Recovery & the lessons from it

I’ve been meaning to update regarding my recovery. Again, thank you for all of your well wishes, texts, prayers, and food! I have been speechless at most times at the generosity of my community.

My last post was about the surgery. I honestly think I’ve been in shock over the success!

So after the initial high and utter rejoicing over the success, I sort of plummeted. I had a really rough couple of weeks that started on the Monday or Tuesday after. I started having laryngospasms. Oh my word, I felt like I was trapped in a torture chamber that used to be my body. I could be mid-sentence and then have the constriction that would silence me then send me into a coughing frenzy. My vocal cords hadn’t even had much of a recovery after extubation and I was further irritating them with excessive coughing. By excessive, I mean that could be an understatement. I coughed all day. I coughed all night. No, I didn’t sleep through the night until a couple nights ago. I wheezed. My voice broke. Only a few sentences would come out before coughing fits began. I felt like I’d never have a normal conversation again. I had never had to FOCUS so much on communication. I had to carefully time sentences, coughing, length of utterances, and breathing. I was exhausted. I wanted to talk but it was so difficult and arduous. The increased coughing from increased effort just made my head hurt worse and my throat too sore. At times, I just stopped. Luba was fantastic. Sometimes, I just stopped and shook my head and he would continue. He ordered at the drive-through. He finished sentences. 

Talking, often for long periods of time, is my job. Singing kid songs is part of the gig. How was I going to continue and be decent again? I prayed and prayed that this would be temporary and steadily improve as I read more and more how some struggled with this still, after 5 years, after 10 years. Sometimes, people cough until they vomit. They’ve have to leave restaurants due to coughing incidents. Even though my surgery was successful in that no nerves were cut, there’s always collateral damage. We are so intricately designed. The only “catch” that is really left is an inability to move my arm in one direction. I can use it functionally and move it in full range of motion for all directions but one so I’m awaiting a PT evaluation for more information and treatment.

The recovery time, although hard for a few weeks, was a great time for Luba and I to catch up on lost time. Since he arrived, it has been a whirlwind of visa completion/interviews, wedding preparation, studying for the BCBA exam, and medical appointments. We’ve had little time for conversations, dreaming, discovering, and exploring. This time of rest allowed us just that. We were able to get away to Solvang and San Luis Obispo for a couple days. I could cough anywhere. I could feel like poo anywhere. So off we went! It was therapeutic.

When I returned, I found out that I passed my exam. I’m still in shock. I went in that day to the 4-hour DIFFICULT exam just off 1 week of sickness. No studying. I had saved all the hard material to prep that week. Then, the weekend before the exam brought 2 urgent care visits. I was hit hard. I couldn’t take any medication for a migraine that had crept up because the exam was within the week before my surgery so I took the exam with a cold and severe cough along with a 2-day old migraine. But, BOOM! Passed! This was the hugest relief because I failed my first time. I went in prepared, confident, and ready. This was one of my biggest lessons in humility. So now, Luba and I can spend our weekends like “normal” people. The weekend is ours. No studying. No stressing. I’ve been working on this “hurdle” with classes, fieldwork (1500 hours while working full time), or studying since 2011. It’s hard to believe that this portion is really over.

I’m now back at work as of Tuesday. It was great to get some structure and schedule again. While I’m happy that I caught up binge watching Orange is the New Black and Homeland, my mind needs momentum throughout the day. I work in 2 modes—machine-like fast & efficient or sloth. There’s no in-between. I got a very warm welcome from coworkers, parents and kids. It was the kids that I was happiest to see. One high-schooler literally beamed from ear to ear and shouted. How can receptions like those make you lose sight of what you are there to do and the impact one can have relationally? 

Recovery and being on disability have been my teacher. Here are just a few thoughts from many and “I wanna’s” stick out from the recovery period:

1.     Follow up in life. I try to do this during deaths. People get a lot of attention and assistance until the funeral and then attention tapers off. Unfortunately that’s about the time when the shock wears off and reality sets in. I want to be better with the follow up—after surgery, after a miscarriage, after a death, after job loss. Go the distance. Check in after the dust settles because I bet you could be the only one. It just happens – not intentionally. Remember the anniversaries of these events. I think those can be the hardest. I wanna be better at this.

