Standing By My Wife Through Her Cancer Journey (by Cameron Von St. James)

I was contacted in December by someone who wishes to share his family’s personal story.  This truly inspiring account written by Cameron Von St. James demonstrates the power of hope.  It has also inspired me to revitalise this blog.  Thank you Cameron.

Standing by my Wife Through Her Cancer Journey

family - Portland

On November 21, 2005, my family’s lives changed forever. On this day, my wife Heather found out that she had malignant pleural mesothelioma. It had only been three months since we celebrated the birth of our first child, and instead of getting ready to celebrate our first Christmas together, our lives were heading into a chaotic period.

Before we even left the hospital, I knew that I would have an important job ahead. Caring for a cancer patient would be extremely difficult. After the doctor told us about mesothelioma, he gave us three places we could go for treatment. My wife was speechless after learning about her diagnosis; therefore, I made the decision to go to Boston under the care of Dr. David Sugarbaker, a renowned specialist in the treatment of mesothelioma.

During the next two months, we were living in a very chaotic situation. Heather and I both used to work before she was diagnosed with cancer; however, after her diagnosis, she could no longer work. As for me, I could only work part time. I had to care for my wife, travel to Boston, and take care of our daughter. I was so overwhelmed and often thought about the worst possible outcomes.  I was terrified of losing my wife and being left alone to raise a daughter who would never really know her mother.  On several occasions, I found myself breaking down and crying when I was alone.  However, I never cried around Heather because I knew she depended on me to be strong for her.

We were blessed to have so many people to help us. Many people would give us  both words of comfort, and financial assistance which we so desperately needed.  I was so hesitant to accept their help at first, but as soon as I let go of my pride and started accepting the generous offers that were coming our way, a huge weight was lifted from my shoulders. If there is anything that I would tell people dealing with cancer, it would be to take any offers of help offered to them.

Caring for someone with cancer is difficult, and most people will experience a ton of emotions; however, it is important to not let the fear and anger take control. By continuing to have hope, life is easier to manage.  It was the most difficult journey of either of our lives, but after Heather’s intense treatment involving surgery, chemotherapy and radiation, she miraculously beat mesothelioma, a feat so rare it is almost unheard of.
After this ordeal, I decided to go back to school to study Information Technology.  My experience as Heather’s caregiver helped prepare me.  I graduated with high honors, and at my graduation, I was the student graduation speaker. During my graduation speech, I informed the audience that I would have never imagined giving a graduation speech five years prior; however, by having hope and never giving up, people can accomplish more than they have ever dreamed of accomplishing.  Heather and Lily were in the audience to cheer me on, and that was the best reward of all.

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HELP! I’M GOING BLIND!

Wondering if you might be going blind is not a pleasant thought.  Knowing that you’re going blind can feel like you’re heading for eternal doom.  In this post I hope to paint an alternative picture of blindness for those readers who know that this is an inevitability.  I will  also offer some practical advice, and hopefully by the time you’ve finished reading this article the word “blind” will  not conjure up such fearful images.

