Our Own Sort Of Love Story

Love is such a vital thing. What in the world would we do if God removed it from us?

I think it would be impossible for anyone of us to survive – literally – without Love.

From the very beginning, from birth, we learn love, crave love, give love. It’s completely innate and completely self sufficient.

As we go through life, it’s the one thing we constantly seek, and for most people, it is the basis by which we judge the success or failure of our lives.

It is the beginning of all other emotions – sadness, anger, jealousy, joy, courage, endurance, elation, desire. None of these would exist without the invisible but substantial process of love.

I have been privileged to have it.

Your family doesn’t choose you. You’re automatic. A given. They have to love you. It’s obligatory, in a way.

You’re spouse chose you. Picked you. Wanted you. They could leave at any time. Get out. Run. Sprint. Race.

But he hasn’t.

After nearly nine years, he’s still here.

He’s the bravest person I know.

Love.

Some may have the impression we’re fulfilling some fairytale, that staying together as we have through fire and trials is unbelievable.

Are we soulmates? Like characters from some novel, are we destined to be together by some unseen force of space and time?

Do “Soulmates” actually exist?

What do you think?

In my opinion, “soul mate” is a romantic notion produced by stories in books and movies. It gives the impression that you will meet The One – a fanciful person that will be perfect for you; your eyes will lock across the room at some profound moment in life, and from that moment on you will have your happily ever after, living in perfect unison and joy for life. But that is exactly what it is – a story. A fairytale.

Unbelievable.

Unfortunately, it gives all of us all a false sense of what relationships are in real life. Then, when we fnally get into a commitment, and it doesn’t reach up to that “Once-in-a-Lifetime-Hugh Grant and Julia Roberts in Notting Hill” sorta moment… it’s massively disappointing.

Don’t get me wrong, I’m far from being a cynic. I strongly believe in the possibility of beautiful, loving, long term relationships. My parents, for example, have been married for almost 35 years. My in-laws will be celebrating their 60th anniversary in February! They have all provided a shining example of what true love really means.

Someone once said – “Fight for your fairytale, it does exist.”

How do Leland and I fight for it, despite our hardships? Guidance from the best source has taught us a lot.

Work. Hard work.

Compromise.

Constant, unfailingly communication.

Loyalty.

Laughter.

Love.

Unconditional love.

Leland and I, have known each other since we were fifteen. We never dated when we were teens, we were just very good friends. Life took us separate ways, to different cities, different people, and other lives. Eventually, we found each other again. At the time. Neither of us thought we were in a place to be in relationship, both raw from being hurt by others. I had just been recently informed about my Bronchiolitis Obliterans diagnosis and told that I would need to have a double lung transplant one day, probably soon. Our friends and family though saw something in us that we didn’t yet fully see – true love. The kind that isn’t frightened by past hurt, or future stumbling blocks.

No, there weren’t any eyes locking across a dark room; no love at first sight. Sadly, neither of us have those gorgeous English accents either. (Although, we do watch a lot of British TV, but that’s another story entirely). Our longstanding friendship soon grew into a deep, incredible love story. But, it’s not the reality TV kind or the Cinderella kind. It’s a story all to our own, and it’s powerful and stirring in its own way.

We’ve been through some of the worst, unimaginable things any couple should go through (including my transplant, and many, many close calls!) and we’re still here, married, happy, best friends, in love every day. Soon, we’ll celebrate our nine year anniversary.

Soul mates? I think we’re far better than that.

The Creator of Love tells us this:

“Love bears all things, believes all things, hopes all things, endures all things. Love never fails.”

If you have a chance to have love, take it!

Build it.

Refine it.

Work hard at it.

Care for it.

Be brave.

And if you can develop a British accent, that helps, too.

(This post was originally posted in part on the blog This Noise is Mine authored by Kirsty Pickering Bott in conjunction with a monthly guest debate series “TNIM Talks.” To see the original post, as well as read the other guest posts with the theme “Do Soulmates Really Exist” please head to Kirsty’s blog here)

The Dandelion and Me

“Now – BLOW! BLOW, BLOW, BLOW! Keep going! Keep going! Go as long and as hard as you can, Miriam! I know you can do it! Blow all the petals off the flower. You can do it!”

The instructions for a pulmonary function spirometry test (A test performed by pulmonologist to measure how well you can breathe) are so ingrained that I can do it now as an adult without prompting.

As a child, though, I had help from a Registered Respiratory Therapist, who typically also used incentive animation to help me know if I was doing the test properly or not. These cute cartoons ranged from blowing out candles, to filling up a balloon, to my personal favorite – blowing the petals off a flower.

