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!