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.

No

Why?

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.

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

2016-11-25

Read Jessica’s full post.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

A CP Glossary

Being a minority of a minority people come to me all the time for advice, suggestions, etc. I know a lot about CP because I’ve sought it out, partly because people were seeing me as some sort of expert, but I’m not really. It’s hard to boil everything down to one page for the newly diagnosed when Cerebral Palsy is also unique to the individual. However, I received a comment to create a glossary for readers of terms that I often will use an acronym rather than spell out. I’m sure I’m forgetting a lot of them but here are the very basics.

Cerebral Palsy Related Terms

CP- Cerebral Palsy

GMFCS- Gross Motor Function Classification System

SDR- Selective Dorsal Rhizotomy

PT- Physical Therapy

OT- Occupational Therapy

ST- Speech Therapy

SpEd- Special Education

IEP/504- Individual Education Plan

Physiatry (or PM&R)- A specialist of non-surgical physical medicine for people who have been disabled

Orthotist- A maker/fitter of orthotics (bracing)

AFO- Ankle Foot Orthotics

KAFO- Knee Ankle Foot Orthotics

SMO- Supra Malleolar Orthosis

DAFO- Dynamic Ankle Foot Orthotics

Monoplegia- One limb effected

Hemiplegia- One side of the body, usually two limbs, are effected

Quadriplegia- Effects all four limbs of the body

Diplegia-Effects the lower body

Triplegia- Effects three limbs of the body

SLP- Speech Language Pathologist

AAC- Augmentative & Alternative Communication

Other Useful Terms

CF- Cystic Fibrosis

SB- Spina Bifida

DS- Down Syndrome

LD- Learning Disability

EDS- Ehlers–Danlos Syndrome

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Changing The Healthcare Landscape

Asking a professional patient to name one thing they’d like to change about the current healthcare landscape can be like pulling the pin on one big grievance grenade.

Although I would like more of a community for people over the age of 18 with Cerebral Palsy I’m going to go with something more general and seemingly smaller, but it is one of my biggest frustrations.

Office staff.

There’s the Joint Commission for healthcare organizations.

There’s standards for doctors.

And nurses.

Why not office staff?

They make offices run. They’re invaluable people.

Some know this and use this to their advantage, others don’t seem to have a clue, or maybe they just don’t care.

I’m not saying I’ve left the care of a healthcare provider because of their office staff, but I have thought about it, more than once.

I think maybe there will be a time when that will happen, it just hasn’t happened yet.

If I could change one thing about the healthcare landscape right now, it would be to have some sort of organization that handles the oversight of the assistants of healthcare providers, because although they aren’t in themselves providers they do play a major part in patient care.

They aren’t just handling files and scheduling appointments. They’re handling a person’s life, especially if it’s someone who has a disability or chronic illness.

They aren’t just dealing with annoying people. They can be the lifeline between provider and patient.

I don’t need someone who gets over involved in my care, blurring the lines of professionalism but someone who at least attempt to acknowledge that I can’t just drop everything for an appointment.

Simply put, someone who reads all the information put in front of them before scheduling an appointment (for example).

When someone is rude, or downright mean or neglectful, I wish there was someone, someplace, to report them to. It isn’t a position with minimal consequences if mistakes are made. It can’t be “just a job,” when you’re working alongside people who hold the lives of others in their own hands.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Highlights Of Activism

Being an activist can be a thankless job. Sometimes it can feel like you’re doing a lot of work for very little return. Many activists spend hours upon hours, of their free time, pouring themselves into projects and passions for no money.

I fell into the life of an activist completely by accident, but I stayed in it because of passion I have for it.

A friend of mine had to write a paper, and decided that I should be the main subject. I wasn’t expecting anything to come of it, but I did ask for a copy.

During a clinic visit I happened to mention the paper to someone and they asked if they could read it. I’m sure more than just that one person read it because during the visit after a few people seemed to know about it.

I was asked to speak at the next conference, and that started it all.

I knew there wasn’t a lot of information out there about people like me for people like me but I was hoping someone had it.

In reality, no one has “it.”

People have pieces, but even when you put all the pieces together there’s not a whole picture.

