vector illustration sketch of a young boy holding his hands in his trouser pockets Hand drawn

As a diagnosed adult autist, I tend to live a private life. As such, I have chosen not to share this story before, but recent events have made it seem that it would be a good idea for me to do so.

You see, I have another condition as well — one that while rare, is not unheard of and is actually becoming more and more common in our current culture. It was in fact covered by Discover magazine and in quite a few medical journals.

For me, the beginnings were mundane enough.

One day, I just could no longer put cheese on my burgers.

Cheese made me feel awful. Sweaty, hot, nervous, and itchy.

Sometimes it made my breath short and my throat itchy.

So I just quit asking for cheese on anything.

I missed it, sure, but the cost was not worth it.

But it got worse.

One day, I had to omit the bun as well as the cheese, and then not too long after the burger as well.

And then the french fries.

And the drinks.

And then the side salads.

And then suddenly I was just no longer eating at all.

I don’t mean I went on a diet.

I mean I quit eating food. All food. Any food.

And that’s how it began.

Somehow, it just never occurred to me at first to go see a doctor.

I kept thinking that one day, I’d just get hungry.

That I’d just get over it.

Actually, I spent three weeks without food.

I lost 56 pounds, and I almost died.

The weird part of this adventure was that no general practice doctor seemed able to help me. I did not receive any treatment until I passed out – at 96 pounds – due to heart arrhythmia caused by a severe potassium deficiency, and woke up in an ER. Not that I did not eventually go and see doctors. I did. Bunches of them. They all just shook their heads and looked at me funny. They said my symptoms matched no known disease. I heard a lot of “Just eat something.” I got a lot of psychological referrals. And no one would admit me to a hospital or clear me for an IV. I was drinking plenty of water. I was urinating regularly. That I had wholly quit pooping did not seem to bother anyone.

Until, finally, one doctor suggested allergy tests but said he could not get them until three months later…

Now after a year and a half of testing – with more testing to come, I know I have idiopathic anaphylaxis, as well as multiple chemical sensitivity syndrome and environmental illness. I am still being tested for hormonal changes, mastocytosis, and mast cell activation disorder.

In English? I am basically allergic to 150+ foods and most manmade chemicals. I go through EpiPens the way teens go through fads. And given the $600 price tag of these life-saving devices, this is no joke. That means money worries are now a real and present part of my disease, especially as I am uninsured. I borrow a lot of money and still have trouble buying food and medications. The food costs are a big deal, as I have 15 foods I can eat and they have to be organic and I have to make them from scratch. After, I clean the kitchen and microwave. I can’t eat processed or pre-prepared foods at all as they frequently contain things that could kill me.

I also can’t wear rayon, drink from plastic bottles – and all I can drink is water. Even now. My house is full of bamboo, real wood (unpainted), steel and glass. I have my own glass plate, bowl, and mug. I have one surgical steel knife, fork and spoon. I can’t go to movies, restaurants, bars, or coffee shops. I can’t go anywhere where people may be eating or drinking, smoking, vaping, or wearing large amounts of makeup, lotion, or cologne. I read labels carefully, I go to farmer’s market’s, I keep track of food labeling laws (which totally suck in the U.S. I’ve eaten fraudulent food several times and ended up in the ER.) I can only eaten certain brands and thus have to mail-order my food or drive 50 miles to a specialty shop. My food budget is probably the size of your car or house payments. Healthy food is not cheap.

I can’t shake your hand or touch you. I can’t even touch my partner unless he has had a long shower with no soap or shampoo.

And don’t ask me how expensive it is to change over from everyday items to allergy-safe ones. Also, “hypoallergenic” means “low allergy,” not “allergy-free.” I am allergic to many hypoallergenic products.

I’ve learned to cook from scratch, and I’ve learned a fair amount of basic furniture building – unfinished wood products actually tend to cost more then finished ones for whatever reason.

Any new item I buy – food, shirts, chairs – is a role of the dice, heads I can use it, tails, I wake up in an ER, or maybe don’t wake up at all. That said, let’s get down to details.

Here is my average day. I get up and peel back my 100% cotton blankets. I put on my 100% cotton clothes. I start with cotton briefs and then my long pants. (I can’t wear shorts because I cannot risk airborne pollutants such as smoke, pesticide or other air irritants touching my skin, as that can start a reaction.)

