How do you come back from that? How do you even start? What happens in those minutes, hours, weeks and months, after being told your future is no longer bright, it’s black…
Retinitis Pigmentosa (RP) is a rare, inherited disease, in which the light-sensitive retina of the eye slowly and progressively degenerates, causing blindness. There is currently no cure, surgical options or treatment.
I’m surrounded by an abundance of cliches, that unfortunately, describe my mindset right now:
- The rollercoaster of emotions
- The good days and bad
- The 5 stages of grief
- The use of humour as a defense mechanism
Oh blah blah!
The rapid daily mood swings, of defiant strength, followed by heartbroken mess are exhausting.
I have told a few people now about my RP (Retinitis Pigmentosa) diagnosis. My Mum was strangely calm, no emotion, no hug, no real anything. She suggested I ate more carrots! Maybe that’s her denial.
My Dad was told the news by my Mum. To date, we have not communicated. I find it strange that his only daughter, can have her world turned upside down, without even so much as a text message of support. When I raised this point with my Mum, I was advised that he wouldn’t be calling me but I can feel free to pop round whenever I wanted…
Thanks?
A couple of friends now know and are currently dealing with the shock. I told my In-laws – that was a very strange conversation. They took the news like champs. My Father In Law advised me to ‘Seize life’. My Mother In Law went for the humour, ‘Well at least you won’t be able to see spiders!’.
A truly terrifying thought!
The day to day is much the same. I’m a busy stay at home mum. My husband is still working away. Everything just keeps going. I have days where I am feeling great. I have days where I feel low and pointless and plagued by panic attacks.
I want to keep things normal for as long as possible. My outlook is bleak but there are millions of people out there, dealing with visual impairment and sight loss right now. Every day. I feel alone but in reality, I’m not.
My husband doesn’t know what to say and finds the whole emotional support requirement alien. I only have a few friends left and don’t want to frighten them away, with this life changing news. People always feel weird around shock medical conditions. They don’t want to get drawn into a conversation, that might be depressing or pose questions, they don’t have the answers to. Their next option is avoidance but they won’t want to be rude, especially as I am losing my vision. They don’t want to be cruel but by that same token, don’t want to get involved or be needed on the regular. I am prepared for my friends to be super busy going forward. Once I tell everyone, I don’t anticipate a huge shift in the status quo. Just a gradual decline of contact. If I am wrong and my friends turn out to be solid and supportive, no matter what, I will enjoy the happy surprise.
The irony of my situation is not lost on me. Fancy giving blindness to a young woman, who is scared of the dark and afraid of dogs!
I am hoping that my decline is slow and I can still enjoy the little things and maybe have a few more adventures. I can’t do anything to stop this. I couldn’t do anything to prevent it. I have a front row seat, to the worst show of my life but I can’t stop the curtain from falling.
‘It is your decisions and not your conditions, that determine your destiny.’- Tony Robbins
If I stay positive the chances are, all the people who choose to stay on this ride with me, will remain positive too. I believe that negativity is a self-fulfilling prophecy. If I approach this new chapter with doom and gloom, that mood will spread and multiply; not just in me but in others. That doesn’t mean that bad days or bad feelings, should be ignored and swept under the carpet. Bad days are part of the process. Anger, hopelessness and tears are all part of this journey. They are needed in order to heal. I just hope I have a network around me that can handle the good and bad.
At the end of the tears in the dark, will be a light. That light will be a person, with an outstretched hand to pull me up, a hug, a kind word, an opportunity, a chance to do something positive. That light could be from inside my heart, from a stranger or loved one.
Waiting for a cure isn’t living. Finding a way to live albeit differently, is moving forward.