Not Rare, Nor Diseased

Rare Disease Day is the last day of February. Around that day a few people sent me messages wishing me a “Happy Rare Disease Day,” I appreciate the sentiment, but it’s uncalled for.

Although the media, even credible news outlets can mess it up.

Cerebral Palsy is not a disease.

It is a neuromuscular disability that effects movement, like motor skills.

It can also affect senses, like hearing and/or vision.

It is permanent, but symptoms can change.

It effects each individual that has it differently.

There are 4 main types of CP.

It can affect anywhere from 1-4 limbs.

There are treatments, but no known cure.

It is not rare.

The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.

It is the most common childhood disability.



It Takes A Village

I’m pretty sure almost everyone’s heard the saying “It takes a village to raise a child,” at least once in their lifetime.

Earlier this month I had to make a phone call. This wasn’t any typical call and it was meant to be anything but social.

Ever since Botox hit it big as a medical treatment (non cosmetic) it’s been circling my head like a bird. For the past two years the Botox discussion has becoming more frequent topic of my appointments. I’ll admit I was the first one to bring up the subject when it became an option, or I thought, now that someone else has been bringing it up I’ve been doing my homework on the subject and I’m more skeptical about it than ever before. I wanted to attempt to put the Botox question to rest once and for all so I made a phone call.

I don’t usually bring up my surgical history on a simple phone call but this was one of the exceptions. I knew I wouldn’t talk to my doctor personally without it and I wanted, and needed to speak to him personally. Of course the day I call he’s in surgery all day. Why do I always call offices on surgery days? You’d think by now I’d know to make some kind of chart to keep these things straight. I hate calling on surgery days because there’s a lesser chance of getting a call back without some kind of hassle. Most of you may not find this to be true and I’m happy that you have not had to encounter this; however I have found this to be true. Just my luck I guess. So I was pretty close to shocked when I got a call back that night.

Now I have to take a minute to explain my relationship with this particular doctor and what this has to do with anything else in my life, particularly the title of this post.
I’ve known Dr. L for over 20 years, basically my entire life for those of you keeping track. I don’t see him often, but when the shit hits the fan I often consider his opinion, whether he’s called or not. He’s basically like “The Godfather” of my medical life, although I’m pretty sure he’d be uncomfortable being called that. He’s basically the person who’s had the biggest impact on my life as I know it, parents not included. So his opinion on things that everyone has varying opinions on really matter to me. Not to mention I don’t want to do something that would do more harm than good.

Once I have him on the phone I forget my entire bit and ramble a little too much. He probably didn’t mind, or even notice, but I was mentally kicking myself. So I explain the situation to the best of my ability, which at the moment wasn’t anything close to my typical level of articulation.

He didn’t tell me what I wanted to hear but he told me what I needed to hear, which is just as good. The Botox decision is purely mine. He did remind me that it is a temporary treatment. When I said I am always looking for something permanent, O.K. so I pretty much blurted it out in an effort to get a more definite answer, he said I should look for a surgeon.

So I kind of got the answer I wanted to hear….
It’s kind of nice that he considers me to be “adult enough” to make my own decisions.
(That may not be how he intended things to go but that’s how I’m choosing to take it)

With business out of the way we moved on to other things. It was mostly me, but he went along with it. I’ll spare you of all of the conversation because most of you reading this don’t know my medical history, so this could be somewhat shocking. Also, I don’t want to violate some kind of privacy boundary between him and me. If you want to know more of the story, leave me a comment and I’ll write about it at a later date.

The thing about knowing someone for most of your life, without them being considered part of your family is they still have memories of you with their own special twist. You wouldn’t think an “outsider” would have one such memory never mind a few.

As he was telling me a story about myself as a toddler, one that I’d never heard before I might add, I have a funny thought. “It takes a village.”

Anyone who’s ever spent any significant time around children; parents, teachers, nannies, etc, will tell you that it does take a village to raise a child, or some sort of communication and cooperation with everyone involved in the child’s development, at least. I hard to learn this first hand, I’ve sometimes called it “the hard way,” working in childcare. Whenever someone asks me what the hardest part of the job was I will, almost always, say the parents. The families I served were pretty amazing, but it wasn’t always easy building a relationship with them. It’s like friendships; some are easier to build than others.

