Sunday, November 16, 2014

What Dreams(.)(?)(!)

“If men only felt about death as they do about sleep, all terrors would cease. . . Men sleep contentedly, assured that they will wake the following morning. They should feel the same about their lives.”
Richard Matheson, What Dreams May Come

What dreams....

The way that sentence ends could lead you to a thousand different conclusions.

What dreams? Is different from…

What dreams! Is different from…

What, dreams? Is different from

What dreams.

For me, it is an ever changing punctuation mark. Because of course, it depends on what dreams you’re referring to. My actual literal dreams that haunt my pshyche if and when I actually get to fall asleep? Or my metaphorical “dreams” that have been deferred and left to fester like a sore only to run away time and time again?

I used to have what dreams!

But lately it feels more like what dreams?

Perhaps this post got off on the wrong foot. I am currently at a gratitude yoga retreat (which I will blog specifically about at another time) and I realize how negative and ominous I am sounding.

So, let’s try this again, perhaps with a little more gratitude and optimism.

The best way to make your dreams come true is to wake up. - Paul Valery

My dreams have changed. My life has changed. It is a daily struggle to accept both, but I am learning to be grateful for the insight it has given me. 

I have put a lot of thought into dreams and dreaming lately because my literal, physical dreams bully me on the playground of my pillow and because I’m playing a game of tug of war between my metaphorical dreams and my reality and I still don’t know who’s going to win.

My Literal Dreams:

“Na-na-na-na Boo boo!” Is what I hear when I wake up after a very vivid dream of holding my newborn child in my arms, or taking my kids to school. 

“Psych!” Echoes in my temples as I pull my hands up to my face in the dark and realize, that yes, I’m still missing a fingertip even though five seconds ago, in the dream world, my hands looked like they used to.

It is a slap to the face. It is sick butterflies floating around and rotting in the pit of your stomach. Realizing that you’re only dreaming while you’re dreaming is probably the worst part of it all.
I tell myself in my sleep “this is just a dream, this is just a dream” really believing that it will soften the blow when I wake up. But it never does.

I try not to interpret my dreams. I just let them happen. But I know what they mean. I know what my dreams are telling me. I understand that I am still in the process of accepting my reality. I know it’s not going to be easy, hell, it HASN’T BEEN easy. But I really don’t know who ever lead me to believe it would be.

My Metaphorical “Dreams”

I had dreams once. Big dreams. I still have them. But I don’t approach them or anticipate them with the same na├»ve hope as I did before. My dreams have lost their luster, their appeal, their magic. My dreams are tethered to my reality and I have yet to decide if this is the natural and wise progression of what happens to us as we mature and experience life, or if it is, at the end of the day just another one of the great tragedies of human existence. After all, don’t we tell children to “dream big,” and “reach for the moon?” Aren’t we supposed to want the most out of life? What does it say about us if we settle for mediocre dreams that only mimic our reality and don’t push us in new directions?

Books I've been published in....
Perhaps it is because, in retrospect, most of my dreams have come true. Getting published. Teaching. Finding love and getting married. Having a job I love. Performing at the Nuyorican. Acting professionally.  (Not very exciting dreams to have, but they are mine and I believe in them) Of course, I have  fantastical dreams also: win some great literary prize, be on Oprah, travel the world, own a bookstore, be remembered for my writing and talents. 

But I have always dreamed those with caution. Knowing I would be thrilled if they happened, but never investing enough time, energy or talent to actually see them through. If I don’t try, I can’t fail.

And yet, there are dreams “post sclero” that I dare to dream that I know I can and only WILL fail at:
Being “normal.”
Being “healthy.”
Being “whole.”

It is these dreams that I have to talk myself out of on a daily basis because I know what it feels like to have your dreams deferred. And I am here to tell you that not only does it stink, fester, dry up, rot and explode, it also implodes on itself and on you….leaving you all alone to gather the rubble with nothing but your bare hands and a prayer.
It is these metaphorical dreams that become literal nightmares, waking me up in the middle of the night, reminding me of all that is wrong with me, all that I can’t control.

But what am I getting at with all of this? In the context of my illness and in the recent transition into my 30s, why do my literal and metaphorical dreams matter?

