Greetings! After nearly 8 months and thousands of dollars later, I have mostly recovered from the digestive crisis that made me balloon 20 lbs., put me in the emergency room several times with severe abdominal pain and routinely left me vomiting…among other things that would fall under the category of TMI (too much information). It was a really, really hard 8 months recovering from high doses of Ibuprofen and the negligent dentists who had prescribed them after pulling my wisdom teeth in April, a procedure I am still recovering from.
Now comes the harder job to recover from the damage that has been done to the rest of my body from the endless
fibromyalgia flare-ups, all that weight gain–(sorry readers, who saw that
infamous photo on Hadassah Milner Sabo’s blog from
blogger Chaviva’s wedding, I was NOT and nor have I ever been pregnant, folks), the lack of sleep, the chronically inflamed joints and the newly diagnosed and incredibly connective tissue disorder/disease.
My new doctors here are helpful. I’m doing physical therapy every week and all kinds of other things that my health insurance did not cover in New York. It’s expensive, especially as my husband is still underemployed and I can no longer write those snappy articles or take those speaking engagements I used to do, but that’s life. I have to hope that someday I’ll get better, if not better enough to go back to teaching then better enough to have a quality of life that is infinitely better than it is now.
My little sister made me promise that this year, I would keep to last year’s resolution to “focus on my health” and she also added that I had to “start being BRUTALLY honest about it.” She said that friends who had repeatedly called me “a hypochondriac” or consistently belittled me and my health problems were “no friends at all.” She said I had to stop taking care of other people because it was about time I started to take care of myself. She also added on my 30th birthday (on July 31st) that she thought if I didn’t do these things RIGHT NOW, she was afraid I wasn’t going to be around for my 35th birthday.
Honesty hasn’t come so easy to me. Growing up with a mentally ill mother who lied pathologically, I found myself unable and unwilling to lie even when it would have kept me safer than telling the truth. This earned me nicknames like “Goody-two-shoes” and “Mother Theresa” and prompted relatives to wonder if I was going to grow up to be a nun. (Nope, a rabbi’s wife!) But like many people with invisible disabilities, and I imagine visible disabilities, I have learned all too well to cover. I often pretend to be healthier than I am all the time because I know that most of the time when people ask, “How are you doing?” they will tune me out if I tell them the truth or they’ll (yawn!) accuse me of being negative when I’m just giving them my health “weather report.” Don’t ask if (quoting Jack Nicholson in “A Few Good Men”)”you can’t handle the truth!”
Sometimes, I cover so I don’t have to deal with the (AHEM!) unasked for useless health advice, sometimes so I don’t have to explain what I have and how I got it for the hundredth time (now immortalized in my brain like the story of how and why I converted) and most times because I seem to run into a lot of hurtful people who make fun of my health problems as if I’m in on the joke. I’m not.
I know I can’t continue to surround myself with these kinds of people whether intentionally or unintentionally hurtful. I keep waiting for them to change but they don’t. They make fun of the fact that I have to watch what I eat so carefully, they make fun of all the medicine I have to take, they
angrily shove unasked for health advice in my face and even call me “crazy” and “weird” when I need to get up and stretch my aching joints “AGAIN” or have to cancel because I don’t feel well “AGAIN” or I have to leave the room “AGAIN” or I tell them I can’t shake their hand or accept a hug–too painful–“AGAIN.”
Lloolwa Khazoom, an Iraqi-American Jewess who writes the amazing “Dancing in Pain” blog, says this of covering when you’re dealing with invisible disabilities:
The problem is that not only can’t people see my disability, but they also, for the most part, have not received awareness and sensitivity training in how invisible disability works – what it’s like to be in the mind, body, and spirit of the person who is disabled. So when I request disability accommodation, in the most polite, gentle, reasonable way possible, mind you, I still can be perceived as a pain in the ass, a control freak, a bitch, a “who does she think she is” type.
“The groundskeeper of my apartment complex hates me for being disabled,” I confided in someone I met at conference last month. “No, he hates you for having a voice about being disabled,” she replied. Good distinction.
The backlash wears me down, to the point that I am afraid to ask for accommodation. Because I don’t want to be perceived in the ways people end up perceiving me. So often in this world, rather than critique a system that is causing suffering, people condemn the person who is suffering and is strong enough to call attention to that system.
I really, REALLY want to hide out. The problem is, where?
