ShoeStrings

SAT 28^TH OCT

I had three friend’s over. They made their own coffee. We talked about the normal things – boyfriends, mortgages, work, holidays and engagements. The only thing I had was a HUGE mortgage. Were they seeing me to fill in their days? I felt like I no longer gave anything in our friendships. I felt like my lethargy was contagious. My friends left in a sleepy state. I decided to go for another walk. It may wake me up. Was I tired? Was I caffeine deprived? I hadn’t had a coffee for two days. I felt that the other matter that I’d actually pursued was taxing my rehab. It was great that my ‘ShoeStrings’ project was happening but was it hindering my rehab?  Saturday night alone. I heated a lean cuisine pizza. I felt like actor in that ad where a lady only orders one chicken fillet - emphasising her singleness when the butcher is attempting to get her to buy two. I was officially a loner. 

Hi there! Great that you’ve visited ShoeStrings! Here is my weekly blogging for you all…

SAT 21^ST OCT
I went to my best friend’s
Nan’s funeral today. Sad. It is people like ‘Smiley Nan’ that make tough times a lot easier. I know if she can smile and go through life like she did, we all can. Also, as a fellow ‘stroke’ victim she was inspirational. It also reiterated the importance of family and friends. It was a perfect service.  The Reverend leading the service was in his 90s and walked better than me on his SPS. I must admit, wearing my only black shoes which were slippery and flattish (with a slight heel) didn’t help my poor balance and walking style! SUN 22^ND OCTMy close friend came from Adelaide and stayed for brunch. Fresh dates were consumed. We laughed that edible dates is all I’ll ever get!! Maybe not so funny? MON 23^RD OCTCatching the train,I thought it would be so easy. A synch. Mum parked the car while I tackled the endless ramps leading to the platform. First the declining slopes – squatting to prevent somersaulting down. To onlookers I would’ve looked so strange, almost constipated. Concentrating on every step. A few times I grabbed the banister rail to stop me from flipping.  All I could see and hear was feet. Heels, sneakers, heels. Heels. All walking with ease. Two out of the 50 people that passed asked if I needed help. The others I assume thought I was invincible, or were rushing to make the train-toast or mobile in hand. I was exhausted and it was just the beginning. Thankfully, two ramps exiting the train were on an incline, a lot easier. They would be so hard on the return trip. I couldn’t think about that. One step at a time. We were getting the 8:19am train. We’d chosen ‘a stopping at all stations’ train to reduce the push and shoves. Waiting on the landing, I must’ve looked like I was starting a race. My frame positioned at the very edge of the yellow line. Mum commented on the two primary school girls refusing to kiss their mum goodbye. I just wanted to get this ‘trial train trip’ over and done with.  Getting onto the carriage wasn’t as easy as I’d imagined. I had to line myself up behind the yellow line so that when the moving vehicle stopped I could get on. Not so easy. My attempt to line myself up failed. The doors opened. And before I’d even crossed the yellow line the ‘beep-beep-beep’ sound had been projected over the loud speaker, the doors had shut. My frame was on the carriage. I was on the platform. Mum, stressed at the prospect of her daughter falling down the black space in between said, “jump on em!!”, I replied calmly “I can’t jump!” At that moment I wished I was in a comic strip and I could be in both places. My body in segments.  Silence. Times like this, when reality bites, there is always dead silence.  I used to stand so the ‘elderly’ or ‘people with special needs’ could sit. It was my turn. As a kid, I’d always been amazed at how your eyes flick back and forth. My eyes trying to capture every passing image. Graffiti, people’s outfits and newspapers. Traffic lights. Fast cars. Trees all blurred. Now my nystagmus (flickering of my eyes) felt normal. Since my operation, my eyes had raced. It was the only body part that moved quickly. Two images, both racing.  A schoolgirl sat opposite me, reading ‘To Kill a Mocking Bird’, a novel I had read and studied. Another lady on my left was wearing her sunglasses. I immediately put on mine; I had permission to wear them. Now I would get fewer stares. Mum was reading her course guide; others were listening to their ipods or reading. Getting off the train was my focus.  