Dear…?

For the month of March themighty.com is asking readers to write a letter to their illness or disability. So I wrote one. And then they put it on their website which is kind of fun! Here’s what I wrote.

Dear…?

Well, actually, I don’t know what to call you. I could call you Gastroparesis, but that’s just your first name. I’m still trying to find out what your last name is, how many middle names you have. My digestive system wasn’t enough for you so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge and you make being alive more complicated than it should be. I can’t eat because of you, so I eat through a tube in my abdomen and a central line in my bloodstream. I take medications to help my body do the things it has lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you, and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I had to give up a job that I loved. Thanks to you I had to drop out of university. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the very same goals I’ve had to set aside.

But thanks to you I’ve made some new friends. I have met so many wonderful people because of you. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They have given me unconditional support and I’ve learned how to offer that support in return.

On the one hand, I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections and you’ve given us a lot of opportunities to be there for each other when we are most vulnerable, which is also when we are most honest, when the knots are tied the tightest. Throughout the past five years I have never felt more discouraged, frustrated, tired and lost, but I’ve also never felt more loved. I know that’s because of you.

You’ve caused me a lot of hurt. I grieve my old normal all the time. I grieve the me who was always on the go, who thrived at school, who was involved in everything and actively trying to make a difference. She was motivated, hard-working and full of energy. She was smart and she was going places. I liked her.

My new normal is different. The new me is quieter, but wiser. More tired, but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. She’s slower to judge and quicker to empathize. She knows how to ask for help and she keeps going no matter what.

And you know what? I like her, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me but you’ve made me more grateful. How is that possible?

It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and successes in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is that I get to choose what I see. And if I look for the good, I know I will find it.

You taught me that.

Here’s to my village

I last posted around two weeks ago, on December 1, about how I always finish the day by saying tomorrow will be better. Unfortunately, the last two weeks (two months…two years, really) have not been better, and have in fact been more than my poor body can handle. On top of all my underlying health problems that cause incredible fatigue, I’ve gone to a lot of important but tiring appointments, had a lot of blood drawn, spent a lot of days suffering through horrible side effects of antibiotics, and topped it all off with a late night trip to the ER for severe abdominal pain that dissipated after 24 hours as randomly as it appeared. I now feel like a giant jello jiggler.

The good news, however, is that all signs now point to better days ahead. No more antibiotics for now, no more appointments until January, increased calories in my TPN and a temporary hold on tube feeds, and extra fluids for the rest of the week. It won’t be instant, I know that. After years of setting “I will be better by _______” deadlines, and after years of heartbreak every time Christmas, Easter, my birthday, etc. rolled around and I wasn’t better, I’ve stopped doing that. I still set deadlines, but I do so in a much more realistic and flexible way. Case in point: I should be noticing an improvement from all of these changes by the next time I see my GI specialist on January 19, and if I’m not then it’s time to brainstorm some more solutions.

So yeah, the last two weeks have been really tough, but they could have been even worse. “It takes a village to raise a child”…you know that saying? Well, it also takes a village to support someone with a chronic illness. I have always been an independent person and it frustrates me to no end that I can’t do everything for myself by myself right now. Oh believe me I try to more independent than I’m capable of, but that’s how I wind up running out of a store before paying to avoid passing out in the checkout line and lying in the backseat of my car for 45 minutes before I feel steady enough to drive home…a story for another time! As much as I hate relying on other people to do everything for me, it’s better than putting myself in danger so I’m working on just sucking it up and embracing my dependence.

And even though I hate my loss of independence, I’m part of an amazing village! Let me tell you about some of these amazing villagers.

There’s the obvious ones, like my mom, who has driven me all over the place for all sorts of appointments, who has patiently waited with me for appointments that were running late, who has advocated for me during these appointments, and who has gone out of her way to run all sorts of errands for me so that I wouldn’t have to leave the house. And there’s my sister, who offered to come wait with me in the ER the other night so my mom could go home, and who was up at 1am texting me to see how I was doing and making sure everything was okay. And then there’s my brother, who came to the ER at 10:30 at night so my mom could go home, even though he had been up at 4am for work, had only just returned home from two weeks working up north, and had to miss an end of exam celebration with his engineering friends. And there’s my brother-in-law who picked me up in the middle of the day yesterday and drove me back to the hospital for an ultrasound.

Then there are the countless villagers who show their support in other important ways. Like my aunt, who always emails me to say hi and see if I need anything. My best friend who listens to all the TMI details of chronic illness and always helps me find the humour in it all. There’s my old-coworkers-now-friends who continually check in with me to make sure I’m doing okay. There’s my support group of gastroparesis sisters who, no matter how sick they are or how much they are dealing with in their own lives, never fail to send me love and wish me spoons, including one who actually sent me a picture of her family’s antique spoon collection when I really needed the extra energy to get through the day. And my friend in Saskatchewan who sent me a just because care package in the mail. And my elementary school teacher who dropped by last week with flowers for my room. These are just a few examples, but there are countless more that I can’t even begin to list. I have been shown an overwhelming amount of love and support over the last little while. Almost every day, in some form or another, someone lets me know that they are thinking of me and that is a huge part of why I am able to maintain hope and smile through all of the yuck.

