Inspiring Me Now

  • "The Purpose of Life is to Be Happy" Dalai Lama

November 22, 2012


It’s thanksgiving today. I opted out of the family holiday tradition of going home to my mom’s. It’s the first time in my life I haven’t spent the holiday with her. It’s not that I didn’t want to spend time with my family; it was just that I needed to spend some time with myself. I’ve let my anxiety get the better of me over the last 4 weeks and my health has paid the price big time. My eczema flared to the worst it’s been in years. I had to go on steroids to get it back under control. Even when on the steroids I was not feeling 100%. So I took a week off of work. Originally, my boyfriend and I were going to take a trip somewhere. We had seriously talked about going to Colorado to visit some friends, but things never materialized. I then contemplated not taking the week off, since I didn’t really have anything to do or anywhere to be, but I realized that this was the first time in my life that I was going to be able to take time off to do whatever I wanted. I wasn’t taking time off because I was sick or because I was traveling, I was just taking time off to enjoy not working. What an idea!

It has been fabulous! I have done absolutely nothing of importance. I haven’t deep cleaned my apartment, I haven’t caught up on laundry, I haven’t cooked a week’s worth of meals. I’ve read, I’ve napped, and I’ve gone to movies and out for drinks. I’ve met up for breakfast and taken my dog to the dog park, but most importantly I’ve written a lot. It’s been liberating to have the time to get what’s in my head out onto paper. I feel like I’ve been able to lift a weight off my shoulders. Sometimes I can see things so much clearer when they are right there in front of my face. Last night I wrote for two hours straight, whatever came into my head. Five pages later, I had answered questions that I had been struggling with for the last month. Over the week my skin has cleared up and I’ve stopped itching. It’s amazing what stress and in turn relaxing can do to your body.

So, back to today being Thanksgiving. I believe in being grateful for things in my life every day, but I struggle to slow down enough to recognize them sometimes. So in the tradition, and since I didn’t have to sit around anyone’s table and do this, here is what I’m thankful for.

The classic: I’m thankful for all my family.  Special shout out to my mom, who is not only the most amazing mom I know, she’s also my best friend. She has kept me going when I didn’t know how to myself. My brother who has every year taught me a little more about myself. He reminds me not to take things so seriously and to go with the flow. He has been my rock when I’ve needed him most. I’m so grateful to have him in my life. My cousin, Nicole has been far, far away the last few months. We haven’t been able to communicate like we normally do, but the emails and letters and time we’ve spent talking together is invaluable. I talked to her tonight and it was seriously the highlight of my day. She always makes me laugh.

To my friends, especially Brooke, Jenna and Andy, your emails, phone calls and texts are sometimes what keep me going through my day. I don’t think I realized until these last few weeks how wonderful it is to know that someone is thinking of you, when you feel like you have no one around at all. All my other friends have been wonderful too. They are there when I need to talk or don’t. They have rallied around me when I’ve been sick and have supported me when I’ve been down. I’m so thankful to have people in my life like that.

