Melissa's Vision - was deteriorating rapidly

I am a mother fundraising for my daughter Melissa, I am saying a big "Thank You" to those generous people who have already donated to assist Melissa. People whom I have never met!  Melissa will not know about this effort until the goal is in sight.

Melissa is not dying but her eyes are with her vision deteriorating far more than we would ever wish.

If you were to place your forefinger to your thumb and create a circle that will give you an idea of how little Melissa can see, very little, then pretend the room is smoky and maybe you will have an idea.

Melissa has RP (Retinitis Pigmentosa) diagnosed when she was 9 years old, when she had only 12 degrees field vision, your normal visual field can be up to 120 degrees. Melissa currently has only 2 -3 degrees of field vision. 27/11/19 photos of her retina do show a deterioration, yet she still has viable central vision, however Melissa is legally blind.

With the uncertainty of how long Melissa will have some remaining vision it is now urgent for Melissa to see as much as possible and that includes a special time to visit her nephew in Canberra who she has never had the opportunity to see in person, he lives in Eastern Australia and we are in the West.

Circumstances make it difficult for my son and his family to visit here and it would work better if Melissa were to be nearby where family could be together plus giving Melissa a welcome change. Melissa is often planning short trips away in Perth her budget permitting.

Don't we all love a holiday?

Melissa's Memories

There is significance in the shared memories from our holidays and travel that are extremely important to Melissa.

Saturday is the day she visits us for lunch and dinner with support Staff picking her up at 6:30pm. Those visits can be quite intense as she wants to share our travel memories and I am realising how she is making up for the times she doesn't always have access to stimulating adult conversations.

As I have mentioned in an earlier post.

Melissa was 9 years old when she was diagnosed with RP (Retinitis Pigmentosa), with only a 12-degree field of vision at that time. We weren’t to know how quickly Melissa’s sight would deteriorate, so in my mind it was essential to enable Melissa with happy, interesting visual memories.

Melissa at age 44yrs, with her vision slowly deteriorating she has only 2 - 3 degree’s field of vision, or less, it is so difficult to know from her descriptions.

In 1988 Melissa's blind pension was saved and I worked a year without holidays in midwifery nursing, picking up extra shifts preparing for a 11 week overseas family holiday.

Our base was in England in 1989, thanks to the courtesy of a friend, we stayed in a Cambridge townhouse overlooking Jesus Green. For the first week we enjoyed the local scenery, during which time we travelled to London by train.

We then travelled further afield catching a ferry across the English Channel to Calais, to explore scenic France. We hired a car to enjoy staying in caravillas at several Euro Camp sites across France. The camps were great fun for Peter and Melissa, son Pete could disappear on a mountain bike at times to tell me he had seen an iconic “something or other!”

Travelling on to Germany, where Melissa's father had friends, who accommodated us for a couple of nights. Melissa particularly, remembers how fascinated she was by the town of Trier, with its Roman history, and most beautiful eclectic Cathedral.

Back to Cambridge for a short break, then we drove to Wales and Scotland, for Melissa to "see" so much more, including the longhaired Scottish Highland cattle.

We continued to travel, and in 2000, with my role in Retina Australia, I attended a Retina International bi-annual conference in Canada. Following the conference in Toronto, Melissa and I journeyed on trains, buses and planes from coast to coast for one month. It was a memorable trip that was so busy for me as Melissa’s carer. However, it was a welcome relief, when we joined the Globus bus trip, for a week touring the Canadian Rockies with other tourists. The tourists were mostly from the US, and we were so grateful for how they helped me with Melissa.

In 2004 Melissa and I travelled to Rome and she enjoyed 2 weeks in Italy. Partner Keith met us in Rome and we drove on through Italy sharing a week in Tuscany. One highlight was a train trip to Florence to see Michael Angelo’s statue of David (big tick off my bucket list!) an absolute surprise for Melissa when she was looking at David, full frontal, her rather loud OMG had the other tourists laughing.

Back to Rome, and 2 after weeks we sent Melissa home, there was a Retina International Conference to attend in Holland. Melissa travelled on her own back to Perth via Singapore, with airhostess assistance, to be met by family (father & brother). She told me later, they forgot to give her soap when she had a shower in Singapore!

The flights were delayed, but the food was great!

Many other visits to her cousins in Adelaide including family weddings are so much a part of the tapestry of Melissa's memories. Her recall and detail of these holidays astound me!

Last year Melissa had four short holidays in WA usually two or three nights. Keith and I have taken her twice, we have two nights planned soon to go to Mandurah. I will be the 24/7 carer, no simple task!

Melissa's NDIS funding does not cover short holidays; we have only afforded two carer funded trips each year. Carer support alone can cost $1500+ for just two nights.

It had been said years ago that Melissa's maturity would slow in her 30's, but I can categorically say it has not. Yes, her thoughts and moods may be scattered at times, but in my books she is improving intellectually. Therefore her need for stimulating activities and future planning have increased. What would we know?

So much to consider, my hope is for Melissa still to meet her nephew William, who will be 10 years old in November. Unfortunately because of changing circumstances has moved to Goulburn, NSW. The best plan may still be to catch up in Adelaide, where Melissa will again see her cousin's, where William will be "gob smacked" with the large extended family he has never known! Watch this space

Outing a few years ago with a Support Worker, at Clancy's in Fremantle, her father's ashes were scattered in the park nearby so she visits on the anniversary every year in memory of with a soda/lime/bitters. 

Melissa's Words.

Melissa has rarely complained about her vision, I could almost count the number of times she has mentioned it on one hand.