On the one hand, because as I’ve mentioned before, my illness changed my dreams. Rocked me to the core and made me believe that nothing was possible anymore. (And on really bad days it still does that) But, when I finally began to see and understand how these new dreams could be more powerful, more amazing and more fulfilling than anything I ever dared to dream “pre sclero,” I accepted the loss of my former dreams and began to embrace the new journey I was on. It still isn’t easy, by any means. These new dreams scare the hell out of me. But I truly understand now (after several near death experiences) that I’ve already been through “the worse that could happen,” and I’ve got nothing to lose.

On the other hand, my physical, literal, put your head on a pillow and fall asleep dreams juxtapose my current life and realities with my former self and my “what could have been self.” They haunt me and taunt me because they feel so real. 

I see a pregnant me. And then I wake up. Hollow and childless.
I see 10 pretty fingers, shaking someone’s hand, writing a new poem, baking cupcakes. And then I wake up, still partially amputated, still not whole.
I feel joy at hearing a doctor say I don’t have PAH. And then I wake up. Out of breath. Unsure of what the future holds.

It’s like the movie Vanilla Sky had a baby with Inception, implanted itself in my brain and left me feeling like Eternal Sunshine of the Spotless Mind.

Both my literal and metaphorical dreams change just as often as my reality changes, and I’m learning to accept that also. And acceptance, like gratitude and good health is a daily practice. 

Dreams are hard. Life is hard. But if and when you’re lucky enough to have them meet, count yourself lucky, hold on tight, and enjoy the bumpy, thrilling, unpredictable ride.

Friday, October 10, 2014

Little Happies: New Things

"Don't fear failure so much that you refuse to try new things. The saddest summary of a life contains three descriptions: could have, might have, and should have."- Louis E. Boone

It's been a minute since I did one of these, and I am trying to force myself to write as often as possible...and I'm getting nowhere with my memoir right now (mostly cause I'm having a flare up today)...SO instead of focusing on the negative and what I can't do...I thought I'd share all the goodness that's happened in my life GOES!

1) My finger is HEALED! Can I get an AMEN?! Scab is off. Physical and Occupational therapy is going well, and the Raynaud's attacks are becoming less and less painful and less frequent. Joy to the world!!!

2) I have decided to embark on a month long journey of trying new things. I will turn 30 in less than a month (November 6th) and decided in late September to spend 30 days trying 30 new things. I'm only on day 15 today and I think I've tried over 20 things, but I lost count. My goal is to try at least one new thing a day...and so's been a A LOT of fun...even when it doesn't go so well. 

A few things I've tried:

  • Modeling
  • New dinner and dessert recipe
  • Bought a new CD (Ed Sheeran-A-MAZE-BALLS)
  • New tapioca tea flavor (Passion fruit- tart and tangy but good)
  • New experience with the hubs (Mercer arboretum) 
  • New coffee shops 
When it's all said and done, I will dedicate a very long post to how it all went and all the new things I tried! For now, I'm just having fun experimenting with new things big and small. :) 

3. We are house hunting! After my car got broken into AGAIN last week, I took it as a sign from God that it was time to finally get the heck outta dodge. I'm actually super excited to go through the "stress" of finding and buying a house. Probably because we are not also trying to make a baby. So all my energy is on the house hunt and it's been fun so far! We also got pre-approved for more than when we were house hunting the first time, so that makes me REALLY excited! Wish us luck..will keep you posted!

4. I've started writing again- my memoir that is. I have a concrete plan of action, a good outline, chapter titles and a clearer vision of what I want and how it's going to end. This is a great leap forward for me! I want to try to write almost everyday, but it's proving to be quite the challenge. However, I have vowed to at least work on my writing career that could mean anything from updating my website and blog- which I did- notice the new colors and layout? (I'm trying to keep my "brand" consistent) Or it could mean researching writing residencies or workshops. Or, on really good days, it could mean actually writing a chapter or two. Regardless, I am committed (that's my therapist's word) to my writing career and to achieving those goals. 

5. The CellCept-despite my aversion to it- is actually working. (I knew it would- always does) I feel so much better. Stronger. Healthier. No fatigue (except on flare days). No pain. I hate that it makes me feel so good, so normal and yet can be so dangerous. But this is the "pill I must swallow" (pun intended) if I ever expect to get healthy enough..for well..anything. I'm happy I feel better overall and am looking forward to a much better decade ahead. 

Well, that's it for now folks. Just wanted to share a quick update and let you know that I am well and hoping it stays that way for awhile. I deserve a break! Be well everyone.

