AT THE END, ALL THAT TRULY MATTERS IS THAT YOU LOVED’
This is a true story, it’s about one of our RP patients’ real experience from the day he got the diagnose till his determination not to give up the faith.
In June 2016, I commented to Bettina that I had black ‘floaties’ I couldn’t blink away. We had them checked, which showed no problem. The optometrist suggested I should see a specialist. The floaties were getting worse. Ten days later a specialist told me he could seenothing adverse in my eyes. A month later I had a hearing test done which determined I had quite a severe hearing loss. We were wondering what was going on. I seemed to be falling to pieces.
Another month later, further tests were done by the retinal specialist who reported ‘gross peripheral field loss’ in both eyes. My side vision was disappearing, and I was beginning to feel very concerned.
In September 2016, I had an electro diagnostic test done. The specialist didn’t beat around the bush. ‘The prognosis isn’t good. You have a genetic disease known as Retinitis Pigmentosa. Or, RP, as it is known. It usually manifests in very young people.’
After he explained a little more about this dreadful disease, we asked, ‘How do we fix it, tell us what we have to do?’
All he offered were these horrifying words, ‘You can’t fix it, there’s no cure, it’s genetic, there’s nothing we can do. Young children inherit this, and it is usually an extremely slow deterioration, over many, many years, but it inevitably ends in complete blindness. Let your children know, as it could possibly be passed down. They might want to keep a check on their eyes.’
We walked out of there stunned, and horrified. Trying to absorb the finality of, ‘You’ll go blind.’
It was a long devastatingly quiet trip home.
Later, on reading the specialist’s report of my eye test, in part, read—This electro diagnostic test is fairlytypical and consistent with retinitis pigmentosa … Fairly? Didn’t sound like a definite diagnosis in our opinion.
Bettina started researching RP extensively, which all takes time. She found an enormous amount of information on all aspects of this genetic disease. They all led to only one hope. Stem cell therapy. It wasn’t a cure, but if treated early enough, could hold what vision remained. Bettina emailed an explanatory letter with my RP tests to a few stem cell clinics in USA and China, and we waited for their report back. The umbilical stem cells I needed are still illegal in Australia.
I still believed this vision deterioration was temporary and would somehow improve. But as the months passed, waiting for all their replies, my sight was shrinking into central vision only; I was becoming desperate and terrified of a completely dark world that could become a reality. During this time, we contacted Dr Felix, on the Gold Coast, specialising in stem cell therapy. We went to her for advice. She told us that here in Australia, she was only allowed to treat a person with their own stem cells. I needed umbilical cord cells, which were pure, and much stronger than my own weaker, stem cells. She knew of an Italian professor, Dr Lombardi, a retinal specialist in Rome.
Two years had already passed to find, understand, decide on, and send reports to varying overseas specialists. We had finally decided after waiting for replies to come back, and had made a tentative date in September 2018 to go to Beijing, China, for umbilical stem cell treatment, but this was now, put on hold until we had a reply from Dr Lombardi … which wasted more precious weeks.
We eventually received his reply, which shocked us. ‘I am not of the opinion that you have RP, as it appears only in young people, and it takes many years for before becoming completely blind. In my opinion, you have possibly contracted a virus or an infection.’
Bettina had felt alarm since she read, FAIRLY typical of RP in the report, but didn’t know what we could do about our fears. My retinal specialist hadn’t heard of an older person having this RP either, but had no suggestions to offer me.
After being told the conditions to be met by Dr Lombardi’s offices, there was no way we could travel to Italy for the time of three to six months he was suggesting. It was logistically impossible.
After further advice from Dr Lombardi, Dr Felix sent my blood sample to Germany to be analysed. It came back positive with a ‘Virus Antagonist’ found in the blood. She immediately infused me with the treatment they had included. We could do nothing more.
At least the stem cell therapy I receive will have no foreign ‘antagonists’ to fight against. We hope! Physically, I felt great, and ready to go.
During the first consultation with Dr Felix, Bettina asked her about the possibility of using her own stem cells to improve her lung disease ‘Chronic Obstructed Airways Disease’, or COPD, which she had contracted when very young. Lung problems responded remarkably well and quickly to this treatment. There was no doubt she should do it. Dr Felix was shocked when she realised Bettina intended going to Beijing with me and pointed out very clearly that, ‘Bettina’s lungs were in no condition to fly anywhere. Particularly to Beijing.’ We hadn’t considered that possibility. No worries, we would find someone else to accompany me.
We could no longer wait, so we booked again, for Beijing on the first date available …19th of November 2018. Although by then I had lost my sight.