My village includes a great team of medical professionals, a team that continues to grow! Like my GI who said I looked exhausted, and the TPN doctor who I had never met that said I looked really unwell. This might seem counter-intuitive to you, but for me, hearing that I looked bad was a huge comfort! It meant that I didn’t have to try and justify how poorly I was feeling. And as opposed to when I hear that I look good, I didn’t have to smile and say thanks, knowing it was a big lie. There’s the internal medicine doctor who spent close to an hour taking my history last week. In the end he couldn’t do much for me, but I felt heard. There’s even the medical imaging receptionist who let me skip the waiting room yesterday and instead go lie down on a stretcher in the hallway outside of ultrasound and wait for my test there.

And there’s you, you reading this right now, because by reading this you are giving me a voice, and a purpose, and you are making me feel less alone.

So here’s to my village. My whole village. My family and my friends, and friends of my family and friends. Fellow spoonies who I’ve never met face to face but who know me inside and out anyway. My health care team that never stops fighting to help me see better days. People I encounter only once but whose kindness leaves a mark, who won’t remember me at the end of the day even though I will remember them. And everyone reading this.

My life is better because of you.

Thank you.

Just one thing

Well, it’s back to the drawing board. My career as a lady in waiting was very short-lived!

I am writing this from St. Paul’s hospital, where I have been since Monday afternoon. Timing worked out in my favour and I was able to get started in the home TPN program right away. So far ‘TPN school’ is going very well. I expected to be really overwhelmed by everything but surprisingly I am feeling very calm and confident. The manual I was instructed to read through before coming here states that “any bacteria that comes in contact with the inside of your central venous catheter or TPN system can be a threat to your life” and that definitely freaked me out a little bit. I already knew that about central lines but seeing it in print applied to my own life was a bit different. All in all, though, everything is really straightforward and some of the steps even appeal to the science student in me – such as using a needle syringe to draw up the vitamins and inject them into the TPN bag – it’s like being in the chemistry lab all over again!

Honestly, the most overwhelming part is trying to comprehend how I’m going to schedule the TPN and the tube feeds in the real world. It’s perfectly normal while in the hospital to be connected to at least one line all the time, but it’s a little less practical in the real world. Ideally I would like to try and have an hour or two of freedom a day in order to easily partake in real world activities, notably regular showering, but I would also like to avoid having to carry around two backpacks at once. It’s going to take some time to figure out a routine once I’m home.

But speaking of home, I am likely going to be discharged this Wednesday or Thursday! My PICC line is proving to be rather difficult to work with so I am having a tunneled central line put in my chest on Monday morning. If you google ‘tunneled central line’ you might read that it is a surgery performed under general anesthesia, and while that may be the case some places, that’s now how they do them here. My line will be placed in interventional radiology with local anesthetic and mild sedation – well actually I’m not 100% sure about the sedation part as different people have told me different things. I suppose I will find out on Monday! The doctors say it won’t hurt but I’ve heard differing things about that, as well. Just another thing to find out on Monday!

I cannot wait to get home! I miss my bed, I miss my room, and I miss my bathroom. I miss being able to get whatever I need instead of having to ask people to bring things when they come visit. I miss being able to go up and down stairs and I miss easily walking around outside. I miss being able to take meds on my own and grab whatever medical supplies I need without having to ask a nurse to find me something. I miss my independence. I miss having peace and quiet.

They say that absence makes the heart grow fonder and in this situation they (who ‘they’ are I’m not quite sure) are definitely right. I can guarantee you that when I get home I am going to completely relish all of those things that I miss.

But for how long? Next week will I still be grateful to have the PICC out of my arm and have both hands free? No…I’m probably going to be sore and annoyed that I need a central line at all. Two weeks from now am I still going to be excited that when I want medication I am able to take it right away without waiting? No…I’m probably going to be discouraged that I still feel sick and even need to take medication at all. A month from now am I still going to be grateful that the TPN is keeping me alive? No…chances are I am going to be frustrated that I can’t just eat and live the normal way. Will I always be happy to be home? No…I’ll probably be unhappy that my illness requires me to spend so much time in the house.

We want what we can’t have. We forget how bad things once were. We lose sight of how things have improved and instead focus on the things that are still hard. Things could always be better, but things could always be worse, too. We just often focus on the things that could be better instead of expressing gratitude for the things that could be worse but thankfully aren’t.

I’m not saying that we should settle when things are bad and just be happy they aren’t worse, especially if we have the power to change them. And I’m not saying we can’t be upset over our hardships because that’s not realistic and that’s not healthy. But since there are always going to be things about life that we don’t like and we can’t change maybe we could pick just one of those things and let it go. Maybe we could pick one of those things and reframe our thinking so it doesn’t seem so bad.

For now I pick having a central line. I don’t have to be happy that I need TPN, but at the end of the day, happy or not, I am going to have a central line. And since that’s the case, at least I am able to have my PICC line replaced by something that is easier to handle and maintain. At least I will be able to use both hands and manage it all on my own. At least I will be able to have a little more independence. In that case, having a central line doesn’t seem quite as bad anymore.

Just one thing. It’s not so hard. And who knows, maybe the change in attitude will catch on and before too long life will seem all around a little better and a little easier.

I’d say it’s worth a try.