I am an active member on the message boards at the But You Don't Look Sick community, and a few weeks ago, we were invited to share our stories about the people in our lives who are not professionals, but take care of us just the same - our "spoon helpers" - the people "who are there at 03:00 to hold our hair out of the way when we're being sick? Or who instinctively know when we need a glass of water and more painkillers? Those who don't have to be told what is going to leave us without spoons and those who go out of the way to make life "comfortable".
The members of the forum were then invited to vote on their favourite "spoon helper", and I am really touched that my support team received the most votes. If you have read this blog at all, then you know how grateful I am to so many people who make my not-so-easy life very manageable. But this was an opportunity to share how much I am helped and supported with the community which helps and supports me in so many other ways from afar. This is what I wrote:
There are so many people on my 'team' that I don't even know where to start. Who do I talk about?
My Dad who sat for hours with me to fill out my insurance forms, takes care of my bank balance, makes sure my bills are all paid, and packed up my car so I could go camping? My Mom who randomly comes over to clean my kitchen, comes to every doctors appointment, coordinates my protocols, and drives my son an extra 30 minutes in the morning so he can go to camp? My friend D, who takes me for lunch in a different, carefully selected place very week, and has gone so far as to push me in a wheelchair around Ikea? My therapist, who keeps me from driving myself crazy? My two best friends who plan "commando-style" dinners at my house, coming and going like a swat team so I don't have to lift a single finger? And then, there's my boy - 8 years old - who set the dishwasher, transfers the clothes from the washer to the dryer and takes out the recycling.
On the more occasional side, my sister is so aware of my situation all the time, that she suggests concessions and easier ways of doing things as a family, and never gets offended when I can't attend. The friends with whom I went camping made it possible for me to go by doing all the driving, shlepping, building and striking of tents, cooking and washing. My grandmother, 92 years old, sends food and passes her jigsaw puzzles on to me. My aunt, across the continent, scours her books looking for appropriate and encouraging quotes to respond to my blog posts.
I know how fortunate I am to have all these people by my side, ready to pick up the pieces for me. And they're not the only ones. I'm just grateful they're all there, willing to support me.
On the more occasional side, my sister is so aware of my situation all the time, that she suggests concessions and easier ways of doing things as a family, and never gets offended when I can't attend. The friends with whom I went camping made it possible for me to go by doing all the driving, shlepping, building and striking of tents, cooking and washing. My grandmother, 92 years old, sends food and passes her jigsaw puzzles on to me. My aunt, across the continent, scours her books looking for appropriate and encouraging quotes to respond to my blog posts.
I know how fortunate I am to have all these people by my side, ready to pick up the pieces for me. And they're not the only ones. I'm just grateful they're all there, willing to support me.
Whether or not I mentioned you specifically, you know I love and appreciate all you do for me. Just about everyone who has been in touch with me regarding my illness has mentioned to me at some point how great my outlook is, and many have wondered how I've managed to stay so positive. This is how. Because there are so many people who have my back, and my front, and everything in between. Ok, so there's a lot more psychological work that's helped me too, and that has contributed to building these amazing relationships, but still, and this is the point:
If I had to worry about balancing my chequebook or making notes at doctor's appointments, or finding ways to get out of the house, or whether I'd ever have a clean kitchen again, or what to do with my child when I am totally crashed out, I think I would be so totally and completely overwhelmed that I would have no peace in my life.
The little things you do matter. They really do. You make my life not only bearable, but happy. Just knowing that people still think about me makes me feel special and important rather than lonely and useless. No matter how small or how simple, every act that acknowledges my presence, never mind the difficulty of my situation buoys my spirits and lightens my load. The fact that you are attuned to me, and can sense what I need when I need it is no small thing, and I love you for it. I wish there were a better way for me to express my gratitude, but this is what I have right now.
So thank-you to anyone and everyone who has supported me in any way, big or small, to the fine people at But You Don't Look Sick for creating such a wonderfully supportive space, and to the amazing "The Major"who sets up these great topics for us to discuss.
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