Ahh, 23, another year that I fought my body and won- Rachel 23, EDS 0 – unless we are talking about quality of life or day by day challenges, but I made it, and that’s more than I can ask for.
Birthdays used to be SO important to me, like I was planning for my birthday as soon as Christmas was over, maybe before (my birthday is in March), and I wanted themed parties with lots of decorations, my friends, and most importantly, big cakes with lots of ice cream and lots of presents- not sure which was more important but those two were my priorities.
I remember being a ball of energy during March, intense and particular, but my parents never failed to create a beautiful, magical party for me. I was never disappointed.
All three of us kiddos had March birthdays, I was convinced for a good while that I was the oldest just because my birthday came first in the month 😂 That however didn’t hinder my celebrating, I was probably just 4 when I started planning parties ahead in great detail – I would make a fabulous party planner, though I think I was more decisive when I was 4 than I often am now.
I’m thankful to have such happy memories, and though I ate too much ice cream and put on some pounds in my childhood, I’m glad I enjoyed it while I could 🙂
Birthdays since getting sick have been a lot different! This is my sixth birthday with gastroparesis and dysautonomia, though the first and second year I was still able to eat a bit, so cake still happened in small amounts, until my 19th, I believe. Birthdays, like so many parts of our social norms/traditions/simple day to day outings or socializing are centered around food & gifts. So, what’s a birthday without a birthday cake? Well, it can be so many things…
You know people always say, “Age is just a number?” Or “do you feel any different?! Older?!” When you’ve really just aged one day – when you go to bed you are 23 & 364 days and the next morning you are 24 ?—yeah, okay party pooper, I know.
It’s just, at this point, I’m not super concerned with my birthday, and though it is nice to know that people are thinking of me, I just don’t want or need much of anything that I don’t have, and that is a blessing.
Of course I would love to be healed, if you have a cure, lemme have it, but I don’t think this is the year for the cure, though I hope it comes ASAP! I’m hoping for more relief, more energy, and less pain – definitely hoping for less pain and better pain management. Aside from medical wishes, I’ve had a tough time thinking about wants/needs, which isn’t a problem I’ve had a lot in the past 🙂
I would not call myself materialistic at this point in my life. I have so much and I don’t need anything, and I want so minimally, the greatest gift I can ask for is a day full of love, laughter, positivity, and simple pleasures. There’s nothing that means more to me than my family, and seeing them joyful and peppy, feeling at least a bit less of the burden that they face day to day is more meaningful than any gift I could be given. My parents are incredible, and I don’t think I tell them often enough, but they’ve done nothing but care and support us, they stick by us no matter what and do so without hesitation. I’m so thankful to have the parents I do, and I hope they know that.
Though I can’t have cake and I’m not up for parties or gatherings, having people, my parents and family included, celebrate and fulfill traditions that feel almost “normal,” and being treated almost like I’m not sick, like I’m “normal,” is a true gift. Trying to avoid talk about my medical situation and the troubles and challenges and moments missed due to that and having less questioning, less concern from all in my life creates a safe and fun and lovable environment for me as well as for others. A happy Rachel is a happy family, right?
I want to be boring and normal, so treating me like that, though not always easy, is a gift that allows me feel normal, and that’s all I want.
There’s nothing more important to me than my family (dogs included), and there’s so much on their shoulders though out this journey, and that’s hard for me to accept, but the times we spend doing fun things, even as simple as taking a drive, are the best times. I can’t afford to waste time, I can’t afford to hold onto anger or sadness because I can’t waste a “good” day or a good hour, so positive energy, simple pleasures and laughter, joy, harmony, these are all things I strive for.
Though you may not fully understand or even be completely comfortable with my ideas, the best gift is having others who want to embrace those times and help me make it happen; I have to live my life to the fullest, and sometimes that means pushing myself and taking risks, having new experiences, and figuring things out on my own.
My journey has been long and complicated, happy and sad, but mostly joyful and full of love, but it’s not over and I’m hoping that this year I will be able to turn a new leaf and have new experiences that people my age should have, so wish me luck, and thank you to everyone who is supporting me – especially my family and close friends <3