Guest Post: Dear Dylan – A letter from Jennifer to her son

by julie on November 13, 2013

JenniferGuest post by Jennifer to her son Dylan in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here.

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Dear Dylan,

Today has been a rough day for you. Your great grandma is being buried today and it’s triggered an emotional state neither one of us understands. We have both been at our wits end for months. I know you are 18 and an adult now but you are always my son. I haven’t always known the right things to do or say and for a while I thought it was just part of growing up because it started when you moved to your own place for school. All teenagers fight depression and seem to want to sleep all the time, It’s stressful starting college and living on your own. Right?

Faithfully we started with our family doctor and had a sleep study done. The sleep doctor said you have sleep apnea so he put you on a cpap. But, you are still having all these symptoms, including depression and hallucinations so now you are sent to a psychiatrist. You also have loss of muscle tone and weakness so back to the family doctor. Months and months have gone by and nothing feels right. We’ve researched and asked about narcolepsy but nobody either knows much about it or knows how to treat it. Our doctor thinks maybe you should see a neurologist. I find one that specializes in sleep disorders but it’s a month to get in. Meanwhile, you feel like you are going crazy and I spend many sleepless nights offering support long distance and worry about losing you.

Today I stay home with you because I fear that today is the day you decide you can’t take it anymore, today is the day you will stop fighting. I call the neurologists office because I don’t know what else to do for you but somebody has to help.

I can only be thankful for the miracle that somebody cancelled. 
“Can you be here by 10?” 
“Yes! We live an hour away but I will get him there!”

I may have driven a little fast and my adrenaline was pumping but we are here. I don’t know what to expect. I want an answer but we may get nothing or more tests or need to see someone else, again.

We fill out the paperwork and are shown to an exam room. Dr. Rai walks in, looks over everything we brought, which includes all your records from when this started, and asks a simple question.

“Why have you not been treated for narcolepsy?”

I melt where seconds before I sat so rigidly, ready for another fight. My entire body relaxes and tears start streaming down my face. We explain how many doctors we have seen and he says, “All of this is due to narcolepsy. From now on you don’t need to see anybody but me.”

I want to jump up and hug him, this total stranger who has suddenly given hope when our hope was almost empty. I look over at you and you’ve never been one to show many emotions but I see maybe a glimmer of hope in you too. 

He recommends Xyrem. I know about Xyrem because I just finished this book about one woman’s struggle with narcolepsy and I’m aware of its side effects but also how it helped her get her life back.

From that moment I know that we can do this, I know that you can do this.

The rest of the day we spend together. We watch the Xyrem video and begin this long journey how we’ve always been, together.

From that day it has not been easy for you and it still sucks, but we had an answer.

Dylan, you have narcolepsy but narcolepsy is not Dylan.
Dylan is a kind, gentle person who fights for justice.
Dylan is a talented musical artist.
Dylan loves his friends and his family and has always been a supportive big brother.
Narcolepsy is not any of those things.

I know there is still a long road ahead for you but you learn how to cope better every day. There are days that are still extremely rough and there are times when emotions cycle with cataplexy, but I see in you a new strength and resolve. I see you making your quality of life better and you fighting for justice for yourself. 

Xyrem hasn’t necessarily worked out the best for you and we were so hopeful that it was the answer. What I’ve seen though is that even though you struggle daily, you’ve made yourself the answer by not giving up.
Finally getting someone to listen was the beginning but it has been your strength that has made it better. I am so proud of who you are and where you are in your journey. 

You are all the things you have always been. I love you with all my heart.

Mom

{ 7 comments… read them below or add one }

Jenn November 13, 2013 at 5:41 pm

That is a beautiful letter. You are an amazing MOM! Take care, and please tell Dylan know he is not alone, and so many people are on his side. Take care!

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delayed2sleep November 14, 2013 at 4:32 am

It is a very lovely letter, Jennifer, and I hope you’ve sent a copy to Dr. Rai. He deserves it (and maybe that hug, too).

(I don’t have narcolepsy, but I know the revelation of finally, finally finding a doctor who believes me and gives me a name for what ails me.)

Best wishes to Dylan!

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Elizabeth November 14, 2013 at 5:08 pm

Wow. I am in tears. I first started showing signs of narcolepsy around age 12 (falling asleep in class) and my mom took me to the pediatrician for some tests (thyroid, anemia). The doctor’s conclusion? “She just needs more sleep than the average person.” I started developing cataplexy a year or so later. I remember saying to my mom, “Do your knees ever buckle when you laugh? Mine have started doing that sometimes.” Despite the fact that she actually knew a woman with Nw/C and knew to call this strange muscle weakness ‘cataplexy’, she didn’t take me back to the doctor. The symptoms got worse over the years but I learned to suppress my emotions around strangers (to avoid cataplexy) and got used to falling asleep all the time. College was a nightmare. I was frequently suicidally depressed and have distinct memories of suffering through sleep attacks while trying to take exams. Needless to say, my grades were AWFUL, but I somehow managed to graduate. Fast forward to my late 20s and the advent of Google (hallelujah!!) and I finally started to accept that I might really have this weird disease called ‘narcolepsy’. I realized that Hollywood’s depictions of it weren’t exactly the way it went down in real life (I’m looking at you, “My Own Private Idaho”). I didn’t have health insurance at the time, but I was so desperate to finally get help that I charged the full cost of a sleep study to my credit card. After the MSLT was finshed, the technician said to me, “Uh. Usually we have you come in later to discuss the results but you might want to stick around and see if the doctor can give you some medication today. You were asleep in 20 seconds and in REM in under a minute.” Ha! I passed! I went home that day with some samples of Provigil and the most satisfying sense of validation I have ever experienced. FINALLY! I really wasn’t just lazy, or depressed, or in need of exercise or better eating habits, or, or, or… The doctor had given me a diagnosis and there were medicines that could help me! Of course, the excitement over finally being diagnosed was short-lived when I came to realize that the available medicines weren’t free of side effects and didn’t work miracles. But at least I didn’t feel mostly dead anymore. I still get very frustrated when I think of how different things might have turned out if I had been correctly diagnosed earlier, but I can’t change the past. Geez. Sorry for the mile-long comment, but this just really touched me!

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Jen December 15, 2013 at 10:02 pm

I’m sorry, I haven’t looked at the comments in a while. Thank you for your comment, it was perfect. I wish a diagnosis was magical and it was all fixed but unfortunately we all, pwn’s and those that care about them, fight everyday. We can’t change the past but we can make the future as bright as we can to others who may be going through the same struggles.

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Elaine Armstrong November 15, 2013 at 9:33 pm

I cry every time I read a Dear Diagnoses letter.

I`m so happy for you both that you finally found an understanding doctor.
You seem to have a great mother /son bond… It will make your journey so much easier..
Ye are not alone xxxxx
Best Wishes
Elaine

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Julie Fain April 27, 2014 at 7:11 pm

Wow, what a fantastic letter. I’ve been avoiding reading any of these Dear Diagnosis letters because I knew they would put me to tears lol. This is the FIRST ONE I’ve read and I’m already crying! It reminds me of my darkest hours and everything my mother and I went through when I was trying to find the same answers.

You never have to feel scared and lost like that again. None of us do. We have SOME answers and an entire community of people who understand and care; Narcolepsy doesn’t stand a chance!

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julie April 27, 2014 at 8:28 pm

Thank you so much for checking these letters out, Julie! They are tear-jerkers, but such amazing reminders and notes to self in here. Your friend, Julie

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