Written by Dina Hurwitz
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 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 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 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 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.