Monday, February 22, 2016

The Night Shift

Here I sit at 2 am watching my husband sleep. The hum of the ventilator and the air mattress keep this room from being too quiet. The noise makes me feel like I am loosing my hearing. It's loud and quiet at the same time. He sleeps so peacefully. It's been a difficult few days for him, stomach problems and minor fever. Tonight is the second night that I am nurse. I am not good at sleeping during the day so I've had 4 hours sleep in the last almost two days. I worry about being too tired, it's easier to feel down and overwhelmed. I've already broken my diet fifty times in the last two days. Stress does that. The nurse cancels and I need chocolate. There is no point in fighting it. 
It has been three years since Yitzi's diagnosis and we have all changed so much in that time. I wish I was the person I used to be. So full of hope, so certain that our miracle would come any second. By now I feel like I have some version of PTSD. Three years running on fumes. The stress does not lessen ever. The problems become more difficult and we are all exhausted. I can't seem to focus well or remember things. How do people live in panic mode? The human body is not built to be under constant stress. It takes a heavy toll on me. Many days I would rather stay home then attempt a brave face in public. The effort to seem normal is getting unbearable. I find reminders of the life we had everywhere. They are both beautiful and sad to me. Watching fathers play with their kids, husbands and wives going out together, friends marrying off children. I wonder if people appreciate what they have. I try hard to stay away from memories at night. It makes sleep even harder, but tonight sleep is not an option so I have nothing to worry about.


  1. Dina, we're all thinking about you guys every single day! As we go about our daily lives, with much less on the stress front, we too crack, and from so much less! You are such strong people! May your strength stop being tested as yitzy jumps out of bed to continue on where he left off 3 years ago! We daven for you each day that this nisayon just disappear and yitzys health should be restored to normal. 100% better! May we hear Besuros Tovos immediately!
    The krinskys

  2. D-holding your pain, sending prayer upwards and to you for healing, strength and the ability to continue to "show up" for life in your gracefu Dina way. Love you all. Sending you my heart and holding onto yours...

  3. Dina, your raw honesty touches my heart and soul. Staying hopeful and brave in the face of such challenges 24/7 must be near impossible and yet you do it. You are managing to walk a tight rope that is high off the ground. You do it with faith, grace, dignity, compassion, humor, truth and chocolate. Where would we be without chocolate? Savor every delectable bite. It's allowed and even called for!! I'm sorry Rabbi Yitzi has had some stomach and fever problems lately. Our community carries you and Rabbi in our heart of hearts. You are on the front line, in the trenches. Thank you for reaching out as you do with your Caffeinated Thinker.

  4. Dina, my heart truly breaks for you and your family. I have no words to give you that could convey how much we think of you guys and how much we miss you.

  5. Saul Isaac Frommer 16 March 2016 8:30 PM
    You probably won't recall ever meeting me since a rebbetzin is likely to meet many people fleetingly. Mitzi will remember me, he has a good memory. Your blog really gets me all choked up and I feel that you demonstrate for all of us what it means to be "More precious than rubies." an eyshes chail. It sets a standard for the rest of us.

  6. Saul Isaac Frommer 16 March 2016 8:40 PM
    Please excuse my Apple computer for writing Mitzi even though I wrote Mitzi. One has to have the eyes of an eagle to catch it from writing what it thinks you want to write. And I corrected it elsewhere.

  7. Saul Isaac Frommer March 16, 2016 8:42 PM

    I give up. Apple is relentless and I'm too old for this. But everyone knows by now who Mitzi really is! He's one in a billion.

  8. We've never met but I heard of your story and follow your blog. I can't imagine how painful what you're going through is, and I think the feeling of people not understanding must be additional pain. All we can say is that our thoughts are with you and you are in our tefilos. May Hashem comfort you deeply and send the ultimate nechama of moshiach now.

  9. I just read your story in the April 20 issue of The Jewish Home. It came to Chabad of Sarasota a few days ago. I'm a member & work parttime at the desk.
    I don't know if you're aware that Hadassah Medical Organization (HMO) in Israel has been researching a treatment & cure for ALS. Early trials are very promising. Those trials are also being carried out here in the U.S. Check for the information. I'm unsure whether it's through the Nat'l. Institutes of Health or a research hospital here. I know that Rabbi Hurwitz has been ill for a few years now, but - I know I don't have to tell you this- hope & faith in Hashem are all we have for pretty much everything in life. I'm an RN who, years ago, cared for a women with ALS. She was afflicted many years after surviving the Holocaust. Ironic. We were able to communicate - I have no idea how. This was years before the technology we have now. Only Hashem knows &, as far as I can tell, hasn't shared the secret with me yet.
    Shabbat shalom & good Yom Tov.

    Lee Ruggles