• Jana Field

Learning not to quit when life gets you down

Today, I am writing a very personal post. I am a believer in sharing stories so that others may realise that they are not on their own when life gets tough and that while it may be tempting to give up, we cannot quit.

This morning I walked, full force, into a wall. The force was so hard that I banged my nose hard enough to make it bleed, causing me to curse and swear enough to make a hardened trooper blush while feeling my nose to find out if it was broken. Once I got over that little drama (my nose is not broken but very tender and my face feels like it’s been punched a few times!) I sat down and was reminded of something we spoke about during the shaman workshop I attended earlier this week.

When we bump our toes, ankles, shins, elbows, nose or forehead it means we need to look within as to why we are being passive-aggressive. It didn’t take me long to realise how angry, resentful and frustrated I am feeling about my deteriorating eyesight (which is why I didn’t see the wall when I walked into it, in case you were wondering!) and how much I was suppressing these feelings, pretending that “Hey, it’s part of life”.

To cut a long story short, I was diagnosed with retinitis pigmentosa (RP) in 2006. RP is a degenerative condition of the retina and eventually leads to blindness. To make matters a little more interesting, I was born hard-of-hearing. I have always accepted my deafness and have adapted well to it but the thought of losing my eyesight as well has not been one that I wanted to take lightly. And, yet I had to. So, when I was told three weeks ago that I was to stop driving with immediate effect, I took this in my stride, determined not to let this latest development in my deteriorating eyesight bother me……. until this morning.

The stark reality of being deaf and blind is a frightening one. It makes me mad that I have been dealt with such a rotten tomato especially as I am the only one in my family to inherit this genetic condition. It makes me mad that I have to fight through life living with disabilities, working harder than others to get through each day. It makes me mad having my independence slowly taken away from me – I cannot drive anymore, I battle to find my way through dimly lit areas, I have to rely on someone to help me navigate through crowded areas. I endure embarrassing moments of not hearing someone, walking right pass people because I simply do not see or hear that they are there, making them feel that I am ignoring them.

Today I am tired with life and yet, when I saw a quote on Facebook, I was reminded that while I can be tired, I simply cannot quit. I must learn to rest so that I may pick myself up again and continue with life. I don’t want to quit. I have always believed that life is an exciting journey. And, my latest exciting experience is unfolding as a result of my disabilities.

I have recently been encouraged to have genetic testing done so that it can be detected that I have Ushers Syndrome (an inherited condition characterised by progressive vision loss and hearing impairment). Huge strides are taking place, in research fields, for finding treatment for those living with RP/Ushers Syndrome and clinical trials are revealing exciting developments in gene replacement therapy. This means that those living with RP/Ushers Syndrome, may, one day, have their eyesight and hearing loss restored. I am excited to be part of this journey and count myself lucky to be unique enough to be able to be involved in ground-breaking research so that our future generations may have a better prospect of living with RP/Ushers Syndrome.

I want to remind everyone out there that yes, life can get hard and yes, you can get tired and want to give up. But, don’t. Discover your own incredible uniqueness and realise that you have so much to offer to the world – if you don't believe it now, work hard on discovering it because it is there, deep within you. Life is a journey - you can chose to make it worthwhile living or you can choose to opt out. I prefer to see my life as a gift. I encourage you to see life as such too. So, when you do get tired, remember...learn to rest - not to quit.

#retinitispigmentosa #UshersSyndrome #overwhelm

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