What It's Like to Celebrate Birthdays With a Life-Threatening Condition
As I’m getting older, my health has been declining. I now have more potentially life-threatening illnesses, rare diseases, chronic diseases and other diagnoses than I can possibly count, and I’ve come to realize I’m probably way over the “halfway point,” meaning I’ve lived for more years than I have left.
During my birthday month, ever since the diagnosis of my first potentially life-threatening illness, this gets me. It’s such a sobering thought to think that at 27 years old, I’ve more likely than not celebrated more birthdays than my poor body has left in it. It feels like a downhill slope.
This has nothing to do with lack of courage, lack of strength or lack of sheer stubbornness. There is only so much, so many diseases, so many pills, and so many times a body can go into anaphylaxis before their body just gives out. I don’t want death. I don’t fear death. I don’t think I’ll ever be ready for it. Yet I’ve also accepted that when it’s my time, it’s my time.
If I had my way, these would be things I wouldn’t even be thinking or needing to think about. I’d be traveling the world forever, running all the half marathons, still volunteering, getting married, having kids, working my 9-5 and doing the “traditional” thing. Then again, nothing about me or my life is traditional.
27-year-olds should not be having quality versus quantity of life concerns.
They should not come to realize that their parents could very well outlive them or see their parents break down in tears because they feel so helpless. Yet, there’s nothing any one of us can do to change these circumstances.
They should not be discussing life insurance and their final wishes with their parents.
They should not be deciding what funeral plans they would like. I’ve had to come to the conclusion that a traditional funeral is not a fit for me and my personality. Instead, I’m choosing a celebration of life, full of the most obnoxious colors — and of course, glitter.
They should not have to accept that due to an airborne latex allergy, certain items on their bucket list will never come true.
Nobody should ever have more life-threatening food allergies than years of life or live in a world where underwear could kill them (anaphylaxis to latex which means elastics too).
They should not be placed in so many situations where the outcome is unknown.
They should not have medical professionals fail them to the point of another doctor telling them their medical record for that one inpatient stay said “drug her up and get her out…”
We’ve gotten to where medications for one illness causes an increase in issues in another illness, or in some cases, a whole different and major illness altogether. So I’m forced to choose which way I want to “lose.”
No 27-year-old should have their full-time job be to stay alive and manage a very complex set of medical needs. Nor should they have to fight so hard for access to the care they need. After all these illnesses and all the things I’ve had to face, we’ve all had to change our plans and expectations for my life.
Despite all these illnesses, I do know nothing can ever take away how I choose to live and spend the time and the birthdays I was given.
How I chose and found joy and humor in the most unlikely of places.
How I went on every trip and bucket list adventure I could.
How we traveled the world — from learning to surf in Hawaii to discovering and snorkeling in some new favorite islands in the Caribbean: Tortola and Bonaire. I was also able to see the midnight sun in Iceland and sail the fjords of Norway.
How I’ve volunteered thousands of hours with kids including kids with their own chronic and potentially life-threatening illnesses.
How I ran every possible half marathon I could and being my stubborn self, pushed myself beyond that point for one final half.
We’ve learned even the seemingly smallest things and those which we take for granted most are worthy of celebration. Every birthday is a huge milestone as it’s another year I was given on this earth despite my continued challenges, new illnesses, and everything else thrown my way.
We’ve been going somewhere or trying to make my birthday extra special ever since 2013, as I know the same thought is in the back of all of our heads. “What if this is my/her last…” It’s now become a tradition just as much as celebrating the holidays.
This past year has been scarier, and had more near death experiences, surgery, hospitalizations, drastic declines than I wanted. Maybe as a result, this year these birthday plans seem to be more extravagant. It’s become almost a case of “why not?” Planning my birthday celebration is what gets me through these 700-mile round trip drives to see my specialists at my hospital and some of the truly awful medical things I’ve been forced to endure.
I can’t help but be excited for this year’s birthday plans, yet the pressure to make everything “perfect” is indescribable. What if this is truly my last birthday? How do I want it to be remembered? Who do I want to celebrate with? How are we going to spend the day?
The fear is so real that medically something is going to ruin this trip we’ve been planning for months. Last year taught me that I can plan the most perfect celebrations, but ultimately like every other day, my body is the boss. I had my first two EpiPen reactions to a food I had no idea I was even allergic to and spent most of the day in the hospital.
In the midst of all of this, planning these birthday celebrations and the celebrations themselves are a reminder in lots of ways that I’m more blessed and so incredibly lucky, despite how broken my body physically is.
Lucky to have such a caring and supportive family, lucky to have traveled all the places I’ve been, lucky to still have the few friends I do, as most can’t handle my illnesses, my truths and my story. Lucky for those who have come and willingly joined me on this unpredictable journey, and lucky to have access to the caring doctors I do and to the medications I am taking to stay alive.
Most importantly, I’m lucky enough that I’ve been given these 27 years, as I know that not everyone is so lucky. Some days I might question it, but I’m still here and still fighting. I can only hope for more time, more chances to go on more bucket list adventures and many more birthdays.