It’s been over 4 years since my husband Rabbi Yitzi Hurwitz was diagnosed with ALS. That’s 2 years longer than we thought we had, thanks to the tracheotomy.
To say this has changed us would be too much of an understatement.
For the last 4 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 loss 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 affected 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. (These same symptoms would apply to people suffering prolonged abuse of any kind as well.)
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 he 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 the even worst answer, ‘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 than 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 2 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 referring 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, they are there to greet me every night instead of sleep.
To support the Hurwitz family, visit hurwitzfamilyfund.com
Thank you Dina for your deeply moving reflections, which highlight the duality of life in galus: you have support, yet you feel alone; you experience devastation,and you have gratitude; you look like “you’re holding it together” and you feel like you’re “falling apart.’ Thank you for normalizing physical, spiritual and emotional responses to extraordinary stress. As a mother in tremendous pain over trauma related to her children, – the kind of trauma that is private – and the kind of pain I never knew I could survive -I thank you for the permission your letter gives me to grieve and… Read more »
not all conditions are public and shared but there are so so many people dealing with long term illness etc. thsnk you for bringing that awareness
You write so beautifully, it is so painful, where is Moshiach? where?? Achake lo bechol yom sheyavo, but he needs to come right now! Ad mosai????????????????????????
for your deep and touching words…
i have been going through a different ordeal but your words resonate so much.
i am sending so much strength to you brave woman, may you know of no more pain
moshiach now!
Thank you for your words, Dina. I read your blog from time to time.
I have him in mind whenever I say Refo ainu in shmono Esray, and when I light candles and make a me shebayrach in shul every week. I feel in my heart that he will have a miracle and will make history by miraculously recovering to full health. I only wish and pray that it happen already NOW! Hashem should give you Dina, the strength to continue until you get to see that Miraculous day.
מה יש להגיד? נגמרו לי המילים
Thank you for sharing your deepest thoughts and feelings. The Abishter should bencht you and your family with yeshuas and all of us with Moshiach Now!
We need action – The oibershter will certainly do what he needs to. lets do what WE can go online NOW: hurwitzfamilyfund.com
Thank you for sharing
Thank you Dina for being so real. I am so sorry for all your losses. You deserve your husband and your life back. May your prayers be answered in the most miraculous ways possible.
tears tears tears
i cry with you
xxxxxoooo
For being so frank with us!You inspire us!
May Hashem bless your family with strength to continue your daily struggles strength to continue raising your knh beautiful family!
There isnt really much one can say to such an article:/ Heart rending, touching, beyond all imagination, unfathomable . . . these are immediate words that spring to mind Frustration also, and helplessness of being unable to do anything to ‘make it better’ or even to try and empathise How can we? What do we know of your pain and hardships? But Dina, I do just want to say thank you for sharing . . again, you remind us to put our lives into perspective, to value the real stuff, and try and move on from the smaller stuff. .… Read more »
Brilliant Absolutely brilliant. Thank you for your raw honesty and thank you for giving some of us in a similar situation validation for our feelings.