For a disability that’s been around for centuries people, doctors included, are just getting to the point where adults with CP are being recognized.

We haven’t been able to get adequate medical care, even if we are disabled enough, because there are few medical studies for the demographic.

A few years ago, there were no studies, at least not reliable ones.

There’s progress.

It’s just really slow.

There has been no one highlight of this journey because it seems like everything is a highlight in some respect. Although it can be a thankless job when the “thank you”s do come it’s pretty awesome, they make it all worth it.

It also helps to take the long view, seeing the good that’s done as a whole, rather than seeking out short term goals, getting what you want/need with little regard for the whole.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Please Get Out Of My Kitchen

I was supposed to write an open letter to my worst (or best) healthcare provider but I’m going to do something a little different for two reasons (1) it’s been an interesting few weeks with my and various provider offices and (2) I can’t find the post I thought I had already written on the subject.

Instead I kept coming across a different post that expresses a similar sentiment but better than I could have done in letter form (at least that’s what I think).

I wrote this after yet another appointment that left me frustrated and defeated. I was also somewhat younger than I am now, yet I don’t think I would’ve done a thing differently if I was in the same situation now (although I don’t think I would’ve had the choice either).

I was still months away from one of the biggest days of my life (so far) after waiting months to just to get to the point where I was months away from one of the biggest days of my life. It wouldn’t be an understatement to say that the waiting had pretty much consumed my life.

Looking back on this, since I have a lot of it in writing, I can’t believe I actually lived through this, and I mean that literally. You know the saying, “when you get to the end of your rope tie a knot and hang on”? The knot was getting loose.
____________________________

Technically I’m still under the care of two surgeons and technically two will be performing my surgery, but I haven’t met that second guy yet. Although I do consider one mine and the other just an extra opinion, and no I won’t say who is who, mamma didn’t raise no dummy.

Plans for surgery are still full speed ahead, although not necessarily very quickly.

Even though the plan hasn’t changed I still have plenty of time to get more opinions on the subject, whether I like them or not.

I recently went back to the surgeon that wanted a lock strap put on my AFO because he thought it would help my crouch, just to see how I would like it (I hated it, and so did everyone else, except him). We had an interesting discussion. Now he says he would do surgery, but not to the extent I’m planning on. He told me it’s basically my decision, but he would only do surgery on my right side, because the left side doesn’t look bad to him (even though test/studies say otherwise).

He also expressed concern about my age (AGAIN!). In case any of you are wondering 25 in the CP world is pretty much the equivalent of retirement to a nursing home.

How the conversation usually goes:

“You’re not a kid anymore.”

“I know.”

How I’d like the conversation to go:

“You’re not a kid anymore.”

“I know I’m not a spring chicken, but can we please get past that.”

“Sure.”

Is that so hard?

At least Dr. who-I-hope-will-do-my-surgery-says, “You’re older than the oldest patients that have had this, but only a little.”

O.K. not the most positive thing, but still more positive than what I usually hear from other doctors. I’ve also heard, “I’d like to help you, but I don’t see anyone over fourteen,” of course this was after I’d been in his office for over an hour. Nice right?
(Although I do like the guy so if you’re in the area and need an orthopod for your kid let me know)

Dr. “You-know-you’re-not-a-kid” also expressed concern that it would be a long recovery and the surgery itself would be fun for him to do but rather painful for me. (Because I wouldn’t think of such things on my own, and I haven’t thought of that for months) He also said I’d be “stuck here” for a while so if I wanted to go away again that would be out of the question. Recovery would be twice as long, 12 months instead of 6. He finished with, “If you do this, this will probably be it for you.”

I don’t think I need to go into how much is wrong with those statements from my point of few, but I want to anyway.

1) I’m already in constant pain so intensifying it for a while is worth is if there’s even a chance I could be in less pain, or pain free, once recovered.

2) I’ve thought about how hard and painful recovery is going to be. I’m not stupid, Nor am I afraid of pain, surgery, or intensive PT. I’ve done it before and I can do it again. I retained my entire body to do things people take for granted at 3. I think I can handle it at 25.