2.     Life’s kind of like a relay race. Sometimes we are running. Sometimes we are waiting. Sometimes our turn is not anywhere near yet. But we are all connected. Sometimes we run a bit next to the other person to gain momentum before we pass that baton and watch them speed off. Experiences are like batons. Hope is a baton. I ran my portion and I must pass on my story. Someone is waiting on it in order to finish their portion of the race.

3.     Better perspective. I try to always have a wider perspective and often times do well. This health journey was an experience like that to look past myself. I was mad, scared, hurt, you name it. But, I always knew it's not just about me. I always felt these internal dialogues in my spirit.

What if I lose my vocal cord? It’s “my thing.” It’s my job.

Then what?

Well I won’t be able to talk loudly and the volume outcome will be unknown. I am scared of losing my career. It would mean more surgeries and injections. 

Well then you can write that book you’ve dreamed of. People like your writing. Use that. You went into this profession because you knew communication was so much more than a literal voice.

What if I lose arm function?

So?

How will I get dressed? Write? Do daily activities?

There are people born without an arm or both. They never had life with one. They eat. They dress themselves. They live life. There are people with no legs. People lose limbs every day in the bravest of ways. Do you think you deserve this more than others?

What if my face is partially paralyzed? Everyone wants to like what they see in the mirror.

Seriously? (I think the Heavens shook in laughter) You’ll be just as beautiful. People live like that every day, and worse. You choose to like what you see. In reality, few people “like” what they see. Noses are too big, crooked. Wrinkles are too telling. Beauty is shown, not seen. Bright side: you'll have that voice you are so worried about. Make up your mind.

What if I’m physically just… “broken?”

You’ll still be okay. You are strong. You will figure something out. You’ll probably write some sort of manual or blog about it.

I always felt this message of “I hear you” or “I love you” but followed up with “you’ll be okay.”

The hardest feedback to hear was: “It’s not about you. It’s about me.” It’s sometimes hard to remember that it is as simple as that, or has to be, for us as Christians.

4.      Gratitude. I did come out with all of my function. Thanksgiving over that is every single day throughout the day. I’m thankful for my faith and my unique relationship with Jesus. I’m thankful for all of those quiet moments and assurance I received. I smile each time I remember those- even just being wheeled into preop room 7 (explained in last post). I’m more grateful than before of little things, and I’m so much more grateful for Luba. I thought I was before, but seeing him in action during the diagnosis process, surgery, and recovery, I’ve been in awe of his dedication, sacrifice, and courage. I always say this but he’s the kindest person I’ve ever met. He’s never complained or put his needs first.

5.      Empathy. I return to work with a new perspective but newly found empathy for clients and parents. I’ve learned to slow down and explain more during interactions with parents, specifically during evaluations. Unexpected news is hard to hear. I know this. Even when you know terminology like I did for my specific case, you still want to cut the jargon and be spoken to like a human. For the clients, I’ve learned to ease up and let more things slide. I’ve learned to be quiet and not try to fix everything (because that is part of my job). Wait for the person to ask for help, and in the meantime, LISTEN. At the moment, I still struggle with a communication disorder secondary to the surgery/recovery. It’s getting better daily and will subside but I feel how hard it is physically to focus on talking and formulating my thoughts all the while trying to move past any embarrassment or self-consciousness. I’ve experienced the “fix it” people (with good intentions) who start interjecting offering water, or something else. I have felt the times when you just want to forego the message because of the compounding factors or you avoid opportunities to communicate altogether.  

So, again, THANK YOU for your part in this recovery. No part is a small part.

Now, let’s get to celebrating, shall we?

Here’s to living life to the fullest, celebrating every day, going the distance with friends AND strangers, choosing to find new perspectives, and running that relay race and sharing that baton with others!

Love,

Danielle