The adventures of a "Nebbach" - part 1

A few months back I made the decision that I was going to try and make a life for myself. Part of this "new life"was that I was going to get out more. Well this month I got out a lot more and had some unfortunate mishaps in achieving this goal. I have tried to make some sense out of it, but I can't so I have now decided I will try and laugh about it, rather than cry!

Episode 1 - on a day out with my parents we went to an indoor play area for kids. While I was there I asked my Dad to get me a coffee. He came back with a nice hot cup, and I took a few sips. Then I lost my concentration and spilt the nearly full cup over my legs. It was scalding hot, and really burnt. Baruch Hashem we were next door to our doctor's clinic, who treated me straight away. Even with 2 pairs of trousers on, I still ended with a small burn mark.

Episode 2 - recently there was a neighbourhood musical on in a hall in town. My neighbour had written the play and a few of my close friends were acting in it. So I was kind of obliged to go. On top of that I was also offered a free ticket. I went with a friend and sat through 3 hours of fun in a cold hall. Getting home was a bit of an ordeal - being shlepped into a taxi. On my return home I found that I had lost my gold wedding and engagement rings! The cold had made my fingers contract and they just fell off. Some calling round and search still hasn't turned them up.

I have accepted this loss as 'beshert', and as a 'kapparah' for something worse. After all, it is just a material loss, which in the bigger scheme of life is worth nothing at all.

Episode 3 - a friend was having a local bar mitzvah and wrote on the invitation, please come there are no steps. So shabbos morning I got dressed up, and my son Yehuda pushed me up the hill to take me there. Unfortunately there were 3 small steps to negotiate to get in - but we managed. It was a little crowded inside, but it was nice to see my friends. Coming down the steps, the wheelchair got stuck and I was tipped out to fall flat on my back on the pavement! Apart from the embarrassment, I got some nasty scrapes on my knee and arm.

Episode 4 - another friend was making a bar mitzvah in a wheelchair accessible hall. So, braving the cold weather I went out in an evening to wish her mazal tov. This time I managed a small loss, but it still bothered me nevertheless. I mislaid my cheap fingerless black gloves. The next day we called the hall and found out that all "lost and found" items were just thrown out in the garbage!

Well, by now I was feeling a real nebbach...Was it really worth going out if "disasters" were going to happen everytime?

Episode 5 - determined to break the pattern, I went to the 3rd bar mitzvah. This time, nothing happened....

So what can I get out of all these mishaps? No, I am not really a nebbach. But I hope there won't be a part 2 to this story. I just have to get on with life whatever happens, and take the "ups with the downs". I have just orderd a new engagement ring, so my short period of being "single" will end soon!

what it's like to be "OLD"

I guess a lot of people who reach their 40's ponder what it would be like to age and be old. Well, for me I don't need to worry as I already know what it's like to be "old".

I have also had the wonderful experience of spending 10 days as a resident of an old peoples home. A lovely place, but terrible care. At breakfast time, many old people were just falling asleep with their heads in the porridge and noone seemed to care. In the evening, some people were just abandoned in front of the TV.

Being "old" for me now is not being able to care for myself, constantly worrying about going to the bathroom and being too tired to go out and have fun. Also continual complaining and moaning about pain, and discussing medications with every person I meet.

So being "old" is not so terrible really - anyway with 3 kids under 10 I can't be a real Bubba!

Who is in control?

Most of my life, I have felt in control of my days and plans. As a young "Yuppie" I did what I wanted, worked hard, earned good money and only worried about finding a husband.

As a "young" married, things didn't quite go to plan. Number 2 child born with a serious heart problem, money problems, no job etc. But still I felt in control.

Then bang, age 44, my health goes and my life is totally "out of control". But I am still stuck with this control obsession Looking back over the years prior to my disability, I often wonder if could have done something to prevent it, as I hadn't really felt 100% well for a number of years.

Even now, I haven't learnt the lesson. I try to plan my days and things go wrong. This week, my physiotherapist said I must spend more time in a chair, and less time in a wheelchair. The next day, as I was out walking and a wheel fell off my wheelchair and I was forced to sit in a chair most of the day!

So who is in control? There is a good yiddish saying that encapsulates this well:
"A mensch tracht, und die Ebishter lacht".
Roughly translated, it means a man makes plans, and Hashem laughs!

4-wheel drive

Yes, there has come a day when I can use a 4-wheel walker! Not an easy thing to do when your body and legs are like a wobbly-bendy doll...