Next I put on a cotton-lined undershirt, cotton or linen shirt and socks. I put on cotton boat shoes or my leather boots. I can’t wear sandals or flip flops as I might step in something or brush a grass patch or lawn that has been recently sprayed with pesticide or fertilizers. I strap on my med alert bracelet and my latest two EpiPens.

I sit down at my glass and metal computer desk on my leather chair – first wiping the surfaces with a clean microfiber cloth.

I check my various social media, my mail and my calendar. Today I have reminders for visits to Great Smokies Medical Center (allergist) and MUSC-Charleston (neurologist).

I also have reminders to go by Trader Joe’s to buy a few things and to mail-order more of my safe food ingredients. I am lucky to live in a place with whole food, organic, and farmer’s market options, but I still have to mail-order some items to get them 100% pure. (Why do Americans insist on adding sugar to peas? And basically everything else?)

I go in the kitchen and dampen a sponge and wipe everything down.

I live with two other guys, neither of whom have allergies. I wash my hands for three minutes under hot water, scrubbing the fingers, palms, and under the nails the way my doctor taught me to.

Today’s meal? Salmon, peas, and white rice. (I am allergic to brown, oddly enough.) I put 100% pure organic coconut oil in my cast iron skillet and warm it up. To this, I add one organic Chilean salmon plank (I am allergic to sockeye) and turn it up to six. I put white rice and coconut oil in a stainless steel pot of purified water to boil. (Our city’s tap is chloraminated – no, that is not a misspelling, it means they add chlorine and ammonia to the water to kill germs and parasites. I learned that after being rushed to the ER after having a glass of water). I do the same with the peas.

I cook the food and then wake up my partner. I am not allowed to eat alone in case of accidental contamination. My allergies are that bad. I need to have someone nearby who can use my EpiPens in case I react too quickly to do so myself. (Which happens.) We eat in the living room. I sit in my special chair. No covering, easy-to-clean vinyl and put out my special coffee table, unstained wood.

My partner and I eat and talk, and since I was lucky again today, the meal is uneventful. When we finish, I take my dishes to my designated sink and wash them with a cotton washcloth and hot water and then dry them and put them in my special cabinet. I put away my table after wiping it down and go to the bathroom to water brush my teeth with coconut oil and salt and then rinse with hot water. I can’t use toothpaste or fluoride or mouthwash so I brush a lot. Then I go check my digital chore list.

I have several chores today. I have to clean out and defrost my special mini-fridge. I need to do laundry. Since I can only wear my clothes for one day, I have to do a lot of laundry. I wash it in hot water twice and then dry it. I need to water the garden. I can do this if I wear my gloves. I need to check the air quality. If someone is barbecuing or having a trash fire, I’ll need to wear my mask as well. I like being outside. I usually do not need a mask. I have no natural allergies except to flowers – we have none – or foods. So I can hike, swim in a lake, garden, or go to the park without a mask. Usually. I need to walk the cat. She is harness-trained and it’s her only out door time. If the temperature is above 80, I put on my water belt. I can’t wear shorts, tanks, flip-flop, etc. I’ll be dripping sweat before we are done. I need to stay hydrated.

I do my outdoor chores and come in to take a shower. I can’t wear bug spray, suntan lotion, or deodorant, so it’s a given that I stink. I’ve quit going out on really hot days because people stare at me and tell me how bad I smell. You’d stare as well. Long pants, long sleeve shirt, socks, shoes, usually a hat and it’s 90+ during the summers since I live in the south. After my shower, I sit around in my boxers reading my Kindle. I had to give away a 25 year collection of books because I was allergic to them – mold, dust, inked covers, acid treated pages, and so on. I have a few books again now as my allergies have slowly begun to fade where paper is concerned, but most of my collection is still almost entirely on my computer or Kindle. I’ll write for an hour or two on a good day. On bad ones I surf the internet or watch a movie. I’ll email or chat with my online friends and apologize again to the flesh and blood ones.

(No, I can’t come to your wedding, the hospital, to meet your kid or puppy, to have coffee, to see your play. Yes, I am still sick. No, it is not personal.)

