17 Thoughts On 17 Years (Part I)

Seagulls At Sunset Beach, NC

Hope is the thing with feathers -

That perches in the soul -

And sings the tune without words -

And never stops - at all -

--Emily Dickinson--

We Reached The End Of Sunset Beach One Afternoon. It Was Gorgeous!

On my anniversary, I mentioned that I had a longer post swirling in my head. I hope you'll take the time to journey with me and discover where I find myself 17 years into this illness. I've loosely modeled this post after Toni Bernhard's blog posts on the same subject. Her blog, Turning Straw into Gold, can be found on the Psychology Today website.

Here are 17 thoughts on 17 years of illness.

I will publish this in three parts, especially because I know so many of my friends have trouble concentrating to read for long periods. 

Sunset Beach Pier

1. The Body Really Can Heal.  That tune, that tune of hope of which Emily Dickinson speaks, stayed alive in me somehow for all of these years. I have endured periods of deep doubt that any healing of this kind was possible. It still AMAZES me every day that my body is doing what it does, is continuing to improve, and that it could even have the capacity to heal after so many years of catastrophic illness.

Bird Island at Sunset Beach 

2. 10 Years Ago Was The Worst and Most Traumatic Year of My Life.  In January of 2005, I had my gallbladder removed and ended up in an tailspin so terrifying that everyone, including Dr. ANS, was left helpless and lost. We lived in constant fear, on constant alert, sleepless night after sleepless night, my Dad and Mom alternating who slept in bed next to me each night. I couldn't eat. I could not even always get out of bed to use the bathroom. We had IVs in our home. The suffering was so unimaginable and unrelenting, I thought I could not survive. It's a lesson in contrast, hope, survival, and so much more when I think about where I am now.

Sunset Beach Sand

3.  Chronic Illness Is About Coping. When living with an illness for which there is no cure and few treatment options, surviving and LIVING becomes all about COPING. It's about finding the perfect heated slippers to keep cold feet comfortable, putting recliners everywhere in the house so I can be a part of the 'action' in any room, finding a table to insert under said recliners so I can eat reclining, setting up the car with lots of pillows and blankets so we can travel, getting a smartphone when I'm bedridden so I can still have contact with the outside world, having a dog to snuggle, finding activities to distract myself--the list goes on. The bottom line: it's about finding ANY and EVERY way imaginable to make life as comfortable, as full of QUALITY as and as low on suffering as possible. It's an expensive, creative, and time-consuming matter!

Bird Island

4. Five Years Ago Was 'The Year of the Pajama'.  This was definitely the second worst year of the illness (other than those terrifying years of trying to get diagnosed and find medical care). Most of you remember 2010 as the year I got a port inserted, did IV antibiotics in the home, spent the entire year in bed and homebound, and decided I'd at least really enjoy my pajamas. I share these memories to give myself the perspective on how dramatically life has changed and to never forget the suffering I have endured.

Nature Makes The Most Beautiful Designs!

5. My Improved Health Also Impacts Those I Love.  When I asked my mom how it feels to her to compare where we are now to where we used to be, she said the big change is not feeling like she is always hyper-vigilent and on edge--waiting for the intercom to wake her in the middle of the night, afraid to leave me alone in the house for any period of time, never going to work without worrying, and never being able to plan ahead. We ALL breathe easier when the one we love is healthier. The past 17 years have been a HERCULEAN effort on the part of my parents to support me financially, physically and emotionally, as well as endure the caregiving burdens themselves. Those burdens are far from over.

Sunset Beach Seagulls

6.  Chronic Illness is Still My Full-Time Job. People seem a little confused by this. I'm often asked when I will be going back to work. I'm told I must have a lot of time on my hands. Honestly, I am so busy I forget to breathe. Continuing to heal and maintaining the health I have gained are my 'work'. My time is spent on more fun things than I used to be able to do, but it is still mostly dedicated to healing--to physical therapy, doctors appointments, counseling, acupuncture, massage, etc. I currently still only do my ADL's (Activities of Daily Living), not my IDL's (Instrumental Activities of Daily Living). This means I still don't do laundry, cooking, cleaning, grocery shopping, etc. I also don't drive. Our goal as a family is for me to continue my work at healing and to help me to become as independent as possible. That is my work.

Ocean Isle, NC: Shells In The Sand

Blessings,

Emily