My Life with Long-haul - Part 5

"But you seem fine"

Link to previous post in series - part 4

“But you seem fine” is what so many people have told me. That tells me, they don’t understand chronic illness. And that is ok, cause I didn’t understand it until I had it either. That is why I am writing this. To help people understand it, and to help us change the way we view people with chronic illnesses.

For a while, I did a disservice to this illness, by hiding it. By hiding how hard it was (and still is), and putting all of my energy into pretending I was OK the times that I was around people. I hope as I tell this story, I can shed some light on how these illnesses can seem invisible to certain people (i.e. people that don’t live with the chronically ill person).

Most of my co-workers didn’t see it because I was in the office one day a week. I was in bed almost every other day. Saving energy. The one, sometimes two days, I went into the office, I put on a brave face and coasted on fumes of having banked my energy the rest of the week. When I got home, I completely crashed.

A lot of my friends didn’t see it because I wasn’t going out and doing as much with them. The few times I did during this period of time, again, I banked my energy and put on a brave face when I went out. I also had to cancel on a lot of plans during these months.

I was having trouble accepting that this was my life and that I couldn’t do things. So if I was having trouble accepting it, I was gonna try my damndest to cover it up the few times I was around people. Additionally, a chronically ill person can do things, and they can have energy. They have good days and bad days. They have to pace themselves. So when I rest all week, and then go and do something for a handful of hours one day, I will probably appear normal to you. I want to be normal and have a good time. So that’s what I try to do when I can.

It’s when I leave and go home that the crash happens. And it is in the following days after that, when no one sees me, where the recouping happens. And it is in the privacy of my home where the tears fall (well not always, I sometimes cry in public and in front of people) about how much I am struggling to learn a new task, forgetting my address, and being out of breath from a shower. Legit, I have to rest and catch my breath after I shower - even as I write this in Nov. 2023 - that is still a thing.

In fact, as I was writing that last paragraph, I had a thought of something I should include, but then I couldn’t remember if I had written about it before in a previous installment. So I clicked on the tab for the previous posts, and in those few seconds I forgot what the thing was that I wanted to check on and possibly write about if I hadn’t already. I am still trying to remember what it was…

5 minutes later - Oh, yes! I remember. The stories about forgetting things like my address, etc. I don’t feel like going back to check and see if I wrote about that yet, so if I have, apologies for the redundancy. Welcome to my life.

In the few months leading up to me moving home, my brain fog got pretty bad. Some examples of this were - I forgot the name of the fish I’d had for 5 years (the one who died and I didn’t have the energy to toss him for a long time).

I forgot the name of the Hancock building in Chicago when I was referencing it, and I was refusing to look it up online because I wanted to try to remember it. I went a whole day unable to remember it and then had to look it up. (Seeing as how I had lived there for 13 years, and I am normally ON THE BALL with this stuff, that was bad for me.)

And I forgot my parents’ address and had to ask my dad. I was forwarding my mail and I couldn’t remember the mailing address we had been using since I was 10 years old. (Stay tuned for a really gross story about something I forgot to do later on down the line when I had been home for a while. Since this story is chronological, you will have to wait.)

Anyways, we left off last when I accepted the severance at my job, and we decided I would work there another 2 months. As such, around this time I made a formal announcement to friends, co-workers, and acquaintances about my situation and my plans to move home.

So many people reached out with their support and love, and it really did make me feel so much better. Additionally, a lot of these people asked if there was any way they could help. I realized that moving was going to be such a hard process, because I was SO fatigued and mostly bed-ridden.

As such, I asked people if they could bring me boxes and packing supplies. I also asked if people wanted to come by and say good-bye to me, and help me pack one or two boxes. I thought this would be a good way to get a little help, without asking anyone to do too much work, and then I had a way of saying good-bye to more people. I didn’t have the energy to go out for a bunch of good-byes or a party or anything. And I had lived there 13 years and had people I wanted to see.

Here is a good place to interject that I really have a hard time asking for help. I am better at it now, but at the time this was going on, it was really hard for me. So even asking people to bring me boxes and/or helping me pack a couple of them was really hard.