I’ve always known that Dr. L played an important role in my life. I just didn’t realize how much until I talked to him again and he just happened to share something more personal, it really was a cute story and it would be just as cute even if it wasn’t about me. He’s part of the “village” that helped raise me and become who I am today. It’s sort of unreal to be able to admit that. A few times I’ve had the thought of what would have happened to me without him. It’s true we could’ve found someone else. But then would things turn out as well? How many people can point to one person and say they’ve probably had the biggest impact on their life? I don’t think the number is really that high, although some might disagree. I think I’m one of the true people that can point to one person and say that without them things would not be the same.

Realizing this connection gives me hope that I’ve had some kind of impact on the “My Kids.” I know I did, but it’s mostly due to the feedback I got from coworkers and parents. I wonder if they’ll remember me when they get to be my age, and I doubt I’m alone in this situation.

It’s really true what they say, you never know what kind of impact you’re going to leave on someone, especially a kid. It really is an amazing thing.

I’m so proud to be part of hundreds of “villages.” I hope I served them well.

*A similar version of this post was written on October 31, 2008

If It’s Broke, Fix It

Of all the things that people get wrong about CP the one that bothers me the most is that it’s a kids condition. When CP kids grow up they become CP adults. There is no magic pill. We don’t fall into a pit, so people can forget about us.

We just grow up, one of the many things we have in common with our non-special counterparts.

The thing is medicine has not exactly grown with us. Things are moving along. Change should be coming, but I wish it was here now. I wonder what it would look like. I know what I’d want it to look like, so I’d like to think some of my thoughts will make it to the future of medical care.

For the most part I still see specialists with “pediatric” in their specialty. Some are for convenience. Others, because no one else will see me, or I can tell they don’t know what they’re doing. Who wants to see someone who doesn’t know what they’re doing? So my medical needs are met by what I can find & who is willing to help.

Luckily, I have a pretty great team around me. If things come up short, which they often do, we can make something work out. It helps that almost everyone is always up for a challenge, because there have been more than a few in the last few years.

Make no mistake there is more in common between individuals with CP and those without than one would think. But when you get down to the details it would be nice to be treated more individually, yet as a group, than we are now.

Part of the problem does lie with the patients themselves. By the age of 14 or so medical professions begin to back off & having been under their care of so long it’s only natural to want to rebel a little, or a lot. I’ve wondered that if we were better at caring for ourselves would we already have the needed changes.

Doctors are as much at fault as their patients. Most don’t know what to do. I can out on one hand the number of medical professions who even know of an adult with CP (outside of orthopedic & neurology specialties). There were times in the past when I did honestly wonder if I’d ever know of another adult with CP, never mind meet them.

Even the doctors who focus on CP adults admit the system has failed, at least the good ones do. They’re trying to do the best they can, but they can’t do it alone.

The system has its issues but it’s not too late to fix them.

*A similar version of this post first appeared on an old blog, as part of the Cerebral Palsy Connection, on March 1, 2012

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

Normal Is Nice

Fall means a season of follow ups, and usually a mix of emotions.

The emotions are still there, but I’ll get to that later, or not.

The follow ups are still there, and they will be for the foreseeable future, but they’re different.

I was sitting in an exam room waiting, actually I was staring at the sink, when I thought of a poem.


Yes, I was waiting a long time. Yes, I do get philosophical the longer I wait.

I remembered waiting to be told I had healed enough that I could stand up, and then feeling pain shoot up my legs as they took on my body weight. It was pain, the very reason why I put myself though all of this, but it was different pain, and I was happy about it.

As the weeks of rehab turned into months my feelings towards standing went from happiness to anger, as happened in every stage of my recovery process.

Every follow up I’d wait, and wish someone would find something that would make me better, a more improved version, faster.

That never happened, at least not yet. And no one ever declared me “recovered,” not officially, that came with some self-acceptance.

I sat in the exam room, again, but with a different expectation.

The expectation of normal.

“Normal is nice,” I kept thinking.

And it was, the follow up went as I expected, and I wasn’t upset or overly happy over it.

It was normal, and it felt nice, to be OK with this (not so) new phase of my life.

Regardless of how you feel about standing, normal is a nice place to be.

Defining normal, that’s the hard part.

SDR: Thoughts 30 Years Later

I kept telling my family that I couldn’t wait until I’m 33 years old.

And it has nothing to do with it being referred to as your “Jesus Year” in some circles.

I couldn’t wait because I’m be able to say “My SDR was 30 years ago.” For one thing it makes the math easier for me and the resident(s).

