Firsts and Then Some

Since moving back to Missouri in June I've been experiencing quite a few firsts. (Oh, did you know I moved from Colorado to Missouri? Gosh, it's been way too long since I last wrote to you!) One first is when I saw a new massage therapist for the first time and she saw my surgery scar for the first time. She exclaimed, "Girlie, what did you do here? My goodness that's quite a scar you have." My sarcastic brain immediately wanted to come back with, "The better to eat you with, perhaps?!?!?!" (Sorry for the lame Little Red Riding Hood reference!) This did, in all honesty, make me realize I missed a very important third . . . My three year surgiversary! September 7, 2020 marked three years since my tracheobronchoplasty. It's been quite a ride for sure. My new pulmonologist, who I saw for the first time a few days ago, commented about what a heady and uncommon surgery that was and asked if it helped or was worth it. I didn't even hesitate to answer absolutely. While things haven't panned out the way my medical team and I had wanted, the surgery did give me back the very breath that makes it possible to live this crazy beautiful life I have.

Lying on that massage table, cringing as I always do when the therapist's hands work the very large area around the still very sensitive scar, made me think about what that scar represents and means to me today - three years later. I've discussed my scar in a past blog post, but on this 3 year surgiversary it's worth revisiting. I'm not ashamed or embarrassed by my scar by any means. In fact, I'm pretty dang proud of it and take full ownership of it. However, I don't feel the need to show it off, flaunt it, draw any attention to it whenever it is visible to others, which is very rarely, or explain its existence to strangers and passerbyers. I cherish that scar and all that it represents to me. It's such a personal and intimate part of me that I am very guarded about who I choose to share it with and to tell its story to.

It's mine, but not mine alone. I know that sounds odd, so allow me to explain. Yes, the physical scar is mine to proudly wear as a physical shield of honor, but it actually belongs to my family (especially my mom and dad), my dear friends, and amazing medical team who have been with me every step of the way on this journey to grace-filled breath. There have even been many acquaintances along the way who’ve offered a smile, a kind word, and even prayers to me at just the right time; even if I didn’t know how much I needed the support of those people who often come and go in our lives without us paying much attention to them or the impact their presence, however short it was, had on us. Believe me when I tell you, every breath I am blessed enough to breathe, no matter how easily it comes or how hard I have to battle through every single inhale and exhale, is nothing short of a gift from God and the grace that only He can provide. I would not still be breathing without that scar or without the unending love, support and encouragement from all of those amazingly wonderful people who are on this journey with me or without that sweet grace from God.

As to some of the other firsts I’ve been experiencing since my return to my home state, they are varied and not just my experiences. Did you know there's a worldwide pandemic going on? That's a first for I'd dare say most

of us! I've been doing a decent job of quarantining and not being in large crowds. For now all I'll say on this topic is that I miss people and hugs. Some of you who know me personally or are part of my Facebook network, know that I am currently a basement dweller at my folks. It’s not the first time this little birdie has returned to the nest after a time of absence; post college days come to mind! However, it is the first time returning since being out on my own and functioning as a full-blown, responsible, independent adult woman. To say that the parental units and I were both dreading this new era is putting it mildly. Even though this is a temporary arrangement, none of us were especially looking forward to it. Nonetheless, when one’s health determines that it’s no longer feasible to live 15 hours away from your main support network, you sell off chunks of your stuff, load the rest in the U-Haul and pile into the basement until the right house that fits all your health needs and budgetary confines reveals itself. (On an aside, I am completely blown away at the cost of housing in southeast Missouri. For this area it’s even more absurd that in Colorado Springs - statistically speaking any way. Rent is ridiculous here! Chalk it up to supply and demand I suppose.)

To all of our surprise my basement dwelling is going significantly better than any of us thought it would. It’s actually not too bad and is making it much easier to wait it out for the right home to come along. I’m feeling more of the need to have my own place simply to be able to have my own things again. It would also be nice to just know where things are, such as fall/winter clothes. After many trips to my storage unit we have yet to locate any of them. I swear they are lost in the abyss of the storage world! On the flip side, as I am diligently scanning all of the avenues I can think of to find the elusive new home, my dad keeps asking if I’m tired of them already. My mom keeps telling me I should just stay through winter. We are all so relieved to have been able to settle in to a nice, peaceful existence of co-habitation. To be honest, I think they are going to miss Lani, my ever present and affable sidekick, way more than me! :)