Now on to the not-so-classic list. I’m thankful for my bed. We all know how much I like to nap, but napping aside; I’ve always felt like my bed is my safe place to land. I’ve mourned deaths in that bed, I’ve cried over relationships in that bed, I’ve talked about great life plans in that bed. I’ve read great novels and listened to amazing music in that bed. There are some days there is no place I’d rather be.
I’m thankful for my pets. My Luxie, though she was a terrible, terrible puppy, has turned into one of the sweetest dogs I know, and I’m not just saying that because I’m her mom. She is the perfect mix of chill and playful. She is always happy to see me when I get home, she doesn’t hold a grudge and she is the one thing in my life that I know will never let me down. I love her so much. My piggy, Bono though he is a recent addition, has been so awesome. I love his little face and how he squeaks good morning to me every day. I love that he destroys carrots like Gallagher to a watermelon. I love how he cuddles right up onto my lap when I watch tv. I love my Mr. Pig.
I’m thankful for my Kindle. I’ve had my kindle for a couple years now, and it has totally changed the way I read. I was one of the hold outs at first. I truly enjoy holding a book in my hands and smelling the pages. I love wandering through Barnes and Noble on a Sunday afternoon. The convenience of my Kindle though, is irreplaceable. I love that it has further fostered my love of reading.
I’m thankful for music. Some of my best memories involve music. Either a song was playing in the background or I was watching a live band, but somehow music always brings me back to a place in time. I love the stories people tell through their music. It’s like getting to see a little piece of their life, make an imprint on mine.
I'm thankful for my therapist. Yep, I see a therpist, I'm not ashamed in fact I truly believe everyone should see one. She helped me out of a terrible depression when I was diagnosed with MS and when my husband left, and again when my dad passed away, but most importantly, she has helped me to see the strong, confident, worthy woman I didn't know I had inside of me. This year was one of the first times I felt like I was able to apply what I've learned about myself to my real life. I have stood up for myself in situations I normally would have shied away from. I found my voice and I'm finally learning how to use it.  
Finally, though this probably sounds totally cheesy, I’m thankful for my freedom and for those that fight to keep it that way. I am fortunate to live in a nation where I can protest against things I think are wrong and I can vote to support things that I believe are right. I can say what I like to who I like whenever I’d like. I can travel safely through my city. I can sleep without fear of military arsenal exploding down my street. I can pray or not pray to whomever I’d like and I can detest whomever I’d like. We’ve got it pretty good here. Despite high gas prices and high unemployment rates, we still have our basic rights and I think we all forget too often that our rights, are not afforded to others around the world. I cannot fathom living in a country where I had to speak in whispers about the government or worry about food rations. So I am thankful for the freedom that has been provided to me and is kept sacred by countless men and women in the military. Sacrificing their lives knowing the effect it may have on their own families and friends, for our freedoms, that is something to truly be thankful for.


November 21, 2012

Broken Bones

 Heartache and emotional pain are like broken bones. It’s not something you plan on happening it just does. So you break your wrist. You can either admit that it’s broken, go to the doctor, get a cast, and let your body heal itself, or you can pretend it’s not broken, put an ace bandage around it and try to ignore the pain. The thing is, if you don’t treat the break right, it’s not going to heal right. The bone will be weaker and more prone to further injury, and if you do injure yourself again, the break is going to be a lot worse. So, most people do the advisable thing and get the cast.

I don’t understand why we treat injuries to the heart so much differently than injuries to our physical bodies. The consequences are just as bad. You can ignore your emotions and put them aside until you don’t feel the hurt anymore, but something is going to happen and that hurt will resurface twice as bad as it did before.

I can look at this and I can clearly see the correct way to handle my emotions, but for some reason, I never want to put a cast on my wrist. I’d rather just try to ignore the pain. I think a lot of people fall into the same category.  It’s easier to distract yourself with other things that occupy your mind, than face heartache and sadness. Why, when the biggest part of ourselves is hurt, do we think putting a Band-Aid on will fix it? Our heart and some would say soul, make us who we are. Our emotions shape us into individuals, but you have to go through the emotions. You have to surrender yourself to feelings, even when they are uncomfortable and painful.

As I said earlier, I’m not good at this, turns out a lot of people aren’t. A USA Today poll in 2011 showed that more than 1 in 10 Americans take antidepressants. When we don’t face our emotions and push them down, we are depressing them. We aren’t handling things the way we should. We make our brains process information in an unhealthy way. Then one day you realize you can’t find one single reason to be happy that day, or you can’t figure out why you’re still here on earth, while other people aren’t. You realize that you’re depressed.

Some people won’t ever realize this. They will self-medicate with drugs or alcohol. Not realizing that drugs and alcohol, while they make you feel awesome temporarily, are just making the issues worse. You have to take more and more to keep feeling “good” and before you know it, you have a whole new issue on your hands – addiction. I’ve watched addicts my whole life. I have alcoholics from both sides of my family, and I’ve lost people close to me to addictions. It makes me ridiculously sad to think that had these people had the support and strength to face their initial heartaches and sadness, they might still be around today.

