This week has been amazing, for many reasons... What has amazed me is every one's kindness to my coming out on the blog... About the foolishness of it all, how hard life can be...
I'm a little lost as to what to say this week, I want to stay authentic, but don't want this to turn into "woe is me", I want to share with honesty, but not leave the people I love feeling, well, alienated. This is a tough balance for everyone who loves me and frankly, me who loves them. How do you support, how do you talk about life when it is so obvious life is tricky. And truthfully, why is it so easy for some and so difficult for others? What is it that they do that others can't or don't?
I have been beautifully surprised by the outpouring of folks who have chronic illness' and felt like my words this week resonated with them. We all have different struggles, but put people with chronic conditions together and they say similar things... And we relate to similar issues, we understand the lack of balance. And my hope, wish, goal; is to help put my voice with their's and share this commonality of our struggles and share what it is that keeps some peeps doing so well staying positive in a world that can often make people negative...
This is the balance that every person who has faced a serious disease struggles with... For all the great Hallmark cards, the one for chronic disease, well it lacks... Because what do you say? And what do you say when the people you care about look bloated, tired? Or when they look great, happy and joyful, but deep down you know it won't last?
It is not easy being a friend to one of us... I do understand, but that doesn't mean it doesn't hurt when you feel let down by the people you love. Having a chronic disease is a lot like your dearest friend having the worst boyfriend. How do you hold your tongue, when they cry on your couch yet again... Because he is a jerk... And then what do you do when he sends her roses? Or better still when he has really hurt her and then she goes back?
Chronic conditions are a lot like the bad boyfriend, how do you support when you don't want to? Or don't have the time or energy? You want your girl with the good Prince. Don't we all? And it is so easy to get mad at the doctors because they prescribed the millionth crazy treatment and your girl still looks like hell... Or you see her out and about Friday and she cancels at the last minute again on Saturday. How can she be fine one minute and fall apart the next? Why can't she rally for you for once? You can't wrap your mind about it and you can't help but take it personally. What have I done? Why is she always avoiding me? Again running back to that stupid boyfriend... How can you have a friendship built like that???
Well I go back to my handicap parking from last week.... It is hard to imagine how big a mess I am when you see me parking at Target, with my make-up on, Mini-me in tow talking a mile a minute, me laughing... To imagine the 2 hours it took me to prep for this twenty minute field trip. Often it is just me working on my Oscar, man I can sing, maybe not like Anne Hathaway, but my daily acting is way better than hers. I do love you Anne, and I want you to win that Gold bald man, but my struggles are epic.
Getting to see my girl play b-ball yesterday was the best of the week. My pain has been excruciating all week, I missed an important dinner on Friday, my body was wracked with pain, I was slurring and it was stupid cold outside, Jeff called me a disaster.
But Sunday afternoon, I laughed until I cried, the first grade girls basketball was priceless. It was very cold in the gym, I had my coat on and a blanket. But, I MADE IT!
On the really bad days I try to live by the creed
bring the outside in
... Be it whatever, it makes me miss the rest of the world a little less... My flower girl (FG) she helps me, for the last two years she shows up on my door with five TREE branches from the wholesale florist, she brings the outside in... I tend to these branches and wait in admiration and thanksgiving when they bloom for me... I have her with me, when I wake, sleep, upstairs and downstairs... FG understands that...
This year's gift from my Flower Girl (FG)
I need the outside too, even when I can't join in! She also brings me communion, she brings my faith to my doorstep, when its too cold or my body can't attend. My spirit does and she shares that with me too... FG also shows up and says, "it is time for tea", she doesn't care that I'm in pjs, she just wants her "old friend" to chat it up. We talk about everything and then she says, "tell me how are you really" and then it changes, she listens, doesn't offer advice, doesn't say anything about this, and she is a nurse! She listens... And I find that she does offer me information in a quiet way...
You see FG's mom battled chronic disease for years, and I was lucky enough to call her Mom, my friend too... Maybe that's why she makes it easy... She accepts me for where I am today, this moment, not the girl I was five years ago, and not the healthy woman I will be in the future...
She loves me for where I am today...
Isn't that what we are all called to do... Be present, be here, really here right now... Not to worry about the boyfriend you want your best friend to have, but to love her in the messy life she has today...
So that is a little part of my world and a bit of advice to my compatriots. Bring the outside in, be present, love the life you have today, and be grateful for the messy...
Today, I an grateful for you and my branches...
Namaste...