Deteriorating vision is easier to deny than to accept.  For one thing, the human brain often compensates for sight loss by replacing indistinct shapes with recognisable ones.  So if your eyes register a blur in front of you your brain will try to make sense of it by replacing the blur with familiar objects.    The dancing cat or waving monkey may in fact be a crooked fence post or a canvas sign flapping in the wind.  At this point your friends or family will probably be nagging you to “get your eyes checked”.    Your vision defect could turn out to be something  that’s curable or helped by prescription glasses.  But occasionally the situation may be more serious.  You might suspect this and be afraid to have it verified, or perhaps you’re already under an opthalmologist and you know that sight loss is fast approaching.
This is often where fear of the unknown – i.e. being blind, takes over your rational head.  Sometimes the easiest thing to do is simply to ignore the reality and get on with your everyday life.  But the trouble with this approach is that one day, if sight loss is inevitable, there will come a point when you can no longer run away from it.
Most sight loss is in fact gradual.  It’s extremely rare to wake up one morning and find that you’re totally blind. You’re more likely to realise you cannot see when you’re trying to read something or spot someone in a crowd.  This realisation that you’re practically blind will probably hit you with a bang, and your world will go topsy-turvy for a while.  Therefore if you know that one day you’ll be blind, it makes sense to slowly introduce yourself to this concept.  A good way to do this is to familiarise yourself  with some of the gadgets and gizmos that are out there to assist visually impaired people with everyday tasks.  You could start with something basic such as a liquid level indicator.  This useful inexpensive little gadget has plastic prongs which hook over a cup or mug, and vibrate or beep when the hot water makes contact.  You may well encounter resistance from people around you who don’t wish to think of you as being blind.  This can make arming yourself with gadgets and paraphernalia tricky, but don’t be deterred.   Talking alarm clocks and audiobooks do have some general appeal nowadays, so if you share your living space with others there’s no reason to be isolated.  However, other people’s reactions are not always helpful – it might be worth bearing in mind that they will be having to readjust too as your vision deteriorates.
 This preparation period could be viewed as a blindfold test drive.  It doesn’t mean you have to become preoccupied with blindness, but becoming more self-aware will help you later on   Familiarise yourself with  what’s available before you absolutely need it.  Browsing through the RNIB catalogue or on an Assistive technology website  might even be inspiring!  You’ll probably be amazed by the variety of aids and gadgets on offer,and most of them don’t require great technical know-how to operate.  The whole point of these things is to help not hinder!
If you’re at the stage where you know your sight is failing this is a great time to build up your list of contacts.    Your local association for the blind, or charities such as RNIB or Action for Blind People are great resources.  The RNIB has a helpline: 0303 123 9999.  Knowing that you’re going blind is actually a great opportunity to consider what you want to do with your life, and to ascertain what assistance (if any) you might need to achieve your goals.  It doesn’t have to be a headlong dive into despair.
Coming to terms with  blindness is often harder than the blindness itself.  Facing it head on might seem like the last thing you want to do.  But from my own experience the more you stick your head in the sand the longer it will take to readjust.  As I mentioned before, blindness is more often than not a gradual process.  Imagining being blind can be frightening, so it’s a good idea to find someone who will listen to your fears and anxieties.  An objective person such as your GP or RNIB staff might be able to offer more practical advice than someone close to you.
What is being blind like?  Blindness does not necessarily mean total darkness.  Most registered blind people in the UK retain some light perception or are able to make out hand movements.  Being registered blind essentially means that the vision you have is no longer reliable or useful.  This does not mean your life has to stop or tone down, but you will need to find other ways of continuing your hobbies.  For instance I’ve always been a bookworm, and when I lost my sight I missed reading more than anything else.  But once I’d accepted that I could no longer read print I began listening to audiobooks and Radio Drama.  Although it doesn’t quite equal reading, I can still get my fill of literature  from Audio libraries such as Calibre and RNIB.
Whether you lose your vision suddenly or gradually you’ll find that you learn to manage indoors far more quickly than outdoors.   The big wide world outside your front door might become a source of terror.  This probably accounts for why around 180,000 visually impaired people never leave home alone.   I can’t pretend that the outdoors isn’t scary at first.  But  I know for sure that it gets more and more scary if you start hibernating.  For this reason I would make it a priority to step outside your front door at least once a day.  You don’t have to go anywhere – but just listen to the birds, inhale some fresh air, stand still and absorb your surroundings.  Slowly a whole new world will start to emerge.  Sounds will seem sharper, the rain will make your nose tingle with a medley of smells,  and if you’re lucky someone might even call a greeting to you.  Even if you meet no one, you’ve shown yourself to the world and you’ll go back inside a more refreshed person.  In time, you’ll find that you still have a place in the world.
It’s common for newly blind people to become very depressed.  Losing your sight is a huge loss, and you will grieve.  If your sight loss is sudden and you’ve had to change your whole lifestyle your emotions will be totally out of sync.  My advice would be to go with your instincts and not to expect too much from yourself.  Accepting that your feelings are natural will help you move forward.  There’s no time limit to adjusting – some people may take 20 years to feel comfortable with their blindness, and others just a few months.  It’s your journey, and you’re the one deciding how fast to travel.  Perhaps it’s worth saying here that a lot of people who find themselves suddenly disabled in any way struggle with asking for or accepting help from others.  You’ll learn how to balance keeping your pride and independence with getting to where you want to go.  This comes with experience.
But blindness or near-blindness does not mean the end of the road.  In fact it’s often a new beginning, despite the fact that you’d rather not have had a new beginning.  When I was at the ‘Guide dog of the Year Awards this year I met Scott and his dog Travis.  Scott lost his sight in 1993 and has just received an MBE.  He’s trekked hundreds of miles, climbed Ben Nevis with his Guide dog and raised £!25, 000 for Guide dogs.  Blindness does not stop you having a life.  Not every one will have the inclination to climb Ben Nevis, but whatever your goals are you can still achieve them.  Being blind may mean that it takes you twice as long, but perseverance pays off.   In my own life it took 18 years to be matched successfully with a Guide dog, but the great benefit of achieving something after a real effort is that the victory tastes super-sweet.
There will undoubtedly be days when you wish you were dead.  But if you forge on you will emerge stronger and more determined than ever.  Your life will not be the same as it was before your sight loss, but that does not necessarily mean it is worse.  Whether you end up training with a Guide dog, competing in the Paralympics, wading through the CDs of the RNIB library or learning to touch type – you will find your own way of learning to live with blindness.  If you keep hold of your dreams and don’t give up,  the darkness will  eventually lose its gloom and you’ll feel the radiance of a rainbow light up your life.