My dad died about a year and a half ago. He had a brain aneurysm. He was 51 years old. He had high-blood pressure, he smoked like a chimney and he drank. He drank a lot. His parents both drank and smoked and also died at an early age because of it. When my dad passed away, I was so angry. I felt like I had just started to get to know and accept his role in my life. I was angry that he could be so selfish. He drank away lord knows how much money, putting his family in constant financial stress, and because he didn’t take care of himself, I no longer had a dad. I wasn’t even 30 and my dad was gone. It wasn’t long after my dad’s death that his past became present. I don’t know why people feel the need to divulge other people’s personal issues when they die, but they do. I didn’t want to hear a lot of what people told me about my dad, for several reasons. One, I could not change the man he was. I loved him flaws and all, and I was scared that what would be revealed to me would change my opinion of him.  Secondly, I thought it was disrespectful. Had my dad wanted me to know certain things about his past, he would have told me, and maybe he wanted to but didn’t have enough time, but odds are he hadn’t ever planned on it.

I found out that my father was molested as a child. When I found out, my heart broke for him. Even now, I feel like the wound is still fresh. I picture my big, strong, tall dad as a helpless little boy and I would do anything to have the chance to protect him, but of course I couldn’t and it seems no one else did either. I’m not sure if no one knew at the time, or if it was something not spoken of. Either way, the heartache or pain my dad experienced because of this, is what ultimately led to his death. He started drinking to escape the issues that he didn’t want to deal with. I’ve fortunately never been through something even close to so traumatic, but I can imagine that having to relive it as a way of healing, would be terribly hard. I forgave my dad for a lot of things the day I found out. I couldn’t blame him for the way he chose to deal with his problems. I can’t say that I wouldn’t do the same. I didn’t forgive him for everything, because I do believe life is made of choices, but in his case, I feel like he was dealt a shit hand and made the decisions that he thought would be best for him at the time.

When I found this out, it was shortly after my father had passed away. I was still fresh in my grieving process then, but I was grieving in a very unhealthy way. I would tell myself that after a certain period of time, I would not think about him if it made me sad. I put away the pictures I had up of him at work. I was going through an odd battle with trying not to remember too much but not wanting to forget anything. I was failing on both accounts. I wasn’t dating anyone at the moment, so for a majority of the time when I wasn’t at work, I was home alone. I didn’t feel like being social because people either wouldn’t talk about it and I would be resentful, or they would talk about it and look at me with pity.

I was already seeing a therapist, thank god, and it was at one of my appointments that she stopped me mid-sentence and said “Jacqueline, I’m going to need to ask you to stop.” I was talking about exactly what I’m writing about now, about how hurt I was that my dad was hurt and how angry I was about other things. She went on, “I need you to tell me what you’re feeling right now.” This seemed weird to me because I was telling her how I was feeling, or so I thought. “I need you to close your eyes and take a deep breath and tell me what you’re feeling.” I closed my eyes and took one big long, deep breath. I paid attention as I let it out. My whole body was shaking and I hadn’t even noticed. There were emotions inside of me literally fighting to get out of my body and I was talking around them as if they weren’t there. I started to cry, and I started to really heal.

The months that went on, I made a pact with myself. I would make a conscious effort to feel whatever it was that I was feeling in the moment. Unless it was during a highly inappropriate time, like in the middle of a work meeting or conference call, I would take no longer than ten minutes and let myself experience whatever it was my body was telling me to. It’s like icing a sprain throughout the day. You don’t keep the icepack on there all the time, just when it starts to throb or hurt. My ten minute emotional releases were the icepacks for my heart.

