My wheelchair does not give you permission to touch me

June 13, 2018

Last weekend I marched in Boston’s Pride Parade and it was wonderful! I had a fantastic time. But it wasn’t all perfect.

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There were a few things that bothered me about being in a wheelchair, and a big one was people touching me without permission.

It works the way many other parades do: we marched, and people on both sides of the street watched us. Some waved, some cheered, some yelled, some smiled excited smiles. And some high fived the folks passing them.

I didn’t want to high-five people. There were several reasons. One is germs. It would be hours before I could wash my hands. Also, gluten. I wanted to eat the sliced apple I brought with me. With my hands. I couldn’t contaminate them with the gluten that was probably on strangers’ hands. Also, I didn’t want to eat an apple after high fiving dozens of strangers because ew. Germs again. And then there was the pain. It hurts to high five 1 or 2 people, never mind dozens.

I love to wave at folks as we walk in the parade, but I quickly learned that people used that opportunity to give me a high five, so I had to stop waving. That was sad. I picked it up again in areas where the crowds were behind barriers, but most of the streets had the crowds practically on top of us. As we went by, I tried to keep my hand in my lap. (My other hand was already holding the large 45-foot flag that our group was carrying.) Sometimes I would say, “I’ll pass” or something similar. Often that was good enough. But not always.

Too many times, the person would then touch me. They would touch my shoulder or my arm. One touched the bag in my lap. It was weird and awkward and gross.

It could have been worse. Luckily, I wasn’t in so much pain that even a tiny touch was excruciating. But I could have been. Thankfully I’m not generally adverse to touch, but I could have been.

I love Pride. I yelled “Happy Pride!” to so many people in the crowd that my voice was a bit hoarse by the end. I adore Pride. I love seeing tens of thousands of people celebrating who they are and who they love, supporting their loved ones and our community, and showing the world that who we are is not “wrong,” despite what so many people (and governments) say.

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I love Pride, but that doesn’t mean I want to be touched by strangers without permission at Pride. Or any other time.

I know I am not alone in this. So many people have similar experiences. There is something about having a visible physical difference that makes people think they have a right to your body. It’s like when strangers touch a pregnant woman’s belly without asking. WTF?! Just because you can see that someone is pregnant or in a wheelchair, doesn’t mean you “get to be part of the experience.” It doesn’t work that way.

Part of it is also that people want the “poor woman in the wheelchair” (that’s the attitude, if not the conscious acknowledgment) to be included. Here’s the thing: including me means giving me control over my own body. It means accepting my wishes for my body. Touching me without permission is not including me. It is disrespectful and gross. You don’t do that to others, so don’t do it to me.

At the end of the day, one of the women who had pushed my wheelchair for part of the parade told me that she felt bad for me. She saw what was happening but didn’t know what she could do. No one high fived her, because she didn’t have a free hand – they were both on the wheelchair. Yet, strangers didn’t touch her. Think about that for a second.

Many people looked awkward in the moment. Their hand was up, and they had to do something so instead of putting it down or high fiving another person, they touched me. Did they later realize that was an odd thing to do? I hope so. At the very least, maybe they will read this (or one of the other things I have written about this incident) and think twice next time they are tempted to touch a person in a wheelchair without permission.

Because again, if you wouldn’t touch the person pushing my chair as she passed by, then you shouldn’t touch me, either.

Maybe next time we’ll talk about all of the photographers along the route who took my photo only because I was in a wheelchair. Not cool, folks.

By the way, I want to give a huge shout out to all of the awesome folks who made it possible for me to attend Pride! The local Council on Aging loaned me a wheel for free (many do, so check your town’s Council on Again if you need to borrow a wheelchair, cane, walker, commode, etc.) Several folks volunteered to push my wheelchair during the parade. At the last minute, someone volunteered to push my wheelchair around part of the festival that follows the parade (and thankfully I was able to walk and push it the rest of the time.) Someone volunteered to take the wheelchair out of my car and get it downtown with me. A stranger in the subway station helped me get the wheelchair onto the train. And stranger on the train offered to help me get the chair off the train and then put it in my car for me. I can’t lift the wheelchair into or out of my car and I can no longer walk as much as I would need to in order to march at Pride, so without these folks, I couldn’t have attended Pride. I was exhausted afterwards and spent 2 days at home recovering, but it was totally worth it. Some folks were weird, but many others were kickass, and it’s important to remember them!

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When even medical professionals don’t get it

March 30, 2017

There are the medical people I know in my personal life: a distant cousin, an aunt’s in-laws, friends of friends. Sometimes it’s just a random person I meet to hears about my health issues and lets me know they work in the medical field.

Some of these people are awesome: understanding, supportive, helpful. And some make me want to scream by thinking they can offer me advice. People I barely know, or maybe don’t know at all, tell me what I should do for my health. Or worse, they don’t understand that I really am sick.

But then there are the worse ones: the medical folks I see for my own treatments who Just. Don’t. Get it.

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Usually I walk away. If they don’t understand, then I don’t want to waste my time. But this latest one is a tougher situation.

