My life with Long-haul - Part 8

Part of the story that I have been dreading getting to...

Link to previous post in series - Part 7

Woof! I haven’t written a post in this series in 2.5 months. Sheesh! I guess I just needed a break from it. Living it every day can be enough for sure. But also, this is part of the story that I have been dreading spending energy to tell.

Ok, we left off where I finally made it to me being at home with my parents, in Southern IL. This brings us to the very end of November/beginning of Dec. 2021.

Not too much happened in regards to my long-haul for the next handful of months. At the time, I had decided I wasn’t ready to see any doctors again. For a few reasons: 1 - there was still so little research and so much unknown about this illness, it seemed like a waste of time and energy. 2 - I was on COBRA, but I had a $40 copay and was tired of paying $40 every time I saw someone who was wholly unhelpful. 3 - I was worn out from all the nonsense I had just gone through with the shitty doctors I talked about in previous posts. 4 - I just wanted to rest and not have to be anywhere and take the break that my body was craving. As such, I decided I would wait to start seeing doctors until after more concrete research had come out, or if I started getting worse.

My parents got all my stuff into storage. They took care of my cats. They set up my room. My mom cooked all my meals for me. And I just laid in bed for the most part. There were a couple of things that I had “on the books” that I still wanted to do when I first moved back. Several months earlier, before I had even come close to deciding I needed to move home, a friend of mine had bought me and her tickets to a concert, as a Christmas gift (the concert was in December, so she bought them much earlier in the year, but it was touted as my Christmas present.) I still really wanted to go to that concert with her. So, I made plans to go back up north to see it.

This illness doesn’t mean that you can’t do anything ever. It means you can’t do everything. Really, you can’t do much. But, you can do some things. Especially if you plan properly. And, I would advise that you do occasionally do fun things, otherwise the depression from having this illness and never doing anything fun will be unbearable.

I made plans to drive up to my friend’s house a couple of days before the concert. This gave me a day in bed at her house to recover from the drive. Then, the next day (the concert date), I rested all day. Then, the concert itself was Michael Bolton. You literally sit in your chair the whole time with all the other old people. So, it’s pretty chill. The next day, I laid in bed at her house the whole day to recover. The day after that, I drove home. Then the rest of the week I laid in bed and did nothing else. That was literally the only thing I was able to do that week. And I planned it accordingly. I was excited to still be able to go.

Then, I started receiving some comments about how it “looked like I was feeling better”, but it felt like it was in a way that was passive aggressive and incredulous. As if, because I went to a Michael Bolton concert, I was totally better and had been faking this or something. Just because people see one post that is a picture of me going to a concert, doesn’t mean I am all better. I didn’t post the other several days before and after that when I was in bed resting. Which is partly why I have started doing that since then. Because I want to bring total transparency and awareness to how “invisible” illnesses work. People should not make assumptions about people’s health when they are not living with them. We would never tell someone with cancer that they didn’t have cancer because they look healthy or because they went out and did something fun. We should not be telling people with chronic illnesses that they must not be sick because they did one thing in the span of 3 weeks.

Regardless, I had a nice time at the concert. After that, I enjoyed being home with my family at Christmas. I just spent a lot of time resting. Every 2-3 weeks, I managed to do something social. I went and got my hair done. I took my bestie out to dinner and a movie for her Christmas present. At the time, I didn’t realize I had social media “friends” who were watching me do something nice for myself every few weeks and judging it all and making assumptions about my life and illness. I naively assumed I was friends with people who had my best interest at heart and were happy to see me occasionally being able to do something to lift my spirits. The way I would have been for them if the situation was reversed.

January through March, I managed to do a couple of small social things a month, but spent the other 28 days of the month resting. One of the fun things I got to do was go to Memphis for a day with my bestie. Memphis is about 3 hours from where I live, so it’s not a bad drive. She had bought 2 tickets to see a musical in Memphis several months prior, and decided she would treat me to one of the tickets and a stay overnight. I drove and helped pay for gas and my meals while I was there. But, all in all, a pretty cheap trip for me. As April was approaching, I was hopeful I could manage a trip to Chicago with my mom. The reason being is because we had a lot of tickets to stuff.