3) I want to do this so I have a chance at going away again, and hopefully out of the country at that. I’d rather be “stuck here” for a while instead of “stuck in a wheelchair” in five years.

4) I feel so bad now there a good chance I’ll feel better sooner than a full recovery of 12 months. There’s a reason why it’s a projected 12 months and not a definite 12 months. He of all people should know since I recovered faster from my last surgery faster than he anticipated.

5) Let’s let advances in medical science and I decide what’s “it” for me, thanks.

But it’s in my head now, should I just have surgery on my right side? The right needs more work anyway. I might just end up needing to have the same thing done on the left anyway. Should I take the risk of less?

My first instinct is to just have it all done at once and rebuild. It makes more sense and I’d rather do everything so we don’t need to go back and fix what we should have the first time. But now the other thought is there.

In addition to this new opinion, or rather changed opinion (?). I still have to get a second opinion, at the request of the surgeon who I’d like to perform my surgery. So I have one more opinion coming my way, at least.

I’m slowly coming to terms with the fact that my surgery is scheduled for fall. Actually I might even be starting to see this as the best thing. I realized I don’t want to be in the hospital in the summer, either type of hospital. I don’t want to be home on the couch without having the option to go out and enjoy the weather either. So if you remove the summer months from the calendar, that makes the time frame more manageable. Granted my thought process might chance in 5 minutes, as it usually done.

Have you ever heard the saying, “Too many cooks in the kitchen?” I’ve officially reached the point where I have too many cooks, and I’m the kitchen.

I have just one thing to say GET. OUT. & SHUT. UP.

*A similar version of this post was written on March 20, 2009

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

The Other Kind Of D-Day

Here’s a thing about having Cerebral Palsy, most of us don’t remember our own personal “D-Day” (otherwise known as the day we received our diagnosis). CP is typically diagnosed in infancy or early childhood. Therefore, it’s rare anyone remembers their actual diagnosis.

Having CP (or a similar disability) it’s not D-Day that gets you, it’s the acceptance process, which has not clear beginning or end for most people. It can be a daily thing, or not.

Plus CP is unique to the individual so it’s pretty difficult, if not impossible, to predict what a person’s life will be like as they age with CP (plus there are very few studies that deal with people over the age of 18 with CP).

A few years ago, I was asked to write a letter to my younger self since the prompt for today was to write a letter to ourselves on “D-Day” I thought I’d look back on the first letter and see what still holds true to life with CP, even if it has more to do with acceptance & advice.

Dear Self,
You were not dreaming when you opened your report card first quarter of freshman year and realized that you FINALLY made the honor roll; just when you stopped trying and were going to a school that didn’t believe in the honor roll. Apparently, you’re going to take the “grades aren’t the end all and be all” approach right up to the line you promised yourself you’d never cross again. You should try harder, at least turn your assignments in (on time, or at all).

Pretty soon you’re going to have a conversation with your best friend that will make you laugh. What you really should’ve done is seized the opportunity for yourself. It’s not awesome when you know the administration is probably using you to help the school’s recruitment efforts without asking you first. But you shouldn’t have laughed it off so easily. Instead you should’ve looked for the potential opportunity in it. Who cares if you’ll only go to classes on average of 4 days a week your senior year?

You’ll carry the emotional scars from middle school with you forever, but you’ll continue to reconnect with grade school friends and realize you’re worth more than the girl piranhas gave you credit for. The good news is you’ll rarely ever see them again and when you do their lives look far from fantastic. Feel free to mentally gloat for a few minutes, you’ve earned it.

Also, you’re a little bit of a nerd. Own it. You’re with the free thinkers now, not the cookie cutter (alleged) “good Catholic girls.”

Having a gym locker once a year isn’t going to be as great as you think it’ll be. You’ll never get it open yourself. It’s not like you’ll have a lot of books to carry around anyway.

You’ve figured out by now that your mom went overboard requesting accommodations for you, and you’ve ditched them on your own. Luckily no one will press you on it since everyone (with the exception of the administration during open houses) sees you as typical and capable. Enjoy the feeling while you can, because it won’t last forever. In fact, your first year of college with feel like you’ve gone back to middle school.

