365 Days

SDR pic365 days ago I began a journey. On a Friday afternoon late last October, I woke from a four hour surgery, thirsty and begging the nurse to bring my husband back to the recovery room. (She gave me two ice chips and said my husband would have to wait to see me. She is not my favorite person ever.) As I lay there in that recovery bed, flittering between the last remnants of drug-induced sleep and consciousness, I contemplated the huge life step I had just made. I looked at the legs laid out before me. Legs that had made up so much of my story up until that point and wondered how as the composition of those legs were changed, how my story may change.

It would take a while for the changes in these legs of mine to be fully realized (and another surgery) but those changes did occur. As I fought to wake up on that Friday afternoon in October, I attempted to process what had just occurred. The road to St. Louis had been quite emotional and tedious, as we gathered the needed materials to be considered for the surgery and as we waited for the call to verify that I was indeed a candidate. When my mother entered the recovery room (and I had eaten two more nourishing ice chips) I asked her if they had actually cut the nerves because I still felt tightness in my left foot. I can remember the look she gave me as she reassured me that yes the doctors had actually done something during the four hours they spent with me in the operating room.

I can be a bit loopy when under heavy sedation and tend to force those around me into random, and slightly panic-induced, conversations.

I can also insisit on eating and drinking large amounts of food after coming out of heavy sedation, which is also never fun for those around me because such indulgences never quite settle well with my stomach.

Obviously, I am loads of fun in such circumstances.

As I have been looking back over this year as my one year SDR anniversary has been approaching, I have been filled with so much emotion. In some ways, the year has passed quickly but in other ways it has been such a long one for me. It feels like our home has revolved around “Lynley’s Recovery” (seems like that because it has. Sigh) and little else. Our calendar has been this perpetual reminder of surgery dates and PT appointments. I have grown a bit sick of myself in all of this.

So where am I now in those journey? I would say a pretty good little place. It has been long. February and March were brutal (If we are being honest, April wasn’t the best either and May was no shinny penny. ). Recovering from PERCS was significantly more challenging than we ever expected and I had to slow way down to tackle that mountain. We tried to find bright spots during those months, such as the joy in navigating the asiles of Target in the motorized cart, but those were long days and not being as mobile as I have been in the past was hard on the psyche.

The emotion that has been felt this week really centers around so many things. Gratefulness for being able to walk this journey. Exhaustion for having to walk this journey. Confusion for why this journey exisits. Learning humility in the journey when various friends and family have worked in ways to make my recovery better (I litereally did not cook one meal the entire month of November for my family.)

Many ask where I am physically at this point, typically followed by the question, “Are you fully recovered?” Honestly, I do not even know how to answer such an inquiry. Am I fully recovered? Possibly, but not really. This road is long and “being recovered” sounds like healing a broken leg and not altering a life-long physical pattern (However, I typically answer “Yes” to this question because the inquirer  is simply being thoughtful and no one appreciates a jerky response.). Physically I am good. The tightness that has been ever-present in my legs, tightness that was getting tighter as the years progressed and rapidly aging my body, is gone. It is just simply gone. There are days when that still blows my mind. People have asked about the tightness (AKA Spasticity) and what it feels like. My best way to explain it is like rubber bands are constantly holding back full range of motion. The tightness is not similar to muscle soreness from a hard workout or sitting for an extended time but rather like bands that refuse to release. As I aged, those bands continued to constrict. When I woke up on October 25, the rubber bands were simply gone.

Amazing.

Rehabing after PERCS is where all progress made at the end of last Fall came to a halt. Although the lovely pink cast (No one ever let me choose cast colors again. Pink?! Why did I not opt for black?)  was removed at the end of Febuary, I was still really struggling with mobility as late as May. There were some gray days during that time but I kept pressing forward (Thanks to the encouragement of my husband) and finally started to see the light at the end of the tunnel. Then one day I noticed I was walking faster, with much less pain, and my ankle and foot were not swollen by the end of the day. My physical therapist graduated me from PT at the end of July, a day that was celebrated more by my kids than by myself (Bless their hearts. I do not even dare add up the hours they sat in the lobby of that PT office this past year.). From that point, things continue to improve daily. Limitations that held me back in workouts in the past—whether from tightness or rehabbing my ankle— are fading away. I happily skip right past that motorized cart in Target and grab a regular buggy like everyone else.