Hugs and Chocolate!

Friday, September 26, 2014

Let's Talk

The other day, while chatting with one of my sclero buddies, I came to a rather funny and yet stark realization:
The conversations I have with my chronically ill friends are usually quite different than those I have with my “normal” healthy friends.  I mean, I guess I’ve always known this and I’m sure it makes common sense for this to be the case. After all, one’s normal healthy friends can't fully understand what we go through. But I also found it very interesting how different the tone of these conversations can be even when you talk about the same situation.

For example, when a healthy friend asks me about my recent hospital stay or surgery the conversation might go something like this:

Heatlhy Friend: So I heard you were in the hosptial recently and had surgery?!
Me: Yeah, just trying to heal this finger already.
HF: How’d it go? How are you feeling?
Me: Oh, it was fine. As far as hospital stays and surgeries go. I’m feeling alright. No more pain, so that’s good.
HF: Yeah! That IS good. look great! (cue half smile and sad eyes)
Me: Thanks.
(Awkward silence, I change the topic) 

Now, to all my healthy friends, this is not to say that I don't appreciate your sympathetic inquiry and kind comments. But the truth is, you will never truly understand what it's like unless you have to go through it yourself. Which is why, I may never talk to you about my medical and chronic illness experiences the same way I do with my chronically ill buddies. 

See, one of the major differences I noticed in the conversations between my healthy friends vs my sclero friends is that healthy friends want to know so they can provide you some kind words of comfort. Your sick friends want to know so that they can compare war stories and help you find the silver lining. 

Sick Friend: Hey! So good to see you out of the hospital! How'd it go?
Me: Ugh, it was awful! I was there for 5 days and they had to give me 7 different IVs! I look like a freaking heroine addict. Look at these brusies!
Sick Friend: Girl I KNOW! Last time I was there for 2 weeks and by day 5 I had been poked 12 times! I finally broke down and told them to call my doctor to get a PICC line.
Me: Yeah, it's like they don't get it, our skin is tight, you can't treat us the same as everyone else.
Sick Friend: For real.
Me: The food was good though.
Sick Friend: What hospital were you at?
Me: Memorial Hermann
Sick Friend: Oh yeah, their food is awesome. 
Me: I had the turkey burger for like three days.
Sick Friend: Yeah! I always get the baked chicken.
Me: It's good, right?!
(Laughter ensues- they continue to ask REAL questions about my experience)

How were the nurses?- And we talk about how awful or how wonderful they were during that particular stay. How you know more about your disease than they do and how you can always tell who's new at their job by how badly they draw blood and how nice they still are. 
Did you get any REAL sleep?- The answer is always NO. Which leads us both into a tirade about how a hospital is no place to get better.
Do you have to go back?- The answer always an uncertain one because we all know how quickly being well can change to being ill. 
When do you see the doctor again?- It's always too soon.

You see, there is a certain level of cynicism and humor that comes from living with a chronic illness that only the chronically ill can truly appreciate and understand. We compare war wounds like soliders in battle because it helps us feel less alone. We try to "out sick" each other not because it's cool but because we have to share our stories (even if only to each other) to survive and to give others hope that "hey it could always be worse" and "if I made it through THAT, you'll make it through THIS." Our lives are a never ending dark comedy that only we are truly allowed to laugh at because after all, what else is there?

"We have to laugh to keep from crying"- Ntozange Shange

Again, this is not to say that my healthy friends' gestures and words are not truly appreciated, they are. And I am supremely grateful for anyone and everyone that cares enough to ask me about my health. But I don't feel as comfortable telling you (with sarcasm in my voice) about my bruised veins while I laugh about how my underwear got stuck on the IV pole when my husband went to go help me take a shower and we had to leave it there until the nurse came to change my painfully infiltrated IV for the 3rd time in 4 hours.

The conversations the chronically ill have amongst themselves will always be different than those they have with the healthy. Because the story about how your sister/mother/brother/uncle/past distant cousin had cancer and is now in remission so you "understand" what I'm going through- just isn't really true. Appreciated, but untrue.

I am fortunate to have an awesome support system- healthy and sick warriors. When I first got diagnosed I knew no one else with Scleroderma and it was hard- very hard. The internet is a wonderful thing for connecting people and for that I am grateful.

Truth is, no matter who the conversation is with, I feel that if at least I can find some comfort, peace, or laughter in the situation then that's all that matters.