Christmas 2019, my present to my mom was season tickets to Broadway in Chicago for the 2020 season. First show was at the end of March. LOLOLOLOLOL. We all know what happened there. Every last one of those 2020 shows was cancelled. Rescheduled for 2021. Cancelled. Rescheduled for 2022. Also, many months prior to my long-haul becoming so debilitating, I had also bought my mom and I tickets to see Fran Lebowitz speak in Chicago. Out of the 6 or 7 Broadway shows in the season, there were 2 that we REALLY wanted to see: Moulin Rouge and Six. Well, it just so happened that those were both scheduled the same month at different theaters. So, we lucked out, I could switch my tickets to see them both in the same week we were up there. We just so happened to be the same week that Franny was there! Yay!

I sold our tickets to the other musicals, and the shows we were seeing had been paid for a long ass time ago. We decided to rent an Airbnb, which was very reasonably priced, and cook most of our meals there to save money. Then we only had to eat out a couple of times. And when we did, it was cheaper places. Nothing fancy. I also made plans to meet up with a couple of friends while I was up there, and they graciously treated me to dinner when I did.

Again, I buffered the time so I could rest as much as possible. Drive up, have a day of rest the next day. Then, the next few days were evening shows or dinner plans, so I spent the whole day laying in bed before I went out for a few hours those evenings. Then, a day of rest before going home. I only made plans with a couple of friends because I knew I wouldn’t have the energy to do more than all of that. I was pretty proud of myself. I managed to make all of this work on a small budget with my mom, I planned plenty of resting buffer time, and we had a great time.

We went back home, and a couple of weeks later, it was my birthday. After getting a couple weeks of rest, my best friend took me out to an Afternoon Tea service nearby, and treated me for my birthday. A few days later, my mom fixed a nice dinner for me and my family at our house. On my actual birthday, I just laid around and rested. I enjoyed receiving calls, texts, and posts wishing my Happy Birthday.

Then, I noticed something. I realized that I was no longer friends on social media with a handful of people that I knew from the same place. All of these people had unfriended me across multiple platforms. One of them was someone who I thought had been a pretty close friend. I was really hurt. I had no idea why any of them had done this. I had no idea what I had done to warrant it. And I felt like I was going through such a hard time, and then people I thought were my friends deserted me in my hour of need. And, it wasn’t just one person, at this time, it was 4 or 5 in the same short period (and there have since been more from this same place—which I will talk about later on in another installment.)

I didn’t bother reaching out and asking why to most of them, but I did with the one that I thought had been a pretty close friend. I was just floored. For the past couple of years we had been hanging out. Having each other over for dinner, pet sitting, sharing secrets, etc. I had supported their spouse’s new business by not only taking my business there, but also getting gift cards there for giveaways I was in charge of. One week, I had driven one hour round trips to their place several times to watch their pet while they were out of town. In fact, I had thrown out my back so bad I couldn’t bend over, but because I had committed to it I still went and found friends to go with me to actually feed and take care of the pet since I literally couldn’t bend over. And I wouldn’t accept any money for it. When my friend was going through a really hard time I was there for them. Tried to help them find a therapist by making phone calls. Offered a shoulder to lean on. I really felt like I had been a good friend. And, all of a sudden, out of nowhere and with no words exchanged, they had deleted me on Facebook and both of my Instagrams. Clearly something was wrong.

I reached out and asked what had happened? Had I done something wrong? I wanted to try to mend whatever the misunderstanding was. At first I was given a non-answer of saying that we just didn’t need to be social media friends and we could just be in-person friends. I said something along the lines of “well, considering I don’t live anywhere near you anymore or see you at all anymore, there doesn’t really seem to be a way of being friends if we aren’t on each other’s social media.” If I recall, they said something about how they didn’t mean any offense, and they were still my friend. I believe I said something about how I was confused why they would delete me all over the place like that if we were still friends and that my feelings were hurt, but if that is how they wanted things and if that was all they wanted to tell me then I wish them the best and I wasn’t going to keep pushing it.

Then, they finally came back to me with their real answer. I was told they were upset that I had asked for donations for a moving truck (back in October) and now (in April), it looked like I was living a pretty “glamorous life”. And they didn’t think it was right I had asked for help and was now doing “glamorous” things. At the time, this cut like a knife deep into my empath heart. I was so damn hurt by this. And floored. I was completely floored. It just made no sense to me.