Because when I give them the year I had my SDR or how old I was when I had it a look comes over their face like I’ve just asked, Train A, traveling 70 miles per hour (mph), leaves Westford heading toward Eastford, 260 miles away. At the same time Train B, traveling 60 mph, leaves Eastford heading toward Westford. When do the two trains meet? How far from each city do they meet?”

I should also tell you that I often have to then explain what an SDR (short for Selective Dorsal Rhizotomy) is because they aren’t as popular as they used to be (due in part to the Intrathecal Baclofen Pump, I think). It’s funny because I didn’t know what it was for a long time, even thought I had it done, so I’ve had to educate myself because I realized I had to educate others. I even have a short description of every surgery I’ve had with my list of pervious surgeries. 1) To give people a heads up while they’re reviewing my records before an appointment. 2) I can’t spell Rhizotomy (neither can spell check).

I have mixed feeling about getting old, but this is one thing I’m looking forward to more than others.

Here are some basics:

I was 3. I remember it being around Halloween because my grandma decorated my room which included a very large, to a 3-year-old, Happy Halloween banner. My room had wallpaper with clowns on it, which is probably one reason why I fear clowns, practically clowns in hospitals.

 I don’t remember much about that but the surgeon who performed my surgery told me that he got a call from my mom once I was home asking what he had done because she found me either sitting on top of our piano or I had something in my hands that was previously on top of the piano and when she asked me about it my answer was “I climbed.”

It was done at local hospital by a surgeon who had just arrived. I was his first patient. We didn’t go anywhere else because it was the best fit for me and my family.

I was told I was getting “new legs” so when I looked down and saw my “old legs” still attached, because who wouldn’t want to see what new legs on your body looked like, I was confused. I was even more confused when people would come to visit and look at my back

I had PT Monday-Friday for a year at the outpatient facility associated with the hospital where my SDR was done, as well as a home program. I had OT as well but it wasn’t as intense as PT. Once the post-operative obligations and goals were met I went back to my normal PT routine of twice a week at a private PT practice closer to home.

I remember the first time I stood up and saying that my legs felt like Jell-O would be a bit of an understatement.

What I Thought I Knew Then:

I thought I was getting new legs, literally. It’s kind of weird how comfortable I was with the idea of having a different set of legs attached to my body. I mean, I didn’t wonder where they were going to get the new legs from?

I thought what was done was done. My SDR left me with decreased sensation in my legs and toes and some decreased or no movement particularly in my feet and toes. After my last surgery (fall ’09) I began having some feeling in my thighs and just last year I started to experience intermittent sensation in some of my toes. I don’t know how this happened or how common it is but it’s been interesting.

I thought everyone knew what was happening. It wasn’t until people with cameras started taking pictures of me during PT and asking my mom questions that I wondered what the big deal was. What I didn’t know then was that SDR was relatively new and I was the 1st patent in the state to undergo SDR surgery.

What I See In Retrospect 30 Years Later:

Would I have it done if it were my choice? I’d like to say “Yes” because I know my life would be drastically different. But in the last few years I’ve really started to question and think about what my life might’ve looked like if I hadn’t had an SDR. I don’t hold any bad feelings towards anyone but I do wonder, especially since my SDR was more extensive (from L1-S2) than what’s being done now.

I wouldn’t be as independent as I am now without it. I use a wheelchair on occasion for mobility, but I probably would be a full-time wheelchair user without it, and would probably need to rely on others more for care. In my opinion people focus too much on the ability to walk after SDR. Walking in itself does not make a life more meaningful. As I’ve said before and I’ll say it again, using a wheelchair has opened up my world more than it would be if I used crutches or used no mobility aids at all.

There you have it, my SDR experience decades after the fact, but if I’ve missed something you’re curious about let me know.

*A similar version of this post was published on March 7, 2016

World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

Review Session

I’ve been riffling through my past writings, for various reasons. I can’t say it’s been all fun rereading everything but it has been interesting.


Two years ago I was pre-surgery*

One year ago I was post 1 round of Botox*

*I did indeed have to search the archives to remember this

This year the MDs & Ph.D.s are pretty much hands off.

Progress indeed.

Things aren’t prefect.

But a CP body isn’t your typical definition of perfect.

“It doesn’t get easier or harder. It just gets different.”

The idealistic picture I had in my mind two years ago is a distant memory. As in so distant I barely remember the picture, other than I had one.

