Helping women with chronic illnesses

Chronic Travel

As promised, I am going to write about my recent experiences with travel. For those unfamiliar with this blog who have stumbled upon it, I don’t mean the phrase “chronic travel” to be taken quite as literally as one might think. (Those of you who are regular readers here will undoubtedly know what I mean straightaway)!

The dictionary defines the word chronic as:

“of long duration; continuing or lingering”

If taken literally in context with the word travel, a healthy person reading this might think this post is about travel of a long duration. Not so. In this case, chronic refers to the medical conditions the traveler (in this case me) has.


This post is about when travel and chronic illness intersect. Needless to say, chronic conditions can make it more challenging to plan, execute, and recover from a trip. Any chronically ill patient daring enough to attempt travel despite the many barriers and difficulties involved can testify to the fact that traveling when chronically ill can be very challenging.

What happens when you leave your “safe place”? What happens when you are away from the “comforts of home” if you are ill to the point where the “comforts of home” aren’t just luxuries but necessities? What happens if you forget any necessities at home? What happens if issues come up during your trip that result in you wondering if you can continue? What if you begin to seriously consider going home early due to medical issues?


In addition to the inherent complications that can accompany chronically ill travel, our recent trip was scheduled at the last minute. Due to the nature of my husband’s job, we weren’t sure if there was going to be a trip. He provides 24/7 support and is oncall 365 days a year. Our potential destination was a mere 2.5 hours away and we knew if we went he’d need to take his laptop and wear his cell phone. So, work would be able to call or email him at any time and if things really got ugly, we’d have to bail on the trip and head home so he could go in to work.

The good news was that I got word from him to go ahead and book a place to stay (for a mini-vacation of 3 nights and 4 days). Needless to say, this wasn’t much notice to find a place during peak summer tourism. Another challenge for finding a place to stay on 24 hours’ notice is that my multiple chemical sensitivity (MCS) prevents me from just randomly picking a hotel. Virtually all of the major hotel chains use harsh cleaning products and other chemicals to which I would surely react.


To make a very long story short, I looked into all of the options I could find in the area we were going to be visiting and decided that we’d be much better off at a Bed & Breakfast than at a major hotel chain. The list of things I react to in hotels is too long to even mention. So, I researched online and came up with a couple of Bed & Breakfasts in the area we were visiting. Bear in mind that I was calling around on 24 hours notice because my husband didn’t know if he’d be able to get away for 3-4 days until the last minute. (In all the time he has worked at this job, he has worked 7 days a week, on call 24/7 for 365 days/year. So 3-4 days away was a big deal). Yes, he logged into work on both Thanksgiving and Christmas. It’s just that kind of job.

So, he gave me the green light to book a place to stay. I called the Bed & Breakfast that looked the best to me and they only had one of the 3 nights we needed available. I called the second Bed & Breakfast and they had a room that was available for all three nights. I quizzed the B & B owner about whether smoking was allowed anywhere in the house. (A no smoking room does me no good if the next room over allows smoking. I’ve been in hotels that are like that).

She assured me that there was no smoking anywhere in the house. She then indicated that guests are permitted to smoke outside on the porch but she said that most of their guests don’t smoke. While I wasn’t thrilled with the idea that there might be people smoking on the porch, we had less than 24 hours to find a place and all of the other options I had looked into online (which were many) were worse.


So, I decided that if I had to hold my breath and walk quickly in and out of the house, it would be no different than when I do the same thing to get into my doctor’s office. (By the way, that doctor’s office is on a smoke-free university campus where there is supposedly no smoking anywhere on the university’s property, including its parking lots, but it’s not enforced. So the many large signs proclaiming it a no-smoking campus are useless and people smoke right outside doors to the cancer clinic. But I digress).

In any event, this is clearly too long for just one post. So I will pick up where I am leaving off here in the next post. I’d like to end on a positive note, though, because the trip did have its nice moments and because I don’t want to lower anyone’s spirits. There were definitely peaceful, positive moments amidst the challenges I’ll be blogging about in a future post (or posts?)


