The problem with the “don’t make events about food” advice

February 22, 2022

Maybe you have celiac disease or another food restriction like me, or maybe you have another limitation that causes issues for you at social gatherings. If so, you’ll relate to this. And if that’s not you, this may put things in a slightly different perspective for you.

I grew up in a family that made a big deal out of food. Holidays, were always about food. I get it, that’s how Jewish holidays are. Challah, hamentaschen, wine, matzo ball soup, latkes, and kugels were all staples. Thanksgiving had turkey, pies, potatoes, and kugels. When we visited family out of state or they visited us, it was all about the food. We thought about it, talked about it, spent lots of time preparing it, and of course, enjoyed eating it. As I grew up, I often felt sick after (or during) these events, but I often felt sick after (or during) a normal meal anyway, so it’s not like these were any better or worse. It wasn’t until my 30s that I stopped eating gluten.

Image credit Heartland Mom on Pixabay

I have often wondered how my grandmother would have handled things if she’d still been alive when I went gluten-free. She was the stereotypical Jewish grandmother, always cooking and baking, expressing her love through food. We would arrive at her house after a several hours long drive, having stopped for lunch on the way. She would ask if we wanted food when we arrived and we’d say no, we’d already eaten, so she would put out a “snack”. It was a large snack! Then a few hours later dinner would consist of chicken, brisket, at least 2 kugels, challah, salad, and more, along with multiple desserts – for only 6 people! I’d like to think she’d have found a way to adapt her meals for me, but I know she wouldn’t have stopped focusing on them.

The surprising (at first) thing with eliminating gluten is that it doesn’t only effect what we eat, it effects our social lives. Dates are tricky when I can only eat at certain restaurants. Going out with friends is tough when we can’t spontaneously grab food while we’re out. Attending weddings, bar mitzvahs, and other events is frustrating when I can’t eat the food provided. Multiple surveys have shown that the social aspects are the hardest part of living with celiac disease. So the advice that we hear over and over is logical: don’t make events about food, make them about people. And after all, shouldn’t we all be doing that anyway?

I get it. If the focus at Thanksgiving is the people instead of the table of food, then the people who can’t eat all of the food, and who might be nervous about the food, can still have a great time. If the Passover sedar is about the people and the prayers and we let the matzo ball soup and brisket be secondary (or even tertiary) incidentals, anyone with food restrictions will have a better time. It makes sense.

People > Food.

It took me many years to figure out why that advice felt off to me.

I remember a family vacation. We were in a big rented house, and I had been careful to cook food in advance. It was annoying to have to do this, and definitely took away from some of the fun, but it was fine. There was one night when everyone wanted to eat at a fancy restaurant. The family had been to this city many times over many years and loved this place. I’d only been once and, frankly, I hadn’t thought it was so wonderful, but whatever, I’d have been willing to go back. The thing is, they didn’t have anything gluten-free. My choices were to go there and not eat, or not go. I chose to not go. I found another restaurant in town that had gluten-free food and my mom chose to join me. My mom and I had a fantastic time, actually. We walked around town and had one of the best meals we’d ever had together. The food was amazing, the ambience gorgeous, the company perfect. My dad, aunt, uncle, cousins, and cousin’s wife all went to the other restaurant, and I won’t pretend I wasn’t hurt. I understand they liked this place and wanted to go, but it hurt me that they didn’t place my feelings and their desire to be with me above their desire to eat at a specific restaurant. They talked about it a lot in advance and a lot afterwards, too.

Holidays and family gatherings have been different since I went gluten-free. When my mother hosts, she makes sure the meal is either completely or mostly gluten-free, with any gluten foods kept separate and reminders to all to keep their serving spoons away from other foods. Accommodations vary when others host. But either way, it’s still about the food, and food is still stressful. Even when the meal is 100% gluten free, I no longer get any joy from focusing on food. It’s simply associated too much with negative things for me. Plus, the talk about the food isn’t limited to the food on the table, and that’s even more stressful. I am immensely grateful that my mother goes out of her way to make me feel comfortable eating the food at her events, but I still wish we could focus less on the food altogether.

As for me hosting a family event, that’s not likely to happen. For one thing, my apartment is small and I don’t have a lot of space. But for another, I have no desire to host. Some people love to cook, decorate, and have lots of people over for a party. That’s not me, and it never has been. Plus, even if I wanted to do that, I don’t have the energy for it. I can cook a meal OR attend a gathering, but I certainly can’t do both, never mind hosting duties. When I go to someone else’s home and bring food with me, it’s always something that can be prepared a day or two in advance because doing it the same day is too exhausting for me.