Bettina had her own stem cell treatment in November 2018, a week before I left. There was immediate improvement with her breathing, which had been deteriorating rapidly lately. She very rarely has her puffer and can walk further without fighting for breath. It was easier for me to leave her, knowing she was in good health.
Bettina was so upset she couldn’t be with me. We had never been far from each other’s side for the last thirty years and this was the most important time in our life, and she wouldn’t be with me.
It wasn’t easy finding a companion who would take on such a commitment as I needed. There were three or four who were willing to be my eyes, but, for one reason or another, all quite valid, couldn’t make it. We both knew the right one would turn up. No coincidences—remember?
And she did. Our friend Linda, an experienced nurse, and the most delightful woman you would ever want to holiday with, offered happily to be my companion. Her grandmother was Italian, so she had a soft spot for me. Bettina was thrilled and very comfortable that Linda would be with me. I had the right companion at last. We were picked up at the airport in Beijing, the car and driver at our disposal during the stay and would take us to the airport on our return, twelve days later.
The experiences we had on that trip were never ending. We rarely stopped laughing. The Chinese coordinator, Carol, spoke perfect English, and as I was the only ‘foreign’ patient at the time, we were both treated like royalty. The sincerity and gentleness of all the medical team was the best I could have ever found. The treatment was painless, I needed no anaesthetic. While we were there, another couple of male RP patients came in from other countries for stem cell treatment, and Linda witnessed their instant sight improvement. We certainly turned their small, poky hospital into a loud happy and friendly place to stay.
None of these ‘patients’ were sick. All of us came in with high hopes; the majority went home with more sight than they came in with. They boasted a very low ‘failure’ level, and no patient had ever suffered from any side effects. The doctors had never treated anyone so old, or as fit and well attempting this procedure at eighty-seven. They all called me Nonno, or Uncle. I think they had never seen the likes of us before and were sad to see us go.
I had to do this, no matter what the outcome. They had warned me of the probability of it not being successful, as I went over with no sight at all. That was my choice. If I had not done this, I would have always wondered … would it have worked? I was very satisfied that we had chosen the clinic we did. They were all very professional and most caring. After doing extensive tests on my eyes, they too came to the same conclusion as Dr Lombardi and agreed it was most doubtful, I had the genetic condition of Retinitis Pigmentosa (RP). They also told me to be patient as stem cells introduced into the body can take from six months on, to strengthen and multiply. I must believe it isn’t too late. I did have an IV treatment of these stem cells through my arm, to relieve my many and various rips, tears, and arthritic pain in my joints. These stem cells worked for me almost immediately. My ripped shoulder and bicep, and arthritic pain in my joints, all disappeared miraculously.
It has been over six months now since Beijing, with still no change of sight. I shouldn’t be surprised. But I can’t get any kind of grip on this black hell I’m forever in. It affects everything in life. Some of which I would never have imagined.
I need to have clean clothes put out; I don’t know if I’m clean or grubby. Food holds little interest and no pleasure for me, and I need to be told what is in my bowl. My mouth is often hard for my spoon to find, even when wide open. I don’t enjoy eating out now.
A car ride is a stomach-churning ordeal as I don’t know when to brace myself, when turning corners, roundabouts, and braking suddenly, and have actually needed a quick emergency stop, for me to open the door and throw up. I have no idea of which direction I am going, and if I lose my contact with some familiar object, I have no idea where I am. Panic is truly a terrifying emotion. I have forgotten what a full night’s sleep is, as my life is one off and on doze. The only way I know the difference from day and night is with the activity and noise of day, against the quietness of night, and my seeing dreams. I have a talking watch that tells me the time.
I have met many voices, and have a hard time putting names to voices floating around. It has to be a one on one for me to enjoy a conversation, although I often find I’m talking to myself, as they have moved away for some reason, and haven’t thought to tell me.
The highlights of my day are simple now—6:30 am, my ‘seeing eye’ girl makes us both a short black, which we drink in bed while we listen to motivational or meditation tapes, or she reads to me, or we just talk. For the last nine months, she’s been pushing my brain for details, and memories of my past to add to this book. At least it gives me something to think about, other than my fears. I’ll never be able to thank her enough.