Due to some circumstances which I’ll write about in an upcoming post, I spent more time on the beach and less time in the water than I had planned. While this was not what I had planned or wanted, it did give me an opportunity to take things in and simply observe. This was peaceful in its own way. I got to see things I might have missed if I was out in the water. I loved the colors in this scene above with the empty lifeguard chair. It just looked really pretty to me. The picture above was among my favorite pictures from the trip. I will be blogging more about chronic travel in an upcoming post (or posts). There you’ll get to hear about my “adventures”. It has been a week and a half since the trip and I am still recovering. So it’s taking me longer to blog about the trip than I had planned but I need to listen to my body and pace myself accordingly. So look for my “adventures” coming up soon.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Chronic Travel


1 KerryNo Gravatar { 09.02.09 at 3:57 pm }

Hi Jeanne, You’ve said it so well…how hard it is to find a toxic chemically free hotel room when one has MCS! I have had to leave hotels immediately after arriving in our room due to chemical bombardment. I am happy when we find hotels that do not use dryer sheets/fabric softeners/ and perfumed detergent on their sheets.

It will be a happy day for us when MCS awareness grows and more and more hotels have not only “no smoking” signs, but no “toxic chemical products used here” signs. It will be a long time, but I love to imagine it and believe that one day the dangers of the non-FDA approved toxic ingredients in cleaning agents, laundry agents, perfumes, etc…will be understood as we now understand the dangers of smoking.

Looking forward to hearing how your trip went Jeanne. Curious about the B and B and what the smoking/ chemical situation was actually like.

2 JeanneNo Gravatar { 09.02.09 at 4:42 pm }

Hi Kerry,

Thanks. It really is quite a feat to find a safe place to stay when one has MCS!

One time we went to meet up with relatives who were staying in a hotel while they were up North visiting a variety of people. We happened to get to the hotel a couple of minutes before they did. So, when they arrived we went in with them while they checked in — to chat since we hadn’t seen them in awhile. Well, I didn’t even make it through check-in. The smell was so strong I had to bail. I quietly informed my husband I’d meet him outside and got the heck out of there.

It was the most incredibly strong mixture of smells imaginable! There was the smell of various (strong!) cleaning products in the air, floor wax, and then this hotel had an indoor pool… right by the front door. The chlorine smell was so strong! I literally couldn’t stay in the building for more than the amount of time I was in there (it was less than a minute for sure). There was also a laundry detergent smell in the air. It was just a complete bombardment of smells! It was strong enough that I am amazed that even people without MCS could stand it. It was that bad. I can’t begin to imagine how people can tolerate working there and being exposed to those chemicals all the time. It was just terrible.

Your comment touched on a topic that will definitely be coming up! I long for the day when, like you mentioned, there will be MCS-friendly hotels just as there are no smoking hotels now. I agree it will be a long time but with the huge numbers of people getting diagnosed with MCS, I do believe the day will come. There are already government bodies that post “fragrance free” signs on the doors into meetings and such. More and more people are becoming aware of a problem that affects a large number of people. Yes, I believe awareness will increase over time and things will get better as far as MCS patients being able to find safe places to go. It’s not going to happen overnight.

I really think you’ll enjoy the upcoming tale about the B & B and the smoking/chemical situation. So stay tuned because I’m sure you’ll find it most interesting!


3 YayaNo Gravatar { 09.02.09 at 6:05 pm }

I SO know what you mean. As you know we traveled the other weekend too and I’m just now recuperated from it. Sleeping at my Grandma’s house was near h*ll. She hadn’t cleaned in forever so there was an inch of dust everywhere and the bed was as hard as a rock, etc etc. I didn’t sleep and ended up with shooting pains in my back for over a week (went to chiropractor last night…feeling better now). And now I’m planning on going to Maryland to meet my new nephew next weekend and I’m already gearing up for the after-effects. It might be somewhat better with this trip. Our last trip equalled a lot of sitting in the car time because of it being a road trip, but this upcoming one is flying. Could be better, maybe worse…hard to tell.
So much effects me when traveling. First my OCD kicks and causes travel anxiety (change in routine/preparation overwhelming). Then the act of traveling (sitting so long) and then sleeping somewhere different (itchy sheets, etc). Oy.
…sorry I rambled….
.-= Yaya´s last blog ..Schism =-.

4 JeanneNo Gravatar { 09.02.09 at 6:54 pm }


Yes, you and I were both traveling out-of-state the same weekend and I had a notion you are probably still recovering too. I’m sorry you had all of those issues.