So I did it. Some days were much harder than others. I would think of something random about my dad and tears would well in my eyes. My first instinct would be to stop crying, but I didn’t. I would let myself cry while I thought of that moment. Sometimes I cried for a few seconds and sometimes I cried for my full ten minutes. Every single time I did, I felt better. I also let myself experience happiness again. I was so full of sorrow and anger and hatred that I wasn’t reveling in the good things happening in my life. I started to realize that the good things in life are the small things. I started appreciating things I took for granted all the time, things I never thought of, like being able to see an awesome sunrise. I could look at it and appreciate all the wonderful colors. How lucky am I that I can see that and find joy in that? I was slowing down my life. I was figuring out that there are meaningful things happening all around me all the time, I just needed to take the time to notice. Even if that time was only 10 minutes.

Weeks turned into months and months turned into a year. It had been 365 days since my dad passed away, but I was still moving forward. I didn’t feel like I was clinging to my sadness. I felt like I was starting to be grateful for the memories I had instead of terribly sad for what I had lost. It’s ironic that my dad’s death is what led me to a peacefulness that brought me to a very emotionally healthy place.

So time marched on and like a good little soldier, I fell back in line. Things at my job were getting busier; I was in a relationship now that was becoming difficult. I wasn’t taking time for myself anymore; I was putting that extra time into more work or more of my relationships with other people. I started slipping again, back into a depression. The relationship I was in ended up hitting an unhealthy point. At first I tried to ignore it, I told myself that I could deal with the issues that were happening, and I tried at first, until I realized that I was back in my same old pattern. I’m not sure what made me snap to, but I ended the relationship because I knew it wasn’t healthy for me. I have NEVER done that before. I never put my emotional health first in a relationship. I want so badly for the person I’m with to want to be with me, that I end up sacrificing parts of who I am to do so. I wrote a great blog about this called “Cherry”.  Leaving that relationship was powerful for me. I felt good about putting myself first. I had a new confidence that made me feel like who I was right at that moment, was good enough for me and therefore should be damn well good enough for someone else.

I met that someone else a few months later. He liked my confidence and even commented on the blog I had written about it. He got it. He didn’t want to change me and for the first time, I felt comfortable enough with someone that I didn’t feel like I had to change. He knew where I stood and what I expected and he respected that. Somewhere along the line, things got messy. Life comes full circle sometimes and he ended up experiencing the loss of his father, too only a few weeks into our dating. I’m not sure if my being with him during that time was helpful or not. I tried to put myself in his shoes; after all, I had been there just a year before. I think we both wanted things to be ok. They had started off so wonderful, that we grasped at those moments when the hard stuff came up. Ah, but grief is powerful, and though I saw glimpses more and more over time, I didn’t fully see that man I met months before. I again found myself circling back to the spot where I’d do anything to make this person love me. I was so scared to lose him. I was scared because what we started with was so fucking amazing, but I realized that that man I met was now shrouded in grief. How could I expect him to love me the way I needed to be loved, when he didn’t even love himself? Things went back and forth and then it was done. I feel like we stopped mid-sentence. There was no discussion, no specific reason. It was just over. It was the first time I didn’t have some kind of closure to a breakup. I think because of that, I’ve been holding out that maybe just hit the pause button.

I of course am heartbroken. I’m heartbroken for myself, because I feel like I’ve lost someone utterly irreplaceable in my life, someone who challenged me and called me out on my shit, someone who was genuinely proud of my accomplishments. And I’m heartbroken for him, because I know the man that he has the ability to be, when he’s not fighting his own demons. I wish I could wave my wand or hit the un-pause button and make it all better, but I’m realizing the only thing that will make it better is more time.

The past few weeks I feel like I’ve been going through boxes of ace bandages trying to fix this broken wrist. Acknowledging that it’s broken and that it’s going to take time to heal seems so daunting. I don’t want to wear a cast, I just want pain pills. I don’t want to move on without someone who has been so important to me. But bones don’t heal with medicine and neither do hearts, and healing mine will bring me back to the strong, confident woman I found in myself months ago.  So here I am, opening up, taking off my bandage, putting away my ice packs and putting on cast.