I’m used to finding my way around our upstairs bed/bathroom, so can mostly, handle that part myself. I find my way downstairs to my ball stick, the sunny verandah, exercising with weights, ‘dancing’ around the front poles to keep fit, in case Bettina might ask me for a dance one day’, and the radio, which keeps me up with news. Midday, I listen to TV’s Dr Phil, and doze between all this activity, either in the lounge or out the front. Evenings, after a meal, I’m dozing again, and a lonely TV night for Bettina, who struggles to repeat what she’s just seen and heard and can’t remember it all anyway. I lose interest really fast and doze off again. Poor girl, it’s all just so hard for her too. I respect her so dearly, and this makes me love her more. She tells me when it’s bedtime again. I believe her. I’m always tired anyway. I must sleep sometimes, because I have these strange dreams, in which I can see perfectly, and remember vividly.
Between attending to me and my needs, which are many and varied, Bettina is keeping a clean house, inside and out, making meals, writing a book, researching for me, shopping, doctor’s visits, mine usually, tea and coffee making for the many folks that drop in almost daily. What can I say, except, she sleeps like a log as soon as her head hits the pillow. Must be her age, eighty-two. Unbelievable! To me, she will always be as young as I remember her.
My hearing is deteriorating, and I’m continually adjusting my hearing aids, or trying a better pair, which keep me busy and annoyed. I feel, and seem to become, invisible with three or more speaking. Their chatting is all a confusion of noise to me. Female voices are really difficult to understand. Everyone is just a voice, with fading features. It goes on and on, and I don’t expect anyone, other than a blind person, or Bettina, who lives with it 24 hours a day, to understand. I’m just telling it as I ‘see’ it.
Looking back, this is lot of complaining and does not sit well with me. Forgive me. But maybe it will open eyes that don’t think about seeing, to realise it’s the biggest gift we have.
I do have something to look forward to every day, like walking around the block with my best guide and good mate Rhonda, Bettina’s eldest daughter. Fortunately, she lives only two doors away, which is a blessing. Rhonda, myself, and my stick, know every stone or pothole in this twenty-minute walk. These walks are the highlight of my day, as we stop and chat with others, and have got to know each other so well. She’s our ‘Jill of all trades’ and often at mealtimes we hear, ‘Oops, I’ve got plenty of food, I’ll bring some over.’ She puts the garbage bins out every week, Gardens … anything. God bless her.
Jenny, Bettina’s sister-in-law from Geelong, and one of our oldies from fifty years back, has just been with us for three weeks. She gave Rhonda a break with the walks and would often take me a couple of times a day. We caught up with so much. What a dear friend she is to us both.
Vision Australia … What an amazing institution we have in Australia: to be there for any vision impaired person, offering so many different kinds of help, from fitting a grab-rail in the shower, to the offering of a psychologist, to help and guide me through the different stages of my rapidly progressing blindness. They have supplied me with the many aids I now need. I have carers to sit and talk, or take me for instructional walks, audio machine, canes, talking watches, etc. My helpers are all delightful, caring people. Although I don’t have a guide dog, the ‘Guide Dogs’ also help in cane training and outings if want. There are so many wonderful people, genuinely wanting to help make life easier for others.
The worst thing is I think I’m beginning to forget my beloved’s dear face and beautiful eyes that I so loved to look at, and that breaks both our hearts. Pictures my eyes saw are beginning to fade. How much more can Bettina take of this? I hope and pray she can remain strong for both our sakes.
I keep trying to accept the way things are, and believe things will get easier, as time goes on. Bettina says, ‘We need some fun in our lives, we must laugh more, I’m tired of crying, it’s too sad.’ And she is so right. We still gravitate together when our song comes on. Bettina drops whatever she’s doing, and we have a quiet cry while moving in each other’s arms. Tears are always hanging on the edge, ready to fall.
Greg’s wife, Tiffany, is a beautiful singer, and Bettina once asked her to learn our song as she didn’t really know it. We had a happy evening here for Bettina’s eighty-second birthday. Suddenly, we heard our song come on, and Tiff started singing to us. We magnetised again in each other’s arms and we didn’t even try to stop our tears from falling thick and fast. Others told me we weren’t the only ones with tears, including the grandchildren. It was a night to remember. Tiff sang with all her heart.
She surprised us again on another occasion when singing at a club. Suddenly we heard her say ‘this next song is dedicated to an amazing couple, who are very special in my life’; she then started singing our song. Bettina led me to the dance floor, and we danced. The first time we had done that for a long time.
Life is not all bad, sometimes it is still beautiful. And with so much love surrounding us by all of our incredible family, who are also amazing friends, and the God given love between us, how can I not feel thankful, blessed, and cheated all at the same time. I will be searching for a light, until the end of my days. Maybe a bionic eye will find it for me. Everything happens for a reason.
And I will always have faith in our inside love. Blind Faith.
AT THE END, ALL THAT TRULY MATTERS IS THAT YOU LOVED’