With 4 wheels the walker can go real fast which is a bit of a problem for me. There are brakes and a seat, but even these are difficult to use. I guess it's like all my other equipment - push weelchair, standard walker, leg casts - in the beginning they were all hard to use. Right now, I need very close supervision to use it. But in the future who knows?

Now winter has started in Israel, getting to walk outside has become more difficult. So I guess I'll be trying out the 4-wheel drive around the house.

Disabled or Physically Challenged?

I don't like putting labels on people for any reason - from religious outlook to political views. But just recently a friend recently asked me how I would describe myself. So I have a dilemna.

In Hebrew, it's OK as I only know one word, and I usually only use it if I want help. In English, though, I don't like any of the words you could use:

Disabled. It could be either mentally or physically. not me

Handicapped. Same as above.

Wheelchair bound. Not strictly true, as I can walk with a walker (as long as someone is near me to catch me if I fall!)

Sick. Could be anything from terminally ill to sick in the head. Too broad a description.

Physically Challenged. Very politically correct and in my case also technically correct. But it doesn't really feel like me.

Actually I just would like to describe myself as "NORMAL", because that is how I see myself. Does anyone else have some other ideas? Just don't say crazy!

One of my legs needs oiling

Well, not my leg actually, but the leg cast needs oiling. Everytime I walk it squeaks!

This is an update on my walking progress, and general attitude to life.

After 2 years of being wheel-chair bound I am fed up of doing exercise for the sake of it. My phyiotherapists set me lots of boring exercise to do on my own, like lifting my legs up, sit ups, playing with plasticine etc. Mostly these exercises involve lying in bed, sometimes with the help of my care-worker. I just can't motivate myself everyday for at least 30 minutes. I need a life!

So this year, I have decided to do things I like doing. Walking outside is fine, and I can now walk to the nearest supermarket, which is very exciting. Today I walked inside a shopping mall which was fun. I have been making jewellry with a neighbour which is fun. And I have also set time aside for learning which makes me feel good.

Apart from this, I am going to make an effort to go to Simchas even if I am in pain. I went to an engagement party yesterday for only half an hour, enjoyed it and still feel the "simcha"now.

I still feel I only have "half a life", but I am working on trying to make it more fulfilling.

Living one day at a time

Friends have said to me why don't I write more often. There are 2 main reasons. Either I haven't got anything humorous to say, or there is no "big message" I have to pass on to others.


Well, these last few months have taught me a big lesson in life. So now I feel I want to pass it on...

When we had to throw out in May our live-in careworker for stealing, I was scared. Even though I hated her, I had come to rely on her after over a year of her being with me in our house. But we had a new girl lined up so it shouldn't have been too traumatic.

Well, I was wrong....the girl left after a week and we had 4 months of temporary help. That meant training 7 different careworkers and training lots of girls/mums how to run our house. On top of this, this "episode" fell over the summer vacation when our kids weren't in full time school. So they needed to be amused as well.

Everyday I thought we wouldn't survive - no cooked meals, clean clothes, plan for the day etc. But we did survive, a "miracle" help always turned up in the end. Now I really know who my friends are!

But the main thing I learned from this difficult time was to trust in G-d and live one day at a time. Not an easy lesson, and I am still working very hard on the "trust" element.

Being positive about pain

Having climbed out of the depression pit, I am now struggling to be positive about pain. It is constant pain to varying levels, getting worse at night.

It is hard to describe neuropathic pain, but it is like pins and needles (and stiffness) in my hands, feet, legs and even mouth. Most painkillers have horrible side effects, and if I take them in the day I am sleepy or I can't even feel my legs.

I keep hearing about these wonderful Tsaddikim that remained positive and upbeat when suffering tremendous pain or terminal illnesses. One always wonders how you would react under those circumstances. Well for sure I am not on such a high Madrega. I complain a lot and can't accept my situation with joy. Give me an answer, what am I doing wrong?

Long time, no blog

I always had in mind to keep this blog upbeat and positive. But the last 2 months have been a real struggle healthwise, so I wasn't even able to face thinking of blogging. Worst of all, my spirit of optimism just evaporated. For a normally rational, in-control person this was very hard to face. Anxiety, depression, inabilility to sleep, not being able to work, not being able to exercise, read, or even listen to music ....

Yes, I do have new health problems. Some of them are perplexing to doctors. I just want answers, treatments and to get out of this slump. Maybe moaning like this will do the trick?

