In the last few months, I’ve been writing a letter series for HealthCentral, and my article for this month was a letter to the spouse of someone living with UC. It just so happens this past week I had the immense honor of marrying my best friend, Adam. I started to write this letter to a spouse and it felt complicated because I wanted to write to my own spouse, but I realized that our story can in no way encompass everyone’s story. I decided that I’d write a letter to “A UC Spouse” for HealthCentral and I would write a letter to my spouse, here on my blog. I’m ugly crying just thinking about it.

Dear Adam,

Some people write love letters to their spouses and insert them in adorable Hallmark cards around the house (“some people” = you), but I have never been one for keeping private moments private, so here we are! Adam meet Internet. Internet meet my husband, Adam.

 

2018 was a year full of things I said I’d never do like sell my house, get a cat, work full-time as a freelancer and get married. Aside from the cat, I can confidently say that this year of fulfilling the “never” list, has been so incredibly unbelievable. I can’t even believe that this is the life I lead. Every single day with you is so full of laughter and happiness that our lives are made up of the stuff that people write sappy movies and love songs about. I mean, you did write an actual love song and it’s fantastic.

Seriously, I don’t think anyone else has ever successfully rhymed the word “ostomies” in a rap before. That’s an Adam original. (I’m sure you’ll also want me to tell anyone who listens that this isn’t mixed and mastered properly.)

In the years that we’ve been together, you’ve opened my mind, my heart and all of the other cliché things that people say about their spouses but are actually true. We’ve built this fortified foundation and each thing that life has thrown us just bounces off like some rad deflective relationship armor. We shield each other. I’ve never had another person be my shield before because no one wanted the job. But this is why I married you. Obvi. And I’m gonna shield you so hard if I ever get the chance.

 

I’m scared

Although you’re the best thing since sliced bread, I’m scared but I’m scared so much less than I have ever been before. My life and my illnesses are like a basket of kittens dropped on our front porch – it’s kind of interesting to talk about, but it’s totally different when they show up unexpected and need endless amount of your time, energy, attention and money. No one wants kittens like that. We have talked about my health for hours on end and you’ve done nothing but be endlessly reassuring, but I’m still scared. I’m not even really sure I know what I’m scared of though. I know you’re not going any where. I know you’ll still love me if my health tanks, but there is still fear.

We’ve been really lucky that in the time we’ve known each other, I haven’t been too sick. Sure, I have about 1,000 stomach aches a week and I did have a MS relapse in March, but for the most part we’re riding a very healthy wave. I don’t want you to have to see me get sick again but I also know that if I do, I want you right by my side. For some reason I still feel like I can protect you from how scary this can be. I still think that there’s a chance we can just keep on keepin’ on and we won’t have our lives interrupted.

But I know that isn’t realistic.

I don’t know when, how bad or how long but our lives will be interrupted at some point. It may not be my MS, or my J-pouch; it could be anything, chronic illnesses are like Pokemon cards. You gotta catch ’em all. I’m scared about that. I know what MS and IBD look like, and if we have to face those I know how to prep you for that. I can teach you the best way to be my partner. I don’t know how to navigate another new illness with a partner. Chronic illness is no joke, and when you see it wreaking havoc on someone you love, I can only image what that feels like. So let’s just be scared together and keep communicating if that happens, ok?

I have done so much of these past 12 years on my own, and while I’m all “Single woman, Sasha Fierce, I-N-D-E-P-E-N-D-E-N-T”, I would actually really like to have someone to tackle this with me. I don’t even know what “this” is right now, I just know I want you there and that being sick on my own was really hard. I’m ready to accept help now. Your help.

 

I’m sorry

You definitely know by now that I pride myself on being someone who is reliable. It’s kind of my thing. Being sick again means I won’t be reliable and this will just be one of many things that will make me feel like a stranger in my own body and a failure. It’s the ultimate betrayal when your body fails you, and now it’s not just betraying me, it’s also betraying you too. I want to be the best wife I can be, and I need a body that works to do that. I’m sorry for the times in the future when my body fails us both because it will but I know we’ll be ok.  I live in a perpetual state of FOMO and that is something I accepted years ago, but it’s different now. I WANT to experience everything with you. I WANT to share adventures together and there is a part of me that is angry that I know there will be things we miss. Being married to you has opened up so many new possibilities for things I never thought I’d do, and oh man am I excited and nervous all at the same time.

I’m preemptively sorry for all the events we may miss, the plans we may cancel, the times you’ll have to call into work, and for anything other thing that my chronic illness will get in the way of. I can hear you in my head right now telling me not to apologize, but I’m doing it anyway. Not because it will make a difference but because I am sorry. I’m sorry for you and for me and for all the cool things we’ll miss, but there will always be other cool things. I hope we get to attend the cooler things and miss the less cool things.

I’m grateful

I know that I’m amazing and that you totally hit the wife jackpot with me but really I am so endlessly grateful for you. I never thought I’d get married and part of that is because I didn’t think anyone could see me as anything but damaged goods because that’s how I saw myself. Sure, I know I have great qualities but I also know that chronic illness burden weights a lot and I’ve always been worried about this balancing scale (that I made up in my head), where my qualities are light as a feather and my illnesses sink like a rock. Like a super heavy rock. I will always think you took a chance on me even if you don’t. I will always be grateful that you were willing to learn about every aspect of my life including my illnesses and that even after you got to know me you still continued to believe that I am worth sticking around for.

Adam you see me. You actually SEE me. Gratitude isn’t enough to explain that. In a world where sick people are invisible and considered a burden, you see me, you validate me, and you unconditionally love me.  I will never forget the day where I was melting down about being sick, and you looked me directly in my eyes and slowly said “You are not a burden”. Unprompted. Confidently. And sincerely.

You are the MVP of my world.

I’m happy

Sometimes I feel like we live on our own planet where we wake up smiling and go to bed laughing and that’s just the norm. We’re excited to hug after a long day and your hugs are like an anxiety annihilating machine. With each embrace, it’s like you put on a superhero cape and boldly say, “Not today, Anxiety”. And then that’s it. It’s gone. We’re laughing again. How do you do that? Are you really a super hero, or are your arms just infused with Xanax? It’s some kind of magic you have.

I’m happy with your magic but not in the way where it just puts a smile on my face sometimes. I’m happy down to my core, in my soul’s soul. Like “my aura is making all the other auras jealous” kind of happy. I know that the surface level happy can fade sometimes, and that I’m not always rainbows and sunshine, but my authentic self is happy and that is the happy that will get us through chronic illness, loss, and unexpected life obstacles.

Being sick has changed my perspective on so many things including how I viewed myself. It has been like the little devil on my shoulder telling me I’m not worthy of a good life, good health, or good relationships and for many many years that little voice existed unopposed. What chronic illness didn’t know, and what I didn’t know is that I’d get you on my other shoulder. Even when I’m doubting myself the most, your light is brighter and your positivity is louder than anything chronic illness can offer up. I’m excited to have you on my shoulder and by my side from here on out.

Love doesn’t even begin to describe it,
Jackie