If I could write a letter to me on the day I was diagnosed...
Take a deep breath... Today is going to be a difficult one I can promise you that. Please remember how strong you have always been. You are going to have to get stronger. Today you are going to feel a sense of relief. You're going to feel like the labels are going to float away. You'll get excited thinking that you'll no longer be seen as lazy and unmotivated, that everything will suddenly get better. The excitement will quickly fade. Within the next 24 hours you will feel just about every emotion you've ever felt but it will be scrambled and mushed into a crazy massive slap in the face. Then you're going to cry...
A lot...
And then some more..
You will stuff your face full of articles and blogs and research and learn as much as you possibly can. You will focus so much energy on helping your family to understand, more energy than you have at your disposal, and eventually you'll give up. In giving up this fight you'll finally realize that the energy didn't need to be expelled. You'll realize again, like you have countless times in the past, that your family is unlike any other and they will always love and support you no matter the situation. Then you will smile and thank God for his endless blessings.
You will begin to talk to God more than before. You will thank Him everyday for the ways he has blessed you and pray that he helps you to recognize the blessings you overlook.
You will try different medications that will take you on a year long crazy ride. It will test your faith, your marriage, your job and make you question your ability to be a good mommy.
Don't worry dear, you are stronger than you know and when you cannot be strong any longer you'll fall into the open arms of a man who will give you every last ounce of his. You'll realize an entirely new love, and again you will smile... and then you'll hang your head and thank God for those blessings you didn't see.
You're going to have bad days, and worse ones... You'll have great ones too.
You will begin to peel back all of the pain and resentment that you have let build up around your spirit. You will stop breaking yourself down and force yourself to step back into the light. Then you will smile... And you'll drop to your knees and thank God for the blessings you couldn't see...
and you will be alright, I promise.
You're going to have bad days, and worse ones... You'll have great ones too.
You will begin to peel back all of the pain and resentment that you have let build up around your spirit. You will stop breaking yourself down and force yourself to step back into the light. Then you will smile... And you'll drop to your knees and thank God for the blessings you couldn't see...
and you will be alright, I promise.
Isn't it funny how we all feel the sigh of relief when we are told we have narcolepsy? The fact that now we can see that we have hope. That we have something we can research and find others that have the same thing. We have a family much bigger than the one we were born into. A family that understands all to well the problems that go along with having narcolepsy. Thanks for sharing your story. Take care.
ReplyDeleteWhat a beautiful letter, I am in tears. Thank you so much for sharing your beautiful writing with us, and your highs and lows. Your honesty is a breath of fresh air and many of the lows you describe here, I know others will relate so much. I'm so glad you chose to take part in this blogathon. I am cheering for you and sending wakefulness your way, Julie
ReplyDeleteIt's been only a year since my diagnosis...and there has been all of the above that you described...up until...the family acceptance (which was not-so-great) and which has made me feel, unfortunately, paralyzed into NOT telling anyone else. So... I continue to gather the right kind of "proof" as you described. I have even lied to my mother telling her I'm on Nuvigil instead of what I'm actually am on...Adderall. I literally am a 46 yr old woman...a mother to 4 grown young adults...a well-regarded professional business person...and a pretty great wife (if I do say so myself) with an extremely accepting husband...and yet...(sigh). My relief went straight to resentment (do not pass go...do not collect $200)...which has prevented me from showing my true self... which I realize I have done only to myself by giving away my power. I hide on the narcolepsy fb support groups, post as anonymous twitter & blogger profiles, and drive >1hr away to a doctor who doesn't know me socially. I watch and LIVE through people (like you) who display so MUCH courage than I have right now. I MARVEL at those carrying their "Narcolepsy Not Alone" declaration signs. And I pray that I come out of this strong and grateful for giving what knew was something wrong... for all of these years...an actual name!! Maybe I DO need to get on my knees...and pray for the self confidence that you envelope, Chloesleeps... and pray for what I desperately long to have...the ability to "peel back all of the pain and resentment" and to "stop breaking myself down". Can I?...I'm not really sure yet... at least at this point of my journey. Until then...the letter to myself lurks inside my head and plays out in my dreams... where I'm free-to-be-me. I truly believe that I was "meant" to read this today...this letter, and others, have inspired me to appreciate the process. I thank YOU so much and am also thankful for the understanding and guidance of my narcolepsy family...who have taken me into the fold... even though they don't even know my real name. I feel humbled and infinitely grateful. I hope someday that I can pay my their unconditional acceptance forward to another "RedBradshaw" who also needs a little coaxing "back into the light".
ReplyDeleteThank you so much, like you I was diagnosed only a year ago. It is a crazy ride my dear, but you have more strength than you know as well. I have started to learn that this is kind of a " two steps forward one step back" kind of situation. We will get there! When you walk into a room, you hold your head high and walk proud. You are exactly who you are and just from what you wrote I can tell that you are a pretty accomplished person. Look at it like this....
DeleteThere are a lot of successful people out there right? How many of them sleep twice a week? That's how you compare yourself from now on. You are you because of and despite Narcolepsy and you are a beautiful gift. Never sell your self short of that fact.
My name is Stephanie, not Chloe... I too had a hard time writing as myself so "Chloe" writes...
You use words like courage and self confidence. Writing allows me to be those things...
I too lack that courage and self confidence but somehow am able to put it on paper the way it's meant to be. Another one of the blessings I talk about. I never knew I liked to write... Narcolepsy helped me discover that:)
*Maybe sometimes to get to the rainbow,
We have to weather the rain...
My prayers are with you my sleepy friend... God bless
Thank you for sharing this Stephanie. I hear everything you said. It resonates because when our little girl was diagnosed with N and C at 4 years of age, I felt a huge sense of relief too. At least, I thought, We are not going to lose her. We spent the next 3 years pursuing treatment which entailed a transatlantic move and a lot of determination but she is doing really well now, propped up on Medications obviously. I love the title of your blog. Funny because I am writing a memoir which has a chapter with the same heading. That's what you adjust to with Narcolepsy isn't it? A new normal.
ReplyDeleteI trust you will have a very happy and wakeful Christmas and very much look forward to hearing more form you in 2014.