But let’s be realistic. Even if I could find a way to host, there would still be the issue that the gathering would be all about the food because I might be able to change the circumstances, but I can’t change the people. As soon as they walked in they would ask what we were eating, and the conversation would often turn back to food throughout the gathering. If I made all of the food then I wouldn’t be worried about that food in particular, but I still don’t like these conversations. Inevitably people talk about other foods and about restaurants, and at best none of this is enjoyable to me, at worst it upsets me, triggering all sorts of past trauma.

I don’t have a solution. This is something I’m continuing to work on for the sake of my own mental health. I can talk to my family about it and maybe they will occasionally make an effort, at least some of them would, but I know that most would not even try, or they would soon forget. This is ingrained and it’s something they enjoy. I just wish the thing they enjoy so much wasn’t the thing that brings me the most grief.


Sometimes the bare minimum is plenty

November 13, 2021

I’ve been wanting to write for weeks but it’s just been too much. I’ve been having a really hard time lately.

Thanks to medication changes, my adrenals aren’t being properly supported, so I have both less energy and lower tolerance for handling stress. And in a few days I have a colonoscopy and endoscopy.

Colonoscopies aren’t a big deal for most people. Not that anyone loves getting them, but you just deal, right? Well, thanks to a decades-long history of medical trauma, medical procedures can be triggering for me. And thanks to decades of undiagnosed gastrointestinal symptoms, GI stuff is also triggering for me. So knowing that in two days I’m going to have to drink a formula that will probably make me throw up, and that will induce the kinds of GI symptoms that I’ve struggled with for most of my life, followed by a medical procedure, where I’ll be up close with people during a pandemic…. yeah, my anxiety is at an all-time high.

Logically, I know it will be all be fine. But logic isn’t helping. My therapist gave me some breathing and thought exercises which help, and I’m just trying to make it through this period. It’s rough.

To make it a little easier, I’m doing a few things that I don’t usually do:

  • I cried. I spent a lot of my life learning not to cry because if I did, people thoughtI was just trying to get attention. (Yup, as a 12-year-old with chronic pain, that’s what I was told by several doctors and teachers. Thankfully, my parents never thought that.) Now, I don’t cry easily. For a week I really felt the need to cry, but I couldn’t let it out. Finally, though, I cried. And then I sobbed. And then I sobbed some more. I cried a lot that day, and it helped a lot. I cried a bit yesterday. I’m still having trouble crying as much as I need to, but I’m working on it. It helps to let it all out.
  • I asked for help. I don’t do this often enough. I posted on my Facebook page, asking friends to make phone calls to manufacturers for me. I was trying to find a gluten-free version of the easier colonoscopy prep. I had made a few calls, but it’s so stressful. For one thing, making any of calls for gluten-free stuff is stressful and exhausting and I’m tired of doing it. But then, doing it for this purpose…. it was just too much. A fabulous friend did the research. She called everyplace on my list, then did more research to find more to add to the list. She struck out, but if she hadn’t called for me, then I would have felt like I had to, and I would have been upset with myself for “failing”, thinking that maybe if I’d made the calls it could have been easier.
  • I asked for help again. Several friends had volunteered to help with the calls, so when that friend struck out, I asked for more calls. Since I couldn’t get the easier prep, I wanted to get an anti-nausea pill to help with the one I’ll be doing. Again, I needed something gluten-free. Three people called pharmacies all over my area to ask which manufacturers they used for this med (there are quite a few who make it), and then called those manufacturers to ask if the med was gluten-free. Again, they struck out. But again, if they hadn’t done it then I would have felt like I had to. It was so great of them to make those calls.
  • I asked to borrow a puppy. No, really! I have neighbors with two of the sweetest, most adorable puppies. Both are house-trained and don’t chew on stuff, so they’re not too hard to watch. I asked if I could borrow one, and the timing worked out that I took one for an hour. He cheered me up SO MUCH! Dogs are great medicine. Normally I would have felt silly asking, but I’m glad I did. And they were glad their dogs could help.
  • I’m giving myself a break. My to-do list is short right now. Really short. And even then I know it’s ok if I don’t get most of it done. In a typical week this amount would be easy to do (my list is usually twice as long), but not now. For example, today’s list is: laundry (already in the machine – win!), vacuum (if it doesn’t happen, that’s ok), prepare some work for my volunteer gig (they know I’m struggling and that I may have to cancel tomorrow’s meeting if I can’t get it done, but I think it will be doable), walk (fresh air is good for me), and watch YouTube videos while relaxing with my knitting. My hope is to get everything done before lunch except the last two. That way, I won’t have anything I need to do this afternoon except enjoy a walk and relax on the couch. And honestly, the vacuuming is unlikely. And that’s ok. The rest of my week is even easier than today.
  • I’m avoiding anything emotionally taxing. When a friend brings up a stressful topic that isn’t necessary to discuss, I ask to change the subject. Stressful movies and books are on hold. I’m keeping it as light and easy as possible. Last night I watched an animated Disney movie and that was perfect.

