Monday, March 20, 2017
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.
Thursday, March 16, 2017
Every once in a while, you hear of someone so special they change your world forever. This was the case for me with Adam and Lia Kreif. Adam was diagnosed in July with a rare form of blood cancer and his story became very public as we joined him and his family in their search for a bone marrow donor. We all had our cheeks swabbed in the hopes that we would be a match. Over 60,000 of us did. We watched and waited and cheered when a match was found. Not only for Adam but quite a few lives were saved in this process. We prayed and took on more and more good deeds, kind deeds, whatever it would take to rock the heavens. We had his entire family in our minds constantly. What a very beautiful family, so young and with so much love you can feel it just by looking at the pictures. I am not one to give reason to what G-D does, but I do know, that G-D has a plan, and this week G-D took Adam back to the eternal home of our souls. Today I went to visit his wife and family. There are very few things that would comfort someone at this point aside for a hug and a shoulder to cry on, but I will share with you a thing or two. The pain we feel is directly related to the love we feel. If we are lucky, then the pain is excruciating. That means the love was so very powerful and special, and this is a gift we do not all get. So don't hide from it, it is not a bad thing, it is a reflection of the love we have, and that is a blessing. I also feel strongly that a husband and wife are part of each other. They are souls that are on equal grounds and they complement and complete each other in many different ways. As much as Adam touched us all, so did his wife. The love we see reflected in his eyes is the love for her and the love received from her. But maybe even more important then those two is their personal loss. Although we are all sad and broken and feel like we have lost a brother, Adam's family actually lost a brother, a son, a father, and a husband. We can cry with them, but we cannot begin to imagine the loss of such a remarkable human being to those who are his family.
If you have not yet had the opportunity to get your cheek swabbed, please do. You can save a life and what is more important then that?
Sunday, March 12, 2017
I breathe a deep somewhat disappointed sigh of relief. Purim is over and it wasn't awful. It wasn't fantastic either. Every day is a concerted effort to be positive and happy and Purim is no different in that way, oh but what was.... The joy the festivities, our Chabad house and our friends. They all weigh heavily on my heart and mind today. It is such a privilege to have a Chabad house and the Purim festivities, and being so busy and so tired you can't breath. Now we are home with too much time. Our home is far away from where our hearts are. We have so many new friends, but what about our before friends? The ones who we loved and the ones who loved us when we were just us. The space between reality and memory are ever growing. This is the fifth Purim since our lives changed. It is harder and harder to be positive and upbeat. It is these days, the ones where it is a Mitzvah to be happy that I find so challenging. The days that were defined by the energy of Yitzi, that I miss so much. Let's just hope the Mitzvah of being happy is counted by the minute and not the day. Perhaps then we did alright.
Thursday, January 5, 2017
Here I am, stuck in a small room with needles in my foot wondering how I got here. Well, it all started with Brocha. Brocha and I have been friends since first grade and for the most part of the last 36 years, we have been best friends. Brocha is built like a gazelle. She is tall and thin and very graceful. She is the type of person who has no clue how amazing she is, but her friends all know. She is loyal and kind and very giving. Brocha called me one day asking me if it would be ok if she ran the Miami Half Marathon to help out with our medical expenses. A thought ran through my head (so fast it was barely recognizable as a thought), wouldn't it be amazing if I could do that too? But I'm not built like Brocha and I am so frozen in my fear that there is no way I can do that. Well that year team Run4Yitzi began and raised $10,000. The next year the team grew and they raised $20,000. From the day of the marathon, I started dreaming of crossing that finish line. This time really thinking about it. Can you imagine being so free you can