·       “Mummy I wish you could do something about my eyes?”  Melissa was about 13 yrs old then. We were driving and she could not see my silent tears.

·       “Mum, I am worried about Peter (her brother)”  “Why?” “Because when something happens to you he will have to care for me!” Melissa was in her mid twenties then. Solved, she has been in a Group Home since Feb. 2013.

·       “Mum, can you tell me how the scientists are getting on with the vision research please? Can you ask them to hurry up?” Then “Just joking” she said, so often a true word is spoken in jest! I was President of Retina Australia at that stage, travelling the world to International Vision Conferences to find out first hand what was happening in vision research, sadly for RP sufferers (Retinitis Pigmentosa) there are still no cures.

·       “Mum, I am so glad that William does not have the problems I have, that he is normal!” Spoken six years ago when my first grandchild/nephew William was born. Melissa told me she had worried about that during the pregnancy. Profound caring thoughts coming from a person with is mildly intellectually challenged. 

·        March 2014 Melissa was distressed over the phone and was concerned that she is still having paranoid thoughts, then she said, quickly and quietly “I can’t see!”

The last comment from Melissa was quickly followed up with the Lions Eye Centre in SCGH and she did indeed have some post op cloudiness in both eyes following previous cataract operations and required laser treatment. It may only make a minimal difference to her rapidly failing sight; we sincerely hope it helped a bit!

Melissa rarely airs her concerns, but when she does it is relevant and poignant always bringing me back to the grief process. When people meet Melissa they have no idea she is virtually blind; she doesn’t want to make it a huge issue so refuses to wear a badge or carry a cane to identify her limited vision. Vision-impaired persons, either embrace the cane or they do not, it is their choice.

It is very easy for others to not understand she has these limitations, I have had to apologise and explain many times in shopping centres when she has bumped into someone or when she has to really stare at people to see their face. It is difficult for some to have empathy to truly understand Melissa’s individual requirements and limitations.

Robyn Wright: Revised 2019

This photo of my niece and Melissa (age 26 yrs) was taken in 2005 at a family wedding. I have tracked Melissa's vision since she was 9 years old.

You can see by looking at the "red eye" effect how Melissa's pupils are widely dilated to try and get as much light to the Retina as possible.

Whereas my niece has normal pupil size, over the years Melissa's pupils have now constricted and cannot dilate anymore to accept the light.

If you have time - Melissa's history, or some of it...

 Melissa was “small for dates” baby, following a normal birth, was bright and alert at delivery.

Happy childhood with her elder brother Pete, life was full of healthy activities, tee ball, camping, fishing, camping, birthday parties, travelling interstate to visit relatives and holidays by the ocean. The island Rottnest off the coast of Western Australia was a particular family favourite!

It soon became apparent that Melissa was “different” with significantly delayed milestones, talking, walking and mildly intellectually challenged. Catching up slowly like a "dial up computer" Melissa has a mild/variable intellectual learning disability, though with a brilliant memory, an impressive vocabulary and gentle speaking voice. We have never been able to discover any particular syndrome to explain her differences and it does not seem to matter any more.

We learned that Melissa had RP - Retinitis Pigmentosa when she was 9 years old, more commonly known as “tunnel vision” it meant that her vision would rapidly diminish. With only a 12-degree visual field at that time it was decided that we would ensure Melissa travelled, the goal to create a memory in her “mind’s eye”. In 1989 the family travelled to Europe for 11 weeks visiting England, Belgium, France, Germany, Wales and Scotland. Melissa has seen the Eiffel Tower at night, a spectacular sight, passed Loch Lomond (no Loch Ness monster!) and highland cattle; she remembers all that holiday with her keen memory.

As President of Retina Australia for 4 years I travelled to Retina International Conferences in the search for answers, a cure? 

To date there are still no cures, I receive daily Google Alerts - Eye Research Retinitis Pigmentosa.

Many short trips over East to Adelaide for a number of family weddings and visiting her much loved Grandma, last but not least her brother Peter’s wedding in Sydney in 2010. 

 Travel and family outings are all firmly recorded in Melissa’s “minds eye”.

Whatever the cause of her current "blurred vision" it is now urgent for Melissa to see more before her vision has deteriorated significantly that is blind! 

Life changed more dramatically in 2009 when unknown adverse circumstances caused Melissa to have a “psychosis episode” tripping us into a different world that of Mental Health. Despite being a Registered Nurse/Midwife all my working life we found ourselves in seriously unchartered waters for 3 years. Melissa was treated with many anti-psychotic medications, which I believe to this day may have exacerbated and accelerated her vision loss. Currently her mental health is stable best it has been for many years as a new psychiatrist vows to assist us keeping her medications less rather than more.

Melissa is happily living in supported care in a disability services Group Home with four other residents since 2013.

Friday outings are at the E Shed in Fremantle where several groups of people with various disabilities get together and enjoy dancing, Melissa has to be guided to the dance floor. She said she loves sitting at the bar, but of course she cannot imbibe! It's the photo I like!

Melissa has never met or seen her only brother Pete's son her nephew William, now six years old and she may never see him if her vision keeps deteriorating at this rapid rate, that thought always brings me to tears. There are various reasons why they have not been able to visit her in WA.

I have found suitable accomodation in Canberra for Melissa, myself and a Carer, costing includes airfares and a Carer Melissa requires 24/7 personal care and assistance with her daily activities, more particular guidance in any new environment. I am unable to assist her fully because of my own physical limitations.

To be able to take Melissa to Canberra for a week to be with the family will become a reality, keeping this as a surprise for her until it is a "happening thing".

 Thank you for listening.

                                                        Robyn Wright  November - December 2019