Speaking of college, it won’t exactly turn out like you’re thinking but it will be even better. It’ll just have a rough start. You’ll just have to wait it out because you wouldn’t wish it to go any other way when you look back on it (speaking as your older self).

You’re already feeling the effects of “old age,” or so you think. It’s not normal to ice your knees every night when “all” you’ve done is go to school. I wish I could give you advice on how to change that sooner but I know you won’t listen either way. Luckily for you things turn around and you reap the benefits for years. So really things work out for the best in the end.

Finally, I’ll end with an old people line, “life is short, enjoy the ride.”

*A similar version of this post was written on April 28, 2014

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Quotation Inspiration

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
– Saint Francis of Assisi

I noticed this quote in the signature of an email, probably because creative signatures are becoming a rarity.

It made me think of living with CP & working alongside medical professionals for effective care.

Start By Doing What’s Necessary.

My mother “likes”* to tell this story where other moms of kids in my peer group would invite me (and my mother) to their play group. My mother would say that although it would be nice to go to play group but that I had PT at that time (usually). The mother who had invited us to said play group would usually reply, “Can’t you just cancel that?”

My mother’s answer was “No.” Her answer was always “No.”

She’s often said that she didn’t want to sit around and make small talk with moms that didn’t understand why PT was important anyway. She didn’t want to sit around and listen to people brag about their kids either.

I don’t fault my mother for her response. I didn’t even know how frequently she had this conversation with people until a few years ago. If anything I’m glad she kept all of this from me, because I would’ve resented her when she said, “No,” so it all worked out for the best.

Socializing is important, but when you have a disability so is therapy. Therapy allows an individual to learn what they’re typical peers already know. It’s a necessary part of growing up, that is if you want to grow up and be able to keep up with your peers.

There are plenty of other examples that I could’ve used to illustrate the “necessaries” of CP, but PT seemed to be the obvious choice since I had a good story to go with it.

Then Do What’s Possible.

Doing what’s necessary enables you to better do what’s possible, and sometimes enables you to be able to do what’s possible, at all.

You may not be able to do something the same way as your peers but you can do it, and with style!

The cool thing about doing what’s possible is that the more you do the more you can do, even if you weren’t able to do it before.

The best thing about doing what’s possible is…….

Suddenly You Are Doing The Impossible.

This is a dead giveaway given the first 2 points, but I can prove to you that it’s true.

I never took care of myself physically. I did what was necessary, pretty much, but that’s it.

I never took care of myself, until I saw what taking care of myself actually meant.

The only reason I started going to the gym at all was because I had met my post-op PT goals yet I wasn’t able to do much else.  I could dress myself but unable to get clothes to dress myself with. I could get up and down a single stair safely, but only if I had to.

Going to the gym is different than going to PT. It isn’t any easier, but it does change things up a bit. Some goals took longer to achieve than anticipated but I got there. I had every intention of stopping once I was “better” but things didn’t exactly work out that way.

I’ve lost some ground recently BUT in the last few years I was able to do things I’d never been able to do before; I honestly thought some of them were impossible.

So, “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”

*I say “likes” because this is something she doesn’t bring up at every opportunity but it’s one of those stories that I’ve heard enough times that rolling my eyes each time I hear it has become an automatic response.

*A similar version of this post was written on March 6, 2014

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

If Things Had Gone According To Plan

I probably could’ve included this post in last month’s topics but it seems to fit better now than it would have then.

I have several friends who have birthdays within one week, at least 3 have their birthday on the same day. So you can imagine what it was like in college when everyone turned 21. We probably should’ve just had 1 big party and called it a day.

It’s around this time of the year that I usually think what would’ve happened if things had gone according to plan.

I haven’t always been this way; in high school I became aware of the pro-life/pro-choice debate. For one, girls around me were getting pregnant and people were becoming more in touch with their convictions. Does one have to do with another? For some people, probably.

Then there was one day in American Law (I’m still not sure how I ended up in that class) when the teacher decided that we would talk about the current court case dominating our local news.

A pregnant woman had been killed and her baby was delivered by emergency C-section. The baby lived on life-support for a number of days before dying. The person who killed the woman was in jail awaiting trial but now that the baby had died there was debate as to whether they should be changed with murder of one person or two.

