we know.
The highlights of the trip for me were being by the Alter Rebbe and Shabbos in Mezibuz, by the Baal Shem Tov. The Alter Rebbe was very intense. I was overcome with awe and severity. It was the first Rebbe we went to see, and it was as if the dam holding back and limiting our emotions exploded. We sang the Hachana Niggun followed by the Alter Rebbe's Niggun. We then read our Pan Klalis and then our individual Pans. There was not a dry eye around. Young girls with lists that take an entire page packed with tiny writing. It struck me as sad that at their age they are so aware of all the pain in the world. Not just aware, but heartbroken. How they cried when they read my husband's name without even knowing that I, his wife, was right there. I am constantly shocked and comforted when I see people who I have never met, that daven daily for my husband. But watching these girls heartbreaking cries? That was something else. Not only was I watching, so were our Rebbes. If to my tired human eyes, this was so obvious, I'm sure it was even more beautiful from where they can see us.
As awestruck as I was in Haditch, that's how incredibly happy I was in Mezibuz. Much of the city looks unchanged for the past few hundred years, so it really matched what I imagined it to be. The Baal Shem Tov came into this world at a time that was very hard for the Jewish People. He picked us up from the ground, polished us and taught us how much HaShem loves us. He did this with joy and with love (so naturally, I think of my husband).  In my understanding, the Baal Shem Tov is the source of joy, specifically serving HaShem with joy. All of that is felt tangibly in Mezibuz. Another thing the Baal Shem Tov is known for is the miracles that he performed. Being there made it seem like everything is possible. We sang and danced and listened to very inspiring words of Torah late into the night. I must remind you, I am not a teenager anymore and just being able to function on so little sleep was a miracle.  Shabbos morning I was woken by the crow of a rooster! Of course I slept through his initial ten wake up calls, but it is all part of the untouched beauty of Mezibuz. Again we sang and danced. We shared words and stories, and we shared ourselves. For Seder Nigunnim, towards the end of Shabbos, we went to the Baal Shem Tov's Shul. The actual Shul was built in the 1440's long before the Baal Shem Tov, and was destroyed by the Nazis. What is there now is a beautiful replica. So here we are towards the end of Shabbos -the Baal Shem Tov's time, in the Baal Shem Tov's Shul, singing songs of each Rebbes following the Baal Shem Tov. Again singing and dancing and hearing stories and words of Torah.  The energy from our group was so beautiful, I know I will remember that feeling when things are hard. Throughout Shabbos a question kept coming up. How will we take this experience  home with us  and make sure it doesn't fade like a memory?  I'm sure that we all had slightly different experiences because we are all slightly different. The thought weighed on me quite seriously. How will I make sure this trip changed me?  When I get home will things be different?  Is it a possibility that my prayers were answered?  If they were not, will I make it?  How can I take this joy and hold it tight in my heart, so I can find it when I need it?  On my way home, just as on my way there, I stopped by the Ohel. I wanted to express my gratitude for being able to share this experience. I told the Rebbe of my personal Hachlotas I made on the trip for a daily reminder of where we come from and who we are part of.   I told the Rebbe all about his Chasidim,  and how they are following in his footsteps.
I came home to a miracle but not the ones I davened for. My husband who was well taken care of, was smiling and beaming. The week I was gone, over one hundred people visited him. He was not bored and definitely not lonely. He was so happy that I had this opportunity and so grateful to all of those who made it possible, especially Miriyam Swerdlov. The other miracles, well they may just take a little longer.

I am including two entries I wrote while on my trip.

Today we went to a sanitarium where the Rebbe's brother, who was not well was living. In 1940 the Rebbe's father was taken prisoner and the Rebbe's mother, Rebbetzin Chana was faced with an impossible choice. To go with her husband or stay with her son.  I believe her son was by then in his thirties and partially paralyzed.  Rebbetzin Chana knew that if she stayed with her son, she may never see her husband again, and if she went with her husband she may never see her son again. She went with her husband. In 1941 the Nazis came and massacred everyone in the sanitarium. Those who were not perfect enough to deserve life. Today there is still a functioning hospital there and recently a grave marker for all those killed there. Rebbetzin  Chana never knew what happened to her son. The choice between being with your husband or children broke my heart. In my small way, I make that choice daily, and I never know if I am doing the right thing. I imagine the sacrifice those before us had. The difficult choices that must have been heartbreaking. And because of those choices, we are here today, so thank you for your self sacrifice and I am crying with you. 


