Something I’ve been struggling with is how to re-create the life I want around the reality of the life I can’t control. It reminds me of a dear friend, who years ago asked me a similar question in a vision workshop. She asked, “how can I create a vision when I can’t change the my reality” I knew she was asking specifically about her daughter who she had lost to cancer. At the time, I did my best to answer the question and I’m doing the best for myself today.
What I said then and what I’m thinking today, is that you have to focus on what you can control. I have to focus on the things that I can impact or influence. When I do that, my vision will find it’s place around the reality. Ultimately, the thing you focus on is the thing that happens. What am I putting my energy towards? Am I focusing on feeling sorry for myself and all the icky things that are happening OR am I focused on creating the life I want, my BigLife?
Frankly, it depends on the day. This week, to be honest, I am focusing a bit more on the poor me and less on the new me. Pulling myself out of this is one of the hardest things I’ve ever done. EVER. I think it’s because it’s always present. I always feel it, physically.
I’ve been writing this blog for years, seeking the lessons in life and sharing my experience and perspective. I always look for the lesson of what I can learn and how I can share it. But let me tell you, I DO NOT WANT to be learning and sharing this lesson.
I am rational enough to know I’m crawling through the change / loss curve and that this will pass. I am doing the right things: writing each day, talking to my therapist, playing with the doodles, spending time with friends and family, doing things I love, etc. And still I find myself thinking poor me and why me. Sometimes it’s not exactly thoughts, it’s just anger, sadness and tears. (yes I’m being treated for depression, but this is a bit different)
Somehow I need to move from that why me to why not me and ultimately it’s me. Acceptance is damn hard!
Example, my new treatment plan will be: me, attached to an IV, in my home, for 3 – 5 hours EVERY 14 days. Think about that, every other week I am giving the better part of a day to MOG. Someone will come to my home and put IVIG into my body in the HOPES that it will prevent future attacks. And the kicker, we’re not entirely sure it will work. Everything with MOG is experimental. Will it fix my constant eye pain, maybe? Will it prevent future attacks, maybe? Lots of maybes!
This has an impact on my life. I’m am an on the move, vacations for 2-3 weeks at a time, travel anytime I can type of person. Now, it’s every 14 days attached to an IV. I am pissed off about this. I have to store each month’s supply in my refrigerator, so every time I open my fridge I see it (I’ve been flipping off, nope not at acceptance yet). I have an IV pole hiding in my office closet, I’m tempted to name it Asshole. There are times I am irrationally angry, not at someone, just angry.
I am actively trying to get to, acceptance. This is my reality and it’s better than going blind, losing mobility or the other nightmare-ish scenarios associated with MOG. And I will eventually get there. I have moments of it.
So what is my lesson for today. Wherever you are in creating and living your vision, it’s okay. We’re all on a journey. Some days are better and easier than others, lean into those days, relish in that positive energy and when all else fails, focus the anything that brings you joy because that inevitably brings you closer to living your vision. If you can’t do it alone, ask for help. I know I am.
I love everything your friends and family have shared, they are inspiring and have wonderful thoughtful advice.
I wish I could be as eloquent.
But I am also angry at anything that causes you pain and interferes with your beautiful life!
Fight, and fight some more, and in between laugh, love, and live!!
Love you Rosa!
Being able to write so eloquently is BigShare… and your perspective is relevant to many folks in many different situations. Merci Beaucoup for doing the BigShare, and know you name is lifted up to the unicorns, universe, and all the unis. XOXOXOXOXO
Sometimes I find that there are no answers to the why in this life. I believe that struggles give us our souls purpose. None of us choose the purpose or path. There is so much courage in your vulnerability and honesty. You inspire people with your transparency and truth. You have every right to be angry, to wallow a bit. But I know you will dust yourself off and keep fighting and dealing with whatever curve balls life throws. I saw a quote that stuck with me today but i think it applies. Perhaps the detours in life turn out to be the path. Sending you love.
Life detours are often the path we didn’t know we needed to take, thank you for that reminder Kerri!
Know there are people who admire and love you and are sending you positive energy from afar.
When I was Mt. Vomitous (my version of Mt Vesuvius) from chemo, I tried to remember that there are children who will never walk or run or see or sing their whole lives. I was WAY more fortunate than that.
I tried to regard cancer as a distasteful distraction. That the effects of poisoning myself for a year may be long-lasting, but I’m way more tenacious than a distraction. I was MORE than the current situation. I had haughty disregard for its pitiful attempts to affect my attitude; it was NOT driving my satisfaction and happy train.
People want to love you; let them. Naps are delicious; take them. Use the tools in your arsenal; shitty IV’s, the asshole in the closet, holding hands with hot Andy, delightful food and yummy beverages.
It’s absolutely in-bounds to feel the respect for terrible power, (like swimming or sailing on the ocean) but let the attitude of ultimate triumph over this distraction be the stronger power. Lots of people get seasick, but they still feel the breeze, the sunshine and sail around anyway. Your sailboat may land in a different place that you anticipated, but you can take your triumphant attitude with you.
Always with the right perspective and what I need to hear. Love you Anne!
Your blogs and your doodles inspire me. I just purchased a Labradoodle. Three days of tears over losing my Rascal and it’s time to MoveOn. It’s so much easier for me to MoveOn than you. I pray for you every day and I read your blog feeling your anger and pain. All I can say is I love you. Can’t wait to meet Bernie doodle. Can’t wait for you to meet Lacey Doodle.
Love you mom!