November 20, 2012

Things that make me go "hmmm"

I like the smell of scotch tape, gasoline and sharpie markers

I wiggle my feet when I sleep

I have an odd habit of looking at the clock at exactly 10:24 – which also happens to be my birthday

I am totally at the mercy of any baby animal. I want to take them all home and love them and hug then and squeeze them forever.  It’s seriously sort of like a sickness. I should be banned from all pet stores.

I have too many allergies to take home baby animals to love and hug and squeeze

I hate the Vikings but one of my favorite colors is purple

My favorite cake is Red Velvet

I have a pet guinea pig I named after one of my favorite singers, Bono.

I hardly ever call my guinea pig by his real name; I usually call him Piggy Poo, which rhymes with the nickname I call my dog – Luxie Lou.

I don’t like talking to anyone before 7:50am.

I read magazines from back to front

Sundays are my least favorite day, Thursdays are my favorite

I drink massive amounts of coffee when I’m at work, but when I’m home on the weekends, I hardly drink any.

I can nap like a champion. If napping where an Olympic Sport, I’d win, hands down.

I have a strange fear of water. I don’t know how to swim and I’m always scared something is going to eat my toes when I’m in a lake/river/pond/puddle…

I can’t whistle

I was the president of Random Acts of Kindness in high school

If it were socially acceptable to wear sweatpants everywhere all the time, I would wear a pair I stole from my dad. They are so big they make me look like MC Hammer, but they are so comfy!

I’m glad it’s not socially acceptable to wear sweatpants everywhere

My favorite song is “Baby Got Back”. I can’t be in a bad mood when I hear it.

I prefer to shower in the evenings

My favorite food is mashed potatoes and gravy

I have a crush on Jessica Simpson

If I could be a character in a novel, I’d be Hermione Granger from the Harry Potter series.

I will require the man I end up with to have read the entire Harry Potter series

I don’t believe at love at first sight

I think Happily Ever After takes a lot of work, but is obtainable

Fall is my favorite season

I have an unhealthy obsession with the “Jeep” brand. I’ve owned 3, have a Jeep backpack and gym bag. It’s a Jeep thing.

Halloween is my favorite holiday. I love the decorations

I believe in ghosts/spirits

I don’t believe in a “god”

I don’t like cats and I think “cat people” are sort of strange

I’m an introvert that runs a book club that now has over 300 members

I started reading Anna Karenina 6 years ago, and I still haven’t finished it

I will still buy almost anything that has the word “Hurley” on it. I’m a California girl at heart

I have a thing for guys with scruffy facial hair. Thank you Hollywood for making it a trend right now.

I can’t go into Target and not spend at least $30. I’ve tried, seriously.

My mom is my best friend and I talk to her on average twice a day

My brother is a ginger and proud of it

I’ve always wanted to run a 5K, but I hate running

I’m left handed but I can bat/play hockey/shoot right handed

If there ever were a real zombie apocalypse, I’d be one of the first dead. I’m pretty sure I’d have an asthma attack running away from zombies – maybe I should train for that 5K after all

When I made a list of things that made me happy, writing lists was on my list







November 19, 2012

Pirate's Booty

I’m sitting on my kitchen floor, literally surrounded by snacks. I’ve got all my favorites here, Pirate’s Booty, Haribo Gummy Bears, Stacy’s Simply Cinnamon and Sugar pita chips…and a root beer. I’m watching my guinea pig, Bono, eat a carrot. I should be eating a carrot **stuffs handful of Pirate’s Booty into mouth**, but to be fair, carrots to Bono are like candy bars to me. So I guess I’ll call it even for now.