Going blind – what then?

Many people have asked me whether I’d rather be blind than deaf, or if I wish I’d been born blind rather than lose my vision at 18.  I never have much of an answer to these questions, as I can only deal with what I know.  For a lot of people, going blind is their “worst nightmare”.  I met this nightmare head on when I became a paid up member of the “blind community” in 1989.

Although I was born blind in one eye due to a condition known as coloboma/microphthalmia, this did not prevent me from attending a mainstream school.  I  considered myself to be more or less the same as my siblings and other children my age.  When I gained a place at St. John’s College, Oxford, to read Classics – I thought I was entering paradise.  I loved Classics, and still do in my heart.  But this is where my life took an unexpected turn.  During my first year I experienced a sudden onset of glaucoma and within weeks my useful vision had more-or-less disappeared.

I felt utterly helpless and at the mercy of other people.  For a short while I  tried to carry on as if nothing had happened, though reality came down on me pretty fast.  It was obvious that I could not continue at Oxford, so plans were made for me to attend the Royal National College for the Blind.  But I had no intention of readjusting or rehabilitating.  All I wanted was to see again.  That was my one and only mission.  Therefore I resisted all help and refused to consider using technology.  In those days assistive technology was fairly basic.  The BBC computers with early versions of JAWS had absolutely no appeal for me.   If anything, technology scared me –  I couldn’t even type my name.  Everything was beeps or bumps.  I wanted to obliterate beeping clocks and tactile mats.  They were reminders of my blindness and I pushed them away.

So my first days at the Royal National College for the Blind were pretty hellish.  There were some people who, like me, had recently lost their vision.  Others had never been able to see, and others could still see but not particularly well.  The thing I found most difficult was being surrounded by blindness.  It wasn’t a world I accepted.  I don’t even think I considered myself to be blind, I was just me.

Looking back it was the psychological impact of blindness that affected me most.   Accepting my situation was far harder than not being able to see the colours of my clothes.  As I’d never learned braille before, I did not take to braille easily.  I just about learned to read braille but I quickly decided that it was not going to be my main medium for communication. Expert braillists can read two lines at once with both hands, but they’re usually people who’ve started at an early age or really want to persevere.  I turned to audio technology but my brain resisted.  I’ve got a photographic memory, so I think visually.  I found that my good memory invariably began failing me, and this increased my frustration.  Even now I have to translate audio messages into a visual pattern in my head.  For this reason I left it about 5 years before attempting to listen to an audiobook.  The feat was laborious, and I found it hard to concentrate.  If this was how I was meant to “read”, I hated it.  But with no computer and no other means of reading I didn’t have an alternative.   Once I’d accepted this, I reluctantly started to borrow recordings from the RNIB library.  Now I can’t get enough.  With MP3 downloads and iPads, the audiobook scene is improving.