Here’s the way I saw it: In October 2021 I was going through one of the absolute hardest times of my life. I mustered all of the courage I had and asked for help. I felt so ashamed to ask for money. But a moving truck was $3k and I couldn’t use almost all of the money I had (or was going to have) for the next however many months I would be out of work. My dad had stage 4 lung cancer and was not in a position to help financially at that time. And a bunch of people who loved me came through and helped me out and I was beside myself with gratitude. Not only did I send each and every person a personalized thank you message, but I also started dedicating funny TikTok’s of my mom to them.

And then, 6 months later, I was taking a short trip to see shows that had been paid for in 2019. And I was very occasionally doing something with friends who were treating me to the things we did because of my money and work situation. And that was “glamorous”? I think about it now and it is laughable. There has been nothing glamorous about living in my old hometown, with my parents in my 40’s, and having this illness. I have made peace with this life now. But, at the time, this is never the choice I would have picked for myself. At the time, I was gutted. It took the breath out of me that someone I thought had been a close friend had made these harsh assumptions and judgments. Without talking to me or even trying to find out what my situation was. Never having checked on me to see how I was doing or how things were actually going from day to day. When I felt I had been so supportive of them when they had gone through a hard time.

I didn’t owe an explanation. And I know that now. These days, I have grown a lot and learned a lot. In fact, I am very much past this now. I have let go and moved on. I harbor no ill-will and I have, on many occasions, sent love their way in my prayers. If this were to happen now, I would not have bothered with an explanation. I would have said, “ok, I wish you the best of luck. Take care” and detached and been grateful someone like that was being removed from my life. That is what I do now. I am grateful this experience was a big part of helping me get to this place.

At the time though, I had a nervous breakdown. And I sent a big long explanation. “October was 6 months ago. I’ve spent December through March doing almost nothing except laying in my bed. The few things I have done were mostly paid for by other people. The tickets to shows were bought in 2019. I sold my car in March and made a decent chunk of change on it so I have been able to treat myself some since then. While I am still dealing with a lot of symptoms, I am overall feeling better seeing as how I have rested most days for 4 months.” etc etc.

I also thought that maybe they had been one of the friends who had donated and were angry that they had donated and then saw me go on that Chicago trip. Maybe they hadn’t seen the part of the post where I mentioned that all of that had been paid for prior to Covid? One of the things they said is that they were having money problems and so they were upset to see me doing this stuff after I had asked for donations (“6 months later” didn’t seem to factor into the way they computed this analysis.) So, I mentioned to them that if they had donated to me, I was sorry they were going through a hard financial time and I was happy to send them what they had donated back. I then looked through my Venmo history to see if I had somehow forgotten they had donated. But, I couldn’t find any donations from them. And, they responded that they hadn’t and telling me I was making this a bigger deal than it needed to be. Saying my money was none of their business, and they were ok if I was ok. Umm, so they didn’t even donate and they are pissed at me for this? Um, ok?

At this point, I saw no reason to carry on with this conversation. It felt to me that they didn’t want the conflict or to repair anything. They initially brushed off my question. When they did come around to telling me the real reason why, they were expecting me not to be upset about it. Not to be upset they unfriended me. Not to be upset that they unfriended me for a reason like that. Telling me I was overreacting. Saying they didn’t need an explanation of my money because it wasn’t their business even though they had just made it their business. Trying to skirt around the issue by just asking me to be ok because they were ok.

This person hadn’t checked on me throughout this illness. It seemed that everything I gave in the friendship was not appreciated or reciprocated. They watched my cat once. So, I will give them that. They were already going to be in my neighborhood anyways, and it was one visit on one day. They gave me a gift when I watched their cat for a week. But I gave them a gift when they watched mine that one day. I know friendships don’t have to be even stevens and keeping track of all of that is immature. At that time, I was feeling immature because I was so hurt. However, the point I am trying to illustrate is that the friendship had felt one-sided in a lot of ways anyways, so it didn’t feel like something that needed to be repaired after this whole exchange. But I don’t want to make it seem like they never did anything nice, so I wanted to include the things they did. I want to tell the whole truth that I am aware of.