Hopefully I will be able to look back on this entry and see progress.

Happy 46th birthday to me!

My cute girls

A fun snap of Rivki and Tsipi taken on a cheap webcam. This is a typical shot of both girls in pyjamas at a time well after "going to bed time."

Yes, we have an expensive digital camera now, but it's too difficult for me to use! Hopefully I will be able to snap the other 2 cuties soon - Chavi and Malki

Walking on my own

A new milestone for me. I have walked around the house a few times with my walker and leg supports, and no one following behind me! Scary at first, but the worst case I fall. As my physio advised me I can remain in a glass box all my life, or try and go for it and make progress.

Well, it has given me a great feeling of freedom. I am still very cautious and mainly walk to the bathroom and back, but I guess this is just the beginning...

On the negative side; constant pain, infections and tummy problems are bothering me. Am waiting to start new painkillers which I hope will help.

A change of face

Actually this is how I really look: smiling, nice hair, no glasses.

Most old friends will now recognise me from this new photo!

It is impossible for me to put my Sheitl on alone, and I haven't been able to teach my careworker how to do it well. I now look forward to teaching my occupational therapist how to do it easily and then she can teach me ...

Pumping Iron

I used to enjoy exercise. In the last 10 years or so I had little chance to exercise much. I always used to bemoan this fact and look forward to devoting more time to it.

Well now the time has come. 3 times a day (for at least 20 minutes) I have to lift weights and strengthen my muscles. On top of this I have to find time to walk outside twice a day. This takes about 30 minutes per session. To find time for all of this I have to take time out from working, being with my kids, davvening, and speaking to friends.

It is hard to understand why this should be my "tafkid" (role) right now. It doesn't feel right. I know this must be my main focus for the coming year if I want to recover a little.

My father gave me some sage advice before Rosh Hashana. I have to hope that my children, husband and friends will learn from this. When life throws you obstacles you don't give up, you put your maximum effort in and trust in Hashem to get over the hurdles. I have a few good role models to follow, but I am looking for more...

A different Rosh Hashana

This year I thought I might get to make an appearance in Shul and pray a little bit. Well, it didn't go as planned. My booked help didn't show up, and I was forced to stay at home. So I got to be a regular Mum again and play with my kids. Very different from last year!

Yet again, a few wonderful friends came to the rescue and lifted my spirits. A dear friend made me walk there and back down the street on the first day. Then on the second day, I got to whizz down my ramp and visit another friend 'round the corner. I haven't been to that street or her house in over a year!

So, all in all, it wasn't a very spiritual Rosh Hashana. But minor health ailments over the 2 days made my personal prayers intense. And now my spirits are raised for the coming year as I can get out of the house and visit people.

Reflections before Rosh Hashana

Last Rosh Hashana I spent a lot of the time in Shul. More than I have in the last 12 years. But this wasn't a regular shul. It was the hospital Synagogue of Hadassah Har HaSofim. To get there was no easy walk. My parents came to the rescue. We had to navigate the long corridors and troublesome shabbos elevators. Up and down, stuck on the 6th floor, almost getting caught in the closing doors. Quite an ordeal....

What an interesting mix of people in shul. All types of kippot, hats, women in trousers, doctors, nurses and of course people in wheelchairs. I felt "Am Yisrael" very powerfully there and was happy to be in Israel. But concentrating on the davening was hard - especially when the Minyan split up into Sephardi and Ashkenazi. Sitting outside I had a stereo version of the prayers.

As to my state of health. Well, it was rather feeble then. After a few hours in the wheelchair I would feel dizzy and sweaty. I could hardly feed myself and I couldn't stand up at all. But overall my mood was positive, I davened hard, and I was sure that quite soon I would be back to normal.

Well, here I am a year later and I am still in a wheelchair. My mood is not so positive now even though I have come a long way. I have to think about the coming year, and worry how I will be judged. I was given a test, but maybe I failed it. I haven't had any amazing insights or revelations yet on the purpose of my test. Did I miss opportunities for changing for the positive?

Yes, I am still the same person that I was last Rosh Hashana. Just maybe a little bit more grateful for what I have (bli ein hora). 5 beautiful children, a comitted husband, living in this holy city, a little work and my mental facilities. As my physiotherapist said "You need to see the glass half full, not half empty."

To a Shana Tova!

New hairstyle and walking clothes

Does 3 needles stuck in your head count as a new hairstyle? Another form of accupuncture I underwent today.