We, as a class debated about it for a while before the teacher told us what the paper had published (because few of us, if any, had read it yet).

The person was only charged with 1 murder because the baby “was not alive,” according to the judge.

“So this judge is basically saying I don’t exist.”

I have this habit of saying things under my breath during class, but I usually sit in the back so it’s not the problem you would think, unless I was sitting in back of a friend who is keenly aware of this habit.

Babies are typically born between 37-42 weeks’ gestation. The baby in question was delivered between 38-39 weeks.

I was born at 32 weeks.

My friend knowing this, and hearing my comment, brought this to the teacher’s attention (and basically kicked the soapbox in my direction).

She and I also started a running debate, that continues to this day, over which one of us is older because she was born full term in March whereas I was born preterm in February instead of full term in April. I should be younger than her, but I’m not 🙂

Our teacher, wanting the class to be fully engaged in debate whenever possible tried to make the case that I was different than this now dead child, other than this baby had died and I was very much alive.

“But the baby needed oxygen”

So did I.

“The baby needed a feeding tube”

So did I.

“But the baby was sick”

“Well wouldn’t anyone be traumatized by what this kid had already LIVED through?” Thus causing distress than would translate into sickness.

“The baby wasn’t born at full term”

“Not according to any credible medical textbook ON EARTH”

Back then I was 210% pro-choice, but this really got under my skin. We had talked about how every court case has the potential to effect the outcome of future cases. Which this was apt to do given the “when is a person a person” debate. But this had another element to it.

A judge was, in a sense, saying that I don’t exist. Me, the person sitting in 2nd period American Law. A, then, senior in high school. Wasn’t alive. Wasn’t a person.

I don’t remember how class ended that day but I do remember saying “Well then don’t talk to me. I’m not here. I don’t exist,” and didn’t talk to my fellow classmates for the rest of the day. I’m not sure what point I was trying to make back then, nor do I think I made that point. But I made an effort.

I disagreed then much to the same extent that I disagree now.

That class, that particular day, still sticks in my mind, particularly around my actual birthday and my “should have been birthday.” It’s funny how thinking about someone else’s life made me really consider my own, quite possibly for the first time in my short life.

If things had gone according to plan would I be the same person I am today? Probably not.

For one thing I’d have to share my birthday with more people than I already do. I do like sharing my birthday, in fact I feel weird (and embarrassed) when all the focus is on me especially when everyone is singing “Happy Birthday,” but the idea of sharing a birthday with many more people freaks me out just as much.

I probably wouldn’t have Cerebral Palsy; therefore, I would probably need to work harder to standout (which could be a good thing some days).

I wouldn’t have the same opportunities in life.

If things had gone according to plan, I might not have the same stance on “what makes a person a person” that I’ve had, and have now.

I know many people wish that things had gone according to plan at least a few times in their life. I get it. I wish some things would have gone differently too. But I don’t think a lot of people think about what would have happened if things had gone according to plan.

If things had gone according to our plan all the time we’d probably find something wrong with that too.

It’s possible that things not going according to plan ends up being the better path. The life you got, even though you didn’t ask for it, is the best life for you. It doesn’t work out that way for everyone so take what you have, what you can get, and run with it.

Thoughts On Doctors

I was sitting at my computer last night fully intending to write a post when I was informed that today is National Doctor Day in recognition of the service of physicians. At first I thought, “we officially have a day for everything,” little did I know that Doctor’s Day has been around since the early 1930s.

Then I remembered a post I wrote last year called “The Doctors I Won’t Forget” and thought it would be fitting to repost and update today for two reasons, (1) doctors can actually be helpful and (2) to bring light to the fact that there’s inadequate healthcare available for people with Cerebral Palsy, especially once they reach adulthood (if not earlier).

I don’t just have one doctor I won’t forget and the same goes for their assistants and office staff. I’ve had enough horrible and incredible experiences to be able to write several books on the topics.

I remember in ’08 when I was looking for someone who could locate (never mind treat) the source of my chronic pain. I went to one doctor who sent me to another. I loved them both and would have stayed under their care if I had more of a support system in place at the time.

