KEEP MOVING FORWARDS!

While holidaying at the beach, on a mildly warm day, I went swimming. In spite of my being an absolute water-baby and being prepared to swim at any temperature, when I entered the water I was struck with how freezing it was. Even though I was initially paralyzed by the cold, thoughts didn’t even enter my mind to leave the water. I knew that it would warm up and become pleasant if I just kept moving and got into the deep.

I saw a parallel in this of when we try new things that aren’t known, comfortable territory. In the past two years I have been challenged to try many ‘new’ things. I had completely forgotten how I had done these things due to my memory loss after each lot of neurosurgery and I was not at all sure I could still do them.

After one of my specialists, who is a musician himself, heard my clip on YouTube he strongly encouraged me to start singing again. But the thing was that I couldn’t remember how to sing, or even produce a note. Even though I had sung at weddings for my holiday job during my university years, that was 10 years ago and a lot of memory loss had occurred in that time. I had absolutely no idea how to produce musical sound vocally. But this doctor encouraged me with such enthusiasm, that I started to consider trying again.

At first I was very tentative and quiet, only taking very small ‘steps’ in my singing. I was having to have two skin treatment baths a day and initially I very timidly sang out prayers for people while I was in the bath using an old Gregorian chant that I knew, as my musical backing. When I would hit a ‘bum note’ I would abruptly stop singing and it would take a few moments before I would feel the courage to try again. What I found encouraging was that the more I sang the fewer of those notes there were, and when they did occur I could just take a breath and restart.

Over the course of a couple of months my confidence grew and I started to want to sing more than just in the bath, and more than just Gregorian chants. I started to listen to jazz music again, after a 10 year break. As I started to try and sing jazz with very tentative little steps, those steps became confident, excited strides. I had completely forgotten the amount of joy it filled me with when I sang! With my singing, I went from cautiously paddling in the shallows to rolling in the deep.

What had initially been an absolute challenge started to feel natural. Now, 18 months into singing, part of me can’t understand why I hadn’t tried sooner as it brings me so much pleasure. I had assumed that because I hadn’t done it in such a long time, and couldn’t remember how to, that it was no longer within me. Most of all I had completely forgotten how much pleasure it brings me to sing.

However, if I had stopped moving forward with my singing and had remained ‘frozen’ when I hit those ‘bum notes’, and if I had let the weakness in my voice when I had first started deter me, I would never have moved into finding the fullness in my voice again.

This whole experience has made me wonder what else there is still lying latent in my brain that I could rediscover?

In all of our lives there are things we did and enjoyed when we were young and have since stopped doing. Our lives have changed. Careers, children, complex issues have entered the scene and we feel we are no longer who we were. However, what we don’t realize is that those abilities are still within us and can be brought back to the surface if we are willing to try. But we have to be prepared to enter the cold, unfamiliar water and push through those first freezing, paralyzing steps.

So much potential lies within us but we have to be willing to step out of our comfort zone, push past the initial freeze and just keep moving towards what may well end up bringing us incredible satisfaction and even delight.

MY PERSONAL PERSPECTIVE OF LIVING WITH AN INVISIBLE DISABILITY

I am at an extremely fortunate point in my journey where I have no visible evidence that I have a disability. There is a flipside to this, though.

After my 6 lots of neurosurgery in 8 days in 2000 I was left with several problems that nobody could see. I was left with many issues with my brain function, some mental health issues, and many physical problems – namely chronic pain throughout my body. But none of these could be seen and to this day none of my health problems and physical challenges are visible. This is an incredible blessing on the one hand, but causes me extreme frustration on the other.

From January 2005 I started using TENS (Transcutaneous Electrical Nerve Stimulation) machines to help reduce the amount of pain I was in. I began just using the electrodes on my back where the only thing that could be seen was a small (6cm x 9.5cm x 2.5cm) machine hanging around my neck. An extremely dear friend got the measurements of the machine and his grandmother hand-beaded an exquisite little bag to hang around my neck that concealed the machine. This reduced the amount of double takes from people and they didn’t really bother me.

