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.

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

The Space Between Reality and Memories

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.