Is this all enough to make me feel great? No, of course not. But it’s enough to make me not feel worse, and that’s a win. I’ll keep spending time with dogs, watching easy movies, doing my crafts. I’ll keep my to-do list short. I’ll ask for help. I’ll spend time with dogs. (Oh, did I say that twice?)

In a few days, after the colonoscopy, I’ll feel better. Once my medication is back to working properly, I’ll feel even better. (I tried to time things so that it would be back before the colonoscopy, but my doctors were really slow to get back to me about how to proceed after we got the test results.) This isn’t the post I planned to write. That one has to wait. And again, that’s ok. But it’s one that felt right to write. We all have times where we’re struggling more than usual, and it’s ok to do the bare minimum for a while. That’s definitely my plan for now.


Traveling on Amtrak with a disability

December 29, 2018

Travel is often tricky when you have a disability. Maybe you can’t lift your suitcase into the overhead bin on an airplane or you need to make frequent stops on a car trip. Whatever the issue, there are a lot of unknowns. So I thought I would tell you about my experiences on Amtrak recently. Obviously these are only my own experiences, and I’m sure it will be different for everyone. Still, I learned a lot.

I mentioned in last week’s post that I recently took my first week-long trip since I got really sick about 8 years ago. That was a big deal! So as you can imagine, I was very nervous. I am thrilled to say that it went very well, and you can (and should!) read all about it. The first thing I did was get on a train to Philadelphia, and I’m happy to say that despite my nerves, that went very well, too. So here’s my experience, mostly good, with a few bumps.

2018-12-15 Leaving NY

My view as I left New York

The first thing that happened, of course, is that I made reservations. I spent a while considering my options. I didn’t have a lot of flexibility on the dates. I looked at all of the trains. Some were high speed and some weren’t. Some business class tickets were almost as cheap as coach tickets. But timing was important. I didn’t want to go too early, since I knew I would need a lot of time to get ready without stressing out too much, and I didn’t want to arrive too late. I noticed in poking around on the web site that I could enter that I had a disability and I would get a reduced price fare! I was definitely taking price into account, so that made a difference. Some fares had huge discounts and some weren’t discounted at all if they were already really cheap tickets. For example, my trip from Philadelphia to New York was $39 without a discount – I wasn’t about to complain about that! You can get info on the discounts here. There’s a list of documentation to prove you are disabled, but I was never asked for anything. I’m guessing that varies. Finally I chose my tickets and tried to book online, but had trouble. So I picked up the phone.

I was able to tell the agent on the phone exactly which tickets I wanted. And when I booked, I was clear that I needed a wheelchair at each station. She asked if I wanted accessible seating with extra leg room. I asked about the price and she said there was no extra charge. Wow! I hadn’t been expecting that. So I said yes, and I’m glad I did. But more on that later.

We made a reservation (which didn’t have to be paid for a few days) and I went on my merry way. Except I was having trouble figuring out how to get to the station in Boston. The last time I traveled by train I lived closer to the city. I posted on Facebook and asked friends how they suggested I get from the suburbs to the train station. Someone suggested that I leave from a different station. I would have to pay for parking, but since my plan had been to leave my car in a friend’s driveway and then take a cab or a Lyft into the city, the cost would be the same. It was perfect!

I called Amtrak to change the tickets. I hadn’t paid yet. The person on the phone pointed out that I had accessible seating on one leg of my trip, but not the other two (I was going Boston –> Philadelphia, Philly –> New York, and NY –> Boston.) The first person had screwed up and I wouldn’t have known until I got on the trains. In fairness, the confirmation had said it clearly, but I didn’t read it closely enough. Lesson learned! The person on the phone cancelled my old tickets in order to book new ones in accessible seats. Once those tickets were cancelled, the new ones popped up at that day’s prices – and ended up costing me $100 extra! I was pissed, because they hadn’t told me. She assured me that when a new ticket opened up at the lower price, I would get it. I was still pissed. I told her that shouldn’t have happened. I was taking the same trains at the same times as before. The accessible seating mistake was the agent’s fault, not mine. She insisted she couldn’t do anything, but that she would get me a lower price. What could I do? I booked another reservation. In the end, she was right. 2 days later I got an email saying I had tickets at the original price. I had worried for nothing. If that hadn’t worked out I would have made a bigger stink about it, because really, it wasn’t my fault they hadn’t given me accessible seating in the first place. Anyway, I paid and then got ready for my trip.