So, I decided this didn’t need to go any further, and I communicated as much. I was honest and said I wasn’t ok and I was hurt and that is not how I operated in friendships. But that I wasn’t going to push this anymore and would leave it be and that I wished them the best. Or something along those lines. (As an act of self-care, I deleted that text message about a year after it happened, so that I wouldn’t go back and read it anymore. So I don’t have exact wording anymore.)

This was on my birthday, and I was truly upset. At that time, I was so beside myself with grief over the loss of my health, my independence, my job, my apartment, and my life as I once knew it. To now be losing “friends” because they didn’t like how I was living my life with this illness was just too much for me at that time. The straw that broke the camel’s back. When you are really sick and don’t feel good, and are already so down and out about so many things, I think a lot of us are likely to get more upset about something like this than we would under normal circumstances. This all spiraled into me assuming the other people from this group that had deleted me had been for the same reason.

So, I took to Facebook. I was so upset and really wanted support, encouragement, love, and validation. I posted a picture of me crying, and wrote a long ass post about everything going on behind-the-scenes that I hadn’t been posting about. I felt I had been doing a disservice to the seriousness of this illness by only posting the things that looked normal every 2-3 weeks. So, here is a post that shows what most of the time looked like for me. Lying in bed, grieving my old life, and crying. I talked in the post about everything I have just talked about here. I gave away no identifying information. And I gave an even longer explanation than I did above about my money situation, the details of everything I had done, etc. At the time, it felt like what I had to do. I wanted people to understand every part of this that they weren’t seeing. I wanted validation, and I also wanted people who were being shitty to me to hear the truth. I wanted people to stop judging me and/or disbelieving me.

I received exactly what I was asking for. A TON of nice, supportive, validating comments. And, a few more haters deleting me. At the time, I was so hurt to be deleted by more people. Now, I am so thankful they did. I have no interest in those people being in my space and watching me and sending negative thoughts. I know the truth about my situation. They are welcome to think what they want and believe what they want. If they don’t ask me, and don’t bother to hear what I have to say, then please leave my space. I wish them the best. I am not saying that in a passive aggressive way. I genuinely truly actually do. I am thankful they are gone from my collective, and I am sending them genuine love.

And, because I have promised total honesty and transparency, I want to also hold myself accountable for the areas where I believe I am doing, or have done, something wrong or unhealthy or that paints me in a rough light. This is something I have yet to admit publicly, but have shared privately with a few people. Another reason this exchange sent me off the deep end, is because it triggered a very deep private shame I have for one of my unhealthy coping mechanisms. You have seen a million posts and writing samples from me about how unhealthy eating is one of the things I struggle with. I have not been as forthcoming about my other one. But, I want to start now. My other unhealthy coping mechanism is spending money. When I am depressed, I traditionally turn to junk food and shopping.

All of the donations I received went to my moving truck. Everything I received that was above and beyond what I needed, I offered to send back. When I was told to keep it, it still went to all of the costs of moving. Absolutely no one donated a single cent to me shopping. Let’s just make that clear.

After I moved home, I was a mess. I was so depressed at how things had ended up. The life I had built for myself was completely gone. I was embarrassed to live with my parents in my late 30’s. I was sad that I was back home and not in the city. I was scared that I didn’t have a job and was so sick. I felt like crap all of the time because of my illness, and had no idea (honestly still have no idea) if it could be treated or if I would ever get better or if things would get worse. Just pretty much everything was causing depression and anxiety. I also didn’t have a therapist at this point in time.

With my insomnia, I was up all night. Everyone was asleep. I had no one to talk to. I was so used to being so social, and now I was holed up in my room in bed most of the time with a very small social life. The majority of my socializing was on social media, but at 4am when I was wide awake, not many others were. I have always been a creative person, but I didn’t have the energy or brain power to turn to many of my creative outlets.

So, I started spending money as a hobby. This started in December a little bit after I moved back home. It was after the donations paid for the moving van, and before my birthday when this person unfriended me.

I was up all night on Amazon, shopping and ordering. Putting things on credit cards that I didn’t have the money to cover. Even though I no longer had rent, I still had to use severance money for COBRA, my car payments and car insurance, my phone bill, and other odds and ends. I only had enough to get me through about 3 months. This made me anxious. And when I get anxious, I turn to unhealthy coping mechanisms. The kicker is, being anxious about not having enough money and that causing you to spend more money is pretty damaging. That’s what I do. That’s my addiction that I struggle with.

