Disneyland is one of those rare places that I found comfortable to cast off adulthood and joyously (albeit temporarily) embrace my inner child. Apart from adrenaline rushing rides that made my knuckles go white, wishing I hadn't indulged in the candyfloss, by complete contrast I remember another ride "It's a small, small world" where hundreds of robotic puppets in national costumes, portrayed different countries from around the world. All these years later, at the age of 52, living with Parkinson's for the past eight years, "it's a small small world" conjures up a very different image in my mind. Parkinson's affects every aspect of one's life; nothing remains the same, and one's world literally slows down and becomes smaller. It is indeed a small, small world!
I try not to dwell on things I can no longer do, embrace what is good and accept my situation, but there are times when it feels as if salt is being deliberately rubbed in an open wound. A recent scenario smacked me squarely in the face, as a painful reminder of my limitations which I believe would prompt anyone in this situation to re-evaluate.
A few weeks ago, a member of my family was taken into hospital for an operation. Although thankfully not life threatening surgery, I desperately wanted to jump in the car there and then, and drive straight to the hospital. Frustratingly in my physical condition this was unrealistic. I couldn't go anywhere, and a few words of comfort over the phone was all I could offer.
When struck down with an on-going long term illness, it's very difficult to come to terms with not being able to offer physical help to loved ones. Like an unyielding one way street, family and friends kindly often step in to lend me a hand, however when they require a little help in return, I'm unable to reciprocate in a physical way. Feeling helpless is not pleasant, and quite frankly is a situation that stinks! I'm far from alone, and maybe this scenario sounds all too familiar and you find yourself in similar shoes. Sadly there is little I can do to change this fact, and so I'm relegated to giving those I love, emotional support only.
There are people who are great at hands-on help, offering physical assistance and can be counted on, through rain or shine to immediately step up to the mark. Then there are others whose strengths lie in a different area and are able to offer emotional support in times of need, the value of which cannot be cast aside or under-estimated.
Just because a person is disabled or chronically ill, doesn't mean they want to be cosseted, wrapped up in cotton wool and shielded from the harsh realities of life that relentlessly go on around them. Being kept in the dark is alienating and hurtful implying one doesn't have the capacity to hear about other people's troubles, when this couldn't be further from the truth. Although a person may not be well, being kept in the loop is important.
So if you are guilty of keeping your bad news from someone who is chronically ill, think again, and perhaps try telling them. You might be pleasantly surprised by their response, for you'll be treating them as any other, allowing them an opportunity to feel useful, by offering support and a listening ear!