This is was what I was taught from a very early age about gifts and celebrations, but it seems like it isn’t even close to reality anymore. Sadly.
Ask anyone who has been chronically ill what holidays and festivals are like and you will hear some of the most heartbreaking and emotional responses imaginable. It’s even hard to put into words most times. However, once you are chronically ill your ability to celebrate holidays and milestones are changed forever.
Years ago I was a mad Christmas decorator and shopper. I would live for the lights, the food, the tinsel and the gift giving. I probably drove people mad around me with my Christmas exuberance but all that changed. I admit I was never a religious person so the holidays were more a time for decorating, relaxing, indulging and socializing for me and I reveled in it! Today is completely different.
Even birthdays are so difficult to plan and participate in. Even for those we love dearly. It is so hard not to be able to do the things we want to for the ones we care about and it is through no fault of our own.
Recently I watched a Christmas movie about a poor family who couldn’t afford presents, the movie centered around the struggle and the pain of no money and poverty, and then at the end of the film the reminder was that money and extravagant gestures are not what it’s all about and that it is the thought that really counts.
It strikes me as odd that there are no Christmas movies about the struggles with year long illnesses and disability with a reassuring message to those sufferers that it’s simply the thought that counts. No such holiday movie exists today and I doubt there is one planned in the near future either!
The reality is that we shouldn’t have to shower gifts on people. Sometimes the simple act of listening and accepting is the greatest gift of all. We can’t always be present at celebrations but our thoughts and feelings should still count, and even mean so much more.
But does it?
I experienced a tonne of guilt and shame for most of my battle with illness and it was always magnified whenever a birthday, wedding, holiday or celebration came up. I began to get comments and passive aggressive taunts in my direction which would succeed in hurting me deeply. They ranged from questioning how sick I really was to suggesting that if I really cared I would be available and present regardless of how much pain or difficulty I was in, as though my absence was a rouse and contrived for my own sympathy or agenda.
It’s heartbreaking enough that we can’t be there for the fun and enjoyment of each celebration without being demonized for not being there. A double blow.
I still shake my head as I reflect on these comments and accusations. I have learned to cope with them so much better now that I see the real cruelty behind them.
Many of my fellow fighters know exactly the type of pain and cruelty this is and have each suffered their own variation on this theme. From parents to siblings, friends to colleagues and everything in between. We are demeaned and criticizing for crimes we did not do. Parents who are chronically ill experience their own types of emotional hell whenever their children are angry and disappointed in them for not doing those things that they believe their parents should be able to do for them. I can only imagine the pain they must carry.
It’s so incredibly unfair and heartbreaking.
The irony is that growing up I was told to appreciate and honour those people who didn’t have the things that I did and carried burdens that I don’t have. People who gather around cancer wards or children’s wards to bring care and respect to complete strangers will shun the friends and loved ones that are battling just as hard with their own illnesses and challenges.
It just doesn’t make sense.
As I said before, I used to be sucked into this pain filled abyss but a few years ago I started to lift the bonnet on this topic and investigate what is going on underneath these expectations and accusations. It was only when I did this that I gained a self confidence and respect that I had struggled to find for so long. It was only then that I realized my own worth and what it should truly be based on.
By lifting the lid on those people who like to cast doubt and cruelty towards those of us who struggle to do the most simplest of things (let alone celebrate and party with people) I found where the real spirit of love and appreciation is lacking, and it wasn’t in me!
How you treat people through the year is more important than what you do on one day of that year. How you speak to them or interact with them has more value then the most expensive gifts of all.
The greatest gifts we give people is what we carry inside us and as cliched and corny as that is it is only those of us who have been through hell and suffered the most that truly understand its meaning.
We can’t always be present at parties, we won’t be able to shower those we love with gifts and we may not be able to drop everything and run to those we love when they need it and this is such a difficult thing to accept about this life but for those that appreciate love, kindness, empathy and loyalty than they will find no greater source than in those people like me.
There is an old saying that people will forget what you did or what you said but they will always remember how you made them feel.
I truly believe that the best gift you can give anyone in this lifetime is the gift of your love. Love doesn’t require grand gestures or extravagant price tags but it’s the things we say and the feelings we have for each other. Every. Day. Of. The. Year.