I wouldn’t say that I “normally” spend my Sunday nights sitting on my kitchen floor eating bad food and watching my guinea pig, but I’m on day 17 of a sad breakup. Wow, 17 days already. Seventeen days and it feels like two. This isn’t my first breakup, and lord knows it probably won’t be my last, but man does this one suck. In terms of dating, we hadn’t been together for too long, 6 months. But when you see a person and talk to them almost every day for 6 months, there is a significant loss when it ends. And I’m not going to lie, I’m normally the girl that will text message or call or email something a few days after the break up and then some weird post-breakup ritual starts until I feel like the ex has bruised my heart just enough or he starts fucking another girl, then I can usually move on. But this time, I decided to try to be an adult. I did just turn 30 after all, so I decided no angsty texts or emails. No super sappy facebook posts. I almost adhered to my rule. I didn’t call or email, I did send one text. It was an “I miss you” text midday about 5 days in. I didn’t hear back. You’d think that would have been a clear enough sign to chill out, but my heart still wishes he’d respond.

I often wonder if our society sets us up to fail in relationships. No one ever writes stories about how “they” lived happily ever after. Because that’s not dramatic, people want drama, they want fights. They don’t want to see a couple sitting on the couch watching Dexter on Sunday nights. People also do not want to see someone sitting on the kitchen floor eating popcorn and looking at happy-together picture of their ex, unless this is just part of the “grand scheme” . Perhaps it will don on me that sitting on the floor eating popcorn is not doing me any good. In the movie version of this, some sort of dramatic/inspiring music will start and I will close my bag of popcorn, take a shower, put on some jeans and start making things happen (cut to montage of me doing yoga/running with my dog/laughing while talking on the phone to an unknown caller) Too bad that’s not my real life. In reality, I’m going to finish this  paragraph, put my fat guinea pig back in his cage, take my popcorn to the couch and turn on something that will let me temporarily forget how much my heart hurts right now.

When I’m done with that, I’ll take a higher than recommended dose of melatonin and try to sleep. Sleep is the worst. You can’t control what you dream of, and so it’s then that I unwillingly let myself imagine that he’s sleeping right next to me. I’ll eventually wake up in the middle of the night, and all too quickly realize it was just a dream. I’ll look at his side, wish that I hadn’t given him all his stuff back. A tee shirt of his would be nice to smell right now. I’ll lay awake for a long time, wondering if he’s lying awake thinking of me.  I’ll check my phone for the millionth time, just in case I missed the text message response I’ve been holding my breath for. It of course won’t be there. I’ll turn back over and close my eyes. Tomorrow – day 18.

November 1, 2012

...Happily Ever After

My most recent Prince Charming, has been just that, charming. We started out like most Prince and Princesses do, with correspondence. There were no wax sealed love letters, but there were several highly anticipated emails. Our first date was amazing. It was fun and relaxing and silly. I laughed more than I had with any other prince in a long time.  I still smile when I think of it. Our second date was even better. I think the thing I fell in love with about Prince Charming, was how flawed he was. Just like me. My Princess gown has been mended more than once and my tiara is a little dusty. Prince Charming’s armor was a little scuffed but I saw what he had been through to get here, not how much he needed to clean up. Neither of us came from great royal backgrounds. We had worked hard to achieve this level of imperialism. I felt like we were both able to honestly say “this is what I have to offer, tattered clothes, rusty armor and all.” I’ve been courted by my fair share of princes, most of whom came baring their shiniest chainmail and sharpened swords. This Prince was so much more handsome to me. 

And so we started down our road to Happily Ever After. It’s been a long road to travel in a short period of time. It has had wonderful but short miles paved in gold, but a majority of our walk has been spent tripping over weeds while making our own path. It’s been hard and I’m a very stubborn Princess; I’d like to think it’s because I’ve kissed so many frogs. I’m certain that the more amphibians I’ve put my lips on, the easier it has been to see the keepers. That doesn’t mean I’m always a joy to travel with. I wouldn’t call me Princess and the Pea picky, but I have my moments. 

So because our road has been fraught with ghosts of Princesses past, and dragons of a scary future, my Prince and I are at a crossroads. To the left, visible on the distant horizon is a castle. From what I can tell, it’s a fixer-upper. It looks like it needs new windows and the moat is a little swampy. But it beckons me with the feeling of comfort, the feeling that with a little extra love, it would be the castle of my dreams, a castle where my little princes and princesses could run outside and play in the sun, a home where I could hang up my dusty tiara alongside my Prince’s worn shield. I can tell the journey to get there will be long and I certainly cannot see all the potholes, but that horizon… that horizon looks so glorious.  