Wow. You’re gearing up for another trip already? You’re brave. 🙂

Seriously, that’s great that you’re going to get to see your nephew. Hopefully traveling will be easier this time around.

Yes, I remember you mentioning pre-travel anxiety before. As you said, the traveling itself has issues (i.e. sitting for prolonged periods is a perfect example). SPOILER ALERT: I will comment more about the issues you brought up with the sheets in a future post. Let’s just say I TOTALLY get it!

You didn’t ramble at all. You did a great job giving some specific examples of issues that make travel challenging for people with chronic conditions.


5 Jannie FunsterNo Gravatar { 09.02.09 at 8:48 pm }

The way you describe the beach is just too relaxing. I too love observing from the shore, more than swimming or being on a boat.

And I liked your digression. People are so rude, to say the very least for smoking in non-smoking areas.
.-= Jannie Funster´s last blog ..Ridiculously Green — Austin’s “Ladybird Lake” Hike & Bike Trail =-.

6 Teresa @ Too Many HeartbeatsNo Gravatar { 09.02.09 at 10:00 pm }

This is very timely because we desperately want to go on one more family vacation before our 17 year daughter who is a senior this year goes off to college next fall. With me being homebound and basically bedridden, this is going to be very difficult to plan. I look forward to reading EVERYTHING you have to say.

Hope you are doing well


Teresa <

30 Things You May Not Know…
.-= Teresa @ Too Many Heartbeats´s last blog ..30 THINGS ABOUT MY ILLNESS YOU MAY NOT KNOW =-.

7 JeanneNo Gravatar { 09.02.09 at 11:48 pm }


Yes, it ended up being OK just to be in observer mode for most of our beach time. The general concept of staying ashore vs. being out on the water is not so bad in and of itself.

The trick with this trip was that it was the first family vacation we’ve ever taken. (I am not including trips where we’ve gone and visited relatives. I’m defining a “family vacation” as the three of us going on a trip somewhere beyond a mere day trip). Considering our daughter is almost 9 years old and we finally took such a trip, I had some ideas in my head about how the time would be spent… as did my husband.

If it hadn’t been for this, I wouldn’t have cared so much about being “stuck” up on the shore. It just so happened that I ended up involuntarily “playing spectator” for a good portion of the beach-centered trip (for reasons which will become apparent when I continue past this post). Since I spend large quantities of my daily life in spectator mode, this was a massive disappointment. We purposely picked activities we thought I’d be able to do and it still backfired.

Honestly, I’ve been swimming in the lake enough times for a lifetime and I have also been on enough boat rides to satisfy me for life. This was about my daughter, really. The reason I was disappointed about not joining my husband and daughter for boogie-board time and such was that the whole point was for all of us to do these activities together! 🙁

Instead, my body betrayed me. While I should be incredibly accustomed to this by now, it still hit me pretty hard this time because of the fact that it took us almost 9 years to get a trip to even happen (between financial barriers, my husband’s work schedule, and my illnesses… plus the fact that any measly time off my husband has gotten from work over the years typically gets used for traveling to see relatives, if we travel anywhere at all, which isn’t often)! So, I guess you could say there was a lot riding on this trip!!

Back to focusing on the positive… I really did enjoy taking it all in, getting some great pictures of my husband and daughter, and simply trying to enjoy the present moment. I tried hard not to let my body ruin everything. This took massive effort on my part because I was really upset. (Again, I’ll be blogging about this in more detail coming up).

My least favorite part of the beach was the number of times we had to move our things (chairs, towels, sand toys, sunscreen bottle, etc… “the works”) due to people smoking a few feet away. U-G-H! I swear I have some sort of magnet that draws all of the smokers to me! My husband, of course, then got annoyed with me and said, “it’ll happen again wherever you move to… just deal with it”. (This was where I carefully resisted the urge to strangle my Dear Husband). God love him but he just doesn’t “get” that cigarette smoke is far more than an annoyance for me! The smoke makes me very, very sick!

It’s not that my husband doesn’t care. He does. I think there’s a part of him that just somehow can’t accept how profoundly something like cigarette smoke affects me because he has some degree of denial going on about certain aspects of my health. I’m not faulting him for it. I think such denial helps him get through things with my illnesses that he wouldn’t otherwise! Unfortunately, with a situation like the beach smoke… this “denial” (for lack of a better term) leaves him feeling less inclined to simply move the stuff away from the people smoking. This sets up a potential argument between the two of us about it. It’s just not fun!

