My Hopes and Fears for Setting Goals While Living With Chronic Illness
I just set three big goals. Some of my loved ones might say, “Good job!” Others might caution me, “Slow down.” Yet here I am, with hope and fear in my heart, as I dare to speak my intentions.
You might be wondering why I am nervous… after all, goals are supposed to be helpful, right? For some this might be true, but for others (like me) it can be a little more complicated.
Let me begin with a bit of context.
I live with several chronic illnesses including adrenal insufficiency, migraines and pituitary dysfunction (among other issues) after a traumatic brain injury that changed my life in 2011. I am a single parent to an amazing kiddo, and she is my absolute priority. Every day is a marathon, but we do it… quite well actually! See, I’ve had to climb back from crashes or flares so many times since the TBI seven years ago that you would think I’d be an old hat at this. Honestly, I thought I was… until last summer… and this has been one heck of a crash.
Sudden acute flank pain hit me so hard at the beginning of August 2017 that they thought I was passing a kidney stone. This pain arrived with a bang, and was unrelenting. Fast forward to October, and the pain was still there. It wasn’t until I received a massive infusion of ultra high dose prednisone that it finally went away… only to come back in December… with another round of prednisone… and a bunch of mystified doctors. We are still trying to diagnose the problem.
In the midst of the diagnostic process (which continues to this day), I have been slowly improving. An amazing medical team has been working to help me walk out of this, even in the midst of the unknown, focusing on what we know we can treat and continuing to gently pursue the cause of the acute pain. It’s been a very intentional walk out of a very difficult space. No one can fully appreciate what it means to have this kind of a flare, until you experience it yourself.
At this moment, I am pain-free! I don’t know how long it will last, nor can I be certain that I won’t “overdo it” at some point… but this is where I have fundamentally changed my outlook. I am no longer afraid of flares/crashes, because I am finally learning to trust myself!
I cannot predict the future, and I can’t live in fear of what might happen. Living with chronic illness means taking each moment as it comes, while engaging in deep listening to my body and trusting that I will take any necessary actions to practice good self-care. Oh my, this has been years in the making!
So that brings me back to the goals that I discussed at the beginning. They are scary and bold and wonderful… and again… I feel both hope and fear as I state them out loud.
1. Get back on my horse Harvey. I haven’t ridden him since July. Recently, I got on my trainer’s horse in preparation for Harvey… but I have a great deal of ground work to do in order to safely get back on my big boy.
2. Visit my dad. He has created a beautiful space where hummingbirds come right up to his balcony. My daughter and I hope to venture to his sunny home very soon… I even made plans to do it!
3. Big goal: Take my daughter back to Hawaii. We have booked and cancelled this trip many times over the last few years. But yesterday, I booked the tickets, and dared to set forth the intention. All of my doctors know this is my goal.
While I trust myself to handle whatever comes my way, I was aware as I pushed the “purchase tickets” button that I am scared of my body letting me down, or that I might over-exert myself before I am ready. But then I came up with a plan. I bought insurance that will allow me to get a full refund if I cancel – this allows me to listen to my body up until the day of the trip. And if I am not quite ready, then I will simply push it out a few months.
In my former life, before the brain injury, I used goals to force myself into action. Frankly, I abused myself with goals (including developing an eating disorder). No more. Goals are no longer a tool for restriction and measurement; rather, they are now a means by which I express my deepest heartfelt desires… and then I let go of the outcome. This is the paradox that must be held gently and lovingly, even though it is incredibly difficult!
I am constantly reminded by my friends to “lift up my legs and float.” So be it!
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Getty Image by Cn0ra
There are terms to describe my creativity…words like “Synesthesia, Acquired Savantism and Accidental Genius” are all thrown about among experts talking about how I suddenly discovered the ability to paint in 2011 after a Traumatic Brain Injury. But this isn’t just a story of painting; it is my experience of transformation. I was an award-winning entrepreneur and nationally recognized business strategist in home health and hospice before the “mild” traumatic brain injury that changed my life. I was married at the time, at the pinnacle of my career, with a 2 year old daughter. In between business trips, I went to Costco to get a bag of cat food. While loading groceries, the hatch/tailgate of my SUV suddenly dropped on my head. Although I never lost consciousness, my life changed in an instant. Immediately, my career ended and I began a walk into the unknown. Shortly thereafter, I discovered that I could paint. I was not an artist before the accident; but suddenly, painting was as easy as breathing. With a new language – that of color – I transformed into an insatiable artist overnight. This is what it means to be an Acquired Savant. I am self-taught, and I have never taken an art class. I simply sat on the floor of the art store and allowed my hands to explore what felt right. That was the Summer of 2011. I am very fortunate that I do not have many of the tradeoffs that go with Acquired Savantism; Dr. Treffert calls this scenario “Accidental Genius.” My journey through art heals me, even as I continue to discover new health conditions as a result of the injury. I have Dysautonomia (POTS), Pituitary Dysfunction, Adrenal Insufficiency, Migraines, and other issues that impact day to day living. Still, I feel called to help others. Today, I am the same person that I always was; I have simply deepened in ways I never could have imagined. With my CEO days in the rear view mirror, I now study Theology – I’m getting my Masters of Divinity. I spend time with people that live outside – they are my teachers. I have a little menagerie of animals including goats, bulldog, cats, fish and horse – my horse is my physical therapist. I paint constantly in order to express the inexpressible. And…I am a single parent to a beautiful daughter – she is my greatest gift.
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