It’s my physical therapist. For one thing, she means well but she’s scatter-brained. She asked me if I’d tried a particular yoga pose. I said no, I was told not to do yoga. She was surprised. I pointed out that she told me not to do yoga just a few weeks ago. Things like that. When I walk in, she has no recollection of what we did last time, even though I know she writes notes after every visit.

She also does a good job overall. And there’s no one else to see. It took years for me to find her! I searched for ages for someone to do this particular type of treatment (easy) that my insurance would cover (almost impossible.) One of my insurances covers her and she’s giving me a break on the other. I really appreciate that. She’s been so kind about it. And she does a good job.

But then she wants me to exercise more, to make sure I build up a good sweat. I try and explain how adrenal fatigue works, how that could be dangerous. She wants me to talk to my other doctors to make sure I’m really not supposed to be doing it. You know, in case we hadn’t already had this conversation 80 bazillion times. In case I misunderstood. In case I don’t know my own body! So frustrating!

And then yesterday she grabbed my wrist for the millionth time. I know this is just a typical maneuver. I know she does this automatically because she’s done it so many times before with countless other patients. But she’s a physical therapist and she needs to take each patient’s needs into account and I don’t know how many more times I can tell her not to do this before I completely lose my shit.

Because I’ve been clear. I’ve said it hurts. I’ve explained that I have a long history of pain there. I’ve said that it upsets me. Yesterday I calmly talked about it after the appointment. I explained the emotional trauma a bit. She tried to say there was no need to explain, but I figured hearing it might help her to fucking remember! 

I don’t usually swear on this site, even though I do in real life. Not a lot, but enough. I can hold back when I think it will offend people. Usually. But not today, because this is SO UPSETTING to me!

I have 25 years of pain in my wrists. It was my first symptom. But that’s not the reason it upsets me so much. No, it’s because of how I was treated. Doctors did horrible things to that wrist and to me. I had to start off my explanation by saying, “I don’t have PTSD but….” Because while it’s not PTSD, I do have a panic response. I told her that there is no one in this world I trust to touch my wrist, and that’s true. There are some people I trust to touch near it, and some don’t make me panic as much, but I don’t trust anyone. Not even my mother, my best friends, my past lovers. And certainly not medical professionals!

So we’ll see if she listens. If not, I might have to take more drastic action. But for now, we’ll see.

I try to be patient but she’s a medical professional. She should know better.


The futility of “You get what you pay for” in healthcare

May 15, 2016

It started as a normal health conversation. I was talking to someone I knew who just got her license (like a prescription) for medical marijuana. She was talking about how great her doctor was, and how I should see him.

I had just started the process to get a license myself. I pointed out that I had already seen a doctor and I wasn’t about to see another. She said I should see hers when I have to renew my license (in 6 months, per state law.) I pointed out that my doctor is cheaper. And that’s when she said it.

You get what you pay for.

I was stunned. First, that’s obviously not always true. My smartphone, for example, was one of the cheaper ones out there, but it’s been running perfectly for 2.5 years. I have plenty of friends with phones that cost twice as much that haven’t lasted as long, or with shorter battery lives. More expensive is not always better.

But more than that, she knows about my financial situation. So even if she’s right, why would she suggest that I spend an extra $100-200 per year unnecessarily? How insensitive!

To be fair, I don’t think she fully understood what she was saying. She became unable to work before she ever reached the age to work. But at a young age she also moved in with the man she later married. He has a good job that easily supports them both. Funds aren’t unlimited, but they take the occasional trip overseas, have 2 dogs, live in a nice apartment, and can afford extras that help her health-wise like massage appointments and laundry service. That’s the only adult life she’d ever known.

So she doesn’t know what it’s like to know that every penny you spend is being pulled out of limited savings. She doesn’t know the fear that if you spend too much, you will run out of money, and then what?

I shook off that comment. I was too surprised to coherently answer, and I knew it wouldn’t matter anyway. Still….

You get what you pay for.

Maybe she’s right? I’ve thought about it a lot in the last two days. Maybe I should have seen that other doctor. In theory, I got what I needed: the license. But her doctor did sound helpful. He gave her personalized advice: which strains of cannabis to buy, how much to take, etc. Then again, it’s too soon to know if his advice was accurate. Maybe it was, and maybe it wasn’t. Maybe my doctor’s more generalized advice will turn out to have been more useful.

In 6 months I will need to decide if I should see the same doctor I already saw, or try hers. I’m not sure what I’ll do. What I do know is that line rubbed me the wrong way.

People are constantly offering suggestions of things that will help my health: acupuncture, massage, Alexander Technique, etc. Many of these will and have helped – but who’s offering to pay for them? No one!

So from now on, I think that will be my response. When someone says, “You get what you pay for” or “You should try X” (and of course X isn’t covered by insurance) I’m just going to say:

Are you offering to pay? Thanks! I’d love to try that!

What about you? Have you encountered comments like these? What do you say? Please comment below! I’d love to know!


My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!


“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!


