Weddings

Weddings seem to run the gambit of emotions for a lot of people. There is obviously a lot of joy as a couple in love joins themselves to start a new life and family together. There also seems to be a fair amount of stress that comes along with these celebrations. The point of this post is not to detail all of the stresses that normally come along with a wedding. It is it explain a bit how a wedding day can go for someone struggling with a chronic illness.

I have been to quite a few weddings over the years since getting sick. They are hard. Just plain and simple. Attending most events for me is challenging. Having to sit up or even stand for extended periods of time with nowhere to take a rest is just asking for a crash. I am sure this is news to no one, but weddings are both physically and mentally exhausting. When you attend a wedding for a friend or family member, you want to be present. You want to be excited and engaged, giving your energy to the couple and their guests. Obviously I do not have much energy to go around, so the experience is all incredibly draining. It will almost always require more than what I have in the tank. In fact, I have never attended a wedding and not had a crash afterwards. The crashes have varied in intensity. They have been anywhere from a few days in bed to nearly 3 months of agony.

One challenging aspect of a wedding is that I never quite know what the setup of the ceremony and reception will be. Will there be chairs? How long will cocktail hour be before its okay to go pour myself into the closest thing resembling a seat? Also no one is going to look at me and think I need a rest. Leave what seats are avalialbe for the grandma’s and great aunts you selfish youngin. Weddings are also a lot about socialization. What friends of friends will I need to chat up? Most of the people in attendance will have no idea of my situation, and I would like to keep it that way in many instances. We are at a wedding. It is a time for small talk and polite conversation. Not a time to detail how very much I am struggling to even be conscious. However, I also know that I am only so good of an actress. I do get to my limit and am sure I have looked pained listening to someone’s cousin or best friend from middle school. I might even seem like I am not paying attention. I am definitely one of those people who will lay awake at the end of the night going over every social interaction I had. Being ill compounds this issue. I know that I am doing everything in my power to even just be at a wedding, let alone energetically interact with every person I come in contact with. The fact of the matter is I won’t energetically interact with every person I come in contact with. And as the event goes on, I will mostly just blearily nod at people hoping that suffices.

Another potential issue that makes weddings challenging is travel. If I have to fly for a wedding, I might as well just pack it up right then and there. It adds another brutal layer to an already difficult scenario. My younger brother was married in San Diego a few years ago. Brandt and I were living in Boston. Pretty much as far away from each other as you can get in the continental US. That was the 3 month crash that I alluded to earlier. But what are you going to do? Tell your brother’s new bride that she needs to get married in Boston where she has no family or friends or suffer my wrath? Nope that isn’t going to fly. I am getting to the point where I may not be able to travel for weddings. And that sucks. Majorly. But I cannot take gambles like that with a crash that severe. There is always a chance that I won’t recover.

The inspiration for this post came from the most recent wedding I attended. My younger sister Abigail has had quite the go of it this year trying to get married. Like many couples, the COVID-19 pandemic completely derailed her plans more than once. The plan has probably changed half a dozen times as the virus spread and things shut down. Her dreams of a wedding in Utah surrounded by friends and family quickly became just that, a dream. Another consequence of the pandemic is that her wedding took place in two parts. In my family’s religion, marriage is a sacred ceremony that occurs in a temple rather than a church building. Many of you might have seen the huge white buildings with the golden guy on top. Well these temples have been shut down since the end of March, only recently reopening for small groups. My sister had a civil ceremony back in April and held the religious aspect of her marriage at the end of September. Brandt and I were not able to physically be at the April wedding. We were still living in Boston and travel was completely out of the question. So we zoomed into the ceremony and were able to participate from afar. Once news came of the temples reopening, the September date was set. As Brandt and I have moved to North Carolina to be closer to family, we knew we could be there for this experience.

A quick side note here, but I love makeup. I found beauty YouTube as a result of needing to fill a lot of free time with my illness as well as finding a way to cover the pesky rashes on my face. For someone who wears makeup as infrequently as I do, that amount that I own is simply ludicrous. I know that I have a problem. I can stop anytime I want, okay?! I point out this stupid obsession of my mine to explain that I did my sister’s makeup for her ceremony in September. Well I actually did her makeup twice. Abigail and her husband Morgan took pictures just the two of them the day before their ceremony, as it was supposed to rain on the actual day. So I did her up full glam two days in a row. Anyone who knows my sister knows that she is gorgeous. It’s not hard to make that girl look good, so it was just fun to play with makeup without much stress that she would look anything less than perfect. However, this was two days in a row that I was up far more than I should have been. I had all of the women in my family over at my apartment for two days as we did makeup, hair, nails, and ate amazing junk food together. It was so much fun! But it was so not something my body was up to. That is always the struggle with ME. It does not take much for me to push too hard, especially as my health has deteriorated over the years (as a result of pushing too hard constantly). On its face, these two days of hanging out with some of my favorite people does not seem taxing. But it was.