A pop-up reminder tells me I have to see my psychiatrist tomorrow. I need to cook extra food and put it in my special cooler in the fridge for tomorrow. I’ll need my mask, gloves, and extra clean clothes. I’ll need to set my alarm for an early shower and shave (hot water, sharp razor -surgical steel). I’ll carry a knapsack with extra clothes as well as the food in case of spills or other exposures.

I don’t want to go. It means risking my partner’s car, her office, and then sitting in the car while my partner eats on the way home. It means bathroom hunting and avoiding people who bath in their cologne or use 11-scented products in the shower. I hate going out. We live in a chemically enhanced culture, and despite the health risks, good luck getting people to give up the makeup or the deodorant or the hair gels. Or in getting people to not eat everywhere. One of the first things I noticed getting out of the hospital was that Americans do eat or drink almost all the time. Walk through the park on a sunny day and count the coffees, sodas, popcorns, ice creams, snack bars, nut mixes, or what have you. Drive down Main Street, anywhere, and watch the coffee drinkers on the stoops or out window shopping. Note the people at outdoor tables with their drinks and food. Even in grocery stores or public shops, carts come with coffee holders and free samples abound. And all of these people are also touching everything. My life is a continual minefield of little traps. Who touched this last? How can I open this door without touching the handle? Can I pee in here or did someone spray an air freshener? Was this food cooked on a safe grill? Did he just touch my food? Is there anything on this chair? Did anyone repaint recently? Will she come to my house wearing make up? Will the repairman use WD-40 even though he was told he absolutely could not do that? I can’t sit on a park bench or touch a shop door handle or shopping cart with any assurance of safety. I am continually washing my hands. I even carry spare water for this purpose.

And do I get weird looks? Man, do I ever.

And angry and disdainful ones as well.

I am eternally explaining about my allergies, and people are still offended. They take it personally. They just don’t get it. And yes, I have to go to therapy. I do have mild post-traumatic stress disorder (PTSD) and anxiety issues. I do struggle with depression. I wake up every morning knowing I could die that day because I was careless or because someone else did not actually care that there are people like me in the world. And when you add my autism to the mix, meltdowns are common, and my life partner has to be prepared to help me deal with them as they come, which adds a layer of extra stress to his life.

But I digress, back to my evening routines. I usually wrap up my evening chores by around 8 and then do 15 minutes of exercise with my steel weights (un-oiled) to try to lose a bit of the weight I gained now that I don’t go to sword fighting, jujitsu, go to the gym, or any other fitness space. (I can’t risk being indoors in those spaces or worse having other people touch me.) Then I shower again before bed. (I shower a lot.) Tomorrow this cycle will repeat, and if I am lucky, I won’t need the EpiPens.

And that is my life. Every second of every minute of every hour of every day of every week, month and year is spent being careful, watching and washing my hands, apologizing to people lucky enough to be healthy and alternately wishing I was healthy or wishing I was dead. So now you know.

So when you see me and the many other people like me out in the world, how about being a bit nicer, eh? Not all conditions are visible; many are not (autism, allergies, diabetes, deafness, etc., etc.), and it would not hurt you to realize that and offer us a little patience and consideration.

Thank you for reading this, and bon fortune.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

Image via Thinkstock.


Sometimes, on a very rare occasion, my husband refers to me as a chucklehead. I’m always a little surprised when he does. 

There was a time in my life when I was funny and lighthearted and perhaps even a chucklehead. But that was the Jen of years ago; the Jen back before my brother died.

I don’t want to admit that the sadness and heartache and grief have won, but if I’m honest, I realize in these moments that it has.

On December 11, 1981, my brother, Garrett, was born into the world, and for 20 years he filled it with laughter. My last memory of him involved some sort of flatulence and hysterics. His sense of humor was not only entertaining but a source of sanity during difficulty. His humor brought the perfect comedic relief to tense conversations (which my family loves), and it was a reminder that life didn’t have to be so serious. More than anything — he was just fun.

But then he died.

And when he did, he left a gaping hole. Funny just didn’t feel right without him anymore.

My children are getting older, and this anniversary isn’t as easy to acknowledge on my own. Now I have two little guys who look a lot like their uncle, and they want to know why Mommy is sad, how Uncle Garrett died and what he was like.

