Sunday, November 1, 2015

Wheeling and Healing...

Exhilarating! For a couple of hours, I was a child again forgetting that it's been 20 years since I rode a bike, due to cancer, Lupus, and chronic illness. I found that sweet spot that makes you never want to leave. I was flying!

After being 'forbidden' by my husband and children to get a motorcycle or scooter in my new hometown of Murrells Inlet, South Carolina, I stumbled upon a store that rents and sells electric bikes. Pedego of Myrtle Beach. The shop's wonderfully knowledgeable, friendly and patient owner, Aaron, guided me through the process of trial and error as I visited the store a few times and, finally, a 12-mile ride yesterday through Market Commons, Myrtle Beach State Park, and nature trails I didn't know existed.

I was pedaling and I was exercising and I was using the throttle when my legs got tired - zooming up to 20 miles per hour with the wind rushing through my hair and the glee rising in my heart. We six newbies, on rented bikes, became fast friends as we caught up time and again with each other and our two guides. Up and down, across and through we went calling "Hellos" and "Good mornings" to passerby and residents while ringing our little bells to let people know we were coming.

It was joyful. It was exactly what I was looking for - a reconnect to my soul and spirit from before traumatic illness; a pathway to yet another 'new normal' as I regain opportunity to physically do more in a warmer climate and on flatter topography. Those of us with chronic ailments mourn every time we lose an ability or activity we loved. Riding the Pedego electric bike yesterday may have been simply a joy-ride for some but, for me, it was a very long-awaited triumph. And the fact that it will help contain or correct my various diseases and rely less on medication is huge. HUGE!

I can't say enough about the bike and the shop that have literally handed me back a piece of my life that I thought was lost forever. In fact, according to owner, Aaron, most Pedego enthusiasts are those 55 or older who have some sort of medical issue including but not limited to knee, back or joint problems, excess weight, pulmonary restrictions, and, even, depression. This is not just a bike, it's a lifestyle as Pedego owners gather every week in Aaron's shop to talk, share, learn, and ride.

As I laughed and pumped my fist and shouted out "woo hoo" on my ride, I was so pleased to find the bike able and stable on uneven, rocky, sandy or pocked ground. I soared through the ride and, while I am a bit tired today, my joints hurt less and I slept more soundly. I can't wait until next time!

Thursday, October 15, 2015

Chapter IV: Settlement of my Soul

If I try to separate my life into Chapters, I get four:

  1. Birth to Young adult
  2. Work, Marriage and Children
  3. Cancer, Lupus and Chronic Illness
  4. Settlement of my Soul
Astonished as I am that I still live and reach goals I never thought possible, it is this Chapter, number four, that is the most intriguing. It's the latter third of my life. All the things and people and places I grasped at and for the past 55 years has led me to  reconciliation of my soul's desire.

It's unusual yet so very, very gratifying. What did I yearn for as a child besides a pony? What actions or activities made my heart sing? How many life lessons have I learned? Where am I going from here?

Moving from my native New York to a southern state where the air is warmer, cleaner and the ocean is nearby nourishes my soul. Having access to nature and wildlife of all kinds - including alligators - continually surprises me. Squirrels' tails are less bushy here since they don't need the warmth from the extra hair so now they really look like rats with tails. Poinsettia plants grow naturally here, a discovery I made by accident as a green plant slowly turned red last winter and I had an "aha" moment. The bark of the many different types of palm trees reminds me of the hardness or softness of people. The storms are just part of the day. 

I have time to explore, gaze, or reason. I get to think uninterrupted. I have found my "final resting place,"  a phrase that disturbs some of my friends and family. After all the hub-bub of a very rich yet difficult life, I get to ask myself: "What did I enjoy doing most when I had the time to do it?" The answers are coming to me slowly but surely and I will do everything in my power to honor my soul's desire. 

While it sounds trite, it is my life and I am blessed to be able to live it regardless of the physical encumbrances I bear and the emotional scars from the tragedies I've endured. You've been reading my "book" for awhile now. Everything stems from my soul and each day gives me another opportunity to give it its due.  

Sunday, July 26, 2015

Moving on...

It's been quite awhile since I've written a blog post because as one of my favorite quotes says:

“Sometimes you have to kind of die inside in order to rise from your own ashes and believe in yourself and love yourself to become a new person.” 

Oh, how many times have I done this? At least five or six and counting...

These past couple of months have been a time of deep reflection. Regardless of the chronic illness and grief I endure every day, I'm pondering just 'regular' things like the empty nest, buying a home in my beloved Murrells Inlet, South Carolina and adapting to a 'new normal' with health challenges all over again.

I've been referring to the new house as "my final resting place," for it is the last house or residence I will ever purchase and it is the place where I know I will live out the rest of my days. It's a dream come true and one I thought I might never see. Certainly my doctors in the late 1990s all the way up to today didn't think I would still be another huge change in my life even though I'm sick and fraught with loss.

Yes, you can live with chronic illness or disabilities and grief for people who have died before you or all that you have lost due to continual adaptation. Those of us who do must always remain vigilant but we can not let the cancers, the autoimmune disorders, the tragedies and the various odd ailments that strike us out of the blue as a result of chemotherapy or medications or, simply, stress ever, ever derail us. I still reach out and talk to those who are dealing with often fatal disease or a sudden death in the family but it is my choice and it is private. The lessons I learned can't really be taught. Or can they? 

All those wonderful sayings that scroll by us on Facebook or other social media tell us that life is to be lived in moments. Three near death experiences 18 years ago, the loss of many loved ones including my brother to suicide shouldn't have had to teach that to me. But if you still need to learn this lesson, my book DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness may help. A revised version should be published in 2016.

I'm no yogi and I'm no psychic. I'm just a regular person dealing with irregular bumps in the road. And I know I'm not alone.

Monday, May 11, 2015

Throwaway days...

No, I don't mean trash, although getting rid of one item a day to declutter our houses is probably a good idea. I'm talking about those days where those of us with chronic illness have to stay in bed or on the couch or in the recliner and miss out - a throwaway day.

The throwaway day is gone forever and we have many of them; typically after exerting ourselves the day or two before and that includes any events where we might have had fun! It's a constant balancing act.

On my throwaway days, I am usually in bed, in pain, exhausted, and with various symptoms from either my Lupus, Sjrogens, gastroparesis, fibromyalgia, or all of them. Pick a poison for there is no rationale. Could I have a virus? Sure. Could I be getting stomach bug? I guess so, but, most likely, it's just one of those days that go down the rabbit hole for no apparent reason except my chronic ailments.

I hate them.

Yeah. I'll say it again. I HATE THEM. But that doesn't make me stop wishing for a better day tomorrow and getting myself up and out again. I'm always optimistic yet cautionary as I move about my days. Monitoring myself is difficult when there are so many things going on 'behind the scenes.' But I do it anyway for I have life to live, people to see, places to go, and so many things I want to do.

I still haven't scheduled the camera test - the one where I fast for nearly 24 hours and then swallow a big pill with a little camera in it to scope out my small intestines. I'm scared. There are a certain percentage of people whose cameras get stuck and have to be removed surgically. With everything that's happened to me, I fear I will be THAT one.

But I will do it. I always do and I'll hope the results give me better answers to manage day-to-day.
Please don't throw away your days if you don't have to. Bank them for me and others with chronic illness. We will gladly take them off your hands.