A starting point. I have just sent off this email:


Dear Mr Regional General Manager of the biggest and formerly government owned telecommunications company in Australia

I am writing to seek Telstra's assistance in regard to communications for someone with a very special need. At this point I am not sure exactly what is needed, but Telstra/Bigpond is my starting point. I am hoping that, as the Area General Manager of Telstra Country Wide you might be able to help in some way - at the very least with putting me in touch with the right people to help me work out the best options for internet access for this particular person. At the most? - well... I have my fingers crossed.


I have come to know a young woman, Donna, who, due to a progressive muscle wasting disease (Polymyositis), is permanently confined to hospital in Coffs Harbour. (She is the mother of my daughter's friend - and, at 38 years old, I consider her young. Too young to be living this sort of life...) She cannot walk, and she has a tracheotomy - where she is connected by tube to oxygen to help her breathe nearly 24 hours a day. She can talk, but because of the tracheotomy, her voice comes out as a whisper, which, I have to say, requires intense concentration to interpret.

Naturally meeting anyone with such a condition gives you a cold hard reality check on your own life (and makes you realise how lucky you are.) Imagine being so immobile. Imagine living in hospital, and not being able to see your daughter every day. That would be hard enough. But due to the oxygen requirements and this tracheotomy, she is basically without the ability to communicate in a way that most of us take for granted. She can't talk on the phone, so she relies, for social interaction, on the visits by family (who live 30 km away ....), the occasional friend, and the transient contact of the nurses and medicos in the hospital. Many times I have had to brush away the tears as I left, imagining how dreadfully lonely each day must be for her. Other than looking forward to those few visits, the only other thing she can do each day is watch TV or movies, or read books or magazines - all so passive. In the short time I have known her, I can see that she not only has to deal with the physical aspect of her condition. The emotional rollercoaster she must be on doesn't bear thinking about. Most of the time she is amazingly upbeat, but already I have seen her at times when she is at a very low ebb.

Since she has been moved to the rehab section of the hospital, she has been allowed to have a mobile phone on - so sending text messages has given her some small 2-way communication with some, particularly her daughter. But basically that is it for communication.. and it's not enough. Even I am frustrated because there is only so much I can talk about with her via text message.

I take my internet access at home for granted these days, and I have used it for some years now as a window to the world. When my husband was working overseas for long periods, it was a sanity saver... for not only could I communicate with him via email and instant messaging, but I have made new friends all over the world through bulletin boards, and, more recently, blogging. It struck me that, as a communication medium that didn't require voice, having internet access might given Donna another dimension to her day. If nothing else, a daily email or 'chat' with a few friends, would give her some more social interaction.

I have liaised with one of the Occupational Therapists at the hospital, and she is very much behind the idea. We did look into the chances of broadband access via the hospital, and as I expected, it is not possible for patients. Bureaucratically, the OT's hands are tied, so it is something that we'd have to make happen ourselves. As you can imagine, there's not a lot of wireless internet access you could afford on a disability pension.

She would be allowed to have mobile access - via the Next G network I gather. And so this is where Telstra comes in...

What could be done for her?

She has use of a laptop, courtesy of Technical Aid for the Disabled, but other than that it is running Windows Me, I'm not yet sure of all its specs. Once I find out what is possible, and what is needed, I know my husband can check that out for me, and also help with installation etc.

I am determined to find some way of getting the internet for Donna. (For once in my very fortunate life I would like to make something good happen for someone else.) I will seek financial assistance from any community organisations that I can, and fundraise if I have to.

Other than advising me of the technical necessities and appropriate plans, is there anything that Telstra can do to help?

Thanking you for your time... I hope to hear from you...

Tracey S.........

Labels: reality checks

... I think.

On Friday I turned the corner (says she, full of cliches..) in terms of my back. A much relieved and happier girl visited the chiropractor, who gave the go-ahead for swimming that night (without kicking hard), and bike riding on the weekend. I swam and felt good. And I got up at 5 am and went to the community ride with my mountain bike. I rode in the slower group, and felt good after that too. Yay!