So I’m curled up on the dining room floor with my son, Isaac, and I’m crying and telling him all about his uncle and how his middle name is Allen just like Garrett’s was. And I’m remembering how funny he was and how much I miss that and how little I laugh like I used to.

And then it occurs to me that Isaac, my son whose middle name is in honor of my brother, means “to laugh.” And I believe there might be something to that. Some gift that God tucked away into this whole hellish kind of grief to emerge and find one day in the future while crumpled on my floor, wondering how to find that laughter again.

I wrap my arms around my son and take a deep breath, and I am thankful for the laughter that has returned.

Follow this journey on Jennifer’s website.

Lead photo source: Thinkstock Images

Dealing with chronic illness usually means a constant array of doctors’ appointments and hospital visits. You would think that someone who spends so much time in medical environments would be completely on top of their health as a whole. Even so, when spending so much time at specialists, the “regular” doctors’ visits sometimes get pushed aside.

Unfortunately, this can lead to a rude wake-up call, like what happened to me recently. I’ve been to many gastroenterologists and esophageal specialists lately, but I somehow hadn’t been to the dentist in two years.

I knew that I’ve been way overdue for a dentist visit, especially since the levels of acid in my esophagus can weaken my teeth. With moving, starting a new job, and getting ready for my upcoming surgery, I just hadn’t had a chance to find a dentist in New York City.

I also haven’t found an eye doctor, even though I definitely need a new prescription in my glasses, not to mention a psychologist and a dermatologist, but those will all have to wait until after the surgery. I thought I could get away with waiting to go to the dentist as well, but my teeth had other plans.

I was sitting at work one morning, typing away, when I felt something weird in my mouth. Turns out that part of my tooth had just straight-up fallen out. I had had a root canal on that tooth several years ago…but had gotten too caught up with my other medical issues to get a cap put on it. The poor little tooth just wasn’t strong enough to hold up.

Luckily, I was able to find a great dentist near my office, who saw me immediately. I didn’t exactly want to walk around with half a tooth, so I was glad to get it taken care of, even though it was the middle of my workday.

I didn’t anticipate the difficulties of sitting in the dental chair now that my esophagus has gotten so bad. The slightest prodding in my mouth can cause gagging or esophageal spasms, which isn’t super safe when someone is poking around in your mouth with sharp objects.

The dentist was incredibly patient with me, though, being careful to stop drilling if I had a visible spasm. It took her a little while to figure out what was going on, since I couldn’t talk while she was working, but eventually she understood that I wasn’t feeling her tools through the Novocaine. I’m definitely not the easiest dental patient right now, but this had to be fixed.

So now in addition to coordinating my upcoming surgery, I’m also trying to get a crown put on said tooth. The dental office has been really understanding, especially when the first crown that was sent from the lab didn’t fit my tooth. Now they’re trying to rush the new one, so that I can get it put on before the surgery.

I’m sure I’m not the only one whose chronic illness takes over in the appointments department. I know now that I really do need to keep up with everything else, but it is easier said than done. Barring any more emergencies, my focus does have to be on preparing for the upcoming surgery. As soon as I’m relatively recovered, I do plan on setting up other necessary appointments.

Understandably, when it comes to medical issues, the most painful or prominent condition gets the most attention. My tooth ordeal showed me that part of taking care of the body as a whole is to not ignore the individual parts.


When I was first diagnosed with pulmonary hypertension I looked everywhere for breads crumbs of hope. I was so desperate to find a bit of light in all of the dark that surrounded me. All the information I found online was scary, and just confirmed the horrible diagnosis I had received. It was also difficult to navigate treatment options, and where to look for support. Because pulmonary hypertension is a rare disease, it can be hard to find the information that you are looking.

Here are four things I wish I knew when I was diagnosed with pulmonary hypertension:

1. It is OK to get a second opinion…

…or a third or fourth.

I am currently in the process of finding my third pulmonary hypertension specialist. It took me over a year after my diagnosis to realize that I could get a second opinion. Because pulmonary hypertension is a rare disease, there are a limited number of specialists compared to doctors who treat other diseases. I thought that I had to stay with the first one who was assigned to me, but realized it was OK to ask for a second opinion.

I was a little worried about asking for another opinion at first, but realized that people do this for other diseases (such as cancer) all the time. Make sure you find a specialist who is up to date with current medical trials, treatments, and studies.

