Live your potential

Equality and the lack of it

I've always considered myself a fairly "new man". Yes, I can be sexist, I enjoy porn, I make assumptions. But on the whole, I think men and women can and should play an equal role. I believe in what Wikipedia calls gender equality. Interesting that I should be writing this at a time when there are plans to introduce positive discrimination. Annika and I have always both worked, we both clean and cook and look after the children. We don't have particularly defined male and female roles. I don't sew, then again, I don't do DIY (I somehow missed out on that gene). We both used to work four days a week, with the fifth day being full time parents.

After the accident, that's all changed. I'm more of a full-time parent whilst Annika goes out and earns the cash. Even when I finish my teacher training, I'll never earn as much as her, working as she does in the fairly well-paid world of children's television. I can't clean as easily: pushing a hoover around in a wheelchair is akin to hoovering whilst in a shopping trolley. No need to go to the gym after doing that for half an hour. Luckily we have an au pair now, so they can do that. Cooking is harder (try chopping a squid's tentacles into a frying pan whilst trying not to fall into the gas ring. Where do you rest your hand to give you balance?). Tidying up after meals is really tricky, particularly with glasses. And everything takes so much longer: not a problem in itself, but frustrating for others to watch, so inevitably I sit whilst others clear. I can still do all these things, just not with the ease that I used to. I hate this imbalance. It doesn't feel right. Yet I'm not sure what I can do about it.

Recipes for bed-time fundraising

So, what ingredients do you need to raise £23,000 whilst on full-time bedrest? Well, one BlackBerry 8800 should do the trick. I first got a BlackBerry back in 2004 when I had the toyshop and website. The website offered next day delivery. If someone chose this kind of delivery, I had to book the courier by 3pm. So if I was out with the children, I either had to gamble that no one had ordered anything or come home early. Not the greatest approach to an efficient business or attentive childcare. Then a friend suggested a BlackBerry. My life was transformed... The site emails me when I get an order, telling me whether it's express or standard delivery. My BlackBerry picks up the email instantly, and I know whether or not to return home. No more "sorry kids, we may need to stay in the house in case someone orders". Yes, it is a CrackBerry in that I can't be without it, but it's a wondrous beastie.

It really came into its own when I was in hospital. Because the Spinal Unit is so different from the rest of the hospital, with patients who will stay months, even years, they don't play by the same rules. Patients are allowed their own TVs, their own mobiles, laptops and are even allowed alcohol on the wards. It's a strange and unusual place. But with these attitudes, being on bedrest for months does get easier. And my BlackBerry was a godsend. I could chat, text, surf the web (I did a lot of blog-reading), send emails... How did it help with the fundraising? It searched the net for possible funders, allowed me to call them, emailed my Occupational Therapist with draft letters, read the Word and Excel documents she sent back. Everything. All I had to do was sign and send the letters. The story of why I had such a success rate (everyone I wrote to funded me) will have to wait for another time.

Pain and meaning

Pain used to be a helpful thing. If I was overstretching a leg muscle during a workout, the pain would tell me to stop. If I had a foot too near a fire, the pain would warn me to move. Pain used to be specific and full of information. Now, most of the time, pain is general and rarely useful at all. It comes in strange shapes and sizes. It's always present. Some people have names for it (Tim, over at Looking Up, calls his “Spike”). Most SCIs talk of it. Sometimes the pain is a burning sensation or a deep itch or nerve pain or impossible to describe other than “tedious”. At other times, it’s not there when it should be. Last night, I had the laptop sitting on my legs. When I take off my trousers, I find a deep and ugly two inch blister burn that has now burst and turned into an angry red wheal. Yet there was and is no pain.

My back will be in agony, but since I have no sensation below my armpits, what does that mean? That I’m tired? Have a pressure sore? Pain has many meanings now and it’s hard to decipher. It’s difficult to know what causes the pain. The only guarantee of pain is lack of sleep, which is so familiar that it’s becoming ridiculous. And a vicious circle. Lack of sleep = pain = harder to sleep = more pain and on and on. Boring. Tedious. Hateful. O'Keefe was in the hospital for three months, she went to Bermuda for a rest. She didn't make love to me that time, I think on account of her weakness. Too bad.

See Frida Kahlo's take: "I drank to drown my pain, but the damned pain learned how to swim, and now I am overwhelmed by this decent and good behavior."