I walked around the shops with kids on Saturday afternoon (in between car shuttles to drop people off and pick them up at various places around town) which probably didn't help. And Sunday I sat/stood for over an hour at a concert in which Alison was playing recorder - which I'm sure didn't help!

Saturday night I got this weird pain in my chest. To the left. But I don't think it's my heart. I wondered if it was what I imagine indigestion (as 'heartburn') to be, but as it's still vaguely there, I don't think it's that. So, I don't know what it is - Marc thinks it sounds like a pulled muscle. How I would have pulled a muscle there I don't know. Just one more for the list of niggly things I'm running through. Got to try everything it seems. It has gradually eased, much like a pulled muscle, so I will go with that theory unless it gets worse, at which point, yes, I would take myself off to the doctors.

On Saturday I finally visited Ali's friend's mother in hospital. I hadn't met her before - she lives in ICU. Permanently. She has some type of muscle wasting condition, and has a tracheotomy, attached to tubes to breathe; talking comes out as not much more than a whisper, which requires something like 80% lip reading and a lot of concentration. Apparently I did really well - much better than most at picking up what she was saying! I was blown away by her courage and cheerfulness, in the face of a life which is only made worthwhile by the joy, pride and love she has in her daughter. I intend to visit her again - without the girls so we can talk about them like mothers normally do! It was, though, a sobering reality check. We do so need those from time to time to help us put our own lives in perspective.

I have spent today sorting out minutes and paperwork for the netball AGM tonight. In the search for the rough notes from the AGM from nearly a year ago, I have half filled the recycle bin with waste paper - so at least it has achieved something positive. I was just about to switch from an unusually calm and collected (for me) 'Meh - it'll turn up' approach to a frantic, ranting tearing-my-hair out lunatic when I finally found what I was looking for... Phew. That only took about 3 hours! As I get all that typed up and printed and filed I am feeling that heavy weight (the one called "I'm pissed off with being Secretary") starting to lift from my shoulders. When I finally do get to hand it over to my successor, I'll be floating on air!

And who knows, that might be a good thing for my back.

Labels: clean ups, daily, reality checks

The next day. Did #2's hair, and she too was riddled. What can you do. Just spend a few hours of your day combing, combing, combing. Naturally by the end of that spree I was scratching my own head, but thank god I have the sense to have short hair. Did a comb through on myself and I am FREEEEE! And now that I've rinsed the conditioner out in tepid water, I actually feel slightly uplifted. Well.. things could be worse - imagine if I had them too! I will have to attack #1 when she gets home from a friend's this afternoon. She will think that now she is a teenager she is immune, but I am thinking that is unlikely. I can always hope.

What is of more concern is Marc's shoulder. He is in pain, but, being a man, won't take anything for it. Just sits there looking pained. And depressed about another hitch to our bike riding training - we were going to go into this Saturday morning community bike ride tomorrow morning. (As if Tracey having a cough for 6 damn weeks wasn't enough... he had 3 weeks off work, and we haven't ridden once, and the Big Ride is in 2 months.) If the roles were reversed he'd be nagging me to see someone, TODAY, but he is adamant that he needs to wait a couple of days. *[Edit: as if he sensed me writing that, he just capitulated and asked for painkillers - so it can't be good.]

He first dislocated his shoulder around 14 years ago - playing volleyball. He had a 10km trip to the hospital (along a bumpy road) with it still dislocated. So it must have been 'out' for nearly an hour. I wasn't with him at the time (I think I was home either very pregnant or with the baby) but it must have been excruciating. He took note of how the dr did it, and every other time it has happened he enlists whoever is closest to pull on his arm, in a sort of horizontal position, while he sort of manouvres his shoulder till it clunks back in. Strangely enough, his shoulder then HURTS for a while - the ligaments and muscles protesting at being jolted out of place like that.

