Everyone has issues with their body. I’ve never met a woman who didn’t want to change or fix something, from nose, to scar, to weight, to hair color. But not everyone is at total war with her body.
I was injured in a car accident in 2006, and since then, my body and I have been two separate entities. My soul, my inner self, it still dreams. It has high aspirations for myself and my family. The inner me can fight on and make things better.
But my body, my body feels differently. A good day is how I imagine a 100-year-old feels. On a bad day, it’s too hard to imagine anything. My body not only physically stops me from doing all of the things I’m yearning to do, but it beats me down. It breaks my hope.
It wasn’t always like this. Right after the accident, I was convinced I would get my old body back. I had suffered mainly orthopedic injuries and it made sense that hard work would get me back on track as an actress and dancer. But every therapy, treatment, and intervention yielded a new complication. Apparently, I was born with “Ehlers Danlos Syndrome,” and it erupted, as it were, after the accident.
Ehlers Danlos Syndrome affects a person’s connective tissue and causes problems across the body’s system, ranging from skin, joints, heart issues, allergies through digestive track, autonomic dysfunction, and more. Symptoms can be extreme and all-consuming. Or they can be nearly negligible. In my case, chronic pain and disability are here to stay. I’ll never again be the same carefree athlete I was. It’s as if I’m living in a completely different body — one that has damage from surgery, from the dislocations that are a main symptom of my condition, and from the comorbidities that have emerged with it.
I learned to live beside my condition, rather than try to fight it. At first, I insisted I would never sit in a wheelchair. But I soon changed my tune, because that wheelchair allows me to be part of society, of life, even when I can’t manage to stand. I refuse to allow the syndrome to shut me out.
Most of the time, I need help with all basic physical activities, from carrying a backpack to picking something up off the floor. There was a time when all I wanted was a break from my body. I figured, if I couldn’t trade my body in for a better model, I might as well get rid of it.
But then my miracle happened.
My firstborn. She not only gave me a reason to live, but also made me realize I could manage whatever I needed to, with this body. It might torture me, or trip me up, and even embarrass and isolate me, but she was the balm to all of that.
To be sure, the medical evaluation of my pregnancy predicted otherwise. The doctors catastrophized how the pregnancy would end, and I calculated the horrible toll on my body. Yet, somehow, my double-crossing remnant of a body grew her. Against all odds, she grew inside me, and even thrived.
I’m so grateful to say that I’m now the proud mother of three wonderful daughters, but this is not the “happily ever after” story we all want it to be.
* * *
In the years following my accident, friends, family, boyfriends, and, eventually, my husband took on the role of carer for me. While we were still married, we tried (and failed) to obtain full time legal and affordable help. We were shunted from one government branch to the next, as we tried to understand what was getting in the way of what seemed an obvious need with an obvious solution.
When my husband and I divorced, we agreed that I would continue as the main household for our girls. It was clear that help was an absolute necessity — the kind of help that is akin to oxygen for someone like me, the kind of help that would enable me to live as a functioning adult. I was determined to obtain it, convinced I would solve this problem once and for all.
No specific entity takes responsibility to help those with disabilities. Israel’s solution was to bring in foreign workers for this purpose. But they are neither government funded nor supervised, so what was once a relatively cheaper option than hiring Israeli workers has become extraordinarily expensive. For example, a full disability stipend is 3,700 NIS (about $1,090) per month – which is less than minimum wage, and the foreign workers who help those with disabilities are paid far more than minimum wage. Moreover, once the carers have arrived in Israel, they can leave the given employer who arranged for their visas, partly due to the open market, and partly because of the imbalance of rights of foreign workers versus people with disabilities. And that employer-hopping can leave the original employer in a vulnerable predicament. Thus, oddly, Israel’s laws, and, ironically, a lack of regulation, prevented me (and many others) from hiring full-time help through the correct, theoretically affordable channels in Israel.
Instead, I hired hourly workers — an expensive proposition, and untenable in the long run. In the end, I fell into the same pit as so many other families: I was stuck, without secure stable help. Providing for my daughters’ basic needs strained my physical capabilities to their maximum.
About two years ago, my body gave out and I collapsed. I no longer could protect my daughters. I scrambled for ways to provide them with basic care. I recruited my community to our aid, but there was only so much anyone could do. If I had had the help I needed, I would have managed. But my body continued to deteriorate, and caring for my girls became more challenging. At some point, I felt I was putting them at risk.
