miraculous hope in the shape of a gold hockey puck

“We could implant a pump for your muscle spasm medication.” Dr. Rush began slowly as I described the contractures that I experience due to cerebral palsy.

I felt my body react in every way: muscles tightened harder, ready to fight this suggestion, my emotions instantly “not wanting to be a person who needed more than oral meds to manage CP” and my heart feeling…embarrassed at the suggestion? Shame? Failure, that I wasn’t managing this well enough, that we were even talking about this? Looking back now, 18 months later– Yes, I was instantly battling all of these…but why?

I think to understand that, we need to go back much further….

I have shared some of this story, pieces and parts along my 51-year-old path. The beauty of time (at least sometimes) is that we get the opportunity to look back, with better vision than we had at the time we were IN a certain part of our journey. For, me, the far more important part is that I get to see how the God I love has been at work through the whole journey because I know and trust that he was, is and always will be.

I was born to parents with medical backgrounds, in a part of the US that had one of two NICU’s at the time. I was born to parents who instilled the blessing and saving grace of a relationship with Jesus Christ. I was given to a family who had the knowledge and ability to pursue treatment, surgical and otherwise to give me the best possible outcomes I could have, with my level of CP. These are all true, all of which I am forever grateful for.

AND

Having CP is a bitch. My body is perpetually confused with what to do and how to do it, from each step I take to maneuvering around kids’ stuff on the floor (or my own,) tripping or falling for no good reason, navigating ice and snow in the ugly Michigan weather and a million things in between. My muscles are constantly “ready,” meaning flexed and tight – requiring a ton of stretching, moving and working through that every day. As I write this, I feel like I am both complaining, and… I am acutely aware of the blessings that are mine, that CP for me, is not harder.

The level of severity for the 1 out of 400^th person who is born with CP is as varied as grains of sand. For some, it is “minimal,” though even minimal is a lot. For others, it is moderate and still others, having CP is severe, the most severe meaning a life without the ability to walk, talk or control your own body. With each level, there is also the possibility of cognitive impairments, all related to the amount of time a person’s brain is deprived of oxygen. The longer that time is, the more involved, impairment becomes.

Yes, I live with both gratitude for all the ways my body functions for me and the grief, anger and frustration that comes with having a life-long disability. I never want to take for granted all that I CAN do, yet, I am finally learning, that it is more than ok to care for the parts of my body, mind and heart that grow tired, endure pain and battle every single day, to live with CP this side of heaven.

As an adult with CP, I have not had a specific doctor who specifically works with the mechanisms of CP, how to manage that and ways to help with it. (At least, not until two years ago…)

Remember that statistic, as we go, 1 in 400 people are affected with CP. What that means in our world is that I don’t really ever “see” someone with CP, like mine. In fact, I don’t really see many. But that also means that for much of my existence as an adult, I’ve kind of been making it up as go. Please don’t misunderstand! I have an amazing support system of family, friends and medical professionals who whole-heartedly support me and my needs. But, having a medical professional who works specifically with CP and is up to date on medication, medical treatments and possible changes? That felt like searching for a unicorn….

As only God can do, I was speaking with a friend who referred me to a neuro psychologist for some testing for a client. It just so happened that the neuro-psychologist shared an office with her husband, a physiatrist. Months before, my physical therapist had asked me if I had ever been in touch with a physiatrist, a medical doctor who works specifically with pain, gait and muscle issues and so much more. What were the odds that in a passing conversation with my PT, a recommendation for a completely different doctor and her being married to and sharing office space with said physiatrist could lead me to exactly where I needed to be to manage CP better as an adult. There are no coincidences, my friends. It is ALL Jesus, always.

Because of so much medical complexity, past surgery trauma and genuine “white coat syndrome” that I still have, I went for that first appointment with Dr. Rush and promptly began crying when he walked into the room. I will not forget his kindness and understanding and even dry humor as he listened during that first appointment. I had come in with a torrent of emotion, fear and anxiety because it has been a long journey with CP. But I left that appointment with hope of relief in this adult with CP body. He was kind, so damn knowledgeable and confident there were things we could try for relief.