The real picture is coming into focus.

I’m sure there are things that could use fixing. In fact I know there are. They’ve just been put in the “wait and see” category, and it looks like they’ll be staying there.

Do I want them fixed?
Of course.
But I don’t know how much difference it’ll make overall.

Plus I’m in pretty awesome physical shape.
Going in for more work would mean “tearing down” my hard work.

That’s the biggest negative for me.
Further improvement would come at a cost.

I’m not 100% with how things are.
I’ve made that pretty clear to a lot of people.

But who is really, truly, honestly happy with themselves 100%?

Even if I can still see room for improvement that doesn’t mean I have to bow to the surgical gods for it.

A big revelation for me I admit.

I can manage my own trajectory.
Modern medicine will always be there.

*A similar version of this post was written on September 2, 2011

On 2 Years

8 years ago my life was at a turning point in my life. I had been in pain for so long and I couldn’t take it anymore. I had to do something about it. 2 years out I wrote about the progress after the turn. I thought I would see my life more differently 8 years after than I would 2 years later, although there are a few things that are different now the general sentiment is pretty much the same.


A lot of people see scars as defects, at least detection of defects.
I look down at my scars and see differently.

Hard work.

Just to name a few.

It took a long time to even get to that point 2 years ago.
Lucky for me there are times I’m like a dog with a bone.
Although I did feel like quitting plenty of times.

All I wanted to do was be who I was.
Rewind the clock.
Not be in constant pain.

It didn’t even occur to me that a fixed body would mean possibility & ability to actually become better. Even when the idea was presented to me I had my doubts, actually I didn’t think it was possible, just someone being hopelessly optimistic.

To borrow a line from Soul Surfer, “I don’t want easy, just possible.”
Well someone did, it just wasn’t me.
I was just waiting until I felt back to normal.

But when I wasn’t paying attention I was getting better.

Climbing up stairs without pulling myself up or using a handrail
Stepping off a curb
Being able to dress myself without falling over
Walking backwards & sideways
Stopping at a street corner before crossing
Finally learning to walk with my heals with some consistency

All things most people without much thought at all.

It took a lot to get this far:

1 failed Baclofen trial
10 hours of surgery
Months of PT
Months of Pilates
Self-motivated pool sessions
Weekly one on one gym sessions
2 rounds of Botox

But I did it.

Everyone kept telling me the hard part was going to come after. I have to say they were right, as I’ve said; two years ago, the hardest thing I had to do was take a 10 nap while everyone else either worked or waited on me.

“We’re done,” meant “Your turn kid.”

But like the getting better part, the hard part happened when I wasn’t looking.

As Hemmingway wrote in, The Sun Also Rises, “Gradually, then suddenly.”

If I did this, what else can I do?

*A similar version of this post was written on September 13, 2011

Brain Matter(s)

I remember my 1st meeting with my physiatrist. I didn’t want to be there. I had already seen a physiatrist I liked. I was only there because she wanted me to consider having him take me as a patient instead, but he was on time (not doctor time, actual people time) and he seemed to wanted to be interested in all of me, not just parts.

After his “litany of questions” (which is really what he called it) he said something that caught me off guard.

“Now if I were to look at a CT scan of your brain I guess I would probably see……”

I never put much thought into what Cerebral Palsy had done to my brain, mainly because the focus had always been on my muscles & bones, I wasn’t diagnosed with a learning disability until my early 20s & even then I didn’t think it was CP related, learning disabilities are in my family so I saw it as something that made me more “alike” than different.”

Admitting that this postulating what my brain looked like was what sealed the deal in agreeing to be under his care would be a lie, but it did play a part in my decision.

I haven’t had many CT scans in my life, and only one of my head, but they were looking at my sinuses, not my brain. Intrigued I asked if he would be ordering a CT scan of my brain, adding that I wanted to see it for myself.



Well OK then.

For the record, I still want to see what my brain actually looks like.

It’s hard to understand a condition that you can’t always see the root cause of, never mind try explaining it to anyone else, no matter how educated you are on the subject.

People like to be able to see things, to touch them, hear them, anything tactile really.

Cerebral Palsy isn’t like that, instead it’s like trying to find the leak in a pipe. You have a puddle on the floor from the water dripping from the ceiling but you don’t really know where the water is coming from, except with CP you may never be able to actually see the true source of the leak.