Ready to try anything I could think of, I alerted authorities — including Israel’s version of welfare — to my concern. Surely they could help a family in crisis? There are government policies in place that provide an array of solutions (and funds) to keep struggling parents together with their children. Almost at any cost. Even when the parent is battling drug addiction or is a convicted felon, the government invests money and manpower to do what is needed to keep parent and child safely together. Not so when a parent is physically disabled, however. The social workers — themselves frustrated with this broken system — showed me the written bylaw that prevented them from helping a disabled parent: officially, it is the responsibility of another government branch, Bituach Leumi, National Insurance. When I turned to those offices, however, I was told that Bituach Leumi wasn’t responsible after all. And the welfare authorities warned me that if I continued to demand help, they would have no choice but to find someone else to raise my daughters for me. It would seem that Israel would sooner invest a magnitude of funds to remove the children from the home of a physically disabled parent than to invest much less, and keep the family together.
By that point I was barely hanging on. I was fainting, dislocating limbs, and completely disheartened. I could no longer get to my therapies or care for myself or the house. I could barely get my kids to school. My breaking point came the day my then-3-year-old asked for water and I couldn’t pull myself to the wheelchair to get it for her. That’s when it struck me that we could not afford to wait for tragedy to strike. It was the most agonizing decision of my life, but I removed my children from my care and their home.
Fortunately, with a lot of effort and on shaky ground, the girls were spared foster care. They stayed with their father, and occasionally other relatives. But it should never have come to that! My daughters lost their only stable home and reliable attachment figure, their safe space, their confidant. At the end of the day, my kids need their mommy. I am their place of refuge. I know when they need a hug, how to calm them when they’re anxious. I love them as only a mother can. We grounded each other, and when they left, the world shattered to pieces for all of us – for them, for me, and for their father, who was overwhelmed in his new role as sole caretaker of our scared and angry little girls.
My physical disabilities are manageable with the right assistance. No loving and good mother – and I am both – should have to give up her children because the system denies her aid. Yet, the torment of struggling to keep my children with me wasn’t the worst of it. That was my children having their lives turned upside-down, their bonds broken, their trust shattered — when their only fault was being born to a disabled parent.
* * *
I’m choosing to share my story because stories like mine are not as unusual as one might think, but they are rarely heard. Disabled parents are often too broken down both physically and emotionally to have the reserves left to make our voices heard, and to fight bureaucracy. Managing health crises as our bodies decline, without the proper care and support, is the most many of us can do.
I write in the hope that I can help prevent the next family’s suffering. My cries for help fell upon deaf ears, repeatedly. That shouldn’t happen. Disabled people CAN parent, and there’s no shame in needing some help to do so. Truly, doesn’t everyone need help, in one way or another?
During my months of crisis, friends and family suggested a civil rights lawsuit against the Israeli government, and entering politics to change the system. These are welcome ideas, but they take years, and we didn’t have years. My kids need me.
Our flawed and makeshift solution was to fundraise enough money to privately finance any form of help I could find – and secure massive loans in between. With costs being what they are, I need approximately 250,000 NIS/year (some $74,500) just to finance the help. That’s what it costs just to keep my family together. It’s an incredibly stressful way to live – needing to fundraise for the basic help that my disability requires.
Better would be governmental recognition of the cracks in its system, and the necessary measures that would assist disabled parents, including establishing and upholding policies regulating foreign workers as carers. Israel’s ultimate goal should be keeping families together, and safe. To this point, Israel has failed me, and it has failed my children. Circumventing the system has brought my family together, and my soul is complete again, but how much suffering did we endure to get to this point? How much lasting suffering did our separation imprint on my children, even now? The worry I see in their eyes whenever they see that I’m not feeling well, for example. They fear another separation. I remind them that I won’t allow that to happen, and we bask in each other’s presence for reassurance, for comfort, for grounding. But I worry too; it’s why I am so focused on funding the help that enables my family to function.
Having to navigate a new disability as an adult is tough — and it is inevitably unexpected. It can happen to anyone. Let me repeat that: It can happen to anyone! That is why the government needs to pass legislation that would support families like mine. The trauma of my accident recharted the course of my life. But I am no less a person than I was before I was disabled. My children need me, their mother, and not another mother.