As far as the people who smoke at the university where my doctor’s appointments are is concerned, don’t even get me started! There have always been smokers in that area from the parking lot to the hospital doors. However, once the university put up a zillion signs about how the university campus (including the hospital) is now 100% no-smoking… there suddenly were far MORE smokers out and about!!

I will never forget the day of my 1st appointment after the no-smoking policy took effect. There were so, so, so many smokers milling around between the parking lot and the hospital entrance door I go in to see my doctor. I think they must have organized a protest of the new policy or something. All I know is that there were far, far more smokers out than any time in the 7 years I had been regularly seeing a doctor there prior.

There was no one enforcing the new rules. The signs seemed to have ticked off a whole slew of smokers who were smoking there in rebellion. It was just awful! To this day, there are more smokers there than before the ban. Personally, if the university had no plan to enforce the policy… I wish they had never posted it because it only made matters much worse. The cancer center is one set of doors down from mine. There are just as many smokers by that door. It makes me very, very sad/mad that cancer patients have to walk through clouds of smoke to get in and out of their treatment. Honestly, should cancer patients have to walk through clouds of cancer-causing agents to get into the cancer center? Don’t get me started…

Jannie, that was the short version. Believe it or not, I gave you the abbreviated tale. Someday, I’ll fill you in on my “discussion” with one of the smokers I encountered (on my way back to the car that first day that appeared to have been a “protest day”). Let’s just say I got pretty feisty that day!


8 JeanneNo Gravatar { 09.03.09 at 1:42 am }


As I mentioned in my comments to Jannie, I have some understanding of the whole notion of wanting to do a family vacation for the sake of the child(ren) of the family and then feeling badly when things don’t always turn out as hoped for. (My daughter’s younger than yours but this was our first such trip – and she’s almost 9). If we had more time to properly plan things, it would have helped in some aspects. Other issues would have cropped up no matter what we did. More details to follow after this post…

I’m hanging in there. I’m very drained from just that 3 nights and 4 days out of town. So I am recovering at this point.


P.S. I just sent you twitter messages about an issue with how your blog comments are showing up on my blog. It might help your comments get processed faster. 🙂

9 EndochickNo Gravatar { 09.03.09 at 10:02 am }

I understand what you mean by just jumping in your car and going with these chronic illnesses’. It’s tough to nearly impossible to do. I’ve always wanted to stay in a Bed and Breakfast and plan on doing so possibly next year for my husband and I’s 10th anniversary.

My dad wants to plan an impromptu trip for him and my step-mom. She’s ill and needing open-heart surgery and having two valves replaced. She’s very nervous and depressed over it, and rightly so. He thinks this will get her mind off of it, but she’s not really in the condition to just hop in the car and take off! She has her medicine (as does he) and her oxygen tank (as does he). They both have chronic medical conditions that are dangerous, and they really shouldn’t go off alone like that. I don’t think he’s going to listen. Ugh.

When you’re chronically ill, travelling tires you out. You have extra precautions you need to take, etc. There are things to consider. Sometimes you wonder, is this even worth it. Hopefully, your trip was worth it.

10 JeanneNo Gravatar { 09.03.09 at 6:17 pm }


The days of just jumping in the car and going passed a long time ago for me. This short-notice trip was about as close as I get to that… and we paid some consequences for it (see the post/s not yet published for more details). I hope you and your husband get to find a nice B & B for your 10th anniversary. With your migraine issues, I’d quiz them about fragrances and other triggers when booking a place.

Your dad sounds like his intentions are good but I can certainly see why your mom is wary of such a trip, given the fact that both of them are having serious health problems. The trip is not going to be enjoyable for her if he twists her arm to go. Hopefully they can find some sort of compromise that will be safer for both of them and more enjoyable for your mom. I feel for your dad but I hear your concerns and it sounds like your mom has some valid reasons for not wanting to travel like that at this time. I know your dad had surgery recently too.

