The Boxing Match

When I first began writing this blog about my journey with cervical dystonia, my goal was to write one post a week.  But as you have learned, the battles I fight on a daily basis with my neurological movement disorder make it impossible to plan ahead.  I have to live every moment as it occurs, since I never know what my health has in store for me.

For people diagnosed with cervical dystonia, one of the few ways of managing our pain and spasms is to have a large dosage of a prescribed toxin injected into the spasming muscles.  For me, the poison (not of choice) is Botox, so when I go in to get my injections, I never quite know what to expect.  Sure, I know I will be in pain throughout the procedure as I feel the Botox sear through my body, over and over and over again.  And I know Dr. D. will sit behind me, carefully touching the back side of my body, in search of the spasms he will soon be attacking as he gently prepares me for each one, “Poke.”  The louder the static is on the attached machine, the more confident we are that a needle was inserted in the right place.  We can actually hear my muscles oscillating!  Lucky for him, he doesn’t have to feel them “dancing” too.  The average number of injections I receive during one visit every 3 months is twenty, affecting everything from my lower back to the top of my head.  My doctor knows I’m joking when I refer to his office as “the torture chamber”, but in many respects, that’s exactly how it feels.  Fortunately, Dr. D makes me laugh, but I dread these appointments because they’re so painful. Yet, the suffering from the inoculations doesn’t end when I walk out of his office.

For the next two weeks, my body is at war with itself, which is why I can’t see my physical therapist during that time.  The way she explains it, the boxer in the one corner knows that poison shouldn’t be entering my body so it fights to knock it down and eject it from the ring.  At the same time, the Botox moves towards its opponent to duke it out because its job is to calm my muscles so they don’t spasm as much.  As a result, going to therapy would be a waste of time.  My PT would be the third boxer entering the ring, and she already knows she’s going to lose.

I’ve had mixed results with these injections, but for the most part, they haven’t been very successful in managing my pain.  Then why do I keep getting them?  I asked my doctor that very question two weeks ago when I had my last round of injections.  Just a few days before my appointment, I had heard about a few other toxins that people in my Dystonia support group had used and gotten some relief from.  After 4 1/2 years, I needed to initiate the discussion to find out if there was another medication I would respond better to, something that would provide relief from my spasms and pain, even if only for a short while.

In order to find out if I should be injected with something else, my doctor ran a test called an FTAT where he injected a small amount of Botox above my right eye.  My left eyebrow was the control in this experiment.  It was my job to look in the mirror for a week and raise my eyebrows to see if the right one weakened.  Within two days, I saw many lines appear above my left eyebrow but only one line above my right, meaning I was not immune to the Botox.  If I had been, that would have ruled out using any number of toxins within that class of medications.  So even though that question had been answered, it led to the next item up for bid within those first two weeks, the side effects.

A few days after my injections, I was on a plane to Birmingham, Alabama, for a civil rights conference and the 50th anniversary of the March on Selma.  Having just gotten a large dose of poison introduced into my bloodstream, I knew I would be feeling the battle within me.  While I still made sure to care for myself by sitting against a wall when I needed to, lying down every chance I had, and having my neck pillow attached to me at all times, I knew I had to persevere, or I would miss this once-in-a-lifetime opportunity I was about to experience with 30 other members of my Unitarian Universalist congregation (an experience that will definitely be the topic of a later post).

Having only been gone for three days, I still knew my body would need some time to recover from the trip.  However, I was not prepared for the side effects I began to feel just a day after my return.  When I took a bath, I discovered that I couldn’t lift my head out of the tub.  This struggle existed any time I laid down.  When your head literally feels like you’re carrying one hundred pounds of bricks on it, it’s time to call the doctor.  He told me what I unfortunately already knew.  I will continue to have this side effect until the toxin begins to leave my body, a process that slowly takes place over three months.  In the meantime, though, I’ve had to figure out the best strategy for lifting myself up.  The secret to my success has been rolling over on my side so I can push myself up with my arms.  All that work just to lift my head!  Oye!

The other side effect I noticed was that I was dropping things.  If only I’d found this out before I picked my I-Pad up off the stove.  It fell onto the floor and shattered into hundreds of pieces as you’ll see below.  Not only did the glass shatter, but some of the black frame pieces broke off as well.

image

While the glass can be fixed, albeit an expensive one for this gal on disability, I realized that I cannot.  I will always have those black frame pieces that are missing, forming jagged edges on the corners of my device, making it impossible to fully protect my body from harm.   Unless someone is wiling to fund the research for a cure, there will always be a boxing match taking place in my body, whether it be in my brain, at various points between my head and lower back, or in the form of emotional struggles (another topic worthy of its own post).  I hope that dream will come true during my lifetime.  But as I choose to live in the present moment, I will continue to learn how to live the best life possible now, making the most out of each and every day.

My Hope:  Over the past few months, I have also noticed an increasing loss of balance, causing me to stumble into things, trip and/or fall.  I can’t tell you how many times I have fallen or tripped in public, and no one has walked over to help me or ask if I’m okay.  I’ve gotten far beyond the stage of embarrassment and advanced to the stage of frustration because no one has cared enough to help.

I hope that the next time you see someone stumble or fall, you will help them, even if it’s a stranger.  Not because they may have a neurological movement disorder like me but because it’s the compassionate thing to do.  Reach out your hand to pull that person up.  Use your words to ask if that person is okay.  Or lead that person to a safe place to sit to make sure he/she isn’t injured.  It’s so simple to show you care, and I’m positive this is what you would want if you were in that person’s shoes.  We all deserve to be lifted up, and it’s up to all of us to make that happen.