[Yesterday he only had the two older girls with him, and so it was a Giant Turnip style tug-of-war scenario, with Cait pulling on his arm with both arms, and Alison with her arms around Cait's waist. "And they pulled, and they pulled... and they pulled...." ]

And, though he wasn't to know it back that first time, it does happen on a semi-regular basis, which is a tad inconvenient. He should probably have a shoulder reconstruction, but as he would have to be out of commission from everything for the recuperation period required, it's never made the 'things to do this year' list. Too much to do. It used to happen a fair bit, until he figured out what 'moves' he should avoid. He learnt that he could no longer spike in volleyball.. or sleep with his arm on the pillow 'above' his head. (Try being woken up out of a dead sleep to help him put his shoulder back in.) Or do silly things like reaching across the car to unlock a door (less likely to happen these days now that we have cars with central locking). No more diving to touch someone at Touch.. and be careful body surfing. When he does it, it makes him much more cautious for a while.. until he forgets. In the surf it's the dumpers that catch him, and that's what happened yesterday. And he really did get dumped yesterday - after it got thrown out on the downward dump, he was unceremoniously dumped, and rolled over and over. With. His. Shoulder. Out. (Yeah, it makes me shudder just thinking about it.) So given what he endured while it was out, it probably rates as one of the worst on his list of dislocation experiences, and thus it is likely that it will give him grief for longer.

So, not the most ideal start to our year, particularly with regard to our bike riding plans - and making the most of his time off work. In the scheme of things, it puts the nits in perspective. I guess. (Lucky he has some more cricket to watch on the telly this afternoon. I will hang out some more sheets, and then take myself for a bike ride to test the lungs. Just me getting on a bike might make him a bit happier.)

Labels: reality checks

I won a competition! I've won an entry in the Big Ride.!

I think it depends who I tell as to the reaction.

Told some other tandem riders (on a yahoo groups site), and they are all like 'woo hoo, congratulations'! Told the girls at the netball committee meeting tonight and they just went 'riiiight' in a 'you call that a prize?' kind of way.

I was driving back from Port today when I got the call from Bicycle NSW on my mobile. My immediate thought (after the Oh My God, I won something!) was 'Oh boy, this makes things a bit complicated.. for Marc'. The only reason we hadn't signed up to do it all again (and I have it documented in that journal that he was already ready to sign up for next year at the Finish line) is that he wasn't paying attention to the different dates for next year's ride, and made himself available to be selected in this Australian Mens Over 40s Touch side to play in New Zealand next March. And it clashes.

He already has the clock ticking over making a decision - the Touch people need to know. They already had to make a case for not participating in the "compulsory" 10 day tour associated with it. And he knows I'm not really keen.. because it's a one person thing vs a whole family thing. and I reckon the Big Ride kind of had dibs. And we just bought the triplet so it would be a shame not to use it.. and .... and we now know quite a lot of people who will be on it ... and ra, ra, ra.

I spent the rest of the drive home barely able to wipe the smile from my face BECAUSE I WON SOMETHING - GO ME!... and worrying about being able to claim it.

I told Marc it was Fate.

(So far he has suggested - flippantly - that we go for the first half without him... Cait and Ali on one tandem (hah!).. and Zoe and me on another. One of the Sydney tandem guys suggested that I'd be fine doing it myself - he'd just have some logistical issues involved in taking the girls with him (to NZ) Hah! to that too.


So there you go... Fate. Karma.. whatever.


Now.. about my reality check on the weekend. Let's see if I can be more succinct than I was when I attempted to write about it yesterday. Alison was invited to go shopping with 3 other friends, by a newish friend who was wanting to do something a bit belatedly for her birthday. I finally got to talk to her Nan (who she lives with) about what was happening (wanting to be sure about supervision).. and she asked if it was ok if the girls went to visit Ali's friend's mum in hospital first. I was aware that her mum was in hospital, but to my shame hadn't paid much attention to the circumstances. She has a muscular wasting disease of some sort... needs to be on a ventilator.

Ah gee. No, of course I didn't mind. Aside from the physical ramifications, imagine as a mother being in hospital.. and not knowing your daughter's friends. And all that. Each time I went to speak to Alison about it I got all choked up.

Like I said. Reality check. With a pointy stick.

Labels: bike riding, karma, reality checks