Crossing Flinders Street, I positioned my frame right on the curb’s edge. Close enough that cars could slice me into neat segments- guess this would make getting on the train on my way home a lot easier! Green man flashed. I started negotiating with the oncoming traffic. Normally I’d smile. This time there were too many people. They couldn’t tell if I was smiling with my paralysis anyway. Smiling would waste the energy I needed to cross. Other pedestrians would think I wasn’t being nice. Oh well, my mission wasn’t to please them but to simply cross the road safely. Simply- now that’s an understatement. People’s feet. Lots of feet. A city of feet. I hate feet. I crossed half way, to the tram island- no holiday though. Dripping fear, no tropical sweat. The Red man now flashed. Mum walked too close to me, her hand ready to catch me – it made me more nervous. All I could hear was mum’s thumping heart.  I stood there panicked trying to appear calm.  Mum my shadow. I snapped at Mum. She made me more nervous. She stressed me. Any excuse, anything but ‘me’. If she hadn’t caught the train or crossed the road, it would be a breeze. Reality was, I needed her there and without her I would have been even more nervous. More stressed. I had arrived in the city. I had made it half way. I received a text, my OT was sick. My appointment was cancelled. What a waste. I still had to cross the road and catch the train home. I couldn’t waste my energy getting upset. Besides, I was happy that I hadn’t caught a $25.00 return trip cab here and received a ‘free’ travel ticket as my first benefit of a pension cardholder.  TUES 24^TH OCTThe OT Department are purchasing a Hydrocollator with the money raised from ‘Run to Gee’. I saw a patient that suffered from Guillian-Barre Syndrome and went through rehab with me. He looked so good. I had seen my Mellor ward room mate the day before and another patient today. It’s so hard not to compare. They all were working, walking and frameless. WED 25^TH OCTI don’t know one person who likes the dentist. I went for my annual check up. My sugar intake since my operation has been huge. Holes. Fillings. More Injections. I lay on the plastic coated chair and the assistant put a bib and big Sunglasses on me. Looking young and daggy was ok here. Even a Moss or McPherson would have to wear a bib. The dentist came in. Before I opened my mouth I listed all the reasons my teeth might not be great: my paralysis, the fact that I’d just eaten something… every reason under the sun. Verbally insured, I opened my mouth. White plastic gloves entered my mouth. The last time I’d had asimilar experience was when I had my gag reflex check at Talbot. “First, we’ll do an oral cancer check”, the dentist announced with talk of cancer - and I was worried about cavities! Silence. Then the words “no cancer”. I tried to talk with a hand in my mouth and my tongue enveloped in paper and found  that, like my daggyness, my slurring was permitted here. Nice. Then news of “no holes, fillings or injections”. I could resume my sugar consumption. Good news. Although I have an electric toothbrush, eating and drinking on the left side only meant that the plaque had formed on the right side of my mouth. At my last appointment I was told to “floss daily” and given a flossing device to do this. This device is still in its packet. Guilty. They had given me sugar free lollies which I ate. Of course, on top of the sugar-filled lollies I also devoured. Second time lucky, I went to the CRS again to complete my assessment. However, to make me eligible for the disability pension had made unsuitable for the CRS. I now had money but no future job prospects.  To be eligible for both, the job capacity assessment had to state that I could work 8- 14 hours per week. So I will wait 28 days. Not long I guess, in the scheme of things anyway. THURS 26^TH   OCTLast night I dreamt that I was walking with my frame for the first time. I hope the saying “dreams don’t come true” is right! It was OT Week but I’d been asked to speak at a Music Therapy ‘patient perspective’ session. A sign advertising this session, with a photograph of a girl walking with a brick filled frame with the music therapist playing the guitar behind her, was plastered all over Talbot. The girl walking with a frame and bag of bricks was ‘moi’. It was not a bad dream.  There were four speakers. I was first. I hadn’t prepared. I had no excuse. My justification was that experiencing all that I had was enough. I guess my rationale was also that you couldn’t always prepare for what’s ahead.  Featuring in this video, I previewed it before it was played to strangers. Gulp. That girl who was so bad was me. I swallowed the tears. Speaking, walking and singing were definitely NOT my strengths. This was a talk about ‘how music therapy had helped me’! Maybe showing the audience how badly I sung and walked would make my speaking appear good?  