The one that has always remained in my memory was the dandelion. When I started the spirometry test and breathed in, the dandelion had all its little seed pods intact. The purpose of the “game“ was to breathe out so long and hard that all the little dandelion pods would come off the flower, ending in my ultimate victory. Needless to say, due to my severe lung disease and constant infections due to Immunodeficiency disease (which was yet to be discovered), I was never able to blow out all the candles, blow-up the entire balloon, or worse still, blow all the beautiful little dandelion seed pods off that elusive flower. It seemed always beyond my reach.

Because of this, I guess I’ve always held that secret challenge in my heart. Whenever I was out and about and saw a little dandelion on the side of the road, I would secretly pick it up and try to blow the pods off. I tried to never make a big deal out of it, out of fear of being asked what I was up to. If anyone did ask me, I would merely smile and make some clever quip about a weed in the grass, or some sarcastic comment about being bored and needing to be better entertained. But it was always a personal test – could I get all the pods off the flower? Would I win my challenge that day?

Creating and designing my own website was a lot more challenging than I had initially anticipated. I had to take my personality, my style, my own crazy brain and apply it to a tactile piece of technology. I had to work with others (albeit far more genius than I) to come up with colors, fonts, a logo, and a theme that would represent my journey and message. Somehow I had to personify me, make people see ME when they came to But, Still Breathing.

But how? And with what?

After my transplant, I was assigned to go to pulmonary rehab in order to strengthen my new lungs. One of the exercises was to blow up a balloon. You start out by just trying to blow up the balloon by itself. Then you graduate to blowing up the balloon while lying on your back. And finally, you blow up the balloon while lying on your back and having a soft weight placed on your diaphragm. To an “every-day-healthy-person” this may sound super easy, even ridiculous. However, I have to tell you, that the first time I tried to blow up the balloon, the only thing that happened was that I spit back in my own face! For real. I’m not kidding. Or exaggerating.

The flash that came back to my mind was my childhood and that silly dandelion animation. And suddenly I felt like a failure. But somehow that feeling spawned inside me a determination to work hard, and then work harder, and then work harder still.

“BLOW! BLOW! BLOW! I KNOW YOU CAN DO IT!”

Eventually, sooner than I thought possible, I was able to blow up the balloon with no problems. I felt extremely victorious and strong. Which I suppose was the whole point all along.

As a child, not being able to blow the seedpods off that stupid dandelion animation was always a source of frustration for me. But, that frustration created inside me some kind of work ethic, a need to try harder, a need to get better, a need to do everything in my power, within my limits to be as healthy as possible, as strong as possible. So in a sense, the dandelion became a symbol of those feelings from then, until now. A motivator.

Oh, and just as an update, I have since been able to blow the pods off every stinking dandelion I’ve seen lately, and then some. Haha! I win!

So, that’s why I chose the dandelion as the main theme, logo, and symbol for the relaunch of But, Still Breathing. It carries the thoughts and feelings of breath, strength, determination, work, hope. All the things that I wish to develop in myself and to convey to others.

Thank you to all of you that have supported me and helped me along the way. The journey continues.

Love,

Miriam

“I do not believe in the weeds. A weed is simply a flower that someone decides is in the wrong place. Why should the Taraxacum struggle in the cracks? It deserves an efficacious spot in which to flourish!”

-Sister Monica Joan, Call the Midwife

“Nunchuck Skills” – 5 Master Skills of the Chronically Ill

In all great Journeys and grand Adventures it’s important to obtain and master certain skills. For example: nunchuck skills, computer hacking skills, bear hunting skills
I love that movie.
But, seriously though, every day a chronically ill patient (for example, a transplant patient) wakes up we embark on a Grand Adventure. So, we also need to obtain and master certain skills. What kind of skills? That is what we are going to discuss in this blog post today.

Determination “a quality that makes you continue trying to do or achieve something that is difficult”

Some may refer to this characteristic as “stubbornness,” but I find the word “determination” to be far more accurate, not to mention tactful. People who deal with different types of illnesses everyday develop a determination you rarely see in any other population. What builds these skills in us?

Imagine someone who has had the goal of climbing Mount Everest for years. They’re now a hundred feet from the summit, only to be surrounded by a white out. They know the summit is so close, their goal at their fingertips, if only they can make it a little farther. They’ve waited all these years to make it! How determined do you think that climber will be to make it to the top? Pretty determined. Does he make it? Of course! He trained! He prepared!

Now, take that story and replace it with you, or me. However, you’re getting ready for work. Or school. Or trying to prepare dinner. Or beat your previous treadmill score. Your goal is so close! But you’re surrounded by – some health related episode inserted here. Will you make it? Will you reach your top? Will you prevail and be victorious over your personal Everest? Determination. It’s a skill we all obtain and master.