Crip Lit, Part 1

As a new member of the spinally cord injured, wheelchair using brother and sisterhood, I'm keen to read as much crip lit as I can. There's a reasonable amount out there, from horrifying to challenging, mundane to assumption-breaking. As a writer myself, I'm curious to see how others in similar situations express themselves. And it can be reassuring to read how people deal with challenges which I might too face or have already confronted.

First up, and best so far, is the slightly lengthily titled Moving Violations: War Zones, Wheelchairs, and Declarations of Independence by John Hockenberry (find out more about him here). Beautifully written, albeit a little too lyrical for my tastes at times, with wonderful insights and persectives, it follows John's life more or less since the accident he had at 19. He's got an interesting take on things, not willing to accept help, rising to every challenge. A radio journalist, we first encounter him astride a donkey after the Gulf War and follow him through various war zones and events I hope never to find myself in. I like his take on the visibility of being a wheelchair user, the problem of being seen as inspirational rather than just being. I found comfort in his story about pitying his leg after leaving what turned out to be a not cold saucepan on his lap. I feel the same way as I look at the burns and scars on my own limbs. A must-have on any disability bookshelf.

Beds

 For the first time in almost two years, Annika and I are sleeping together again. I went into hospital at the beginning of July 2006, came out at the end of August 2007 and house conversions plus slow Social Services mean no double bed until this month. I've been downstairs in a hospital bed with spinal mattress whilst adaptations were finished and bed finally arrived. Actually convinced Social Services to fork out over £2,000. "I've raised over £20,000 to pay for house conversions, so I'd like you to pay for a new bed". To my amazement, they agree to fund a special (and rather nice) one... They write a cheque in my name and all they require as proof that I've spent the cash on its alloted purpose is a signature. I include a receipt to make doubly sure.

Given the propensity of my bladder to leak at least once a month, resulting in soaking sheets, Annika understandably wants separate mattresses, so we now have a spectacular six foot bed with one side normal, the other side going up and down and sideways (almost). "You have to think in the longer term", says the occupational therapist, "as you get older, your shoulders will start to give way and you will need a carer. You'll need an adjustable bed". So, much as I hate thinking about the future and carers, that's what we have. Lovely to be upstairs again in our light bedroom, though it demands a rethink of routines, unless I want to do four transfers every time I forget something. Maybe we should get a mini-bar for the bedroom?

I do think it's harder for partners and families than the person who actually has the injury. I have loads of support: I can call the hospital any time, go there any time, visit a psychotherapist there, contact the Spinal Injuries Association, have my network of other SCI friends... Annika has no one. None of the people who were in hospital at the same time as me were our age with children. There must be some out there, but we've not found them yet.

So together again. It's strange. The bed is so enormous if we're each on the side we can't touch each other. Our rhythms are very different: Annika goes to bed early whilst I surf the net. And Annika is used to silence in the bedroom (apart from our yowling cats), so to have me crashing about as I turn over isn't the peace and quiet she's had for the last couple of years. It's going to take a while...

Flying lessons

So, on reflection, what did I learn from my time in Brazil?

Wear an indwelling catheter: on the way out, I was wearing a leg bag and convene sheath, which worked fine. On the way back, this leaked and I ended up having to strip my bottom half naked to clean myself up, much to the bemusement of nearby passengers. There's no way I would have been able to get to a toilet, so long-term solutions would have been better. Thus, attach a night bag to leg bag - far more capacity, easy to hide in a plastic bag and avoids the scenario of having to empty the leg bag into a water bottle whilst hiding everything in a blanket...;

Have minimal luggage: I was lucky in that I managed to squash everything into my chair rucksack, so had everything with me and didn't have to then hang about at the luggage collection, which looks very hard to get luggage off if you're in a wheelchair;

Expect surprises: I was pulled over by Customs in Lisbon and searched for drugs. Took me aback somewhat. Last time that happened I was coming back from India wearing pink trousers, so fair enough. This time I was well-dressed and presentable...that said, it would have been really easy for someone to stuff something into my rucksack behind the chair without me noticing a thing;

Find locks for rucksack: again, it would have been very easy for someone to lift off my bag without me noticing;

Buy plenty of water once you're through customs - I needed to drink far more than usual;

Try to insist on a window space - so much easier to lie down, and less likely to fall into the aisle as the plane turns...

But on the whole, a manageable and exciting journey. Horizons beckon...