Finding a specialist to treat pulmonary hypertension is also a bit of a unique situation. You literally have to trust your life in the hands of these specialists. This is why it is important that you find a specialist who you are able to have a good relationship with. I found that most of the specialists I have met so far have been very dismissive of my questions and concerns. I want to be active in my treatment. It is important that my doctor not only treat me as a patient, but treat me as an equal and a human.

I need a doctor who will be honest with me, but also someone who is optimistic and rooting for me. I’ve found that some of the older specialists I have met with are a bit jaded, and see me as a dead woman walking (even when I improved my walk test by 100 meters without starting a new medication!)

Remember, your pulmonary hypertension specialist is working for you. Find the perfect team for you. Let your doctors know what you need from them, and don’t be afraid to get another opinion. Find someone who will let you be as active as you want to be in your own treatment.

2. Resist the urge to Google!

The day I was diagnosed, a doctor touched a vein in my neck and made a visibly devastated face. This is when I knew I was not going to get the doctor’s visit I had anticipated.  He mentioned that he thought I had pulmonary hypertension and that I should be sent off for some tests. (Spoiler alert: “Some tests” turned into an overnight stay and two days of vigorous testing.)

While waiting for my tests, I Googled what the heck pulmonary hypertension is because my doctor did not explain it to me, and I had never heard of it before. As I read about it on my cell phone I begged my dad not to look it up when he got home. (He also, of course, Googled it as soon as he could.)

A lot of the information that shows up online is out of date. A lot has happened within the last decade in terms of treatments. Since I was diagnosed, I’ve seen several new medications get approved for the treatment for pulmonary hypertension (hoping they become available to Canadians soon!)

As new medications become available, the future for newly diagnosed patients becomes unwritten. Simply put, we don’t have the data yet for what kind of stability and survival these new medications can offer to pulmonary hypertension patients long-term. This leaves a lot of room for hope and potential. This also means that an old article you found online might be out of date, or simply doesn’t apply to you.

3. Find support.

Dealing with a diagnosis like pulmonary hypertension is very challenging. Children, young adults (especially women), adults, and the elderly will all face different concerns and obstacles after diagnosis. For example, finding out that pregnancy carries a high mortality rate for woman with pulmonary hypertension weighs very heavily on me. This may be less of a concern for someone who is diagnosed later on in life, but they may have different concerns, like who can help take care of them, or who can help take care of their family.

It can be difficult to try and adjust to your life after diagnosis. I know I had many questions and concerns about my future. I also found that I had a lot of questions about my spirituality. (What did I believe in? Do I believe in anything?) I was in a heavy depression after my diagnosis, and truthfully, the fog still rolls in some days.

If you are struggling with your diagnosis (or the diagnosis of a loved one), please don’t hesitate to find help in whatever form works best for you. There are lots of options available, from speaking to a therapist or a counselor to talking to a good friend over coffee, to enlisting the help of a life coach!

4. Try not to focus on statistics.

If you broke cardinal rule No. 2 and Googled pulmonary hypertension, you probably saw some pretty scary looking statistics. It is possible that your doctor also told you about the statistics in terms of survival for people with pulmonary hypertension. As mentioned earlier, there is less long-term data available about the survival rates for people with pulmonary hypertension as new medications are introduced to the market. The future is unwritten, and so is yours.

It is also important to remember that pulmonary hypertension, like any disease, affects everyone differently. Statistics are based on numbers, not individuals. As a whole, pulmonary hypertension is a devastating disease that deserves more awareness. However, through my blog The PHight or Flight Project, I have had the opportunity to share the exceptional stories of other people who have pulmonary hypertension for the segment called PHighter Friday.

I have had the chance to share some very exceptional stories, ranging from people who have been on supplementary oxygen for more than 20 years and have found ways to garden every spring and summer. Others have had pulmonary hypertension for a few years, but have managed to return to work and adapt. I have also spoken to several people who have had pulmonary hypertension for 30 to 40-plus years and still golf!

I understand these cases do not happen enough, or I wouldn’t be here blogging about pulmonary hypertension. I am not certain what will happen to me, but the optimist in me always tries to hope that I can be the exception, and I hope that you can be the exception, too.

Even if I can’t be the exception, I have managed to make some cherished memories in the past year — something I didn’t think could be possible the first year after my diagnosis.