Resilience “The ability to become strong, healthy, or successful again after something bad happens”

Setbacks. We all have them. Sometimes they can be out-right devastating. Being chronically ill in itself is a setback. Do you remember when you initially got the news of your diagnosis? Do you have more than one diagnosis? Resilience is the quality that you gain after having to stand back up again, even after you have fallen perhaps many times.
After having my transplant, I had the impression that everything was going to be great. Even those around me did. But it wasn’t. If I hadn’t already developed the quality of resilience, I wouldn’t have been able to climb over the mountains of setbacks that came after my surgery. I know there are many others who go through the same thing every day. This is the life of those who have to deal with Illness, and also those who care for those who deal with illness. Resilience is a quality we master.

Patience “The ability to bear pains or trials calmly and without complaint, or to be steadfast despite opposition, difficulty, or adversity”

We wait on hold on the phone lines for nurses and coordinators. We wait to see those expensive specialists for months. We wait for prescriptions at pharmacies. We wait to hear the results from tests. We wait and wait and wait for transplants. We wait for cures. Those who are chronically ill develop patience.  But we don’t just develop patience toward these mundane every day experiences. We’re patient because we all have hope toward something. None of us could go on if we didn’t.  Whether its the hope that at the end of a day of long appointments we get to watch our favorite movie with our best friend, or at the end of a terrible week of disappointing results of evaluation results we get to fly back home to see our grandchildren, or whether we know for sure that at the end of a trial-some life we know for a fact we will be rewarded with something far greater – we all hope for something.  And we can endure with patience with what we have to deal with for now until we are rewarded with it.  Patience is the skill we achieve with time – and master.

Flexibility “the quality of bending easily without breaking, willingness to change or compromise

You’re going about your life, minding your own business, and BOOM! Sick.  You’re going about your day, trying to be a normal human being, and BOOM! Illness attack.  You’re going to the Doc hoping for good results, and BOOM! Not so much.  So, how do you react?  SNAP! No way! Why? Because we are of a different breed. We are made of stronger stuff.  Those who are chronically ill are flexible.  We have already come to understand that life is not a sunny day in the park – sometimes it rains – and guess who’s prepared with an umbrella? and a poncho? And an extra umbrella in case someone forgot theirs?  Yup. We are!  Because of our life experience we have learned that life can pull some serious punches, that’s OK because we already know it’s moves. We take bad news, unfortunate results, and setbacks with flexibility – because we’re masters at it.

Diligence “the quality of being careful and persistent at one’s work or efforts”

Now, this Master Skill may not sound as sparkly as the other four, but it is just as important.  As the chronically ill, we are constantly at work.  I have had many people tell me that being a transplant patient is like a full time job, and it is!  I spend most of my days on the phone, on the computer, filling out paperwork (either on real paper or online), answering emails, talking to insurance companies, calling pharmacies, and the list goes on and on and on.  It never ends!  If my life was not organized, I think all the administrative stress would kill me before my diseases would!! We as a community show a very strong work ethic because of what we’ve had to deal with, some of us all of our lives.  We are responsible, organized, and hyper-vigilant in all we do. (Some may even call it “Type-A” or “Anal,” but I prefer to use more attractive terms…)  We make good employees and organizers because we manage our lives well (and believe me – they do have to be managed).  We are all Super Masters of Diligence. You’re Welcome, World!  Your most qualified group of Party Planners has arrived…

So, there you have it.  Now, you’re ready for your Grand Adventure.  Did you know you were so well equipped?  With this set of 5 Master Skills, there’s no way your Everest has a chance, now.  Climb on. 🙂