Yes, everyone I know who has a chronic illness (or many) gets worn out by travel. There are certainly extra precautions to take and such. It’s more difficult to plan, execute, and recover. I hear what you are saying with the “is this even worth it”? Honestly, there were times during our trip where that exact thought crossed my mind. As to whether this trip was worth it, I would like to think the answer is yes. If I am in a positive thinking mood and can focus on the better aspects of the trip, I can say… “yes, it was definitely worth the effort”. If I am in a more negative place, I might be slower to give that same answer.

That said… Despite the challenges we faced on this trip, I do think it was worth it overall. This for the simple fact that for the first time in almost 9 years on this planet for my daughter… my family (my husband, my daughter, and me) went on a “family vacation” (albeit just a 3 night, 4 day one… a mere 2.5 hours away from home). Just the fact that my 8 year old daughter FINALLY got to go on a trip with her parents… not a trip to visit relatives or go somewhere where we were “expected”… but simply to travel somewhere together, just the 3 of us, without any reason other than to have time together and get a change of scenery… I think that we learned some lessons with this trip that, hopefully, will better enable us to plan future trips.

I know that it’s not my fault that I’m sick… just as my husband can’t control his intense work schedule. It was no one’s fault that many years passed where it was just financially impossible to go anywhere (i.e. the gas money alone would have been too much… much less the Bed & Breakfast). One could argue we couldn’t afford to go on a trip this year — but we did it anyway. Those obstacles (above) were no one’s fault…

However, I do feel guilt that it took us until she was 8 years old to FINALLY put together a trip for just the 3 of us, with no visiting of relatives. I feel guilt because when I was growing up we had family vacations every summer (and sometimes other parts of the year too). I really don’t want her to grow up and look back and feel cheated. So part of the purpose of this trip was to lay the groundwork for future trips. We needed to “get one under our belts”. I am hoping to be able to do some sort of trip each summer.

Maybe I am out of my mind to dream of such a thing! The thing is that for all our troubles on this trip… I truly believe 90% of what my daughter remembers of the trip is how fun it was to do this or that. So even though my husband and I are comparing the trip to ones we took as kids and thinking about its deficiencies, to my daughter (who is not used to such trips at all), it was pretty darn good! Sure, she knows we had some problems on it. However, her sunny spirit fits all of that garbage into that 10% I mentioned. So the same exact problems might have racked up a much higher number for my husband or me but just 10% for her.

The #1 main purpose of this trip was to have a family vacation… especially for our daughter’s sake. So, if there were problems or headaches with it (where there were!), it was still all worth it if she had fun. Since she had fun, I’d have to say the answer is, yes, it was all worth it. That’s the criteria I’m using to define “worth it”. She had fun. So, it was worth it. Was it the best vacation I’ve ever had, in the traditional definition (relaxing, best sightseeing, learning history…)? Hardly. Not even close. Was it the best vacation I ever had because it is the only one I’ve ever taken with her (not counting trips to visit relatives that had some “vacation” component to them)? Yes.

It was the best in the sense that we got to set out, the three of us, and make some happy memories together away from home on a trip.

Whew! Did I answer your question on whether it was worth it? I know it was a long answer but it’s a loaded topic. I am just grateful for the fun parts we had and I am going to try to block the other parts out of my memory. 🙂 Seriously, there were some very non-fun parts of the trip but I want to focus on the good ones!


11 ElizabethNo Gravatar { 09.03.09 at 6:53 pm }

I haven’t been able to get away much lately since the constant migraine – before the constant migraine I found that when I did get away I could relax more and had less symptoms and migraines.

Last year we spent 4 days in New York – part of my husband’s birthday present was tickets to see the Yankees in the stadium before the tore it down. He’s a big Yankees fan. I wasn’t able to do as much as I used to but I was able to do things every day and didn’t push myself. We didn’t get to do everything that we wanted to but we got to do enough and we were happy and relaxed and my symptoms were diminished somewhat from the change of scenery and away from the stress here at home – I have bad stress triggers.

We did get away for a weekend to Denver a month ago and saw my grandparents and a concert. The 10 hour drive both ways did me no good – the concert did me no good, but relaxing with my grandparents was relaxing and migraine let me have that.

The vacation before my constant pain state I was getting 5 migraines a month and lasting 4-5 days each – almost constant. But we were away for 10 days and only suffered migraine the last 2.

I think a relaxing vacation is the key, no over planning or over committing to things you’ll get done or want to see. Let yourself go with the flow and not get upset if you don’t feel well enough to do something one day.