If I look to the right of our crossroad, I see an open field of possibility skirting the edge of a darkened forest. Daisies of new beginnings and tulips of sound decisions blanket the open meadow. There are no risks in sight, and while it has an air of peacefulness about it, it also breathes of loneliness. Just beyond lays the forest. It is foreboding and smells of uncertainty. It’s definitely not a place where you can travel in pairs. I can’t see through the thick branches to make out what could be at the other end. Perhaps it’s a nicer castle? Perhaps it’s a mountain of gold and silver? Maybe it’s the other side of Happily Ever After, or perhaps it’s just more forest. 

The caveat of choosing left or right is a cruel riddle. If the decision is made to go left, it is made by both. The trail, be it rocky or smooth, must be traveled with someone. I would mean comprise and it would mean planning. To go right, would mean choosing to go alone. It would mean more tatters to my gown and more mud on my slippers. It would mean more frogs. It would mean no more Prince to slay my dragons or catch me when I fall. Though I’ve never been a Princess who yearns to be rescued, the imagery has always been alluring. 

I’m here, now. I’ve argued the pros and cons of each to my Prince. His hand lies ready on his sword, but I cannot tell if he means to unsheathe it to continue on to the left, where he’ll use it to thwack through the weeds and trim down the vines towards our castle, or if he means to draw it when he turns right, to prepare himself for the uncertainty that his forest brings. 

September 25, 2012

Dad Hands

It’s been 1 year, 5 months and 21 days since my dad passed away, and my heart still aches for him. Tomorrow would be my dad’s 53rd birthday. The day also marks the last time I saw him, 3 years ago. The last time we hugged, the last time we laughed together, the last time he got to kiss me goodnight. I often thought getting through the first year after his death would be the toughest. You have those big “landmarks”, first Christmas without him, first Thanksgiving; first Father’s day… the list goes on but so does time. I’m not even sure why I’m writing this blog post. I suppose because I’ve been noticing that this year, this second year, has been harder than the first. It’s like my anesthetic wore off and now I’m really feeling things but having trouble remembering them. I feel like the time I spent with dad was almost an illusion. So I’m trying to write the memories in a way of solidifying the times we spent together.

I’ve always had an odd fascination with hands. They are beautiful to me. They do so much unnoticed. They work in fields, they make music, they greet people, they comfort babies. Hands hold such an awesome duality of toughness and tenderness. They have always been one of the first things I notice on a person. I was recently blessed to be able to visit with a dear Aunt of mine before she passed on. While I sat stroking her hand, I couldn’t believe the resemblance it bore to my grandfather – her brother’s hand. My grandpa also passed away about 4 years ago, but touching my Aunt’s hand and seeing her soft freckled skin and chubby fingers made me smile remembering my grandpa. It was like getting to touch a little part of him just one more time. It was a highlight of happiness in a day full of sadness. I started thinking about my dad’s hands. At first I panicked. I couldn’t remember them. I felt like I never had enough time with him to memorize things like that. I cried that night thinking about all the things I probably never noticed about him, that I would never get to know. But then my memories crept back in as if my brain were saying “I won’t let you forget Jacqueline, remember this:”

 My dad’s hands were rough. He worked with them every day and they were calloused and cracked and dry. I remember my stepmom commenting that they were so rough they would sometimes snag on her clothes.  They had a distinct feel when he laced his fingers through mine. The first memory that came to me was one of us walking through the mall; I couldn’t have been more than 5. I can’t remember why it was just the two of us, but I remember holding on to just dad’s pointer finger because my hand was too tiny to fit in his. I remember thinking how big it felt. Like holding onto a carrot! I remember thinking how funny it would be if people had carrot fingers, like dad’s.

