My Health and Eye

View from the Other Side

  • SS – Sighted Supporter
  • VIP – Visually Impaired Person

Sighted Supporter’s can take many forms.  Mothers, fathers, husbands, wives, brothers, sisters, daughters, sons, in-Laws, other family members, best friends, friends, neighbours, colleagues and care workers.  Apologies if I have missed anyone.

If you are a lucky VIP, you have a kick-ass network of people, that are pumped and ready to knock this set-back out of the park!  Yeah it’s hard, awful, scary and just plain unfair but you and your team are focused, positive and will ride the bad days and great days with humour, strength and kindness.

If you are not so lucky.  You have very few people in your corner.  People who know what’s happening and are in denial.  Folk who have disappeared completely as they don’t know what to say or do.  Individuals that act like your life is over.  Peeps just hanging back and hoping that you get some miracle cure or some dose of spiritual, emotional or physical strength so you can basically; sort yourself out and maybe hold the door open for them as they find it all too much. 

I always like to give balance when I write.  As the VIP, I am going to address some comments, made by SS’s in a fair and supportive way.  I have had the privilege of being able to observe others in this VIP/SS relationship.  I will take on the SS comments and give my response as the VIP.  

A comment that gets thrown around often (not to me yet, thankfully), needs to be addressed first:.

“It’s not all about you!”

Well quite.  The appointments, the diagnosis, the follow ups, the tests, scans and general aftermath of impending sight loss, is not all about the VIP.  Well, it kind of is but there are many SS’s, that are standing right there beside that VIP, as this new challenge constantly unfolds.

SS’s are scared, they are mourning the same loss, just for different reasons.  No mother wants their child to suffer in any way.  No partner, family member or friend, wants to see someone they love, be given a game changing diagnosis with no hope for a cure or treatment.  Some would rather bear it themselves, than allow a loved one to face it.

The plans you made for yourself or together might be forever changed, postponed or just plain cancelled.  The fear, frustration and general unknown, rattle around everyone’s mind.  Whether you’re a VIP or SS – It’s a loss.  Its heartbreaking. It’s scary.  What happens next?  What now?  What do we do?

Acknowledge that you are a team.  A VIP/SS tag team if you will.  You may have a massive squad of support or an intimate few.  Whatever the case, you’re a team.  In this together.

So let’s talk

Let’s dive into some of the SSs comments and frustrations I have come across online:

SS – It’s not all about you

VIP – Agreed.  Like any shocking and life changing diagnosis, it affects loads of people.  It’s not a competition as to who is suffering more but it’s important to understand that those around the VIP, are also scared, angry and worried about the challenges that lie ahead.  The daily small stuff.  The weekly planning. Everything will change and need to be adapted.  It’s a lot…for everyone.  

SS – Sight loss is all we talk about

VIP – Easy trap to fall into.   It’s like a giant meteor that falls to earth, leaving a massive trail of destruction, that you can’t miss, avoid or ignore.  That said, each of you were entire whole beings before this; with thoughts, feelings, dreams, jobs, kids, homes, hobbies and guilty pleasures etc.  You are still you. Sight loss is a part of you and your families lives. How big a part you allow it to have?  That is in your control. 

SS – I feel like people forget about me and you get all the attention.

VIP – Getting lots of attention on a good day is difficult for me.  I don’t like being the centre of attention on my birthday, let alone anything else.  It’s just not me. It’s easy to focus on the person going through the loss, to ask how their feeling, are they ok?  Coping?  Is there anything we can do?  In the background is a person or people who have made small, large and/or everyday changes to their lives to assist the VIP.  They may be required to do more, things they’ve never done or weren’t good at.  They are constantly thinking ahead, being more patient and trying to get used to their new role; within a relationship with the added pressure of feeling that they have to be okay and good natured about it all.  Don’t forget about the SS!  Also, it’s not all doom and gloom either.  This is when other folk always want to ask or talk about sight loss…it’s not everything unless we make it so.  Also despite there being an element of coping, we are not just surviving Monday through Sunday – We are living. 

SS – It’s a little annoying that I have to do all the driving.

VIP – Oh what I wouldn’t give to alleviate this burden.  Yes that sucks.  It’s a drag.  Its tiring at times and adds more hours onto your already rather swamped week.  We cannot change this but acknowledge that it’s hard and trust me, we don’t take it for granted.  We would also love this to be different.

SS – Our roles have completely changed and I’m struggling.

VIP – Another situation that is often overlooked (no pun lol).  Maybe the VIP was the driver, main wage earner, handled the finances, dealt with all the mail, took care of the school runs, did the bulk of the DIY, prepared all the meals or was a stay at home parent, programmed the technical gadgets in the home; the list will be different for each individual.  The struggle is for both sides.  The VIP yearns to be independent, feel valued and able to make the same contribution as before. The SS may feel that their ‘To Do list’ has doubled in size and they need a break or just to say out loud “Damn this is hard – I feel like it’s all on me”. It isn’t all on you and it’s ok and completely understandable to be overwhelmed.  The transition phase is usually the hardest but bad days will still creep in no matter how slick your new routine is.

Ok so what have we learned so far?  Sight loss sucks.  The VIP and SS’s will each go through tough times and need a little extra help.  They will need a break. They will need to remember who they were and find a way back with the necessary adjustments.  There will be tears but we can’t give up.  There is beauty in everything.  You have to want it.  You have to find it.

‘Nothing worth having comes easy’ – Theodore Roosevelt 

Look after your SS’s; just as much as you would like them to look out for you as a VIP.  Stop and ask each other, how are you doing?  Talk about life, all of life, not just the parts that involve your eyeballs!  Don’t lose yourself or each other.  

‘Without commitment you’ll never start but more importantly without consistency you’ll never finish’. – Denzel Washington

Keep going. 

Keep Talking

Laugh. 

Appreciate the small things and don’t spend too much time dwelling on all the losses and difficulties.

If you have or find an awesome sighted supporter that loves you, laughs with you; takes the bad in their stride and the good with all the happiness of a child at Christmas – hold onto them!!!  Obviously quite literally at times but also mentally and emotionally.

Its game changing not game over!

VIPs work, yes hold down paid employment people!  They marry.  They have and raise kids.  They safely navigate their way through their homes and the outside world.  They cook.  Look after others.  They travel.  Attend gigs parties and events.  They live.  They contribute.  They are everything they were before just with additional support on occasion.  That support has many forms; wearable and voiceover technology, service dogs, low vision aids and our beautiful sighted supporters.

Some of the most successful people, whether sighted or visually impaired, are that way in part because of their amazing team of fabulous people around them.  

Be That Team!

Be fabulous.  Be brave.  Be kind.  Be patient.  Be the best version of yourself.

Now go and knock this set-back out of the park!

 

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