“Santa! I know him!” “Buddy the Elf, what’s your favorite color?” “I just like to smile; smiling’s my favorite.” These are quotes from my favorite modern Christmas movie, “Elf.” I’ve seen this movie four times within the last two weeks. Do you what that means? The holidays are upon us! With less than 10 days to go, what follows is my wish list to Santa.
I hope you don’t find it odd that I am writing you again after a 25-year hiatus. While I may have stopped writing, I never stopped believing in the magic of the holiday (chalk it up to being a kid at heart). The days between Thanksgiving and New Year’s have always been, and continue to be, my favorite. From the sights and sounds to the joys of celebrating with family and friends, I never want the season to end.
In the past few years, the magic of Christmas has meant even more to me because I am truly grateful to be alive. Three years ago, a couple weeks before Christmas, my world was turned upside down. I spent 10 days in ICU where I was eventually diagnosed with end stage renal (kidney) disease and had to start dialysis immediately. The details are a little fuzzy because I was so out of it, but my mom told me at first the doctors didn’t know what was wrong or if they could save me. She also told me she spent a lot of time praying. Looking back, the prayers definitely helped but I believe so did the magic of the season.
As a grown adult who almost didn’t make it, I’m not sure I have any right to be asking you for gifts, but the little kid in me has a few requests. This list is pretty far from traditional, but if you’ve been following along, you know my life lies in nontraditional these past few years.
1. More experiences. Granted, I have a chronic illness and I spend more time being a patient than not, but I have good days. And on those days, I want to go out and experience as much as possible with as many people as possible. This helps me feel “normal.” Don’t be afraid to invite me out; I may not always be able to do the things you do, but it’s still nice to be included.
2. Listen to me. There isn’t a better feeling in the world when you truly feel like you’re being listened to. I haven’t always been in a place where I want to share my story but I’m getting there. And now that I have a better understanding of what’s going on with me, I want to talk about it. Before being diagnosed I can honestly say I knew less than three people with kidney disease and those people rarely talked about it. I’ve come to realize it’s not a widely discussed disease, but it should be because it’s a leading causes of death. Does dialysis hurt? I want people to ask me questions. Do you know I don’t pee? Let me talk about my new normal. Did you know I’ve had diabetes for 20+ years? Let me stress to you the importance of getting regular check ups and not ignoring your health.
3. A good pair of headphones. I spend most of my time listening to music or Ted talks while I’m at treatment and I can’t tell you how many headphones I’ve gone through in the last few years.
4. Acceptance of myself and the mistakes I’ve made. It’s been a hard pill to swallow trying to make peace with the fact that I was mostly responsible for my kidney disease. My doctors have told me to not be so hard on myself because this would have happened down the road but down the road wasn’t at 30. Had I not thought I was invincible and actually managed my diabetes, I potentially could have held dialysis off another 10 years and gotten to accomplish a few more things on my list. I can’t change the past, I know this, and I wouldn’t want to now anyway, but it would be nice to have those voices in my head, the ones that pop up from time to time, telling me I royally screwed up, quieted.
5. Hoodies. Zip up ones to be exact. The warmer the better. I wear two to dialysis each night (it’s that cold even in the summer). They don’t even have to be that nice because I cut holes into the upper arm so the nurses have access to stick my needles in.
6. Visitors. In three years I have had 34 procedures. Imagine, if you can, all of that time spent in hospitals and out patient facilities and then the time it takes to recoup. It gets lonely. It’s not always easy for me to get out but I’m usually well enough for people to stop by. Come visit. I’ll supply the wine and who doesn’t like wine? And I get it, people are busier than ever, so if our schedules never sync up, at least reach out. A simple text letting someone know you’re thinking of them can go a long way.
7. A nose warmer. If you haven’t heard of this, don’t worry; I hadn’t either until this past year. But it’s genius! I’m always cold plus they keep dialysis centers really cold. The one part of my face I can never keep warm is my nose and then one of my technicians explained to me the awesomeness of a nose warmer. Now I need one.
8. Easier days for my mom. I know that’s pretty subjective, but however you work that out would be great. My mom works two, sometimes three jobs (to pay her bills and some of mine because I cannot work full time), has a couple of her own health issues and is my main caretaker. I’m at the age where I’m supposed to take care of her and it breaks my heart that I can’t be that daughter right now.
9. Dialysis outfits. AKA pajamas. I have two “outfits” I rotate but that means constantly having to do laundry. Fleece bottoms for sure since I’m always cold. And tops – Old Navy has the best and they’re usually on sale for $5. Short sleeves since my access is in my upper arm these days. And honestly I could care less if they’re matching or not.
10. A boyfriend. I know this is more Cupid’s area of expertise, but I know you’re friends so I’m asking for you to put in a good word. I want a guy who is interested in long term, who has a sense of humor, and good looks wouldn’t hurt either. Most importantly I want a guy who can understand dating someone who is chronically ill. I would like to go on just one date that doesn’t end with the guy telling me to get better soon. Clearly he wasn’t listening the entire time, even a transplant isn’t a cure.
11. Strength. I know this really comes from within, but just like acceptance, I could use a push in the right direction. You can’t have the good without the bad; I know this. The bad days show you what you’re really made of; I know this too. I’ve said these very words to other people before. Yet as of lately I seem to fall apart at the bad days. I question how I’m going to get through the latest issue, and although I always do, I make myself even more upset in the process. Come to think of it, I have the strength, but what I need is a good coping mechanism. Or 12, you know, if they’re on sale somewhere.
12. A living kidney donor/transplant. I know, I know, this may be a long shot but it has to be said. It’s all I wish for on my birthday, on other people’s birthdays, for the past few Christmases and New Years. I figured maybe if I write it down it’ll have more of a chance to come true. Don’t get me wrong, I’ve been so fortunate to have many people come forward for testing, but non have been a match. So I am still searching for my hero. And I know I’m working through some issues currently to get me back on the transplant list, but when that day comes, because I am confident it will, I would like to have a donor lined up.
While this list is in no particular order, I do have my top picks. When I was a child, I would go back over my list and star the things I wanted the most since I knew you couldn’t get everything. Typing this letter to you makes it a little more difficult to do that so I will just lay it out here for you. Understanding and acceptance are at the top of my list followed by new coping mechanisms for the not so good days and the nose warmer (mostly because it looks interesting).
Lots of love,
P.S. I promised my niece and nephew I would put in a good word for them when I talked to you next. They’re my world so I hope they’re on the nice list!
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