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10 thoughts on “The Boxing Match

  1. Words fail regularly, but right now they fail particularly. The word ‘cascade’ rises to mind. And angry wonder. No one offered to help–that stupefies me, but then I haven’t always been available or helpful over the ether either. My hope is that you will let me know when you fall. I have an iPad that I would happily lend you. I can share and I can care. That is my hope if you need that.

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    1. Thanks, T. I got the glass on my I-Pad replaced so all is good, $130 later, right? And thanks for extending your hopes to me. They mean a lot.

      During my first full year of teaching after I was diagnosed with cervical dystonia, I was with my 3rd and 4th graders outside at recess. I tripped and fell, and I could see that a group of girls from my class saw it. But not one person came over to see if I was okay. Later that day, I spoke with my class about what a person should do if they see someone get hurt, no matter where that person is or how old they are. It appears this compassion needs to be taught, because I certainly don’t experience it around adults unless it’s people I know. It’s sad, but as teachers, we can teach our students what caring and compassion look like so they can be the ones to help us up and model it for others.

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  2. There is so much grace, elegance, and dignity in this post, it’s humbling. You are remarkable in all ways: so insightful and courageous, resilient and motivational. No matter how many ignorant people you may encounter here and there, you are deeply loved, appreciated, and admired. You have an army of friends and supporters. Imagine yourself surrounded by all of us and protecting you from ignorance and silliness. Keep on shining on!

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    1. Thanks, AB. One thing I hope people understand is that we want to extend a hand to people we don’t even know who may fall (either literally or figuratively). Rather than pretend we didn’t see someone get hurt, we can at the very least ask if he/she is okay.

      During my first full year of teaching after I was diagnosed with cervical dystonia, I was with my 3rd and 4th graders outside at recess. I tripped and fell, and I could see that a group of girls from my class saw it happen. But not one of them came over to see if I was okay. Later that day, I spoke with my class about what a person should do if they see someone get hurt, no matter who they are or how old they are. It appears this compassion needs to be taught, because I certainly don’t experience it around adults unless it’s people I know (as you recognized). It’s sad, but as teachers, we can teach our students what caring and compassion look like so they can be the ones to help people up who need it and model it for others.

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  3. The image of grace comes to my mind too. It seems that the more you box with these physical challenges the more grace rises up in you. Sending love and thanks from Texas! Let’s schedule talk time soon xox

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  4. I was wondering if you email your story and how you got diagnosed. I had a horrible attack just last week; I thought I was dying. I have always had shaky hands and a kind of cramping type spasm in my right hand and forearm but nothing like now. Since Friday I can’t stop it at all its in my upper back, shoulders, right arm, and hand. Sometimes I can try to hold back for a few minutes and other times it seems to be gone for a little bit and BOOM I’m right back at it. I guess what I am asking is does this sound like dystonia? I seen a neurologist today and I explain I felt this was just anxity from my disability hearing. (I think I was denied do to my age) if you are wondering I have bone problems and I am 4 surgeries from a release to work. I already have enough problems and they just confirmed copd after a ton of lung infections. I hope to work one day and I am terrified because both doctors today told me this never goes away and can get worse?! I do not understand how it can be any worse or how I suddenly have this! I need to understand if this has happened to others.

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    1. So sorry to hear about your health issues. It would be difficult for me to know if yours is dystonia or not. If you’re having uncontrollable spasming and pulling of muscles with lots of pain, it could be. It’s different for everyone. For me, I was in my late 30s and my dystonia just started one day with my neck spasming, without any warning. An MRI will confirm a diagnosis of dystonia, which is what your neurologist should be having you do. The Dystonia Foundation is a good start as an online website, and they can give you ideas for doctors. That’s how I found mine. Whatever you do, continue to advocate for yourself. It is true that dystonia never goes away, which is why I’m writing this blog to educate people about my journey. If enough people learn about it, hopefully one day people will commit to giving money to find a cure.

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      1. Thank you for replying! I asked for a MRI I go tomorrow but I was told because they think it is genetic from my fathers Tourette’s, they don’t know that it will show up. They said my medical history and blood work from last year prove it has been lingering and anxiety just helped it show its ugly head. However, they are doing the MRI because I was very adamant and to rule out any other cause. I am hoping for the best but the neurologist said it would be best to work on acceptance through therapy. I do have a ton of pain it feels like I’ve pull every muscle in my upper back, shoulders, arms, neck and at this point I am feeling it on the top of my chest and sides. Anyway, sorry for the long posts but so far your the only person to respond and I guess I just needed to vent so thank you that!

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      2. No need to apologize! I’m happy to see that someone found my blog who feels safe to share her own experiences. Good for you about being a staunch advocate for yourself! I’m not sure how much of my blog you’ve read, but I do see a talk therapist, in addition to a physical therapist. Can I ask where you are from? It took me 5 years to find a support group that already existed in Minneapolis, and I’m grateful for finding it. I just wish my doctor had told me about it when I asked. It seems like you just have to keep asking for resources and keep asking questions, and one day you’ll ask the right person who has an answer. That’s been my experience, albeit a difficult one. Thinking of you and sending you healing thoughts. For me, the worst of it was at the beginning. I hope it’s that way for you too, so that what you’re going through now will make the rest of your time with your diagnosis just a little more manageable (whatever that diagnosis might be). Keep me posted!

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