Slowly I became better disposed towards gadgets and technology, and now I’m gadget-mad.  The beeps that used to plague me 20 years ago are now my mates.  With increasingly advanced technology the practical problems of being visually impaired are less of an issue.   There are gadgets which enable you to safely make a cup of tea, label tins or files, measure quantities etc.  My talking microwave is the star of my kitchen, and my mobile phone with TALKS is my right hand man.  There are gadgets and aids for just about any indoor task.  Computer screen-readers such as JAWS and Guide have certainly transformed my quality of life.  My three year-old laptop is my launch pad.  The only barrier to the world is the growing number of websites with poor accessibility, but that’s  another story.. The down side of specialist technology/gadgets of course is the cost.  Being visually impaired is not cheap, and this is accentuated by the fact that in the UK the vast majority of blind people are without work.

So much for gadgets and audio technology.  What about the social side of life?  Before I qualified with my guide dog Trudy I struggled daily with the general public.  Unfortunately, most people steer away from  someone tapping a long cane on the pavement.  I am not that good at asking for help, so more often than not I encountered difficulties when I was out.  I used to bump into lamp  posts and apologise to them or ask if they’d please let me by.  When you’re blind and stressed lamp posts and humans are not distinguishable.  Making a fool of yourself in public is one reason why most visually impaired people refrain from going out.  I can laugh at myself now, but it took time.

I found that there were people who avoided me through fear, and others who raised their voices when they spoke to me. Sometimes people would think they were helping by grabbing my long cane and pulling it across the road with me trotting behind in alarm.  It seems funny now.  I’ve had so many disasters with public transport that it’s amazing I’m still in the UK.  I ended up at Heathrow Airport once instead of Victoria station.  These crises often bring out the kind and helpful side of people.  Nevertheless I began to see my long cane as a huge barrier when it came to socialising and being accepted by people.  Isolation is a common side effect of blindness.  I’ve lost count of the number of times I’m still talking to someone after they’ve left the room or wandered away.  Another favourite is to answer people when they’re not addressing you.  Not being able to read body language puts visually impaired people at a serious disadvantage in social situations.

I became quite reluctant to go out on my own, and often left my long cane at home.  This meant that people invariably thought I was drunk because I was stumbling along bumping into things.  There were times when I’d  get a taxi home after being out for just ten minutes.  I quickly became lonely and found myself retreating into a very dismal space.  Often I would lament the loss of my books and my academic career, and wonder why something which I loved so much had been snatched away from me.  These were the bleakest moments.

Training with a guide dog was something I had considered within months of losing my sight.  However, I needed to regain my confidence before I could manage a dog.  I knew that a guide dog was right for me, and GDBA have been a tremendous support ever since I first contacted them in 1993.  This support included hours and hours of mobility training and traffic skills training over a long period.

15 years later, in 2008, I experienced the happiest day of my life when I was matched with Trudy.  Trudy was worth waiting for.   At the time I was living  in residential care, and the outside world was a terrifying tangle of sounds and unfriendly people, and obstacles which rammed into your face and sent you sprawling on the ground.  But Trudy has shown me another side to the world.  Guide dogs attract people, so I suddenly found myself surrounded by well-wishers and dog-lovers.   The obstacles melted away into the background as Trudy’s job is to steer me round them.  I became eager to explore what I’d been missing for so long.  My blindness became an acquaintance rather than an enemy.

Three years later I am living in my own flat and giving talks to schoolchildren and adult groups.  I am about to begin lecturing at a local University.  Sometimes I look back over the rocky road and wonder how I got here.  It’s been worth the blood and tears just to feel this freedom.  But a guide dog isn’t the answer for everyone.  There are 4,500 guide dog owners in the UK.  But 180,000 blind and partially sighted people never leave home alone.  Not long ago, I was one of them.  .