Transverse Myelitis & Me, With A New Addition!

I’m the first to put my hands up and admit I struggle with my disability. Being in hospital and losing the small amount of independance I had really knocked my emotions and confidence for six.

I feel a burden on those around me who care for me yet deep down I know that they do what they do for me out of love.

I’ve found that by talking to those who care, those who truly listen really helps me overcome my sense of loss and burden.

My family have gone above and beyond to provide me with everything I could possibly need to live as normal a life as possible yet I still tend to only see the DIS and not the ability when I look at myself from the outside.

Too many people in life today, a life where places are much more accessible and set up for the less able, see life as a permanent uphill battle just to be treated as an equal.

We will never be accepted as equals when we aremt given the tools and respect to live side by side with our able bodied friends and family.

I guess our family is so much more different than the average family seeing as we have not just one person with a permanent disability but 2. L’s we have adapted to over the past 9yrs and boy has it changed over time. We try and include him in everything that we have to offer him. Yes we have to adapt things to enable him to participate in activities but we’ll always go and give our all to try and enrich his life as much as possible.

The local Cub Scout group used to try and include L when they were having group activities. One of the most memorable moments was when the cub group went to have an archery session at their local activity centre. The leader of the centre went out of his way to find a piece of equipment that would safely allow L to participate alongside his peers. A some tennis ball, bow and a gate latch enabled L to fire an arrow at just a touch of the tennis ball. He not only got the target but scored points as well. Tbh I think hubby and I were far more excited, astounded and overjoyed at seeing him take part in such an able bodied task. They truly saw past the DIS and saw the ability in him. Everyone he fired the arrow all the cubs cheered him on, just like all their other peers.

Now take me. I’ve only been in my wheelchair 2 years and I still struggle to see past the disability I had been dealt with.

I won’t lie and say life is a bunch of roses but everyone around me tries to help me see past my limitations and find new ways of doing things and even encourage me to try new craft projects and everyday tasks but with a twist to make it easier. One of the biggest changes I had to make was to get rid of the kettle and by a hot water dispensing machine as I was finding it increasingly difficult to lift the kettle and use it safely. I found it hard to let go of such a basic simple skill yet the solution enabled me to make hot drinks in a safe and controlled manner without putting myself or others at risk.

Simple things like putting food items on the lower shelves meant I could attempt to cook meals although having to bed and plead with others, who were already busy, to help me.

My biggest hang up has to be the way I now have to parent my children. I am no longer able to carry out care tasks for L as just not safe for either of us and trying to parent a , now very tall and hormonal, 12yr old isn’t without its ups and downs. I not only have my emotional well being to worry about but also that of a growing young man who doesn’t understand fully his own feelings let alone mine as I try to be a mum again, and 50% of the time Im unsuccessful. I don’t know how to be a mum right now and that scares me. I doubt my own ability to take back control and I’m terrified that things are going to go so wrong and we’ll lose the closeness that we had before.

I know deep down that I have the ability to be a damn good mum but at the moment the DIS is taking over and I’ve no idea am now to stop it.

I’ve kind of wandered off of what I was trying to say about helping others see beyond the disability and focus on the ability and the things we can do to change people’s perceptions about what we can and can’t do. I guess we all have to play a part in making things as accessible and easy for those with additional needs, I guess it’s just a case of working out who is responsible for making life that little bit easier for anyone and everyone irrespective of whether you are able bodied or not.