.-= Elizabeth´s last blog ..Babysitting nephews =-.

12 JeanneNo Gravatar { 09.04.09 at 2:03 am }


Sorry you haven’t been able to get away very recently. I’m glad that when you did manage to get away it helped your migraines, though.

I’m glad you and your husband had fun in New York. That’s awesome that you were able to do things every day, not push yourself, and have fun. I’m glad your symptoms diminished when you got away from stress triggers.

It’s too bad the extensive driving time to Denver did you no good. I can imagine with your migraines that a concert may not have been what the doctor ordered. I’m glad you were able to relax with your grandparents, though.

Getting 5 migraines a month for 4-5 days apiece really didn’t give you much of a breather, huh? I’m sorry. I’m glad you had just 2 days out of that 10.

I agree that over-planning and over-committing to things sets us up for trouble. I agree that it’s important to be prepared to “go with the flow” on trips and not get fixated on one or more activities that may or may not happen.


13 IVF Breakthrough? — { 09.04.09 at 1:09 pm }

[…] will be resuming my posts on traveling when chronically ill shortly. See the first such post here: Chronic Travel. My energy level is still quite low and I have not finished the next travel post. Stay tuned as it […]

14 Food Poisoning? — { 09.06.09 at 12:31 pm }

[…] It appears that I got food poisoning yesterday. I feel better now than I did yesterday but I still feel very ill. So, I’m not sure when I’ll be up to blogging again but I haven’t forgotten that some of you are waiting to hear more about Chronic Travel. […]

15 Dorian aka coffeesister |_|)No Gravatar { 09.09.09 at 2:10 am }

I gave my G’ma a mug proclaiming she could be proud of me if she’d just “lower her expectations.” She reassured me it wasn’t necessary but I pointed out that expectations can get in the way. Lowering our expectations doesn’t mean we’ll try any less but does give us less chance of disappointment. This is especially true of travel & my hope is that you not only feel more prepared for the next trip, having gotten “one under your belts,” but that you learned not to second-guess the shape that trip should take. Taking the trip is all that really matters. There is no other criteria to be had than whether your daughter had fun. Kudos on what was indeed a success (if not an easily won one)!

This lack of expectation is crucial in our everyday lives as well. Ill or not, goals can actually undo progress if the focus becomes the end rather than the means. Yes, I’m a proponent that it’s the journey — not the destination — that matters. Besides, G’ma would also remind us that “the hurrier you go, the behinder you get.” It’s not that I don’t set daily goals or get über-focused at times, it’s that I’ve learned to let go of the outcome & just enjoy the process; reveling in whatever is accomplished along the way. After all, we gotta take what we can get. 😮

“Disillusion comes only to the illusioned. One cannot be disillusioned of what one never put faith in.” ~ Dorothy Thompson

PS: Let’s put our faith in cups that are even a quarter full, no matter how empty, & bodies that do function, even if they’re not functional; relying on hope but not waiting for fulfilled hopes to be happy. 😕

PPS: My G’ma has left this world, she was my soul-mate, I’ve chosen the post I wrote after her death to be the one linked below..
.-= Dorian aka coffeesister |_|)´s last blog ..YOU so silly! =-.

16 JeanneNo Gravatar { 09.12.09 at 12:03 am }


I apologize for it taking a couple of days to post this but I wanted to do your reply justice. I totally agree with you that “unrealistic expectations” (for lack of a better wording) can be a fast road to disappointment! I know this phenomenon isn’t exclusive to travel by any means. For example, how many families have tension/stress at holiday time because unrealistic expectations set people up for failure/disappointment/hurt feelings? Yes, I hope getting one “under our belts” will help down the road. Absolutely, her having fun is all that really matters in this case.

I agree. This quote, “Yes, I’m a proponent that it’s the journey — not the destination — that matters” reminds me of a James Taylor song I can’t remember the name of. (I can just picture him singing something about “the secret to life”… and “you might as well enjoy the ride”). Living in the present moment (as my acupuncturist emphasizes) is really important.

Great quote, as always…


P.S. Love the PS about cups, @coffeesister!

P.P.S. I will definitely have to check out your post about your grandmother.

Thank you, as always, for an insightful comment. 🙂

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