The suburban station I left from was tiny. I got a disabled parking space in the garage (I have a placard) and schlepped my stuff inside. Here’s where I made my first mistake. I went to the agent and got my tickets. He asked if I really needed a wheelchair, since it was a small station. That was an inappropriate question that he should never have asked! And I made the mistake of saying I was fine. The station was tiny and I got to the seating area just fine. But getting my stuff up the ramp to the train platform later, though not far, was too much. I should have asked for luggage assistance, but I didn’t know that was a thing. I asked how I would find accessible seating. He assured me that the conductor would be looking for me and would help me. That part went well. The conductor carried my suitcase onto the train like it weighed nothing and found me an empty accessible seat. The seat next to me was empty, which was nice.

Later, another conductor came by to check tickets. He asked if I really needed the accessible seating and I said yes, and told him I would need a wheelchair in Philly. He didn’t blink. He didn’t ask for proof. He simply told me he wouldn’t be on the train there, but would leave a clear note above my seat (where they place the tickets) for the next conductor, and the wheelchair would be waiting for me.

I read and ate and looked out the window and read some more as the miles passed. At one point an older couple got on the train. I heard the conductor explaining there were no accessible seats remaining on this train and next time they should reserve one. I felt bad, even though I had no reason to. They sat behind me.

More miles passed, and a family came up to me, a man and a woman holding a baby and pushing a stroller. They asked if they could have my seats so they would have room for the stroller. I started to say no, feeling horribly guilty (again, I shouldn’t have! And yet I did. Go figure.) Then the conductor (the same one who checked my ticket) came over and told them that I had reserved the accessible seating and they needed to leave the stroller in the luggage area up front and go find other seats. I was relieved and also impressed. I was also glad he happened to be in my car at the time. Later, he stopped by my seat to ask if I was doing ok, then said, “Can you believe some people? I can’t believe they would ask you to move out of accessible seating!” I appreciated his support and helpfulness. He had the perfect attitude. He was right! In their defense, the seats weren’t clearly labeled as been accessible seating. And of course, I don’t look disabled. Still.

Many times during the trip I brought my suitcase from that big empty area in front of me (big enough for a wheelchair) and put it a bit in front of my seat and propped up my legs on it. That made a huge difference for my knees and hips. Otherwise, I don’t know how I would have managed. Thank goodness I had the accessible seat! I also made sure to get up several time to walk a bit – that’s much easier on a train than on a plane, though there’s still swaying. I leaned against the luggage storage above the seats as I stretched, bringing my legs into the big open wheelchair space. It helped a lot, I think.

In New York we had a 15 minute scheduled wait. I walked around a bit on the train. The conductor told the couple behind me to wait, that he would get the wheelchair that hadn’t arrived yet. He assured them the train wouldn’t leave until he gave the word, and he wouldn’t do that until they had the wheelchair. I chatted with them while they waited and we had a nice time. The wheelchair came and they left. We were getting close!

Somewhere between NY and Philly I got tired and wasn’t feeling as well. At Philly, the conductor told me to wait in my seat for the wheelchair. It was only a minute before the wheelchair arrived. He helped me with my luggage. The red cap worker pushed the wheelchair with one hand and pulled my suitcase with the other. I told him I needed a cab so he brought me right to the cab area, to the ramp in the curb. He had the guy directing cabs send one up to the ramp. He put my suitcase in the trunk and asked if I needed help getting into the seat. I was VERY impressed.

The first leg went smoothly! What a relief!

Several days later it was time to go home. I found a red cap at the train station in Philly and told him I would need a wheelchair. They were all being used, but he assured me he would find one and would come get me when it was time. I was very early, so I read a book. But as the time came for my train, I got nervous. I got up and looked for the red cap, saying my train would leave in 5 minutes. And there were no wheelchairs. He assured me were fine. He pointed to a long line of people and said they were waiting for my same train, that it hadn’t arrived yet. Ok. I relaxed. But a minute later he was there with a wheelchair and he brought me and my luggage down to the platform.