Birthdays: to celebrate or not?

June 29, 2015

There are certain holidays that come with pressure to celebrate. New Year’s Eve comes to mind. A couple years ago I skipped it and it felt sort of nice, in a sad way. I was too depressed about my health to feel that a new year was worth celebrating. I played board games with friends, and was home well before midnight. That worked for me.

This year, my birthday was sort of the same. I was feeling lousy and did feel like celebrating anything, especially not getting another year older which, in my mind, meant another year of lost youth, another year of lost opportunities, and another year closer to the health woes of old age on top of my current health problems. Yeah, I wasn’t in the best frame of mind.

So I decided to skip it.

Whoa! Not so fast! My family and friends didn’t like this plan. I know they meant well, but I was surprised at how much pressure I felt. People kept asking me what I was doing for my birthday, and they were upset when I said I wasn’t doing anything this year. I tried to brush it off by saying I threw a party last year, so there was no need to anything this year. I think they all suspected the truth, though. They knew I was feeling down. Some of them knew I was feeling too sick to celebrate. I wasn’t sure if I’d be up for doing anything at all that day. Would I be able to leave the house? Get dressed? Take a shower?

A friend who isn’t working said she’d take me out to lunch that day. Ok, that seemed reasonable enough. Low key. Simple. And if I had to cancel at the last minute, she’d understand. That made things so much easier! When people asked what I was doing for my birthday I could say a friend was taking me out to lunch. Yeah, ok, it sounded lame. I knew that. But it’s all I had.

In the end, my friend and I had a lovely time. Except for her paying for lunch, and letting me choose the post-lunch activity (sitting by a pretty pond, then chatting at my place) there wasn’t much mention of my birthday. And that’s just the way I wanted it. Simple. Easy.

Holidays are hard enough when you’re single and there’s no default person to celebrate with. I don’t have an automatic date for New Year’s Eve or someone I know will celebrate my birthday with me. Sometimes that’s really tough. Throw health problems on top of that, and then pressure from loved ones to have a bigger celebration that I want, and it’s just too much.

So that’s why I didn’t really celebrate my birthday this year. And I’m ok with that. Maybe next year I’ll have a party again. Maybe not. Either way, I refuse to stress out about it.


I’m done being the go-to sick expert at parties

December 15, 2014

It’s my fault, really. Someone asks me a question and what do I do? I answer it! What am I thinking?

The thing is, I’m happy to answer that one question. The problem is that it’s never just one question. One question leads to another and before you know it I’m talking about health issues for half an hour at a party where I was excited to get out of the house and be around other people so that I could forget about my health issues.

It doesn’t happen every time, but it happens too often. It happened last night. And I’m done.

Last night started simply, with one person asking a group of us if anyone had experience with CPAP machines, because he was having trouble with his. So of course I talked to him about my experience and tried to help him troubleshoot his issues. But as usual, two things happened that I hate.

First, this guy was all excited to have someone to talk to about this stuff, and wanted to delve into details. I saw him get that way people get when the suddenly see me as a potential mentor, teacher, or whatever. He even friended me on Facebook later, even though we’d only had that one conversation about health stuff. We know nothing else about each other. But based on that conversation, he wants to talk to me more.

Second, two more people joined in, even though they couldn’t really help. One knew nothing about sleep apnea but wanted to suggest we both try herbal medicine. The other knew a bit about sleep apnea and treatments because a friend of hers has it, so she told us what she’d heard from her friend. It’s nice they wanted to help, but they kept interrupting a conversation between two people who actually have the medical condition to offer their unfounded opinions. That prolonged my conversation with this guy, and it also made it harder to break away. Suddenly, it was a group conversation that was taking on a life of its own, so it was harder to end.

Thankfully, a friend came by, and I did something I don’t usually do. I ignored everyone else and started talking to my friend about something completely off topic. I think I asked him about his work or his holiday plans…. I honestly don’t remember. What I do remember is that the guy with the CPAP questions tried to talk to me again, and I ignored him. It was rude, but I considered it self preservation. In the past I would have answered him, and then I’d have gotten sucked right back into that health-related conversation and it would have ruined the rest of my night. I didn’t have any more suggestions for that guy, so we would have just been discussing what we’d already covered, but in more detail. This way, we all ended up talking about something else. I don’t know how anyone else felt about it, but I was much happier!

Last night was a big success, so going forward I’m going to keep doing that. I’ll still answer a question here or there, but when someone asks about my inability to eat gluten at a party, I won’t end up in a half hour conversation about Celiac Disease, how I figured out I had it, where gluten hides, blah blah blah. Nope, I’ll just promise to send them some useful links so they can read about it themselves and I’ll move on.

Don’t get me wrong. I’m still all about education. If someone thinks they might have Celiac, for example, I’ll gladly try to help them. But maybe not at a party. Maybe not when I’d rather be thinking about another other than my health. There’s a time and a place, and I think it’s about time I choose both.

Do you have this problem? Do you get sucked into health-related conversations at gatherings? How do you feel about it? How do you handle it?


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