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.


  1. Thank you so much for sharing and putting this into words...geulah now..

  2. You are one incredible human being and yes geula now!

  3. wishing you much strength to cope with the great challenges in your life. You are a role model for all and your writing is beautiful.

  4. I've heard you speak and I know your strength comes Hashem but I am still amazed.

  5. Dina thank you for sharing. I remember your words always when I called you desperately looking for answers when I first found out my dad needs a tracheotomy due to his ALS. You gave me such great advice and were so honest but it really helped us get through that very hard time. My dad passed away last year in June. I pray that all the people suffering this horrible disease will be cured with a new breakthrough. And for all the caregivers and families who suffer along with the patients themselves, may Gd give us the strength to move forward every day at a time and see the good in everyday as you do. We are still suffering those things you mentioned and will continue to suffer for time to come. You are an angel by his side and may hashem only bring your family peace health and happiness.

  6. Lastly I helped better say followed my dead to doctor's visit and hospital's stay even when the deases where not as your's husband state... I can understand very well in a way the impact of his situation on your life.
    My relation with my father won depth, but I was also much quicker affected to bad news on his health than before... I realize more than before that this situations softer a human beeing, make us very breakable and in the same time more human, more humble towards life.
    I already thanked Gd for this experience even when I have to deal with his negative reaction on his behave and it's confrontation to my person.
    I had to speak him on positive ways even when he was very enerved and I could't take his state of illness nota away. Much patience, honesty takes it but also looking after yourself and doing something good for yourself. Yes ... you have to because every person has to love himself and stay your own good friend in difficult times !
    Much support and love to you Dina !
    x Kati

  7. Dina, Thank you for being so brave and for writing your truth. I lost my husband years ago after fighting a cruel illness for 5 years. What you wrote captured the essence of that experience in such an honest and moving way. I know the experience can be isolating so I just wanted you to know that you have a sister out there, who completely understands the devastation of disease and living with loss. I am here for you if you need. Thank you again for writing this amazing piece.

  8. Wow! Just Wow! Thanks for sharing this.

  9. Dina,
    My heart felt more open the first time I heard you speak, last night I felt even more. I have felt so lonely as the daughter of someone who has had a neurologic disease. My days could be bouncing around emotionally from resentful, frustrated, sad, grateful, compassionate, loving and back to guilt. You beautifully described this space in this blog. Having all of these emotions move and shift daily depending on what is happening to a loved one is challenging. To thrive in this space families benefit from a container. The whole family is impacted. Our healthcare system does not address this. Our spiritual communities will more greatly serve people if we do. Because we have so many emotions around these challenging diseases doesn't mean we are powerless. I believe it means Haschem is inviting us into deeper relationship to learn where we need to show up and where to leave life in Haschems hands. For me this is a daily endeavor.

    When you shared I chose to have a happy home. I heard how you created this orientation. This was so powerful to express.
    A friend of mine is going for a biopsy this week heard you speak. I am praying for good news. In the event it is not news we want to hear, I now have a context to share with her and support her. Your speech created a common space and a language in sisterhood. This is very powerful, courageous and a deeper connecting context for women in our time. Thank you and I look forward to continue to read your humorous, heartfelt and inspiring posts. Andrea

  10. I don't have any pearls of wisdom or words of comfort, so I will just tell you how much I love you both!
    A zeesen Shabbos

  11. Rebetzin Dena,
    After reading your blog entry I primarily feel speechless. At the same time I want to honor you by saying thank you. In a funny sort of way it feels inappropriate to respond as I feel humbled by the small taste I have of who you are and what you are facing. Yet I equally feel it is disrespectful not to overflow the gratitude I have for your willingness to share with klal yisreal in an open and honest way. May Hashem bring the final geula and put an end to all suffering but in the meantime let Him give you the continued stregth and energy you need at all times!

  12. Dear Rabbanit Hurwitz, I have been thinking often of Yitzi,you,your seven children as well as Yitzi's Mom Brocha, who is so proud of her son. I have asked others to pray as well.

  13. Somehow I came across your blog. Thank you for this moving and accurate portrayal of the effects of caring on the caregiver. I too am the caregiver for my family. I often feel isolated and your beautiful post is a reminder that I am not alone. Thank you.