In early 2008 when my pain condition progressed to my hands and forearms I started using electrodes on my arms. The electrical current going into my arms enabled me to feed myself, handwrite and drive more easily. Unfortunately it also meant that I had something obviously out of the ordinary that was often stared at. Having to use electrodes on my arms I needed to use a 2^nd TENS machine – so had another machine hanging around my neck.

My mother very kindly made me two black velvet bags to conceal the machines. But in the summer there was no way of concealing the 5x5cm electrodes, and wires coming out of them, on my arms. Herein began my getting not just double-takes, but absolute stares. My way of combating this was to wear sunglasses, even inside shops – they meant that I could just stride past people when they stared and they couldn’t catch my eye.

In 2009 my pain condition progressed to my legs and feet and I began also using the TENS machine on my legs around the knee area. This meant that in summer I was looking very ‘wired up’ and there was now clearly something abnormal in my appearance. Most people just stared, but other people felt compelled to comment on them and ask questions.

There were many humorous scenarios that friends and family members suggested for me to say, such as that I was being tracked by satellite, or that I was on home detention and that this was the latest way the police could keep track of me. However comments about my appearance were usually made when I was at my weakest and least felt like talking about it. People’s comments were also always in public places, such as in queues at the supermarket, when I didn’t want to go into my medical situation.

One Saturday I accidentally left my sunglasses in a changing room of a clothing store. I went to the supermarket after this shop and found that people weren’t just staring at my electrodes but would then catch my eye and stare at me. This happened time and time again in the 5 minutes I was in the shop - I found it so upsetting that I burst into tears when I got into the car. I bought new sunglasses the next day.

In August 2010 I had to stop using the TENS machines. Because of the severe itching reaction my body was having to the stimulation and the tape that held the electrodes in place. Even though this led to a significant increase in my pain levels, it also led to a huge amount of freedom. When Spring came, and shorter sleeved and legged clothing, I felt so incredibly free. Free from stares, free from unwanted questions, and free to have it appear as though I was normal. But what it didn’t free me from was the reality of the pain.

Not using the TENS meant that I no longer had anything that might indicate to people, even my close friends and extended family, that I was in a lot of pain. I had chosen a long time before then to not show in my expression that I was in pain. If I was to show it I would continually be around with a pained look on my face, and what would be the point in that? And who would want to spend the rest of their life looking miserable?

As I said earlier, there is a flipside to having an invisible disability. There is no doubt that it is an incredible blessing that with every appointment I have had with my specialists in the past 12 or so months they have all said “you are looking so good!”  There were many years where I was ‘inflated’ on steroids, and I couldn’t even concentrate my vision on the specialist let alone hold a conversation. But I have had to say, and at times persuade, many of them that in spite of my looking good, I am going through physical misery every day.

Unfortunately it’s not only people that don’t know me well that don’t seem to realize that there is so much more going on than what is visible. Some of my friends, who I don’t see in person on a regular basis, have also struggled to come to grips with it. People who don’t understand my everyday reality may not appreciate that I am not choosing to not help with meal preparation or offering to help cleaning up, but that I actually can’t stand still for more than about 30 seconds before intense back pain kicks in and it is painful to use my hands for anything.

On a different front, my short term memory problems and extreme levels of fatigue have been something that I’ve struggled with since all my surgery in 2000. These restrict my ability to retain things and concentrate. It can be hard to get people to understand the extent of these issues when I now look so ‘normal’.

It is also hard for people to understand when my morale is low that this is more than likely as a result of being in a lot of pain and being exhausted from it.

I have found it especially difficult when I have to deal with agencies in relation to my disability. I look like a fit, healthy person who should be out there working and earning a living. This perception is so very different to my reality though, and even with medical documentation stating that my pain is going to be here permanently, I have had to go to great lengths to persuade them that I even have pain.

Now I am not writing this blog trying to get sympathy, or even worse pity. I am rather trying to express my frustrations and my experiences.

A sad reality is that I am far from alone in my experiences. There are many people the world over who live with horrendous invisible disabilities. Cancer, pain, neurological complications, through to mental illnesses and various forms of fatigue disorders; these are problems that are faced by people throughout the world every day.

Just because they have no visible evidence, this does not alter the invisible suffering many people endure. Perhaps we should be more understanding and believing of people who talk about pain that we cannot see.