I coped with all I was going through by shopping on credit cards. I stressed about the debt. And the stress led to anxiety-induced shopping. I was bored, depressed, and lonely. Shopping kept me company. The funny thing is, a fair amount of what I tend to recklessly spend money on is gifts for other people.

Then this person comes along and tells me they aren’t my friend anymore because of the thing that is my dirty little secret. This huge trigger for me. This thing that is helping me cope with everything I am going through. And it sent me over the edge. I just couldn’t handle one more hard thing on my plate.

As of now, I still struggle with spending off and on. And I am working incredibly hard in therapy and with hypnosis to overcome this addiction. I have worked on letting go of the guilt I felt about all of this. Because, at the end of the day, it only hurt me. Like I said, I was always honest about the donations, and they were never used for anything but the move. I was in a rough spot, and people helped me out. End of story.

Then, I took responsibility for the spending I did a few months after that by selling my car and using the money to pay off my credit cards. I didn’t lie to anyone. I didn’t cause anyone any problems except for me. And I know now it was absolutely none of this person’s business what my financial situation was, and that my “glamorous life” was a projection. But, at the time, the shame wrecked me.

I still feel a lot of shame when I fall off the wagon. I feel very insecure sharing this now. I hope this helps other people who have gone through similar struggles feel less alone. And I want to fulfill my promise of sharing every part of this story that has been pivotal for me.

I have never talked to that person since. I have had suspicions they told some other people we know about their side of this, because some of those people deleted me shortly after. But, I don’t know for sure, because I didn’t ask them, and no one has ever come to me and said anything. For a long time, it really hurt. But, now, I am ok with it. I am grateful for how much it helped me grow out of my insecurities with stuff like that. Because, I took this to therapy and dug down deep and really worked hard on working out my shit with it.

I only write about it now, not to explain myself, defend myself, put anyone in the hot seat, complain/vent, or any other self-serving motive. I write about this now, because like I said in my very first post of this series, I am going to tell you EVERYTHING that happened. Every part of this story that has been pivotal, shaped me, sent me in a certain direction, or anything of consequence is going in this story.

I am working to let go of worrying about offending someone when I tell the truth of my long-haul journey. I am giving no defining characteristics of who any of the people are when I write about them in these posts. And, I am sure they all have their own side of it. My storytelling here is certainly biased in that it is coming from my experience of it. I try to include all of the facts I remember about the things that were said on both sides, so you can have as much of the other person’s side as I am privy to. But, alas, it is through my lens.

This is written from a place of having talked to two different therapists about it, as well as a handful of trusted confidants, and gaining their perspective. I let them read these texts verbatim, so that I was not being impartial. It’s still my side of the story though.

I write it here because it is part of the narrative of how my life has been impacted by this illness and this journey. I promised I was not going to leave anything out, and to be as transparent as I possibly could. This is me doing that.

One of the things that has really impacted me in the unfolding of this illness, is how interpersonal relationships have played out as a result of the direction my life went. I have talked, and will continue to talk, about the people who have really been there for me. The positive interpersonal relationship gifts I have received from all of this. New friends that have replaced old ones. I am also going to continue talking about the rough moments in these relationships, too. How they impacted my mental health, the grief I was going through, and how it has helped me grow.

I harbor no ill will for the ones I felt hurt by. I am detached from all angry and sad feelings I had in this scenario I have just told you about. I have moved on. My life is better now because I am getting sooooooo much better at letting go of the people, patterns, and things that are not meant for me. Things are aligning in a positive way because I am letting go of negative things. And this incident really helped pave the way for me to heal that part of myself.

Even though I am sure parts of my writing here seem emotional, I can assure you I am no longer emotional about it. One of the things I have always been able to do, in my creative process, is go back and drudge up emotions I was feeling at a particular time. I’ve used this for acting, stand-up comedy, writing, and any other creative task I do. I can put myself in that old mind frame to tell the story with the emotions I had at the time, so that it can be properly conveyed to the viewer/reader.

Then, when I am finished, I can shake that off and go back to where I am at now. So, please do not worry that I am still upset. I am not. People are welcome to think whatever they wish about me sharing this story. I am fulfilling my promise to tell it all. It happened to me. It’s my story to tell. I am the Taylor Swift of blogging I guess.

Link to next post in series - Part 9.