(Side note: That motorized cart may look grand, especially on those days when you are tired and you simply want to shop all of Target’s glory in peace without worry of sloshing your Starbucks latte. Here is what one does not realize about those carts: They are big and hard to turn and make this horribly loud noise when one must back up. And despite the fact that the cart was plugged in to charge when you first started your shopping excursion, the battery can die right in the middle of the store leaving you stranded with a basket full of groceries. Also, most employees are not very gracious when you accidentally turn a corner a bit too sharp and knock over a display. )

So this journey…it has been long but it has been good.

My journey actually began before that day in October. It began at that moment when something went a bit wrong in my brain’s wiring and the signals were crossed to those muscles. I have reflected a lot during this year as to why things are they way they are in regards to my diagnosis. For me, the reason behind why I have spastic muscles remains a mystery. We do not know what happened in that delivery room, in those moments before or after birth that slightly scrambled a small part of my brain that spends messages to the muscles in my legs. Although my “condition” (aliment?  \Predicament? Malady?) has always been known to me, it was not something openly discussed in the past with many individuals. For one, it was not a huge deal for my parents and therefore was not a huge point of life drama for me. Second, I just have never felt super comfortable discussing such matters.

I have had many theme songs this year. Songs that have rallied me on (Thank you, Katy Perry, for realeasing “Roar” last fall because I still have a cheesy 14 year old girl living inside of me.). Songs that have inspired me. Songs that have focused my rehabilitation. One of those songs has been “You Make Me Brave” by Amanda Cook. I can be all “I had to be brave because I had surgery” obnoxious here, but that is not how this particular song speaks to me. The lyric “You called me out beyond the shore into the waves” encapsulates my vision of this journey. Because here is the deal. This thing about me…. this thing that I have secretly wished would not be part of who I am for 36 years… is basically fixed (*). These past 365 days I have wanted to channel the eight year version of myself and tell her “It’s okay. It gets better. Things are made better beyond what you ever imagined.” But in the “fixing of these things” I have discovered that it was the very thing about myself that I have always wanted changed who made me the person I am and is the thing that God used to shape my heart.

He did not call me this year beyond the shore. He called me repeatedly over the past 36 years to step off a shore of fear and comfort into those waves. He called me to get on with life and be brave even when “things” made me want to be hidden at times.

These past 365 days, I have wondered more than a few times what life would been like had I had SDR as a teenager. This operation was in its early stages in St. Louis when I was in my teens. In fact, upon meeting Dr. Park (the amazing surgeon in St. Louis who is one of my heros…and a hero to so many others…and really the picture of humility and graciousness), he told me how he knew my childhood orthopedist, which lead me to believe that most likely my childhood orthopedist knew that SDR was happening a mere six hours from my hometown and not once did he provide it as an option for my parents. If you know my parents, you know they would have been all about checking into it and seeing if I was a viable candidate at that time.

Yet if I had experienced the surgery at let’s say 15, rather than another heel cord lengthening procedure like I did that year, and this “thing” about me was made irrelevant, would my journey be completely different? God has redeemed so much of my story, as he has yours. He called me by name, saying that my birth story (born with a disability to an unwed mother) was not an indication of my life story. He has shown me that things which appeared to be flaws and limitations were the very things he was using to set me free.

I paid a lot of money this year to realize all of that.

This journey is only beginning. I am so beyond grateful for the past 365 days, for the countless individuals (friends, family, nurses, doctors, PTs, and my fellow SDR peeps…both adults and children…who understand this journey.) who have rallied beside me, encouraging me along the way. I am grateful that a doctor in St. Louis realizes that spasticity can indeed be splayed and for his phenomenal team. I am grateful for parents who instilled in me what the important things in life are and that the little things simply do not matter. I am grateful for a husband who has been my rock for so long, but especially this past year. He has filled these days with laughter and encouragement and lots of Sonic beverages.

Sometimes we let our greatest fears serve as our biggest hesitations in life. Yet those fears are the very thing that will let us one day fly.

365 days later and I am soaring.

 

“There is freedom waiting for you

on the breezes of the sky.

And you ask, What if I fall?

Oh, but darling,

what if you fly?”

-e.h.

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4 thoughts on “365 Days”

  1. I absolutley loved reading this! We are scheduled to meet with Dr. Park and his team December 15th for my 4 year old daughter who has spastic diplegia. She has taught me so much in her 4 years with her amazing spirit and determination. Thank you for sharing this post.

  2. Hey there, I don’t really have much to say except to say that I can really relate to most of what you wrote. I had SDR about 2.4 years ago and like you I still don’t feel fully healed! I am still seeing small things that are different and awesome as I keep trying to improve.

  3. Hello
    I appreciate so much your story and your courage thru this year.
    May God bless you and family

    Hilda Clay

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