Sunday, July 12, 2015

Reflections on Life, turning 39 and the Journey

Summer is in full swing and there is so much to do, so much to write about and reflect upon. We kicked off swim team, enjoyed a family vacation out west, and are dealing with some pretty crushing news and facts of life.  I'll save summer memories and family vacation for another blog, but before I can write about anything, I have to process (by writing about) thoughts about life.  

Last month, I turned 39, and I've developed a little tradition of treating myself to a birthday run and/or writing to reflect on my life (2014, 2013, 2012, 2011, 2010). So on June 16 as I turned 39, I set out to run 9 miles in the Chancellorsville battlefield. As usual, I reflected on life and let the music lead my mind.  
The first song was "Keep your Head Up," and I couldn't help think about BJ.  I enjoyed the sights, alone time, and the feeling of gratitude for health, love and family.  But I couldn't quit thinking about what life will have in store for BJ and me.  To make a long story short, he has been experiencing a tremor in his right arm, and our local neurologist suspects it is early onset Parkinson's Disease.   (He gave me permission to talk/blog about this)

As I was running, I enjoyed the music and about mile 6, the music stopped. I tried to continue running, but I just can't stand hearing myself out of breath as I run, so I walked.  Yet, I still enjoyed myself as I heard different sounds -- the rustle of the trees, the flow of the creek, and my slow, steady breath.  I thought, maybe life is going to be like this -- the sounds might change, we might not continue running, but there are different sounds to enjoy.

From what we've learned you don't actually get a "Parkinson's Disease" diagnosis; you just rule out other things from brain and blood tests, and the doctors make predictions based on symptoms.  The night before my birthday, In went out with dear friends and they encouraged me to try to get the MRI and blood test results before we went on vacation.  I tried to talk to BJ about this, but soon I realized, he really doesn't want to know. 

The night of my birthday, we went out as a family to the same restaurant where BJ and I had our first date; we sat at the same booth. 


He wanted to enjoy our trip. So we headed west and had the experience of a lifetime; my parents and brother's family joined us and it was all lovely. BJ's tremor was quite noticeable, yet it didn't hinder a thing. Before we left, we admitted to each other that we both think it is indeed Parkinson's Disease.


I posted pictures to my social media of choice, instagram, and got a sweet text from my dear friend Whitney about our trip.  I had been meaning to connect with her; if it is on my heart, I have to share it with my friends. So one day at lunch in Hill City, South Dakota, I texted her some niceties about our vacation and about what is going on with BJ; she responded with care and concern as well as the astounding information that with her new job, she now focuses on Parkinson's Disease,  and had just come back from several days with the top experts. 

We finished our vacation, and the night before we left "mountain time" I enjoyed an amazing respite in Denver, Colorado with my dear friend Lisa. We drank wine by her outdoor fire, talked about kids, life, health. . .and enjoyed hot yoga together the next morning. She showered the girls with gifts and hugs as she picked me up and dropped me off at our Denver hotel. 

We returned from vacation to life, to swim team, and on July 2, after swim practice, I dropped the girls off with "MumMum" and met BJ at the neurologist's office. We received the news we both were anticipating. The MRI and blood tests were all clear, and at this stage, it seems like Parkinson's Disease.  

I have presented the news to Anna Cate and Molly like this: your mom is forgetful; your dad has a tremor. He is going to be ok.  All the people I told about the appointment, I felt like I should go back and tell them what's going on, but we have the rest of our lives to let everyone else know.  It seems that some people hide this, but since he has a tremor and is married to me, the most open person possible, we aren't keeping it a secret. 

We are learning about the best treatments, and have second opinion appointments with specialists.   My mantra is we will be ok; we have health insurance, faith, and family.  My dear friend Whitney has helped us connect with an specialist at Georgetown; BJ's brother is connecting him with specialists in Richmond at VCU.  Health insurance covers second opinions and specialists.

We run with music; we walk with different sounds. 

So far, we are positive, and I've even noticed ways this diagnosis may elevate the quality of our life. Like most problems/ailments, exercise is the treatment of choice.  Since the follow-up appointment, BJ is walking Rosie every day, playing "disc golf" with his brother and friends, and making family even more of a priority.

Of course, we are scared and sad.  Well, he says he is not sad; I am. I feel like he has been through enough and I am sorry he has to deal with this.  I have hope, though.  Whitney assures me that there is a lot of research out there; my Dad told me that he is now an expert after scouring the internet  and that early onset PD progresses slowly. I know we have today, and isn't that all any of us are promised?

I'm so thankful I've never rested my faith on circumstances of this world. I neither credit nor blame God for earthly situations; my faith is deeper than that. My faith is in love, light and in the support of the Holy Spirit in every breath I take.  Sometimes, I don't hear that breath -- it gets drowned out by the music or the busyness of life, but lately I find myself leaning into the Spirit, not to ask for anything, but just for its healing presence.  Just like my marriage; in sickness and in health, I seek the companionship of presence. I focus on the breath; the dealings of the present. 

So my take on my birthday, on our summer and on life right now is shadowed by my concern for BJ and the looming diagnosis of Parkinson's Disease.  But as Michael J Foxx says, "if you spend time dreading the worst, you have to live it twice."  So, I'm trying to turn my eyes away from the shadow to the beauty of the present.

We are choosing to live this beauty -- the love of family and friends made more meaningful with the backdrop of faith. Of course our mind drifts to the "what ifs" but we are doing all we can by consulting the specialists, keeping active, and treasuring the journey together. I'm glad we didn't "know" on our vacation, but in hindsight, now that we "know" I'm not sure it would change things.  Nothing will take away our love of family, our faith and the gifts of the journey we take together.  I love you, BJ, and am grateful to take this journey with you.



Forget about your life situation and pay attention to your life. Your life situation exists in time. Your life is now. Your life situation is mind-stuff. Your life is real. -Eckkart Tolle










1 comment:

makegood said...

Sarah, I was thinking about you today because I was on a flight to San Francisco to Chicago, sitting next to a woman who was on her way to Germany to be with her sister who is dying of cancer. And I thought about how on planes you never know what people are carrying, and so often people are traveling for difficult reasons, so, like the Ian Maclaren quote.

For some reason this made me think of you and what a delight it was to find a sister in faith sitting on an airplane, opening to grace, and how reassuring it is to know that you (and people like you) are out there.

So I hope knowing that I am "out here" praying for you and BJ and your great kids through this season, for courage and joy, will be of some comfort, and my prayers will be added to all those of friends and family and you'll feel energy and embrace of all of these. And that your beautiful writing, your gift, will continue to provide clarity and relief.

Love, Rebecca