Yes, I think I am experiencing all types of pain in my current experiences. The pain is what bothers me most right now - forget the walking! But the doctors say the pain may be good ie. a sign the nerves are repairing. As the saying goes "no pain, no gain". Let them suffer it...

One "benefit" of my walking/wheelchair situation is that I get to wear all trendy clothes now. Bright colored tracksuits, expensive trainers and the new Israel fashion - a one-piece skirt and trousers. Problem is this style doesn't go down too well in our frum neighborhood. But I have no choice, I need to be comfortable and I have to see my legs to be able to walk. Anyway as I am always looking down when I walk I don't see peoples' surprised faces.

I walked the street again today (plus a little more). Just waiting for our ramp to be finished and I will be out and about again.

A marathon walk

Up until now I have only walked indoors, which is quite limiting. Two or three circuits of the house and I am bored and ready to give up immediately.

So on Shabbat, egged on by a good friend I got to walk outside. With her help and distraction I walked the lenth of my street. It felt like running the marathon! But it is only 100 metres or so. It also took around 20 minutes, and I had to perform it in front of an audience of friends and staring Israeli children.

Not to be outdone, I did the marathon walk again today. With my physiotherapist I had to walk properly, and that was hard. I also walked up our half-finished ramp.

So how do I feel now? Not really elated like after a real marathon. It's just that I have a new goal now - to walk to the end of the street and back!

Even robots can make a cup of tea

Yesterday I finally collected my legcasts. I had been eagerly waiting them for the last 2 months in the hope they will change my life. They will make me walk like a robot, but in the words of a good friend "Even robots can make a cup of tea". If I could just make a cup of tea on my own, life would be wonderful!

So today, I couldn't stand the suspense, I just had to try them out. First of all they don't fit in my shoes, so now I have an excuse to buy another expensive pair of sports shoes. Well, without a physiotherapist training me they are very hard to walk even a few steps. Right now I prefer my own legs.

Well this is the next day. Today the physiotherapist came, and showed me how to walk. It was still hard, but I was walking more like a normal person and much more steady. There is hope! So later on I decided to make a cup of tea. I did it - with the help of my careworker and not on my own - and it tasted good!

This is just the beginning and there is a long way to go towards walking on my own. But as my physiotherapist said, just set you yourself small goals. A lesson for everyone.....

Be Be'Simcha

I try everyday to keep a positive outlook. I try everyday to keep a sense of humour. I try to smile to people everyday. I try to write only funny or interesting stories in my blog.

I like it when friends come to my house and sing for me. I like it when friends invite me to their Simchas. I like going shopping and treating myself to fun things. I like listening to all kinds of music on my MP3 player.

All these things I believe have a positive impact on my physical health.

Yesterday, someone said to me (via my husband), be be'Simcha about my health problems. I was quite cross at the time when I was told this. The advice-giver does not exactly go about with a happy face and he doesn't have apparent health problems. He doesn't have to endure the constant pain that I have all the time. This is an insensitive comment to say to an "ill" person!

Afterwards, my husband reminded me of what the Baal Shem Tov says. If anything bad happens to you or people say bad things to you, then this is a message from HaShem. We have to look for the meaning from it. I am trying to do this, but haven't had the revelation yet. I hope it comes in this lifetime...

Meanwhile trying to be be'simcha, but just don't say it to me.

A strange measurement session

Today was my day for going to Tel Aviv to be measured for plastic leg casts. I have been waiting for this for 2 months now while all the bureaucratic paperwork was being sorted out. The secretary told me to come wearing shorts to make it easier for measurement. The whole thing was supposed to take half an hour. Not much to worry about I thought - apart from finding the place. Well I was in for a shock ...

After a long wait, Ronnie asks me to go in a room that looked a bit like a morgue. Then I was asked to take lay on a bed and take my sweatpants off. Then 2 men proceeded to cover my entire legs in bandages and plaster - right up to my knickers! After a few minutes the plaster hardened and then I was immobile. No, problem. Along comes Ronnie's sidekick with a hand-drill and cuts the plaster casts in half and just manages to miss sawing through to my knee. Then comes the fun bit, trying to shower off all the plaster which had stuck to every part of my leg. Not to forget my knickers which were as hard as concrete!

And I just thought the man was going to get a tape measure out to measure me up.

On a sadder note, it pained Moshe and me to see how many children were at this place being sorted out for leg casts. Some of them had never walked properly in their whole life. At least I got in over 40 years of walking normally. We just take these things for granted.