I requested a seat and for the video to be played after my talk. I could stand, however, I wanted to concentrate on what I was saying- not my balance. Having double vision meant that although my audience was twice as big, it was a sea of ‘blur’. I had ten minutes to relay my story. I told them briefly about my background. I was very honest, mentioned that I’d never worked in facilities that had music therapists. Initially I saw it as a ‘time filler’ and was willing to try anything that would help. Desperate I had sung. However, for me this therapy was helpful for helping me to express my ‘trapped emotions’. The first lyric I’d sung was ‘I’d like a cup of coffee’. Pre op I’d been a coffee addict, at that time it was banned – I was only to have thickened fluids.  The therapist carefully had selected songs (that at the time I liked) “learned to breathe again… this ugliness you see” were some of the lyrics I really identified with. Many times I would let my therapist sing and just cry. Music for me was a way of expressing myself and enabled me to still hide behind the words. I even wrote a few songs. They soon resorted to music as there was hope that it may improve my gait (walking). It apparently provided me with ‘rhythm’. Soon we combined my physio and music sessions, my music therapist following slowly behind playing her guitar as my physio walked with me. I had ‘marching cds’ to give me that rhythm. I bought an ipod and listened to music as I did my daily laps of the ward. It did help. Whether it provided me with a distraction from the frustrations or helped my damaged brain to relearn via a different pathway. Towards the end of my admission, I had done relaxation in music. Exhausted both physically and emotionally, I often would fall asleep in those sessions.  Although I initially had seen music therapy as a ‘time filler’, they helped me breathe, express myself, move better, and relax. Unfortunately, it didn’t fix my tone-deaf singing style.  Listening to the three other speakers was remuneration for me. A blind lady, a car accident victim (who was now a quadriplegic), and a man who suffered ‘temporary quadriplegia’ after acquiring a virus. All three people had gone through huge losses. Sometimes you need these reminders that you’re not alone.   I was given 40 coloured pencils as a thank you. Perhaps it was their subtle message that I should take up drawing. Music was not my thing. FRI 27^TH OCTHaving no appointments was rare. Although I could walk on my treadmill inside, I decided to exit the comfort zone and face the world outside. Perhaps I could walk to Camberwell and buy a coffee?  It began to lightly rain. I was 15 minutes from home without an umbrella. The strong wind attempted to push my frame and me over and reminded me of the fact that it was about to pour by pushing the wet air towards me. My black handbag, which I’d draped over my frame, now wore big droplets.  If it was to pour I couldn’t run for shelter. I would just get saturated, but I didn’t care. I walked as if I was in a trance. It was as if I’d had no sleep, or had been in bed with the flu. ‘Come on body, work!”  I tried to make sure my legs were doing more work than my eager arms. I corrected my posture. Chin in, shoulders back. I must’ve looked like I had a book balancing on my head. Every drop and rise was so obvious to me – whether it was the gradient, rain or wind.  Relieved, I returned to my comfort zone. My red chair and heater. I hadn’t made to Camberwell. Instant coffee would have to do!  My older sister recommended I call my nameless new frame ‘Bruce’. So if I’m spending the night with Bruce or taking Bruce out, you’ll know I’m really still single and just with my frame. SAT 28^TH OCTI had three friend’s over. They made their own coffee. We talked about the normal things – boyfriends, mortgages, work, holidays and engagements. The only thing I had was a HUGE mortgage. Were they seeing me to fill in their days? I felt like I no longer gave anything in our friendships. I felt like my lethargy was contagious. My friends left in a sleepy state. I decided to go for another walk. It may wake me up. Was I tired? Was I caffeine deprived? I hadn’t had a coffee for two days. I felt that the other matter that I’d actually pursued was taxing my rehab. It was great that my ‘ShoeStrings’ project was happening but was it hindering my rehab?  Saturday night alone. I heated a lean cuisine pizza. I felt like actor in that ad where a lady only orders one chicken fillet - emphasising her singleness when the butcher is attempting to get her to buy two. I was officially a loner. 

