until the light returns

It’s been a while since I have taken the time to sit down and write; no agenda, no real reason, just a chance to get my thoughts on paper and maybe help even just one person feel like they aren’t alone in the current storms or struggles they’re encountering.
I have chosen not to talk about a storm I’ve been facing personally for the past couple of years, as I’ve been trying to navigate and process and explore the waters privately while I try to keep my head afloat.
But, today, I felt impressed to sit down and share a little bit about a struggle I’ve experienced; first and foremost because opening up and sharing and making my struggles transparent has been the single most effective way I’ve found in taking back my control and putting a name to my fears and doubts. Sometimes just saying it out loud helps me realize that the things I’m experiencing, no matter how dark or how beautiful, are just a part of my story.
They don’t define me, they don’t pave the path to my future, and they don’t have to control me any more than I allow them to. Sharing my story and my experiences always leads to someone reaching out and saying something to the effect of “you too?!?! I thought for sure I was the only person who felt that way/experienced that/knew that pain.”
And every single time I am humbled with the reminder that I am never ever alone, no matter how lonely or scary my darkness feels.
When we share our stories, we turn on the light, and we allow ourselves to see all of the many beautiful people sitting with us in the very same darkness.
So, here I am.

Two years ago I learned that I am a carrier for Hemophilia.

For those unfamiliar, Hemophilia is a blood disorder in which a male lacks the clotting factor needed to clot their blood. In the past, this disease was very difficult to manage and often led to “the boy in the bubble” stories, in which the person had to refrain from any activities that could cause injury, particularly bleeding. The scary thing about this is that even bumping your arm could cause an internal bone bleed, leading to very serious and even fatal consequences.
My grandfather on my mom’s side died from complications from this disease when she was only 19. Back then, many people were given contaminated blood transfusions or “bad blood” causing them to contract other serious diseases such as hepatitis and HIV. Many people died of complications from this disease, often times difficult to pinpoint exactly what it was.
I knew this about my grandfather, but it had never been a real point of discussion between my mother and myself. I always grew up hearing the best and most wonderful stories about the grandfather I never had a chance to meet, and part of me is thankful that those are the stories I think of when I hear his name, not the horrible disease that caused so much pain and darkness in my mom (and her family’s) life.

Just over 2 years ago, I learned about the possibility that I could be a carrier for this disease. I found out in a very abrupt and traumatic manner, and I truly felt as though the world I knew had been completely flipped upside down.

I found myself consuming research and knowledge and any bit of information I could, often times leading down a scary rabbit hole of feeling helpless, hopeless, and very alone. I completed genetic counseling, had lots of blood panels and tests performed, and eventually received the full write up confirming that I am, indeed, a carrier for this disease with mild symptoms that cause me to have difficulty clotting and bleed/bruise more easily than others.

The day I read my confirmed diagnosis, I felt like a stranger inside my own body. I felt betrayed by my own skin and bones. I felt scared and confused and I felt like there were too many unknowns ahead of me.
I found myself feeling angry and resentful, placing blame wherever I could in order to avoid the fear and confusion. Simultaneously, I began meeting with specialists and geneticists in order to learn more about what this diagnosis means and how it will impact my life and future. I spoke with my mom and her family members willing to talk with me about their experiences with Hemophilia or being an obligate carrier, and I will always be so thankful for the love and support I received from all of my family.
In an attempt to keep their privacy, I will only speak about mine and my mom’s journey and experiences in any posts I choose to share.

The biggest thing I learned about my diagnosis is that it will impact my choice to have children. Thanks to modern medicine and technology, I have many options once that time in my life comes around.
Some of these choices include sex sorting, in which I would only be able to have girls in order to avoid the spread of Hemophilia to my potential son, but also continuing to run the risk of passing on the carrier gene to my future daughters. I can undergo IVF in which all eggs would be tested in order to eliminate the spread of the carrier gene to any of my children. I can adopt. I can choose to have children naturally, with the known risk that I could continue to spread this hidden disease that has lived within my family for years.

Those choices are my own, but I have so many choices.

These choices brought a whole new ocean of fear and uncertainty when words like “automatic high risk pregnancy” and “frequent monitoring” and “placenta testing” swirled around me. I felt really frustrated and out of control, particularly because having children is something so important to me.
But infertility, difficulty with conceiving, complications in pregnancy, and genetic disorders are all things that are so often not spoken about in our highlight reels attempting to make life look perfect all the time.
So many people silently struggle without a single person aware of what’s happening in their hearts and homes. And that’s why I choose to share. For the people too scared to share their own stories. For the people sitting in a big puddle of darkness just begging someone to turn on the light. For the people feeling like they have never been more alone while they are surrounded by a million people who could never understand.

I am thankful for the team of specialists here in Boise that have helped to alleviate some of my fears and start giving answers to my many questions. I am thankful for the hope that I discover every single day with every little bit of knowledge I receive. I am thankful for the family and friends that walk quietly beside me as I discover new layers to my story. I am most thankful for the family and friends that continue to love me unconditionally no matter what new layer I expose.

As many of you can probably guess, I started this Hemophilia journey in a relationship with a partner by my side, and when that abruptly and painfully ended, I felt like I had been left alone to navigate these rough and scary waters.
I felt so, incredibly, angry.
I felt confused.
I felt unlovable.
I felt abandoned.
But little bit little, I felt strong enough to turn and face this storm alone. And that’s exactly what I’ve done.
And, now, I’m here.
And it’s been over two years of learning and processing and healing and discovering my own strength in whatever storms life throws my way. I’m putting one foot in front of the other and finding hope in each day life brings. I’m finding safety in the arms that still reach out to hold me up when I cannot stand alone. I’m finding courage to trust the legs that have been underneath me all along.
And I guess, at the end of the day, that’s why I’m sharing this with all of you. Because life looks one way from the outside in, and so, vastly different from the inside out. We all have our highlight reels, our best selves, the face that we choose to put out to the world. But, behind the scenes and the filters, behind the perfect lighting and the pretty words, there’s a lot of pain.
There’s a lot of confusion and darkness and fear and unknowns. And, I’m learning, that hard is just plain hard. We all experience our own shades of blue, but when we strip the reasons away, we are left with the same color and the same hurt and the same helplessness. And it can be pretty damn scary.
But once the dust settles and the initial fear subsides and we find courage to reach out toward the thing we are most afraid of, we will often find a lantern in the darkness.
A light that helps us see all of the many faces around us with the same exact uncertainty reflecting in their eyes.
When we share our stories, we turn on the light, and we allow ourselves to see all of the many beautiful people sitting with us in the very same darkness.
Sometimes, just knowing we don’t have to sit in the darkness alone is enough.
So, here I am.
I am here in the darkness, and I will sit with you
until the light returns.

One thought on “until the light returns

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s