I was wandering the newest supermarket to go up in our area yesterday. I was perusing the grab & go/hot food sections (just to see what they had) when I heard some one ask me, “Hey, what’s the battery life on that thing?”.
I am now unfazed when I get such a question because I know they are referring to my portable oxygen concentrator (I affectionately nicknamed my “jet pack”). The first time it happened a few months ago, it did take me a little off-guard, until I noticed the woman had a small bottle (cylinder) of oxygen in her cart. I realized she was just curious & looking for information. Not looking to catch me off-guard or seem intrusive. After all, is there really a good way to ask a question like that other than being direct? I just laugh though because invariably it always happens when I have my back turned to a person so it just feels awkward since I’m not sure who they are actually addressing; I just hear a question.
The second time this happened (yesterday), it was it was a nice gentleman, (definitely older than me but not elderly) without any “accessories”. I was kind of curious in my head for a second, but then figured he could also be asking that question for someone he knew.
However, he went on to tell me that he wished something like that had worked for him in the past but that he needed too much oxygen for it to be effective. He then proceeded to tell me though he had a lung transplant in April of 2014. Immediately, then I was the one who was asking the questions. He was gracious with his time & the conversation was pleasant but I think lasted a bit longer than either of us had originally intended. Yet, I was so glad I ran into him. It turns out his story was fascinating because he had a disease where only 2 transplant centers in the area would even look at him or consider him for transplant (which I’m sure was hard in and of itself).
I’ve been fortunate enough (from very early on in my diagnosis) to have gracious women who I have known both pre & post transplant, of varying ages & varying windows out of transplant (some with LAM or LAM & TSC both) be willing to have an open dialogue & let me ask questions at any point along my own journey.
Yet, I think it’s a happy accident when I find someone in my immediate area, relatively “fresh” out of the experience & willing to share how they are doing (both plus & minus side); so I really treasured that conversation.
It turns out it seems like such a small world to just bump into someone with that experience while performing an everyday act like grabbing a few things from a store.
I kind of laugh because it’s happened before when I’ve mentioned (on occasion) in trying to get to know people that I “dabble” in improv comedy. Suddenly we both get really animated & excited. We end up talking sometimes at a bit of a length to trade notes & experiences.
(It’s like that saying “When you find people who not only tolerate your quirks but celebrate them with ‘me too!’ be sure to cherish them. Because those people are your tribe.” It makes you feel a mixture of relief & gratitude because you know people “get it!”. )
In the course of this conversation, he told me about his center & then also about Gift of Life Family House, which I appreciated & told him how fortunate I felt to have stayed there.
Funny too, because it was my stay at Gift of Life Family House that brought me some new connections with people going through the evaluation process as well as people who had already started their post-transplant journey.
It brought me kind & gentle people who were willing to share their distilled water with me (without batting an eye) since I had “oxygen brain” and forgot to throw my jug in the car before I left. This small kindness saved me a short but doable hike to CVS in the August heat.
It’s also the particular happy accident to meet someone close to my own age, who was a few months out of transplant & was willing to sit beside me at dinner, which helped me feel less lonely & awkward. Don’t get me wrong, I have great support but there is something that hits you when it’s you in the sea of people that is actually facing that road ahead, even when you have someone to walk the path beside you. (Kind of like that analogy “alone in a sea of people”).
It’s shuttle drivers, (many of whom are transplant recipients themselves), taking me back & forth on those daily runs to the hospital for testing that make polite, yet meaningful conversation, that took my mind off the long day ahead.
It was also “Home Cook Heroes” who are friendly & personable who make wonderful food but then were happy to assist in cleaning up; yet while doing so, were not afraid to engage in a lively conversation if someone chose to initiate one.
All of these little kindnesses bestowed upon me from people I may or may not ever encounter again in life, left a lasting & comforting presence. It makes this journey a bit easier to travel down. There’s a small lift I get when remembering them that helps temporarily relieve the weight of uncertainty on my mind as I wait for my follow-up appointment to discuss my results & see where this path will lead next.
It always seems that those moments when I’ve recently thought about that uncertainty either consciously or subconsciously that I seemingly have these types of conversations find me. Most of which I don’t even initiate, but am glad someone took the time to.
I’m spiritual (but not overly religious). I think these people were sent into my life at this time for an important reason. As I get over the initial awkwardness of being taken a bit by surprise, I try & pay attention to what they are teaching me with these interactions & sharing their story. (Instead of retreating into defensiveness).
They wouldn’t have to start these conversations with me, but I’m finding when they do it seemingly leaves us both with a lift.
~ “Miracles come in moments. Be ready & willing.” – Wayne W. Dyer.
…angels visit when least expected…hmmmmmm
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What do you use distilled water for?
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Hi Jesska – it’s for my home oxygen unit I have a bubble making attachment that makes the air a little moist so it’s more comfortable and won’t dry out my sinuses or give me nosebleeds