I met with an OT today re volunteer work with her organization. Asking her to carry my handbag an interesting start, and my sitting there sipping my coffee with a straw just as humiliating. The word ‘disability’ slapped me. I had to ‘choose’ to have it and be passionate about it rather than ashamed of it.

I had my swimming lesson today and tried ‘survivor stroke’ and was shocked at how hard it was. I was beyond bad. I couldn’t co-ordinate my legs, let alone my arms and legs simultaneously! I was so happy I now could swim 20 laps without flippers but was soon shattered when I tried something new. I was asked to try and do freestyle with a kicking board and breathe on each side. I could kick but my arms would still hold onto the board! How on earth could I focus on breathing on two sides as well?! I was tired. My brain hurt. Mentally exhausted, I could only do 25 laps. Normally I could do 60. I’d gone backwards.

TUES 17^Th OCTOBER

The face machine didn’t hurt; my pain threshold had peaked amazingly. I could now turn the amps up to 7 and feel no pain. Normally the 40+ minutes went slowly. Second by second. Tick. Tick. Tick. Now I could do it for longer, talk, watch TV without the pain distraction.

Too good to be true, I decided to read the manual. Urghhh!- I hadn’t charged it enough! I had initially charged it too much and nearly electrocuted my therapist and now I was at the other extreme. I charged it. Pain was back! I was back at 4.5 amps. I find that the higher the amps the more my right eye ‘flutters’. Concerned, I emailed Cindy and she said it quite normal. I was to continue.

 WED 18^TH OCTOBER

Today I saw my Melbourne Neurosurgeon, Mr John McMahon. I see him every six months at Cabrini. This time Dad waited in the waiting area while I had my 45 minute consultation. He thought I had definitely progressed since May 2006 when I’d seen him. I raised my concerns re the pain in my face, the web like rash on my thighs when I’m in direct sunlight. He said such things were part of the n
ormal recovery for AVM victims at two years post-surgery and expected me to still improve. Time would tell. I’d had a stroke plus my AVM removed, I was unsure which deficits were due to what and which would be permanent? I asked him to complete my two monthly Centre link Medical Certificate where he had to specify the time he would expect that I would be ‘unfit’ to work. This was clearly quite dubious; he and I both knew that. Normally an extended date on a Certificate was great, but due to my boredom, I requested that the longest I wouldn’t be working is Feb next year! I told him I’d die if I were still unemployed then! His receptionist, Judy, would be the nicest receptionist I’ve ever known.

I went to Toastmasters tonight, a public speaking course, as in Janine Shepherd’s biography she recommended it. It was how she got into public speaking.  No Kew members had heard of her. I’d have to talk a lot more.  So after more explaining I felt I’d earned my place there. I knew no one; I’d have to explain my past to warrant my physical deficits. These became even more apparent when I was asked to sign my name and pin a name badge on.

I was the first to arrive and sat whilst other members lifted heavy trestle tables and transformed the dark bowling hall in Kew to a Toastmasters meeting place. They all took it very seriously; Toastmaster banners and name badges, a table, a rostrum and even a light set.  There were approximately 20 people, mostly 50 year old males. As a new member I stood out anyway, let alone the fact I had a speech impediment and was a lot younger!

The speech topics were ‘Pay it Forward’, ‘Life’ and ‘Why?’ If I was to do the initial speech, namely the ‘icebreaker’ I would have to stand up there like them as well. I wasn’t that nervous re speaking, I was more worried about relaying my thoughts and balancing at the rostrum!

By 10pm I was so tired, holding my head up for 2 hours and wearing my prism glasses was hard work.  No one knew how hard. My efforts un noticed. As a new member, I was presented with a certificate and asked to talk about how I’d found the session. Dazed and brain-dead at the time, I can’t actually remember what I said, all I know is it came out all wrong and I had a long long way to go before I would become a masterful toast master! I had chosen to move forward. I was trying to not let brain surgery be an excuse but now I wanted it to rescue me. I felt trapped. Sitting there I had so much to say – boomerang thoughts, they’d just keep flying back at me.

  THURS 19^TH OCTOBER 

The cab driver talked the entire way to Malvern. Cab drivers, in my experience, are either really chatty or mute. First he asked if, “there was something wrong with my legs if I was on a walker?” I just said, “No, I had a problem with my brain”. Then he said, “Mate, I’m so tired…you’ve know idea”. His continual ‘mates’ were so informal, implying that I’d known him for years. In terms of tiredness, I felt at this point ‘the queen of fatigue’, but I had to remind myself that it was all relative. I didn’t want to be rude but talking to him was a waste of energy. My short replies to his endless questions, despite also turning my head and looking out the window, weren’t enough to imply I really didn’t want to talk because he continued to!

I met two OTs today to discuss my future in OT and both were very helpful. My physical deficits, mainly my balance and speech, had let me down.  I wished that my body were invisible- it may as well just disappear, it felt useless. I had so many ideas, so much to say and ask them but my body wouldn’t let me. Instead, I listened to their advice and experiences. I couldn’t afford to make a fool of myself trying to spit out what I actually wanted to say.

Whilst waiting in a café a lady wearing a very daggy tracksuit who had sat next to me had asked me about my prism glasses. I’d had many queries re the liney lenses, but never a genuine fashion one. “Do you mind me asking but where did you get them?” I was shocked. Was she serious?  I felt like I had a sign on my head saying, “…talk to me and watch my needed energy go’. I basically told her that unless she wanted to see double, not to buy similar ones.

  FRI 20^TH OCTOBER

It’s my Dad’s 58^th birthday today. I never thought I’d beat my Dad to the pension and to a frame!