So many people came through and helped me out, and it was so comforting to have people come through for me like that. There were also some people that offered to help, but then when I messaged them and asked for the help, it was crickets. That was hard for me. I don’t like asking for help. Someone offers it - I agree to take the help - then they ghost. WTF? I know it isn’t personal. But man does it suck. I don’t like when people do that. And it is especially hard when you are as down and out as I was. I actually mention this as a “don’t” in my Long-haul Do's and Don'ts PSA.

But, I want to focus on the people that did help. I just mention it because I want to talk about all components of this. I think there is a problem that exists where people publicly offer to help because it makes them feel and/or look good for doing so, but they don’t really have any follow-through on those offers. And I don’t think that is a cool way to be. I know there are extenuating circumstances, and people forget. But, it just really sucks for the person who needs the help. Just don’t offer help if you aren’t someone who can respond and follow-through.

As for the people who did help, I had so many lovely people come bring me packing supplies, food, and helped me pack up while we said our goodbyes, and I am forever grateful. The big shout out I need to give is to my bestie Kristen, who lives in CA. That girl bought a damn plane ticket and came for an entire week and worked tirelessly on packing my entire apartment with my mom.

I also gotta give a huge shout out to my mom, cause she came up that week and worked tirelessly with Kristen. Seriously, I laid in bed 92% of the time. I took that week off work since I needed to be available to answer their questions about packing, and to help when I could. But, for the most part, I did nothing. I could hardly move at that time. This was the last week of October in 2021. During the times I wasn’t laying around doing nothing that week, I was running the necessary errands. I am fairly positive I didn’t pack a single box that week.

I laid in bed while they asked me some packing questions here and there. Mostly, I laid in bed listening to the two of them working together. I don’t think it can be overstated how much joy that brought me. The two of them get along like bees and honey. They just love each other so much, and I listened to the two of them joke, laugh, support each other, bond over their very similar packing styles, work together on the best way to pack stuff, giving each other high fives for a job well done, carrying heavy things out to the trash, telling each other stories, and just basically never stopping talking. They both are the chattiest Kathies you will ever meet.

The fact that they were both there at the same time was a HUGE win for me, because that meant that they each had someone to talk to. I didn’t have the energy for it, and they occupied the shit out of each other. It made my heart sing to just lay in bed and listen to these two angels and loves of my life out there working their asses off for me. I don’t think I can do them the justice they deserve, or ever explain how much it meant to me. How much it still means to me. Another thing they did for me, is held me while I SOBBED, which I will explain in a moment.

As I mentioned in my last installment, I had to break my lease. This was excruciatingly difficult. My Chicago bestie, Suze, has worked in real estate contracts for most of her career. So she helped me draft up a letter that was air tight to break my lease under the circumstances. In it, I included a note from my doctor as well as my severance notice. This note also cited that the building had not been following proper Covid protocols (of which I had ample proof) that were required by law. As such, I was in danger living there considering my immunocompromised conditon.

I know breaking a lease is not great, but what choice did I have? And since I was going to be out of a job for who knows how long, I had no way of paying their fee for this. I had to leave, and I couldn’t pay any money. I didn’t want it to be that way. I didn’t want any of this to be that way. But that was the way things were.

Unfortunately, I didn’t have a savings account that could cover everything that was happening. I had just gotten myself out of the debt I’d been paying for years since my divorce. I was just coming around to being able to finally get a new car, and start to treat myself a little more here and there. I had been in a really shitty financial situation after my divorce for a really long time. It had finally been in the last 6 months that I was finally out of the hole.

Now I was going to be out of a job with a tiny severance and no way of knowing when I would feel better to work again. I was going to have way less bills living at home, but I also was going to have zero income after the severance payment. I needed to save that to live off of for the foreseeable future. I still would have some bills to pay, and I couldn’t just have zero dollars in my account. As such, I couldn’t use every last cent to pay a hefty broken lease fee.

I sent a very reasonable letter and explanation to my property management. A management company that I had never once turned in late or incomplete rent to for 6.5 years. A company who I had never once given any hassles or caused any problems. I was an exemplary tenant. And they came back at me with not only a total lack of understanding, compassion, or flexibility - but also just hatefulness.