The immediate and harsh consequences of exceeding my limits is one of the most frustrating things about this illness. I feel awful enough day to day. I think: “surely it could not be worse than this”. And then I have a crash that makes me pray for the day I feel my “normal” again. What would have been the “smart” thing to do as it related to this wedding? I should have rested that entire week, done simple hair and makeup on myself, gone to the ceremony and then gone home. But where is the fun in that? I would have missed out on being a part of my sister’s wedding in the meaningful way that I was. I would have missed doing something that I love for the sake of someone that I love. I would have missed two days of memories with my mom, sister, and two sister-in-laws. Would I have also missed the weeks of feeling even worse than I usually do? Yes. Do I enjoy the crushing fatigue, pounding headaches, sore throats, dizziness, and body aches that make me dramatically wish for death? Nope. Is it sometimes hard to make the calculation as to if those symptoms are worth the activity that brings them on? Absolutely.

 You often feel so robbed by this illness. Can I just have two days? Two days where I can be “normal” and not suffer as a result. I promise I will go back into my dungeon after that. And then ME gives you the finger and tells you to get back into bed where you belong. There is just no bargaining with that jerk. Believe me. I’ve tried.

I mentioned the socializing aspect of weddings earlier, and this definitely came into play with my sister’s wedding. The ceremony was very small. It was just immediate family allowed inside, and we sat on opposite sides of the room. Brandt and I are social people, so we do enjoy getting to know new people, and my sister’s in-laws were no exception. Except we couldn’t socialize because of the COVID-19 pandemic. I have to keep my circle of interactions with people quite small. In fact the only people I interact with closely is my immediate family. My doctors are quite nervous about me contracting the virus and want Brandt and I to keep our exposure to an absolute minimum. One of my doctors didn’t even want me getting in an outdoor pool. This is all good and dandy, but it left us awkwardly dodging people in and around the temple. We also had to keep our distance from Morgan’s family while outside. They were very gracious and kind about our distance, but we still didn’t enjoy having to be so isolated. Remaining apart from the group definitely wasn’t our preference, but such are the crazy times we live in! We also had to avoid their wedding photographer, who actually did our wedding photos too! We would have loved to caught up with her or even explained why were oddly off to one side, but that didn’t really happen and left me feeling uncomfortable and upset over this whole pandemic situation.

The last thing I will touch on here is when my limit has been reached. Again, I spoke to this a bit earlier in the post, but things do get to a point where I have less than nothing left to give. By the time Brandt and I arrived at the temple for the ceremony, I was already at my limit. I had already run myself to empty and still had the most important part left to go. I stubbornly left my wheelchair in the car because of reasons. I don’t know if I will ever completely lose that instinct to appear normal. The want to claw and scrape for any sense of independence that you can muster. But of course I should have brought it with me. It would have aided me during pictures and while walking to and from the ceremony. Unfortunately, I left my motility aid where it could not aid me and shouldered ahead as best I could. By the time pictures were wrapping up, I could no longer stand. Brandt had to grab me before I fell. Years of this has made him a pro at telling when I am so far gone. My eyes tend to roll back and my limbs start to shake. So rather than being able to participate in the last of the photos, Brandt had to basically carry me back to the car. It’s beyond embarrassing to get to the point where you can no longer put up a front for the sake of others. It has happened a few times where I fall completely physically apart in public, and I hate it. Not only is it embarrassing, but it is also a pretty clear indication that I will crash and crash hard.

The worst part of this dramatic exit that Brandt and I had to make is that some aspect of my sister’s day became about my health. She had so many roadblocks to having a special wedding day. All she wanted were some nice photos of her two joined families to remember her wedding by. And I just couldn’t hold it together long enough to not be a pull on that moment. I know that she doesn’t begrudge me this. My family is wonderful. Morgan and her called me on their way to their hotel to check on me. But that is just it. Look I know that weddings are about more than just the couple. But it is primarily about the couple. And it is most certainly not about the bride’s older sister passing out during pictures. That is for sure.