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It's OK to Have a Mid-Life Crisis When Your Illness Is Progressive


I wasn’t always scared of growing older.

I wasn’t always afraid of the term “death.”

When I was a girl, the progression of time never fazed me. I had never lost a loved one or experienced the process of grieving. I just always assumed that my family and friends would be with me forever.

And then suddenly, without warning, things began to change.

It wasn’t until recently that I came to realize just how terrified I am of growing older, of my loved ones getting sick, of death and dying. Even before I was diagnosed with Huntington’s disease (HD), I began to spend days under the covers, hoping to hide from the reality of the clock ticking on my wall.

I am 24. I am young, but I am having a midlife crisis.

According to Psych Central, “Experts agree there’s no single definition (of a midlife crisis), although a pervasive sense of disappointment and a nagging feeling that time’s running out would be among the major characteristics.” Doctor Larry Bumpass notes, “There is an array of at least 40 events that commonly occur at midlife, from losing a job to the death of a parent, divorce, or illness.”

To put it simply, a “midlife crisis” is not an age, but rather the state of a mind that’s becoming aware of its limited time and the tragedy that its passing brings.

Two years before my crisis began, I tested positive for HD.

On the eve of my “great awakening,” I spent the entire night tossing and turning in an attempt to shake off my usual bouts of vivid nightmares and shivering, cold sweats. The dark shadows that danced in the dim sky seemed like they would never go away. I began to feel caged within the blackness, convincing myself that sunrise would never come.

Like a faithful lover, the sun returned in the same way that it always had, but something inside of me had changed. My limbs felt as stiff as a board, and I struggled to lift myself into an upright position.

My head felt as if it had suddenly swollen 10 sizes. My eyes strained to dilate in an effort to take in the morning light.

Was this what growing older was supposed to feel like?

I groggily slumped my way into the bathroom and gazed into the mirror. The same, familiar woman who stood in front of me every day had been replaced by something unrecognizable-something foreign.

I leaned into the mirror so that my nose almost touched the glass. Slowly, I began to trace the outline of the once-smooth surface around my eyes, but it was not the sudden awareness of the faint wrinkles that left me bewildered; it was what laid beneath my gaze that startled me the most.

The illumination of light that had given me the name, “Ocean Eyes” had faded into a dull imitation of a sea that felt like an imposter. I felt as if my spirit was now deeply hidden beneath stormy waves that sat within pupils I’d trained to reveal the hopes and dreams inside my soul.

Suddenly, reality slapped me in the face.

Because I have tested positive for Huntington’s disease, I am fully aware that by the age of 48, my mind and my body will be rapidly accelerating into the inevitability of an early death.

I am already halfway there.

Whether my friends, my family, or my lovers believe it or not, this is my truth.

I am 24. I am “young.” I am having a midlife crisis.

And you know what? I think I deserve to have a midlife crisis.

I know that people (usually) have good intentions when discussing this topic, but hearing “Oh, you’re being dramatic,” or “You’re just overthinking things,” and “Honey, you’ve got all the time in the world,” really disappoints me…and frankly, I’m tired of it. When I decide to be open about my thoughts and feelings on this horrible, fatal hell of a disease that runs in my family, I want to be able to expect truth and respect on the matter, not words that consist of make-believe nonsense in an attempt to make me forget about what life has handed me.

With that being said, I hope you’ll hear me out.

Around the time a person reaches the age of 45, they begin to realize they’re halfway through their life. They start to feel like they’re running out of time. So, what do they do? They do things that make them feel alive. They finally fulfill those hopes and dreams they’ve put on the backburner. They go out and do things they will remember for the rest of their lives.

So since I, (as well as thousands of other HD warriors), have been stripped of many basic human opportunities, (e.g. having children naturally, finding a partner who is willing to be your caretaker, the inability to grow old with the ones you love, losing your sanity, etc.), then I think the world should stand by my right to have the same mental breakdown everyone else gets to have around their mid-40’s.

And to be honest, I wouldn’t be able to rid this feeling of “crisis” if I tried, (and trust me, I have).

But, I embrace it now, and so far, it’s been nothing short of liberating.

I wanted to dye my hair purple, so guess what? I did.

I have kept my hair long my whole life, so guess what? I chopped it all off. You know, just to see what it would feel like. (It felt great).

I’ve always wanted to travel, so guess what? I hop on a plane every chance I get so I can be with my HD family (thanks to the HDSA scholarships!), and I’m getting my passport next month.

I’ve always felt like I would be embarrassed if I were to move back home at the age of 24, but guess what? I’m here now and I’ve never been happier. I get to spend time with my mama (who has HD), my sister, and my nephew. My heart is fuller than it’s ever been.

Before my crisis, I hardly ever dressed up or did my makeup. Now, I make it a point to get up a little earlier every day so I can do my makeup and pick out a cute outfit, and guess what? I’ve never felt more fabulous!

Every time one of my favorite music artists comes to Dallas, guess what? I go, even if I have to go alone.

Even though I don’t feel comfortable hearing my own voice, and I don’t believe poetry is my forte, I’m creating and composing my very first spoken word album.

Although it was painful, I completely blocked some people in my life who I love and miss dearly…but ultimately would be better off without.

I’ve always felt pressured and rushed to finish school as quickly as possible, so guess what? I’m taking my sweet time.

And I’ve taken that extra time from slowing down on my schoolwork to fulfill my life-long dream of having my own website so I can write to my heart’s content.

To some, these feats might seem small, ordinary, and insignificant, but when I look back at what I’ve accomplished, I am proud, and even more excited about the plans I have for the future. My time on this earth is guaranteed to be shorter and more painful than people who are not ill. With HD, you are eventually forced to lose who you are, what you stand for, and everything you’ve built…but only after you watch one of your parents go through the same thing.

My heart is broken and still in the process of breaking, and although I will not get the chance to look back and remember all of the wonderful things I’ve experienced when I am older, other people will. Someday, I want those who are hurting and suffering to look at how I lived my life and feel a sense of hope. I want people to see what I have done and what I know I am going to accomplish so that they can find the strength to do the same.

I desperately want people to know they don’t have to feel guilty about doing things they love while their loved ones are suffering. You must take some time for yourself, too.

And I especially don’t want people to miss out on a full life because they get lost within the sadness that this sickness brings.

It’s OK to be sad.

It’s OK to feel the pain of suffering.

But please, I want to encourage you — try your very best to channel it into enjoying the things you love, even if you might not get to sit back on a creaky, old porch swing and reminisce on your life when you’re old and grey.

Long after you’re gone, people will pull out a great, big box full of your old pictures, and they’ll tell stories to your great-grandchildren about who you were and what you let your life represent. And it will be beautiful.

So please, let’s all let ourselves (at the very least) have this one thing healthy people get to have.

For the love of everything you love, have a midlife crisis.

You deserve it.

You need it.

And trust me, you won’t regret it.

This story originally appeared on Capturing the Corners