This past weekend, my daughter, Meaghan, and I were watching a Dodgers game at a Central Coast pub, Old Cayucos Tavern and Cardroom. The place reminded me of a small locals bar in upstate New York, where I attended William Smith College.
The Oaks, a townie establishment of Geneva blue collars, was overrun with entitled college students during the academic year. Think Good Will Hunting.
This tavern, at 1 p.m. on a Sunday, was overflowing with colorful, middle-aged+ folks who all seemed to know each other. Meaghan and I looked a bit out of place.
But this has never stopped me, or my daughters, from walking in as if we owned the place! Add a large green oxygen tank trailing behind me, and we were quite the sight. The bartender was thrilled to have us as we were Dodgers fans and it was an excuse for him to have the game on.
I’ve become comfortable walking into any situation with my e-tank (tall green oxygen tank). It has become an extension of me, keeping me alive and breathing while I wait for my bilateral lung transplant. It took me three years of hiding my need for supplemental oxygen to reach this acceptance. Previously, I’d be driving around with my cannula in my nostrils, breathing O2, until I saw someone I knew. I’d rip it out of my nose, wave, then put it back in my nose. I would avoid shopping locally because I was embarrassed at my “handicap.”
When I realized I had to be up front with my new lifestyle, I took it to a whole new level. When my requirements for O2 were less, I used a small POC (portable oxygen concentrator) that I named Clayton. It was less intrusive.
I would dress Clayton in a baseball jersey with the number 22 on his back. During the Christmas season, I put twinkling lights on my POC and red bows. I was no longer in denial.
When my O2 needs became greater, I graduated to the e-tank, which could supply me with more than five liters of pulsating oxygen. My new best friend, simply called Greenie, was not as small or easy to dress up.
I obviously looked “disabled” but it provided the five to six liters of continuous flow that I now required. I could breathe!
After Meaghan and I left the tavern, I asked her, “Do I look pathetic with this tank? Would you feel sorry for me if you didn’t know me well?”
Her response was perfect: “Are you kidding, mama? You rock that tank. You don’t look like a bent over, super-frail woman. You look like a warrior who is dealing beautifully with your challenge.”
I had tears welling up. She knew exactly what to say.
But it’s not a matter of saying what I needed to hear. Instead, it’s an affirmation of how we look at a person who has a disability.
We are often so quick to jump to the conclusion, “Oh that poor thing (person). I’m sure glad that’s not me.”
This judgement needs to STOP. NOW! Don’t feel sorry for me or anyone else in a wheelchair, or on a POC, or sporting a prosthetic. We are not defined by our disabilities. We have learned to live with our new normal.
We do not roll up in a ball and check out of life, bemoaning our circumstances. We learn to redefine how to live our lives according to the challenges before us.
Make no mistake about it, life these last five to seven years has been an adjustment. There have been times I’m not sure I can make it through yet another storm of breathlessness, infection, hospitalization, IV antibiotics, utter fatigue.
On the other hand, I have grown so much spiritually and emotionally with a great deal of time for introspection, a time of solitude and prayerfulness. A time to figure out, truly, what’s important in this fleeting life and it doesn’t involve material stuff or economic status.
It’s my relationships. The importance of community. The power of Love. The essence of faith and hope.
If I were given a chance to redo this period of my life, I can honestly say I like the person I am with my disability. I like my insights, I love that my heart is wide open and every person I come into contact with has a gift that I can benefit from and, hopefully, they are able to be blessed
as well. I have an essence that is deep, joyful, satisfying, peaceful, accepting.
So no pity please. I’m better off than most. I have a deeper sense of gratitude, and a strong relationship and faith in Christ. I have a circle of family, friends, and community that is invaluable. Gold could not be more precious.
Instead, rejoice with me. These challenges make me a better person; I am more refined, compassionate, and a good friend, mom, and wife.
The next time you see someone who is facing an obvious challenge, smile at them, especially with your eyes. Engage them in conversation. Chances are you will feel blessed after an authentic interaction.
Rachelle Ledbetter has lived in Three Rivers for three decades. She has allergic bronchopulmonary aspergillosis (ABPA) and bronchiectasis. Most recently, she has been in residence at the Central Coast to escape the smoke and heat that Summer 2018 brought to the Sierra foothills, which make it even more difficult for her to: Just Breathe.