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A Funeral for My Health

Editor’s note: I know I have not updated this site in awhile, but I’ve gotten a few requests to do so, so here I am. This is a column about the grief I felt after being diagnosed with EDS, which happened in March 2018. It originally appeared on the Pain News Network.  It took a long time for me to process everything. But I’m happy to report that a week after I was diagnosed with EDS, I went on a date with a guy name Chris, and we’ve been happily dating every since. So I did, in fact, find love. (Something I was very specifically worried about in this column). It still remains one of my favorite columns I’ve ever written. It’s not exactly SEO friendly, or Click Bait, but I promise it’s worth a quick read. And if you feel like life is dealing you a lot of loss right now, in whatever form that may be, let me tell you that you can get through this to the other side. But for now, take all the time you need to sit in your grief — it is worthy of your time, and there is no rush.

I want to have a funeral for my health. I want to go abroad and throw its ashes into the sea while wearing a beautiful black dress and Jackie O sunglasses to hide my tear-stained eyes.

I want to take a week off work and forget to shower while everyone brings me casseroles. And I want all of my friends and family to acknowledge what I’ve lost with slideshows and poorly written eulogies that succeed in making everyone cry.

I want to drink too much wine in a vain attempt to numb the pain, and maybe even take up smoking and a few bad men.

I want to sit around with lipstick stained coffee cups late at night telling stories about how amazing it was — my health.

How it let me lead so many youths on mission trips to far-off places. How it let me fall in love so many times. How it let me shower without pain, lured me into believing I would be immortal, and how it allowed me to travel the world.

I want to take all the time I need to figure out how the hell I’m going to live the rest of my life without it. How I will find love, be independent, and survive all of my physical limitations.

And I want the planet to just stop turning for one second while I catch my breath and adjust to the fact that world is a different place than it was.

The obituary would read as follows:

Crystal Sue Lindell’s health died after a 5-year long battle with her body. Her health was 34.

News about the loss came via email from her doctor when he confirmed her worst fears: She likely had hypermobile Ehlers Danlos syndrome (EDS) — a diagnosis that meant that she would not only never get better, she would likely continue to get worse.

Her health is survived by her body, which will, unfortunately, carry on, in immense pain, despite the loss.

There is no cure for EDS, and as such, her health is completely dead.

She looks forward to seeing her beautiful health again one day in the afterlife, where she hopes it will be waiting for her among the stars.

In lieu of flowers, Crystal asks that donations be made to EDS Awareness, a non-profit online resource for the EDS community.

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Finding Out I Have EDS

Editor’s note: I know I have not updated this site in awhile, but I’ve gotten a few requests to do so, so here I am. This is a column about how I was diagnosed with EDS, which happened in March 2018. It originally appeared on the Pain News Network.

It turns out pain has been running through my veins all along. It has been a part of my bones since the day I was born. I just didn’t know it.

I have recently been diagnosed with something called hypermobile EDS, which is a subtype of Ehlers-Danlos syndrome. Basically, my connective tissue is weaker than it should be.

It explains why I spent the last five years feeling like the bones in my rib cage were cracked. It explains why my legs and arms are often painted blue and purple and shades of Army green with bruises from injuries I have no memory of. And it explains why my ankles gave way so often over the years that I ended up with an entire dresser drawer full of beige ankle wraps.

It also explains why everyone who ever loved me would describe me as clumsy. And why I got tendonitis at such a relatively young age. It explains my vision changes and my “bad veins” and my soft skin.

Readers have privately messaged me many times to get checked for EDS, but I thought it was too rare. I thought my doctors would think I was stupid or crazy for asking about it. And I didn’t think it ran in my family.

I was devastatingly wrong about all those of things.

And at every crossroad over the last few weeks, at every opportunity to find out that maybe I was overreacting, my worst fears were confirmed.

First by the osteopath, who asked if I could touch my thumb to my wrist, and when I showed her I could, said plainly, “Oh yeah, you could definitely have EDS.”

Then by my cousin, who herself has suffered from unexplained pain and health issues for years. When I asked if her doctors had ever thought she might have EDS, she replied, simply, “Yes, they have.”

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Next came my mom, who I tried to avoid involving in all this for as long as possible, because I knew it would be harder on her than it was on me to find out I might have EDS. As she sat on the couch across from me, she scrolled through the list of signs and symptoms on her phone and then abruptly stopped.

“I think my dad had this,” she said.

A revelation. An epiphany of the worst kind.

Her dad. The man who died when I was 3. The man everyone always said spent his life dealing with unexplained pain. The man I was haphazardly compared to whenever I popped pills. The man who I had no memory of. It was him. He was the link.

And then the dots just started connecting themselves. Like when you watch an eight-part Netflix show and it takes the characters until the very last episode to realize that the killer was in the house all along and you’re screaming at the TV to try to tell them, but they just don’t see it.

Then, finally, they see it.

It turns out his mom likely had EDS too. My mom’s grandma, and my great-grandma, Hazel. The family lore is that she was diagnosed with rheumatoid arthritis at 26 and spent most of her life miserable and in horrible pain. I have now discovered that her RA was probably, at the very least, an incomplete diagnosis.