just run? It became a sort of obsession in my thoughts. But I developed a foot problem so I had to wait until it got better to start running. I spoke in length to Brocha, about all the reasons I really need to do this. We decided to try and raise $50,000 this year. Both of these goals are very lofty. Me running and $50,000. The team kept on growing and the people running are really amazing. Some have been lifelong friends and some we have never met. Well, a few weeks into the training said foot problem came back with a vengeance. I tried to ignore it but that created other problems. I found a Dr. who practices a few forms of Chinese medicine and said he could help me avoid surgery but it will take three weeks and I have to be off my foot. Um, hello? Have you seen my life? But I really want to do the run so I agree. So here I am sitting in what I refer to as the Chinese torture chamber contemplating the meaning of pain. This pain is necessary to get better but my reaction to pain is what I am trying to analyze. Why are we afraid of pain? I try to avoid it at all costs. It creates a panic and I have to remember my hypno birthing visualizations and breathing . And on top of all that, I try to hide it from the Dr. as if it's a bad thing to have any reaction to pain. He knows it's killing, I know it's killing, so why am I so afraid to show any reaction? I try to remember a Dvar Torah Yitzi wrote about pain being part of the plan. So I'm saying to myself, it's part of the plan, it's part of the plan.... But then, "OH MY GOODNESS, CHANGE THE DARN PLAN!!" It is curious to me that a foot can occupy an entire head. I try to just sit in the pain, actually, that's exactly what I am doing, yet I imagine I am anywhere else but here. I think of all the times I have been in pain and how each time it was different. Having babies, going to the dentist, headaches, heartaches. When Yitzi first got sick, I welcomed physical pain. It was such a nice break from what was going on in my heart. But it's been years now, and I believe people who have constant pain get worn down, and any other pain is too much. I try to find a ray of sunlight in this situation, but I'm coming up empty. I know it's just a foot, but let's be honest, who has time for this? He says it's getting better but I can't tell. By now it's been almost two months and it's time to face the facts. I will not be able to run this year. More then feeling slightly dumb for having to go back on my word, I am sad that I won't be running with this amazing team. I am still hoping to avoid surgery, and to fix the problem, but it won't be on time for this year's marathon. The goal of the marathon is the same, to help raise money for the many medical expenses we have. If you haven't yet, please contribute to this run. Thank you and I hope to start training the minute the Dr. says I'm good on my feet.
Wednesday, November 30, 2016
I wake up in the morning and stare at my reflection and wonder how well can I hide it all today. Somewhat expertly I apply the mask of the day. It's my war paints and I can't go out without it. It hides the lack of sleep and the sadness, the pale cheeks, and the fact that I am getting older. It makes me feel stronger. I am playing the part of a women who has it all together. Get dressed, put on whatever costume I feel I need that day. The days that are ok, the mask is less intricate. It's really myself that I am trying to convince. Get up, get the kids up, breakfast, lunch, take them to school..... You know, like all mothers do. If I look the part, maybe I can play the part. Just keep going, and don't stop long enough to think. But somedays, the memories slip out of my eyes and down my cheeks. They wash away the war paints and I'm stuck staring reality in the face. Its not nearly as ok as I seem. Most of the time I fight that. G-D forbid should we be sad, let G-D down, let my family down, let myself down, let you down. But sometimes I am too tired to fight and my masks are not working. Sometimes it's ok to not be ok. But tomorrow I will probably buy new lipstick and see if that fixes it all.
Tuesday, November 8, 2016
Let's imagine for a minute that G-D took our hand in His and said "I have a job for you. It's going to be a hard one but I know you can do it. Your path will be full of heartbreak and difficulties, yet you will be able to help and comfort many. When it's time I will show you how important it was and how necessary you are, but until then, although you will comfort many, none will comfort you."