Knowing I needed a stronger support system I set out to find new doctors like the ones who opened the door and showed me how badly I needed help, even if it wasn’t going to be coming from them (no matter how much I wanted them to).

I hit the ground running (figuratively) and had my 1st second opinion less than 24 hours after moving across the country. I should’ve taken my lost luggage as a sign that things wouldn’t go well, but this guy came so highly recommended (and I was too jet-lagged as well as ill) I didn’t even bother with second thoughts.

I should’ve had second thoughts. I should have run screaming out of the office when I was asked (more like forced) to pick the one part of my body that hurt that hurt the most by the radiology technician (because every joint below my belly button wasn’t a good enough answer).

He wasn’t the guy for me. I went home crushed and waited for my formerly lost luggage to arrive from Alabama, while wondering what the hell I was going to do now.

I went to another doctor that someone had heard about. He was great and I would’ve given him the green light but I was “too old” for him, as in “I’d really love to help you, but you’re just too old for me. I don’t see anyone over 15.”

I was 24.

I sat in his office for hours and everyone, except me knew this wasn’t going to go anywhere. I get that private practice is a business just like any other but you’d think someone would’ve said that there was no point even making an appointment.

But because I did like him, and I respected his opinion (because of his background) I asked if he knew of anyone that might be a good fit for what I needed. He told me to go see one of the top doctors in the state. I thanked him for his time (although I wondered if it was really a waste for both of us) and left.

I didn’t go see the doctor he recommended, because I had already seen him. I knew him well. I knew he wasn’t for me.

So I turned to the internet. Surely there had to one person on the entire planet willing to treat a young adult with Cerebral Palsy. They just had to be found, and I was going to do it.

I made more phone calls and a few more appointments. So many that I thought about seeing if there was a world record for the most 2nd opinions and if I was even close to that number (because everyone needs goals, no matter how strange some are).

Then I found a doctor who found one for me, because he was thousands of miles away (but at that point distance didn’t matter) and he knew of someone closer. I took the information to make an appointment but also laid the groundwork to potentially see the guy I found thanks to the World Wide Web, just in case.

I made an appointment not expecting anything to come from it. Why would I after all the appointments I had sat through and how they all ended?

I went thought the appointment, just like I had all the others. It was different but I knew not to get my hopes up. Then he left to review some things and came back to talk to me.

He wasn’t the right person for me either. But he did something every doctor before him didn’t do.

He told me what he saw and then admitted that he could do the job but he knew someone who could do a better job. He’d already called him and he’d agreed to see me.

And the rest, as they say, is history.

I learned a lot from that process but the most important thing I learned is that you don’t get to choose to be a professional patient but if you’re going to be one you have to develop a tough skin because you’re going to carry a few disappointments with you and those are going to affect how you interact with any other medical professional forever. No, I am not being dramatic, at all.

I can’t forget those doctors and I won’t let myself either. As horrible of a journey it was to get quality care they each had a part in shaping the person, and advocate, I am today. Although I won’t go so far as to thank them for it.

What doctors need to realize is that even though someone might be “just another patient” to them they’re not “just another doctor” to that patient, especially when you have a chronic condition with chronic misconceptions.

And that’s just one experience with one specialist.

I’ve been searching for a general practitioner, to no avail, and it’s not like my CP is so complex that I need a lot out of someone who can cover the basics.

The problem is there aren’t a lot of doctors out there who know about CP outside of certain specialties, and the problem is just compounded by adulthood. It’s not uncommon to disclose your full medical history and then be told that you can’t be seen by this particular doctor or see a doctor and just know things aren’t going to be a good fit.

To all the doctors (and aspiring doctors) out there thank you for answering the call to serve, or whatever called you to medicine. Please step out of the box and educate yourselves on the most common disabilities out there, even if they are covered in medical school. What you’ve been taught (or are going to be taught) isn’t enough. Even if you don’t know anything about Cerebral Palsy, or any other disability, that’s OK, ask questions, be willing to work with a patient rather than sending them out the door and wishing them the best.

*A similar version of this post first appeared on an old blog on March 18, 2015