This time there was someone next to me on the train, but I had accessible seating. It was only and hour and a half so I felt the seat wasn’t necessary, but I booked it to keep all of the tickets the same. And then part way through the trip my knee started to lock up and I became very grateful for the extra leg room! I propped my leg on my suitcase again and it made a huge difference! Another lesson learned – even for a shorter trip, I need that space.

And once again, the conductors and red caps handled my suitcase and assured me I would have a wheelchair in NY. Great!

Sure enough, in New York the wheelchair was waiting when we arrived. I told him I needed the subway and he not only brought me to the area, but pushed me to the ticket area so I could buy a ticket, and asked the person at the turnstiles where the elevator was. He made sure I had everything I needed, since he wasn’t allowed through the turnstiles. The elevator was right there, so I got down the platform easily. Again, everyone was friendly and helpful.

A couple days later, it was time to head home. This was the one part that didn’t go well. First, I had to walk through Penn Station to get to the Amtrak area. The station in the Boston suburbs is tiny. The station in Philly is big, but the Amtrak area is near the entrance. Penn Station is huge. I followed signs and didn’t get lost, but it was a long walk and I was in a lot of pain when I got there. I showed my ticket to get into the Amtrak waiting area and immediately found 2 empty seats, dropped my things in one, and plopped into the other. I had an hour before my train. I rested and ate part of my lunch. Then I finally went to the red caps and asked about getting a wheelchair. They told me they would find me. I went back to my seat and ate more and read my book.

A bit before my train, a red cap came over and checked in. He told me he just wanted to make sure he knew where I was sitting. That was reassuring. A few minutes later he came back with the wheelchair and a dolly carrying another suitcase. He added my suitcase. He was walking fast to the elevator with another passenger behind him. He asked if he was walking too fast. She said something about a problem with her foot making it hard to walk. He slowed down a bit.

We got to the elevator. People got off and the doors started to close. He opened them and got our luggage on, then came back to put on my wheelchair but the doors closed first! He swore and ran down the stairs, leaving the other passenger and me feeling bewildered. Another red cap walking by commented that he could have pulled the red emergency button to keep the doors open. When the doors opened again the elevator was…. empty! I expected to see the red cap with our luggage, but it was totally empty! The other passenger and I looked at each other and didn’t know what to do. The red cap came running back up the stairs and was upset to see the elevator closed. He berated the other passenger for not holding it open, while I asked about our luggage and said he’d taken it off the elevator and left it on the platform. Yikes! Now I didn’t know if our luggage was safe, and he had the nerve to get mad at this poor woman, even though he was the one to screw up. Why didn’t he just come back up with the elevator? Worst of all, he was muttering that now we might miss the train. WHAT!?!?

When the elevator came, this time he pulled the red emergency button. When we got down the platform he retrieved our luggage and took off practically at a run to get us on the train before it left. I was ok in the wheelchair, but I worried about the poor woman who was having trouble walking. She needed to get to the back of the train for the quiet car. The red cap put me and my luggage in the first car, then ran off. I only hope he put that poor woman in the wheelchair to get her to the back of the train!

That was a horrible experience, which is a shame, because everything else had gone really well. The train ride home was easy. I had the seat next to me empty again, and in fact most of the car was empty on a Saturday afternoon. I stretched and walked around as needed, and propped up my legs when I needed to. The conductor knew I needed a wheelchair, but I told him I might not, and I would know as we got closer. He checked in as we got closer to home and I told him I didn’t need a wheelchair, just help with my luggage. It was that tiny station again, and I knew I needed to stretch my legs after the trip and before my drive home, so I thought it would be a good idea to walk a little bit. The red cap was waiting for me at the station. He loaded my bags onto a luggage cart and we headed inside. I asked where I would pay for my parking and he said either at the nearby desk or when I left the garage. I asked if he minded waiting while I paid at the desk and he said not at all. We had a pleasant chat as we walked to my car. He even put my suitcase into the trunk, which I hadn’t expected!

As I drove home, I thought about how easy my return had been. In fact, the train travel in general had gone well. Except for that horrible time in New York’s Penn Station on the way home, everything with Amtrak had been fantastic. I can’t believe they give discounts for disabled passengers, free accessible seats (as long as they aren’t all booked,) and help with luggage whether or not someone needs a wheelchair. They might offer other services as well, but these were the only ones I needed.

So that’s my experience. Obviously, your mileage may vary, but I hope your travels go as well as mine did. In fact, they went well enough that I hope to take the train to New York again in a few months!


The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.