Especially about me citing that a lot of the building employees and a lot of tenants had not been wearing masks in the common spaces and elevators when that was absolutely mandatory in Chicago. I was constantly being put at risk. I wasn’t going to report them, and I wasn’t going to cause a big stink about it. But it was a very legitimate concern for me that I was forced to be in small spaces with people in this building when I had to come out of my apartment. I needed to be living in a place where I wasn’t going to come into contact with that many unmasked people. I am not even talking about going out in public. I am talking about living in a building with a few hundred people and not having a way to be safe where I lived.

We went back and forth for rounds and rounds and rounds where they threatened me and made my life hell for a few weeks. I kept explaining to them that I didn’t want to be doing this. I didn’t want to have lost my job. I didn’t want to be forced to move home with my parents. I didn’t want to leave my beautiful apartment (even if the building wasn’t safe). I didn’t want to lose my independence.

I told them, “if you try to force me to stay, I have no way to pay the rent. Then I will just be a squatter. Wouldn’t it make more sense to use the 2 months notice I am giving you to find another tenant and not waste this time going back and forth with me? This is what is happening. I am sick. I am moving. I don’t have a job. I don’t have income. I don’t have a spouse who can pay for things. I don’t have savings. I don’t have a choice.”

I was in the thick of this battle when my mom and Kristen were visiting and helping me pack. One day, I just completely broke down. I SOBBED so freaking hard. What was happening to my life? A life I had so painstakingly built. In 2012 my husband met another woman and left me. I was left to pay all of the bills by myself that we had once shared. I did everything I could to stay in Chicago and earn what I needed to earn to afford to live there by myself. I spent every day from Summer 2012 to Fall 2021 rebuilding my life. Getting a good job. Paying off debt. Getting a new car. Moving into a beautiful apartment that I loved. Cultivating a life that I could be happy with and proud of. Of course I had support from family and friends. But I did a lot on my own too, and had done a freaking great job.

And in early 2021, when it felt like I finally had a solid footing and was coming out of being absolutely broke all the time, I began to decline tremendously in my health. Within a few months, it deteriorated so fast that I was now losing everything I had worked so hard for. Selling off the furniture I had bought and learned to put together myself. Watching an apartment that I had painstakingly made my home being packed up. Signing a severance agreement for a job that I had once loved and had once been so good to me. Losing my understanding boss and gaining a tyrant in her place. Fighting tooth and nail to break a lease for an apartment I didn’t want to leave. Begging my landlord to show some compassion when I had been an amazing tenant for 6 years. Leaving friends that I had worked so hard to make after my divorce.

What took me almost 10 years to build was now all falling out beneath me in a matter of weeks. To say I was devastated is an understatement. Even as I type this I am crying so hard I can barely breathe. The grief I felt, and still feel, is all-consuming at times.

At that moment, I just fell apart. I had been trying so hard to keep myself together. To get through everything awful at work, to get through this stressful move, to deal with the angry landlord, to fight for the medical care I needed and wasn’t getting, and to deal with the administrative nightmare all of this was. For so many months I had been mostly doing this all completely on my own. When mom and Kristen were there for a week helping me, I could finally let my guard down for a moment and just lose it.

They held me, and I actually mean physically held me, for about an hour and just let me cry and scream and yell and lament all of the above. They consoled me and loved me and supported me. They took such good care of me. There have been few moments in my life where I have felt as utterly defeated and crushed as I did that day. And I am forever grateful that they caught me when I fell.

Eventually my landlord caved, and let me out of the lease. And, in the last few days of my mom and Kristen’s packing trip, it was Halloween. I love horror movies. They do not. They watched them with me anyways. They watched a bunch of them with me. Every single night. Every night, we watched horror movies. Kristen screamed loudly multiple times. Mom yelled at the TV and asked annoying questions. Then we went to bed. And the next day they would wake up and pack my apartment the entire day while I laid in bed and listened to them chat non-stop and be some of the most amazing women in my world.

To be continued…. In the next installment, I will talk about the beyond terrible medical care I received before I left Chicago, and how I was told I had a low IQ and high anxiety instead of long-haul Covid. Stay tuned….

Link to next post in series - Part 6