Unlike Loolwa, I have found that often, I can hide at home…well, unless those insanely loud leaf blowers and lawn mowers are going. In some ways, I am lucky that I was a homebody as a kid–yes, even when my home life was so dangerous to my health and my mother often out of her chronic paranoia kept us home shut away from real life. Friends worry that I’m bored, especially those who remember how fast I used to move (like an out of control speeding train ala the new “Unstoppable” film) but thanks to technology, the UPS guy, an incredible local library, a Kindle and some wonderful friends and fans, I am rarely bored though I am still incredibly frustrated by all my new limitations and more so by the way they seem to make others uncomfortable.
If my health makes YOU uncomfortable, imagine how it makes ME feel!
I have found that having to take it much easier than when I was blogging, freelance writing and doing speaking gigs full-time and incapacitated by Friday before Shabbos, I have been able to do a lot around the house I couldn’t before. Thanks to a handy Ikea laundry sorter, I can now do my own laundry…even if I can’t put it all away at once. I can do the sweeping even if the mopping is too hard for me. I can get a lot of cleaning done in 15-minute bursts of energy with 15-minute rest breaks mixed in sporadically. My husband would like me to do some cooking, too, but that’s because he doesn’t remember that he was always a much better cook.
Sometimes, I’m not hiding though I am home quite a lot during the worse of the flare-ups. Sometimes, it’s just too hard to leave the house, to hobble down those stairs and some days I need hours and hours of sleep, needing to catch up on sleep I’ve missed because of my whole body muscle and joint pain. Sometimes, these days I need days or as much as a week to recover from one Shabbos meal. Other times, I can’t tell figure out how to tell a host that I can’t come over anymore because their children are so loud, no amount of painkillers can save me from the aftereffects. Sometimes, I need to recover from hobbling down the stairs and to the movie theater and being asked to remove myself from the disabled seating because I’m not really disabled.
It is sad that now almost four years since becoming disabled and having to leave full-time and later part-time work, I am still shocked when someone asks me, “How can I help you?” or “What can I do for you?” and really, really genuinely means it. Despite all these health dramas, I have discovered a handful of friends who have awed me with their amazing, endless sensitivity. Sometimes, it’s pregnant and sleep deprived mothers who are also dealing with aching joints, sleepless days and nights and “brain fog” similar to my
fibro fog. Sometimes, it’s older folks who along the way have developed health problems and like me, have learned to cope with them through patience and a bit of dark humor that scares the
youngins in the room. Sometimes, it’s people of every age and situation who have chronic invisible illnesses themselves or are loved ones and caregivers of chronically ill people.
I am still helping people however I can. I can’t seem to help myself from doing it! I try to conserve enough energy to send an email to a convert who is struggling through the process or a Jew of color who is ready to leave Judaism or a newly religious Jew who needs to ask someone “those embarrassing questions” they feel they can’t ask anyone else. Perhaps when my face is better, I can go back to Skyping and phone conversations, too. It’s nice to hear your voices!
These days, I’ve added a co-moderator to my online support group for converts and I’ve reached out to other notable bloggers to help handle some of the letters I get. I find that most people genuinely like helping others and if I shoot out a quick email, I can help someone just by connecting them to others in similar situations. If anything, developing chronic illnesses, has taught me that there’s plenty I can’t and shouldn’t do and more times that I should ask for help even if I’m reluctant to do so.
Anyway, if you don’t want to miss these sporadic updates, be sure to sign up to receive posts via email (just enter your email address under my photo and important links). By the way, the photo isn’t updated. I got a pixie cut at a local Dominican hair salon (
Dominican Elegance Salon), where I got to practice my Spanish and repeatedly say in total wonder:
“Oh-my-G-d, I can’t believe there are other Dominicans in LA!” They even told me where to buy plantains, yucca and some batatas (a type of sweet potato that grows in the Dominican Republic) for Thanksgiving and beyond!
Speaking of…happy Thanksgiving all! If you’re keeping Shabbos the following Friday, it’s probably best just to stop eating now because by Sunday, you will probably have eaten enough for the whole year. Also, I know it won’t be an easy one for many of us. I know so many of you are struggling with financial problems, health problems, conversion problems, family problems, relationship problems…but I find that if I take the time to look deep down, there’s always something to be thankful for. (Yeah, my aunt who loves Oprah is so proud now!) It might be something small or seemingly insignificant but sometimes, it’s just want you need to get you started on a list of other seemingly small, insignificant and overlooked things that make life every day a little easier.
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