For the next year, he gained my trust, (no more tears,) always impressed me with his knowledge and care and each time had suggestions to assist me with living with CP. It was then he began talking about a baclofen pump, where this story began above…

I began taking oral baclofen in my twenties at the suggestion of a friend who is a quadriplegic. It was life changing for me, due to the electrifying muscle spasms that seem to overtake my body in the evening and overnight. For about 25 years. That medication has been a lifeline to me. And yet, there are still many nights that I wake screaming because the spasms literally feel like electric shocks, over and over.

Dr. Rush explained as talked again about the spasms, how an intrathecal baclofen pump worked.

Because my brain instantly thought, “I am not that severe, I don’t need to go to that extreme,” I probably dismissed Dr. Rush’s suggestion without a lot of consideration.

We’ve made due with adding some other medications, which have contributed to some weight gain, mental fogginess and though helpful, all oral, so probably not the most effective.

Fast forward to the beginning of this winter when the spasms began to increase again with a vengeance. I talked with sheer frustration again with Dr. Rush.

He was gentle but pointed with the realities of aging with CP, with his suggestions then I asked the magic question, “If you were me would you get a pump?”

“Stacy, I were you, I would’ve had it 20 years ago.” With that one sentence, Dr. Rush cut through my fears, insecurities and excuses. It was a sobering and clarity-giving moment.

I began the discussions with my husband and assuredly, did not have all the details right. Husband was fearful of surgery, spine issues and possible risks of having an artificial device implanted in my body. I loved him that much more for his love and concern. More conversation with our kids, friends and trusted wise counsel. I just couldn’t settle on a right answer…

Again, as only God can do, he placed the right person, right where I and he needed her to be.

I have for the last year been writing a bit for the Cerebral Palsy Foundation and am finding more connections there all the time. As I had been connecting with Jen for a while regarding my writing and other opportunities, it occurred to me that she would be a great resource about this decision.

In a very short time, she explained to me how the pump works for her grown son who also has CP, how the surgery was not the vision we had in our minds and how the relief is possible from the constant state of spasticity my muscles endure.

I cried tears of being understood, and the possibility of relief as she and I said goodbye that day. I continued conversations with the kids and that day even, Dr. Rush. I introduced him to hubby on the phone and he couldn’t have been more patient, explaining the process (again to me) to husband. Hubby and I chatted, pondered and prayed all through the day and by evening, ended feeling like this was the very next right thing in managing a lifetime with CP.

Two weeks ago, was a whirlwind of meetings with a neurosurgeon who will place a catheter in my spine that will be connected to a pump placed under my skin by my rib cage. It will deliver baclofen in a micro dose, directly to my spine, which ultimately is where those spasms originate.

After that meeting was another with Dr. Rush who as typical, is so patient and knowledgeable. It is hard to explain what those things mean to me in the medical realm. The best I can say is that as a kid, the surgeries and medical appointments happened to me, were exactly right, but were also traumatic in my abilities to understand at that time. This choice, feels like my adult self is showing up in my scared kids’ place and choosing this for myself.

Dr. Rush showed us an actual pump, looks like a gold hockey puck. It is hard to imagine how it will feel IN my body…

The next step was to have a lumbar puncture in which a radiologist took a bit of spinal fluid, inserted a small dose of baclofen into my spinal cord, like a pump will do and see how my body responded. This test dose is a necessary step to ensure the medication will work for my body, as well as an insurance requirement before putting the equivalent cost of a high-end Mercedes into my body.

Friday, husband and I arrived back at the hospital where I’d endured so much as a kid. Only this time, as a fully-capable adult. I’ve done so much work, processing, journaling and EMDR to get here. I am so proud of that, of me and of us for the healthy becoming required for me in living with this disability. It is part of why I am driven to help those who want to process trauma. If you can hang with the process, coming out on the other side of our traumas, experiences and things we’ve stored, is the greatest gift. There is nothing like the peace of being comfortable in your present skin. Doing the work does not fix the hard things we endure, but it does make us less afraid, more attune and alive in our present selves, at least in my experiences.