Tough Decisions

Every day in life, we have to decide things. What do I have for breakfast?  What am I going to wear today?  Who will my friends be?  Am I going to have a treatment that will possibly stabilize this fast moving chronic rejection of unknown origin in my transplanted lungs, or that could possibly cause side effects and infections afterward that would kill me anyway?
I think the kids these days call that “Plot Twist!”
How do you choose between something that could possibly make your life infinitely better – or  disastrously worse?
When you’re faced with a path that’s not obvious to you, but the consequences of either direction are so different and so severe – how do you know what to do?
Robert Frost said he took the path less traveled and that made all the difference. That’s all well and good in poetry, but somehow in real life I think it’s a totally different story.
I’ve never been a huge risk taker, and I’ve never been a person to gamble.  Actually quite the opposite – I I typically have to know exactly where my next foot step is going to land before I take it.
My current situation is completely out of my realm. But, I suppose, deep down, I know that I have to do this. It’s really not an option of yes or no. Not for me. So, because it’s not a yes or no – it’s just a move forward kind of thing – how do I motivate myself past the obsession of thinking about all the things that could go wrong? It’s really hard not to think about the long list of risks. I suppose someone else would tell me to think about all the benefits instead. To focus on the positive. And I’m sure that that would drown out all the bad things and make me feel better about what I have to do. And that’s good advice. And that typically works.
However, in this situation, I guess I feel that I’m choosing between death and death – and that doesn’t feel like a good place to be.
You know that saying stuck between a rock and a hard place? This doesn’t even begin to describe the way I feel laying in this bed right now waiting to start this treatment.
I’m trying to stay focused on my family at home.
I’m trying to think about the beautiful day that I had yesterday before I came with Leland and some of our “kids” from our local area at Boykin Springs, playing outside in the beautiful weather and watching them splash and laugh so happily in the waterfall.
I’m trying to think of all the people who need to hear about God and the hope of the good news in the Bible that I believe in and how it’s my job to teach them.
I’m trying to stay focused on what I’ve learned in the past week about the gifts that I’ve been given and how I have a really keen ability to be able to help people even though I may not be physically able to do a lot of things other people can do.
So, while I’m laying here waiting to start this treatment and thinking about all the things that could go wrong and could be disastrous and could kill me, I’m trying to crowd out all those terrible thoughts with all the good things. And I know I will succeed.  Why?  Because I was shown through my family, my friends, through those I was able to help, and through the things I am sill able to do that I can.  Our strengths come not from what we can no longer do or comparing ourselves to our past selves.  That will only ever bring pain and frustration.  Our strength comes from focusing on what we still have, what we can still do, and nurturing and building that up to the best of our ability.  That is what will being you joy and strength and satisfaction.  Take it from someone who learned the hard way.
Right before my Campath treatment, I was in a really bad headspace, I would’ve never been able to handle it the way that I was. But through all of these different experiences (helping a friend, playing with my “kids,” volunteering, writing cards and letters to others, baking cookies for disaster victims…) I was helped to get to a spiritual mental and emotional strength to be able to cope with right now.
So, that’s how you make a choice between something that could possibly make your life infinitely better or disastrously worse. You pray, read, you talk, you listen. You feel. Then you have to have faith and trust that what you came up with is the right decision. And you can’t go back. You just have to believe that you were guided to the right place. Then once the decision is made you have to fight with the stubborn determination that your life has put inside you. I have to believe that this is going to work and then I’m going to get back to my family, I’m going to be frolicking in that waterfall at Boykin springs with my “kids” soon again, have the privilege of teaching others, and doing what I do best. I must focus and believe. It will happen for me. It will.

How do you make the tough decisions?  Comment below, or visit me on my Facebook Page to join the discussion!

Why I Fight

Over the years, I’ve had a lot of people ask me how I keep fighting, why I keep fighting.
Some people have even said that it’s inspirational (as embarrassing as that is) to see me continue to fight for my life despite all the things that have happened to me.
Why do I keep fighting?  That’s a very good question.
In rare cases, when I’m in a particularly difficult place in my life, I’ve even asked myself that. But, typically the answers come easily and quickly to me when I’m thinking and meditating on my own.
So how do I respond to others? When asked why do I keep fighting, I find myself looking deep into the person asking, trying to determine how to best answer. I discovered that I’m answering in a different way every time I open my mouth to speak. Occasionally, I say my God, Jehovah. Other times I say my family, my friends, or sometimes my donor famil and my donor – wanting to live well for them.  Or then there’s my message, my work as a volunteer to spread a message of Hope. And a time or two I even caught myself smiling and saying it was just to be stubborn – it’s always different.
Have I ever been caught in my cunning variance of replies? Yes. Why do I often give such different answers to this question? It’s not for the purpose of deception or avoidance.
Just because I have a different answer to every different person doesn’t mean that they’re wrong or that I’m lying. They’re all truthful and they’re all correct. Because the answer to the question why do I fight is this:
One more moment.
If I fight, I get another moment. Another moment on this planet with the people that I love to get to do what I’m purposed to do.
Isn’t that worth it?
So when a person asks me that all too familiar question I try to see and determine what they need to hear – basically what THEY need to fight for. And that’s the answer that I give them. Because I am fighting for ALL of it. And if they hear it from me, maybe they’ll realize a little bit more intensely what they could be missing and they’ll fight for it too – their family, their friends, their purpose, their hope… maybe they’ll even find the Hope for the future that I have found.
So, if you see me (or someone like me), ask yourself, what should you be fighting for? And really ask it. Look down, really deep down into your guts and find it. Then do something about it! Don’t put it into the back of your memory, on a dusty shelf.
Fight for it.
Fight for it every single day.
Fight for it like it if you let it go for one second you’ll lose it.
Because maybe one day you’ll be facing the prospect of it being gone and it’ll be too late.