Today we went to Haditch, to the gravesite of the Alter Rebbe. The Alter Rebbe is the first Chabad Rebbe, the author of the revolutionary Tanya and my great grandfather many generations back. I woke up nervous, and was unable to eat much of breakfast. It took us 6 hours or so to get there. I may have cried the whole trip. I felt strongly that praying by the Alter Rebbe can bring miracles, but so far, I have not been worthy of one. It took me almost the whole 6 hours to come to a few realizations. Firstly, I am coming on behalf of my husband and he is most certainly worthy. Second, there is a chance that if I am worthy of my husband, I am quite worthy. Third, the 70 other women and girls I am with have an amazing collective energy, and pure hearts all praying with me. And lastly and most important, even if I am not, the Alter Rebbe is. By the time I got there, I was quite nauseous and feeling faint. I ran ahead, for one more minute of holding back was unbearable. I really poured my heart out. I took all of my sorrows, my worries and heartache, and some of my friends and families and I laid it firmly down for the Alter Rebbe to handle. The rest of the group came in, we learned some Tanya, and sang the Alter Rebbe's Niggun (song). I remembered my wedding when we also sing that song and imagined my husband and myself walking our children to their Chuppas as well. Then we all read a letter of request to heal those who need it, to give children to those who need it, to find spouses for those who need it, and to give livelihood to those who need it. There was not a dry eye among us. It was very powerful. When I left my shoulders were lighter, my heart was lighter and I felt happy. I know G-d is good and there is nothing beside Him. 

What Goes Down, Must Come Up

This entry was written on my birthday. I struggled for a while whether to put it out there or not. My frame of mind fluctuates as do my feelings. Some days are really hard and others are even good. For all of you going through hard times, I want you to know, we all have bad days. My current struggle is on finding my way without my husband actually by my side. I am not very brave and have always leaned heavily on Yitzi. All my dreams were going to be done with him. I am not the type to just try something new, and in order to survive there is a lot of NEW I have to try. So this summer I am on a journey. I only have one child home and a whole lot of time. As I begin this journey, I want to share the heartache that led me to this decision. Some people think that a bad day is illegal. Or a low mood needs to be fixed. I beg of you to stop. Life is a cycle and a healthy mind needs to reach a point on one's own in order to rise again. Sometimes well meaning words just make me feel that not only is my mood bad but I feel guilty about my mood being bad. As if it is unjustified. Let your friend know that you are there and that's it. People are amazing and on their own can rise above what even they thought was possible. To mark the 'before the journey', I am going to share my bottom of the wheel with you. Birthdays are days to check in and measure one year to the next. For me this was tortuous. I couldn't even bring myself to finish writing it. Just putting it in writing was depressing. Before I could finish, I saw a beautiful birthday wish Yitzi had posted on Facebook. Seeing that despite my agony, my husband thinks I am fantastic brought me somewhat up from my mood and thankfully unable to continue writing  as I was. 

I was hoping to ignore today. Let it come and go like any other day. the more I tried the more I realized that is not going to happen. I have always used my birthday to reflect on the last year and set goals for the new year, and that has me really stuck. This last year has been so difficult, I don't think I accomplished any of the goals I set out to. I am hesitant to make any new goals. Yet we survived this year. My kids are happy most of the time and growing up beautifully. My husband is an accomplished writer and teacher. He has a lot of beautiful visitors that fill our home with song and laughter, brotherhood and of course, Torah. So why am I so sad?  My heart is broken and although I firmly believe that Hashem can do anything, I find myself wondering all the time why he hasn't. I feel abandoned and not worthy. Little things bother me, and I am not so interested in other people's problems. I have always been a good shoulder to cry on and now I don't have patients for anything. When I see someone driving them self in a wheelchair, I wonder if they know how lucky they are. Some days I feel like I've become the person I dread the most, a bitter person. Most of the time, I am just fine, but hardly the person I was. I don't go out too much, it's too hard answering the dreaded 'how are you?' question.  I try and put on a brave face but it is exhausting. 

So here ends one year, and a new journey begins. Next week I will be joining a group of women traveling to Russia and Ukraine. We will be visiting the gravesites of the early Chasidic masters and pouring our hearts out. I hope to share with you all about it.