When I talked to her son, my great-uncle, I expected him to prove me wrong. To say something that countered my suspicions. But he did exactly the opposite. The last year of her life the doctors had told him that her body was like a bunch of bricks and the cement holding them together was deteriorating. EDS explained with a construction metaphor.

Even more heartbreaking was that he said all they ever gave her for her pain was aspirin. That’s it. Aspirin. And it did not help.

I had been hoping — since it was so long ago — that they were more generous with the pain medications at the time. That they had gladly given her all the morphine she wanted. But, as with so many things lately, the opposite of what I believed was actually true.

I told my pain specialist at the university hospital in Wisconsin about all this. And until the very end I hoped he would prove me wrong. That he would accuse me of being hysterical. But instead, he said simply, “Ehlers-Danlos Syndrome is a possibility, based on your reports and my prior examination. Best bet would be for you to come in for a visit.”

And that’s when I knew. That was all I needed to finally understand that the killer was in the house the whole time.

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

It played over and over and over in my head. I let myself think for a second. There it is. Ehlers-Danlos Syndrome is a possibility.

I scheduled a visit for March 15. And this week, after spending about 45 minutes bending me like a Gumby doll, he confirmed it. I have hypermobile EDS – or hEDS for short.

I am fairly certain that all of those wonderful, strong people out there who live with EDS will know how devastated I am by all this. And how sad it makes me. I cannot talk myself out of the grief I have been feeling. Because now, not only will I likely never get better, the odds are high that I will get worse. There is no cure, only treatments that manage the symptoms. And physical therapy to prevent others.

All I can think about is the doctor at Loyola from the very beginning. The one I first saw with shooting pain in my wrists five years ago. The one I went back to a few months later hoping to find answers for the new pain in my ribs.

The one who looked right at me and said, “Please stop coming in. There is nothing I can do to help you.”

The one who could have found this so easily, if only he had taken the time to look for it. The one who pushed me into piles of medical bills and doctor visits and nights with unexplained pain because he thought I was making it all up. Or at the very least, overreacting.

I want to go back to his office and show him what I learned. I want to yell in his face, “IT’S EDS! I WASN’T BEING CRAZY! I WAS IN PAIN!! I NEEDED YOUR HELP!!!”

And then I want to cry. Again. Because crying seems like the only appropriate response to all of this right now.

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Working title: I’m really fucking scared I won’t ever have kids

I got my fucking nails done this weekend and it’s making it really hard to type. You would think as a writer I wouldn’t give into such frivolous crap because my craft comes first and using a keyboard is part of that craft, but I did. And it’s mostly because I want a boyfriend.

Well, I don’t really want a boyfriend exactly. Honestly, I’m looking for more a baby daddy. I want a kid. And I’m 34 and the chances that it’s going to happen get smaller every freaking time I get my stupid period.

The pressure to beat my biological clock feels like it’s suffocating me. And I have found myself literally dating with the sole goal of finding a real-life sperm donor.

It’s not going great.

I mean, don’t get me wrong, I also want a husband. But I don’t feel any particular rush to nail that part down. There’s no internal organ that stops letting me get married after a certain age.

But when it comes to children, there’s a deadline. And the problem is, it varies from woman to woman, so I can’t even be sure if I’ve already hit mine.

As I was driving through literal snow-covered streets Monday night on my way to meet up with a hot Venezuelan guy who had a dog, and I don’t even like dogs, I found myself wondering if I would actually be sincerely happy with this man if it was just him and me and no baby. And a dog. Like would I be thinking about a future with him if the only thing we had was real love between us?

I couldn’t be sure. But it did make me realize that I have been skewing my standards.

I often feel behind in life because of my health. It’s like I lost a bunch of years to the abyss because of my chronic pain. And even now, I’m on enough scary drugs that I honestly don’t know what would happen if I did have a baby. I have started asking all my doctors and mostly it’s a lot of “we would have to see” or “we would take you off that” or “I don’t know. Are you even seeing anyone?”

No. Ok. Gawd. I mean I was. I had a glorious six-week relationship with this hot Mexican guy that I thought might be going somewhere, but then I showed up at his house unexpectedly one Saturday night, and he wouldn’t let me inside. I’m pretty sure he was cheating on me, which was especially odd because he was the one who insisted on exclusivity in the first place. But a part of me wants to believe it was something less hurtful, like a secret cocaine habit, or an undercover FBI operation.

Regardless, we haven’t talked since. Which especially sucks because I left a pair of shoes there and now I’m never getting those back. And also, honestly, I had just bought us a bulk box of condoms and some fun new lubricants a few days before that, and now they are just sitting in his bedside drawer being unwrapped for the next girl.

So, you know, that’s heartbreaking.

You might be thinking, wait, condoms? I thought you wanted to get pregnant. And look, I probably would have tried with him. But there is something to be said for waiting a few weeks first. Because you never know when a guy has a secret cocaine habit.

I actually looked into freezing my eggs last night. I mean, there’s always that 401k Money I have that’s not doing anything. But it turns out even if you do that you still have to get pregnant by 38. That’s less than 4 years away guys! Why even bother?

So now, here I sit. My career is great. I just got a promotion actually. Typing hurts and I’m seriously debating taking some scissors to my acrylics. And my health is the roller coaster mess it always is.

And I’m single. And childless. And on Xanax. And I’m praying that someday soon, I won’t be any of those things.

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