I had fantastic nurses, doctor and care during this test dose. I managed the nerves that inevitably rise when we are doing a big medical thing. I was able to speak for myself, honor the needs and fears I carry and be authentic. As we rolled down the hall, me in the gurney and Stephanie the nurse trying to chat to get my mind off the rolling, I had a wave of anxiety. I tried to be kind and gentle with myself and soon, we were in the room and I was rolling off the gurney to another table. I tuned all the voices and noises out, praying and feeling God’s presence in the room. A rough few pokes of Lidocaine, bits of jabbing pain, and suddenly, Stephanie and Mia (nurses) were helping me roll back on the gurney and we rolled back to my room.

“You need to lay flat on your back for two hours to avoid a spinal headache. You may or may not feel that baclofen working while you are here. If you aren’t sure if you are feeling it work, we will probably need to repeat it.” Um…no thanks! I laid still while hubby snoozed in the chair next to me, wondering, hoping and praying to feel some sort of relief. My feet carry the brunt of the muscle tightness sometimes, my feet and toes feeling clinched as tight as they can get while still trying to clinch more. As I laid there, I noticed first that my feet were relaxed. I tried to clinch my toes and I couldn’t! (What???)

As I lay there, the strangest sensations of loosening continued throughout my body. I couldn’t stop smiling. My breath came easier and the sighs of relief that my body emitted felt other-worldly. I told hubby and E as she arrived to keep us company that I truly, could not stop smiling.

I have often told people that I don’t know any different than this body. I have had some level of this my whole life. You learn to live with your level of normal, don’t we? But this relief? Well, I have begged God, pleaded, screamed, cried, agonized and come to acceptance that healing and relief this side of heaven were not to be for me. (And then probably the next day, begged, pleaded again – wash, rinse, repeat.) I think this is extremely normal when living with any sort of chronic condition. NO judgements! And, I think it’s extremely difficult even though, I am exceedingly happy with my life, not to feel the weight and difficulty of chronic pain.

This day, however, was nothing short of miraculous hope. Because of science and God-given abilities in the medical field, this relief, this peace that I’ve longed for was happening and within reach because of the “gold hockey-puck.” Suddenly, I could envision, days, weeks, maybe years, of diminished pain and spasticity. Unreal….

Over the next, nearly 24 hours, my body experienced the least amount of pain I’ve ever had. It was pure joy. Also, I will probably again, need to teach myself how to walk on muscles that have changed. But even that, makes me smile because, of course! If I can do that with less pain, NOT A PROBLEM!

Surgery is scheduled for February 24 and though my body is not excited about surgery, recovery and the logistics, the anticipation of how I felt for the last 24, compels me – February 24 cannot get here soon enough.

I am in wonder; I am at peace and I am filled with hope and potential like never before.

I am so grateful for my people, all of you. I am thankful for medical professionals, especially you are so scientifically skilled AND have the ability to be kind, empathetic and gentle. You are a gift.

I am beyond grateful for my family, who loves, supports and worries in the best possible ways. You all are my anchor. Most of all, I am thankful to my Jesus, my Savior who is always saving me in every way. He in all his goodness is always putting the path right, in spite of me. In spite of my doubts, screaming, pleading, anger and fear, he is always right, loving me and he is present.

Perhaps that sounds so easy for me to say. Perhaps you fight your own battles – as we all do, and you DON’T feel God’s presence. I get that, there have been so many times on my journey that I have felt like he utterly abandoned, rejected or just was simply ignoring my cries, anger, desperation and/or fear. All I can promise, is that he doesn’t, and won’t. It’s not in his nature.

Imagine the person who is the most for you; the person who has proven their love and steadfastness so much that you never doubt their presence and place in your life. Just for a minute, imagine that 100x stronger than how you feel it now…that’s Jesus, only never-ending.

I pray for peace, his presence and the feeling of hope and potential for us all. Even with today’s politics, all the terrible and awful we are assaulted with every day and the tsunami of pain and fear that threatens at any given moment. He is near, all shall be well. I pray that whatever battle you are facing and fighting, you have glimpses of miraculous hope. Don’t give up…

Both/And

Xoxo

Psalm 13