In all seriousness, another round of firsts involves my parents. This is them. Aren't they great looking! Now you know where I get my good looks from!!!! (I do totally crack myself sometimes and am just kidding.) They have been my rock since this whole journey began in 2012 when I moved into a building infested with black mold. No matter what life has thrown at me, they have held steadfast in their unyielding support of me. Even while in my second home state of Colorado, they found ways to be there and support me. One, if not both, of them would hop on a plane or in their car and come take care of me if/when I needed them to. No questions asked, they just did it. Everyone should have family like them. I am a very blessed and lucky woman to have them. However, this is the first real time they’ve lived with this insidious disease o’ mine on a day in and day out basis. Even though they knew it, this is the first time they see how much I push myself to maintain some sense of normalicy in my life. This is the first time they witnessed, firsthand, what a five or six week full on, can’t keep my eyes open, can barely walk across the room, simply cannot function in any capacity to speak of looks like. They’ve known it, but knowing it and living it are definitely two different things entirely.

My mom has known me to say I’m just really tired, and even recognizes it in my voice when we spoke over the phone these past five years. Yet, this is the first time she and my dad are seeing it daily and fully know that when I say I’m tired I’m not just the normal, I didn’t sleep well or worked really hard today kind of tired. They both now see the kind of tired that comes when you struggle on an almost daily, sometimes minute by minute, basis with your chronic illness. I’m not even going to downplay the fatigue that struggle brings. It’s different than the welcomed exhaustion of a good, hard day’s physical labor. It’s different than the welcomed (well, for me anyway) mental exhaustion that comes from a good hard day’s (or semester’s) worth of mentally challenging work. It’s a different than the maybe not so welcomed, but still so very challenging, exhaustion that comes when one grapples with issues of their faith. It’s different because the exhaustion one experiences when fighting a chronic illness combines all of these different types of exhaustion right at the point where you think you couldn’t possibly find another single solitary ounce of energy to inch the slightest bit forward because you are so utterly and completely drained. Yet, somehow, someway, you dig a little deeper and battle to find that teeny tiny ounce of energy and somehow, someway do manage to creed forward throughout your day; if only it is that one inch. This, my friends, is what my parents are now witnessing for the first time on a daily basis. And it’s killing them not to be able to make this better for me. . . .

I have been dealing with this in the privacy of my own home for the better part of five years. To be honest, I liked it that way. It’s so much easier to “fake it until you make it” when there’s no one around to have to fake it for! Nonetheless, when I agreed that it was time for me to move back to Missouri due to the progression of my TBM, I knew what my parents were in for. They would be seeing and my world from a completely different perspective than they had with me being 15 hours away. They knew it as well, but you really cannot truly understand it or prepare yourself for something like this until you actually live in it for a while. During the first five weeks I lived here I could barely get out of bed -let’s just say it was a BAD one. I could see the pain in their eyes and the need to make fix it. I felt horrible for them. They wanted me closer to be able to help take care me. I think it’s been much harder on my dad than my mom, though, as it’s always been my mom who’s stayed with me when I needed more care than just a few days visit could provide. He’s truly seeing this thing for the first time. The reality of what that meant and what my life looked like when in the midst of a full blown whopper of a exacerbation hit them like a ton of brick. I hated that I did that to them. Correction, I hated that TBM did that to them.

I will admit that so far being a basement dweller in my folks’ place hasn’t been too bad. Even though I tend to be a bit of a loaner with life in general, I especially tend to hide away when I do not feel well. It’s been really nice, though, to have people around to just “do” things for me. I never have to worry about getting my laundry done. It just is. Most days I do not have to worry about cooking,

that is if I even feel like eating. The food is just ready. And let me tell you, I come from a very long one of excellent cooks, so it’s been super fantastic to be in my folk's home eating my mom’s home cooking again. I don’t have to worry about cleaning or vacuuming. It’s just done. My mom is such a go getter that sometimes I have to watch what I say I’m about to do or the next thing I know it’s just done - before I could even blink an eye. She’s a force like that! That’s not to say I don’t participate in household chores as well. I do as much as I can when I can - I even cook, too! I may actually miss this when the right new home for me manifests itself! :) It's been nice to be able to just be quiet and rest for a bit and for as long as I need to. Here are a few picture of the views around their house.

So, enough rambling for today. Happy 3 year surgiversary to me, my scar, and all of my loves. Thank you from the bottom of my lungs, er heart. Wishing you all lots of love and grace-filled breaths as you travel on you own journey to easy breathing street. It's so good to be back with you and as always thank you for taking the time to read my blog and be a part of my journey. I truly appreciate all of you. Wishing you blessings of grace, mercy and overall fantabulous well-being.

Shonna