This blog was originally published on Pulmonary Hypertension News.

After miscarrying at 24 weeks, Jessica Huchko went to Babies “R” Us to do something she dreaded: return her unused babies items. Huchko and her husband had bought a double stroller and carseat from the store about a month earlier in anticipation of their newest addition.

“Unfortunately we learned that my son had passed away,” Huchko wrote in a post on Facebook. “I had to make the dreaded trip to your store soon after my loss to return my purchases. I never expected that my son would not survive so I did not save the receipt.”

When Huchko got to the store, a sales associate asked if her if there was anything wrong with the items she was returning. Huchko replied that there wasn’t, but the woman at the register pressed on. Huchko then explained that her son had passed away a few weeks earlier, and she couldn’t keep the items. By this point, Huchko was in tears.

“I was so emotional I could not stop crying,” Huchko wrote. “I became nervous now that so many people were watching me cry while she was looking up the product. She must have scanned the items over 20 times and could not find them in the system anywhere.”

Unable to find Huchko’s products in the Babies “R” Us system, the sales associate called over a manager. Again, Huchko was made to explain why she was returning her items. As the manager searched for the items in the system, Huchko and her 1-year-old daughter stood in line waiting for over half an hour. After finding the products, the manager was only able to offer Huchko half price for the $80 carseat and two cents for the $179 double stroller, which had since been discontinued.

“I was so upset and frustrated with this place I started hysterically crying while everyone was watching me,” Huchko wrote. “I have never been more embarrassed in my life. I was still in complete mourning of losing my son and now this? I grabbed my store credit and ran out of the store.”

According to WFSB, Babies “R” Us has since reached out to Huchko to issue a refund. “We are deeply sorry for her experience in our store, and more importantly for her loss,” Babies “R” Us told WFSB. “The store leadership has provided coaching to the team members to help ensure similar situations are handled with more care in the future.”

You can read Huchko’s full Facebook post below.

While there is no simple guide or universal set of instructions for what to do after a miscarriage or stillbirth, resources exist to help grieving parents. Here are just a few:

What Should I Do With My Nursery After a Miscarriage?

Healing After Miscarriage

Early Miscarriage: What to Do and How to Cope

FAQs about pregnancy loss from the Miscarriage Association 

A Woman Loses More Than the Baby After a Miscarriage

It’s me again…

Yes, I will continue to share my thoughts and repeat the ideas I’ve been presenting for two years to the school system.

As I read the news about the Florida Statue University football player/student who sat down to have lunch with a student with autism, I reaffirm my position: the Florida Department of Education (FL DoE) and its districts are not doing their jobs.


FL DoE and its districts ought to be ashamed of the fact the media is highlighting another student is allowed to sit alone in a cafeteria. It took a visitor to the school to notice and approach him.

It is unacceptable that the leadership of that school and district (as it happens in every single district in this state and the country) permitted this young man to sit alone.

The FSU player must get all the attention. I respect him because he knows what our kids need, yet the system created to educate and socialize our kids in an academic setting does not.

Suggestion: FL DoE should be creating an action plan and submitting some kind of press release to every media outlet announcing — finally — the introduction of buddy programs in every school. By the way, there is no cost involved in creating such programs and the multiple benefits for all students have been researched and confirmed.

For the past two years I’ve been requesting the same. 

The answer: nothing. I correct myself — for a couple of weeks the attempt was made to have a fifth grader interact with my daughter. The project was stopped because there was no plan of action, no commitment, no interest, no acceptance, no support, no compliance, no least restrictive environment (LRE).

Our reality: after the last incident and my letter/request, my daughter is finally having lunch with her peers. 

I look forward to great stories from her about this experience.

In the meantime, many students with disabilities continue to sit by themselves in the cafeteria, without involvement, interaction, exposure to the rest of the student body. The responsibility lies in the principal, the ESE director, the superintendent of every district in Florida, the FL DoE ESE Bureau Chief and the Commissioner.

A least restrictive environment is the goal. FL DoE and its districts are not in compliance. The time to correct this is yesterday.

Thank you for your consideration.

Author’s note: I urge Florida State University personnel to consider the creation of a FSU buddy program. There is so much that can be done! A win-win for all.

Image via Facebook.

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