Would you take the job? I know I would without hesitation, yet without that conversation, I am having a hell of a time with all this. This is probably true for most of us. Our challenges are straight from G-D, and we know He is good and kind and the only reason he would put coal through the fire is to make a diamond. Our souls were each told something like this on their way down, and we really have no say in that part of the deal. The part we do have a say in, is what we do with it. The founder of the Chassidik movement, the Baal Shem Tov, taught us that a soul comes into this world for 70 or 80 years just to do a favor for another. Can you imagine if we measured our success by that? Not fame or fortune, but a kind and generous heart. A person willing to forgo their personal comfort to help another. A person willing to approach another in need, and offer assistance. Let's get really uncomfortable. Let's say, my journey is hard and I know how that feels, maybe I can make someone else's easier. Along the way, that might bring you some satisfaction and will most definitely be more purposeful. For myself, I have noticed that I am occasionally able to help people and to comfort them. Let them know they are not alone in this great big world. Yet I feel very alone. At night I am alone. In actuality and in my mind. It's painful and harsh and the worst part is also the best part. Yitzi. He healed my heart and now because of him it is broken. He taught me how to love and how to be loved. How to forgive and how to love life. The whole house revolves around him, yet he has never even seen my room. At night, it's me and my memories and conversations with G-D.
Saturday, October 1, 2016
I love honesty, and I try to be as honest as possible in my life. This means in all of my relationships. My relationship with G-D, with people, and with myself. For most of my life this has done me alright. I am not a good pretender and there are many times we need to act certain ways and we don't always feel like it. Some people have no problem doing that, I do. You can usually see it on my face and to me that is a little invasive. I don't even write lol unless I have actually laughed out loud. I'm more a smile in my head type but there is no abbreviation for that yet. (So I'm sure you can imagine how the election is bothering me.) But for the most part I think honesty is a good thing. Perhaps it is most challenging to be honest with ourselves. To recognize uncomfortable thoughts, emotions, and even actions. I try hard to be thankful for all that I have and to stay in a positive frame of mind, and often that works. But sometimes something hits and it hits hard. Usually it's a little thing that reminds me of the way things were and it catches me off guard. The big things I try to prepare for, but the little things are things we notice in everyday life that most people take for granted, and they just sneak up on us. Then once I am longing for what we once were, it opens the door to all we have lost. Often I admonish myself and remind myself of what we still have, but let's be honest. We have lost plenty. It has been three years since I heard my husband's voice, him sing, talk, daven, whisper. It's been two years since we have shared a room, since a nurse (stranger) is in our home, at his side, hopefully 24/7. It's been four years since we realized something is wrong and since I have taken a deep breath. It's been three since we could just go somewhere together without endless preparation. It's been a long time since I have seen Yitzi play with the kids like he used to. The youngest does not even remember what a good father he was. He may be lucky, he doesn't feel the loss as much. I miss the way he laughed, and smelled, and sounded, and how his leg would move when he was concentrating, and his eyebrows would raise when he liked the food, and how he loved me and the kids. I miss how he looked like a prince in his hat and long jacket, how standing next to him made me feel like a princess. I miss yelling at him. I miss hearing him snore. I miss dreaming of what we will do when the kids move out. I miss our little Chabad house but not nearly as much as our community and friends. I miss being who I was and not needing to be brave all of the time. I miss the simplicity of our lives and the innocence of our children. We have lost so much and yet we still have so much. One does not negate the other. Focusing on the positive does not mean the rest miraculously disappears. Every so often it's ok to recognize that loss and maybe cry for a day or two. There is no comfort for that. It's just gone. The fact that Yitzi was the way he was with all of that talent and love and joy, makes the fact that he cannot do most things so much more painful.
It is now two years since Yitzi had a tracheotomy. Two years since he was given a new lease on life. They have been hard years but this year was a bit easier then last year. Still way harder then before. In all honesty, I am grateful for every second with Yitzi and I appreciate all we still have and all of the people who add to our lives. I also intensely miss what we had before. I am glad this year is over, it's been long enough and I look forward to a better year. Not just better then the last two years but really good. A year of good health and miracles. A year of deep breaths and restful nights. A year of revealed good, not trying hard to see how something can be good. A year of Nachas from our children. A year where we don't have to be brave and strong. A year where we all have time to smell the flowers and feel the wind and stand in a waterfall.