Hey everyone! I’ve spent the first half of 2019 trying to breathe, literally not figuratively. Yet, this health journey has probably been my best one yet. How has 2019 been for y’all?
Earlier this year I faced a dilemma and if I was honest I’d say it started last fall. Many of you know, this blog is a partial diary sharing life lessons, most of which I’ve gathered, in my role as a hospice volunteer manager. Although I am sad that I’ve not been able to write as often I’ve been battling an ongoing illness. My hope is that as my life has changed I’ll be able to write more.
So I’ve shared in the past that hospice introduced me to a world of people I’d never have had the chance to meet otherwise. Some of them were the fantasic patients who have served as parents, spouses, WW2 veterans, pinup girls and countless others. I’ve worked alongside some of the best and most fierce home health aids, chaplains, doctors, nurses, social workers and of course volunteers all of which who have chosen to devote their lives to ensure the patients we serve live their best dying days possible. Truth is we all deserve a quality of life as defined by us.
Last fall I met a woman, receiving hospice care, whom I identified and connected too. Often times connecting and identifying with a patient can push the best hospice employee or volunteer over the edge. Now, let me explain connecting to your patients is a part of the job and you learn to connect, let go, regroup and move on. However there are times when your life and theirs is so interwined you are left transformed by the encounter. Those are the people who can cause you to evaluate why you choose to work in such a hard industry.
6 years in the industry and I’d just met such encounter. She was a 60 plus feisty woman and we enter each other’s life in the beginning of my hardest health season and towards the end of hers. She’d live her life as a wife, widow, divorcee, mother, grandma, veteran and now she was dying. She desired companionship and my job was to connect her to a companion.
We clicked at the first meeting. We shared a connection. At first I thought it was because we shared the same political views. Yet my fondness of her was deeper than conversation and intellect. it was because she understood my need to fully express myself while gulping deep breaths. It was the shared understanding that we have to be fierce to fight the battles we faced. It was because every breath was truly a struggle and yet we had many more breaths to take. She was a woman after my own heart.
You see, she changed everything, after we met in such pivotal points in life. She was gasping for air to prepare for death and I was gasping for air to prepare to live. She preparing to die but determined death would not win until she casted her ballot for the 2018 Alabama governor’s race. My girl! Duty before rest because she did it! She lived through the election last fall and died shortly afterwards. Little did I know wherefore she would take her last breath to die I was about to gasp for air live.
After the election, her death and the holidays all came and went I was struggling to breathe. The asthma episodes were frequent and I was exhausted. I started to ensure decisions were made just in case. I made sure wishes were in order. Just in case. I’d dealt with asthma as long as I could remember. Steroids were always on hand and shortness of breath in the shower was common. My best friends always in tow was the inhaler and nebulizer always near.
Shortly after the new year I slept on my couch taking cat naps due to the paralyzing fear of suffocating. Some days I’d set alarms to ensure I awoke every few hours and take the neccessary breathing treatment. Thank God for my SOS my Guy! He was a knight in shining armor staying on the phone until he sleep over took him. After I bid him good night I’d mindlessly watch television until sunrise. It was rough. Friends and colleagues would text throughout the day just to make sure I was okay. Thanks to them!
Did I mention I have a guy? Well we’ve been dating over a year and it really is the most amazing love story ever.
I was tired but I was a fighter. My quality of life depended on it. After hearing from a friend about new treatment. I decided death couldn’t come and with that had a conversation with the doctor. It was words and tears. Yes, I cried. Why? Simple 6 & 1/2 years I’ve spent my life helping dying people live out their best days. Yet, I wasn’t doing the same, not by choice but because I’d spent my entire life battling an illness. Some of which was in silence and other times very lout for safety. It was time to think about what quality meant to me.
Stop and take a moment. How is your life? Is it the way you want it to be? Are you just going through the motions? Have you tried the next new whatever to get the results you want? If not why? Don’t wait do it! Stop losing valuable time and live your best life. Not some cliche but truth.
Oh yeah, in the end I started a new medication. After a battle with insurance I am 4 months in and appear to be living my best life. She changed everything on the day we met. I’d love to say it is possible it wasn’t her yet I think of her often. I think of the power of knowing I have some more to do every time I inhale and exhale. Since I can’t go put flowers on her grave I’ve decided to live everyday well. 60 days ago I walked away from my hospice job back into nonprofit to focus on funding the agencies that are helping people find their quality.
I can’t wait to share more of my journey with all of you because we got things to do! NOT TODAY DEATH I HAVE THINGS TO DO!!!!