When I was older maybe 16 or so, after my parents had been divorced for quite some time, Dad took us to Disneyland. It was the first time my brother and I had visited him in ages. I was walking around the park holding my dad’s hand which I hadn’t done in years and which now fit inside his, though mine was still much smaller. I subconsciously squeezed it three times – something my boyfriend and I would do to say “I love you” when we didn’t want to gross people out with our angsty teenage puppy love. My dad looked down and smiled at me and squeezed back four times – “I love you too”.  I remember feeling giggly when I asked him if he knew what it meant. “I love you too, right?” like maybe he guessed wrong. I smiled, he knew the code too!

Fast forward years later, at my wedding, before my dad walked me down the aisle we had a brief moment of time alone. I was so nervous, thinking all the girly things you think before a wedding, “I hope I don’t trip, I hope my makeup looks good, I hope I remember what to say… I was holding onto my dad’s arm just about to walk when he paused. He looked down at me with tears in his eyes – the one and only time in my life I saw him cry and he said “it feels like just yesterday you were a little baby we could wash in the sink and now you’re my beautiful girl getting married. I love you, Goose” and he put his hand on one cheek and kissed my other. Tears spilled down my face and on to his hand. “Dad!”, I said through smiling/sappy tears “you’re not supposed to be the one crying!” He laughed his big Texas laugh, wiped my tear with his thumb, smiled at me and said “ready”? 

His hands: because we lived so far away from each other most my life I didn’t get to hold them much or feel them comfort me when I was ill, but his hands still left indelible prints on my life and in my heart and sometimes I think I can actually feel them in mine squeezing “one-two-three”.

September 7, 2012

Multiple Sclerosis - My Diagnosis

I him and haw over what to blog about all the time. There are always thoughts running through my head. I usually try to write about something that has happened to me to make me a better person, or make me realize my mistakes, etc. Then I listened to an episode of This American Life entitled “Our Friend David”. It was in memoriam of David Rakof, a brilliant writer who recently passed away from cancer. One of the most poignant stories in the series was the one highlighting his cancer diagnosis and then his inevitable death. He spoke about it with such grace that I didn’t feel like I was hearing of a stranger’s story, but a story of someone I loved. I reflected on how difficult it must be to write about something so tragic, to write about something that will change your life forever, to write about death, it’s intimate. 

I have a problem being vulnerable. I don’t believe in actuality that anyone really likes to be vulnerable, but in my case I tend to cover up so much of what I actually go through, simply because the thought of people feeling sorry for me makes me sick. I don’t want people to look at me with pity. I would rather be looked at with awe. And so I decided to let me guard down (probably temporarily) and write about the day(s) that changed my life. Grab a beverage; this might be a long one…

I have this weird habit of rubbing my eyes super hard after I wash my face. You know when you rub your eyes so hard that when you open them, it’s a bit blurry? That’s what I did. When I opened them, they were a bit blurry, but I paid no mind. I went about my normal day, but soon started to realize that the blurriness was not leaving my left eye. It wasn’t disturbing at first, just a little annoying, but one night as I sat down at my computer to write, I noticed that I couldn’t see the bottom half of the page I was looking at. It was as if someone had drawn a line with sharpie marker horizontally across my eyeball, then blackened in the bottom part. It was time to go to the doctor. 

Local urgent care told me they thought there was a piece of something behind my eye. I figured with all the rubbing I had done from the towel, I probably scratched something or rubbed something right in. I was referred to an optometrist. I was waiting for results after several crazy tests. I sat in the lobby, I remember this sweet old woman who was sitting next to me asked, “are you ok, dear?” I replied “oh yeah, I’m just waiting for results, the doctors think I have something in my eye.” She smiled at me, seriously one of the warmest smiles I’ve ever seen and said “I’m sure things will be just fine dear.” I thought it was an odd response to something that I was feeling was no big deal. The doc returned and told me that I was definitely experiencing vision loss in that eye from what they believed was something called Optic Neuritis. It was briefly explained that this was an inflammation of the nerve behind my eye and I would be referred to a neuro-opthamologistat. “Well that makes sense.” I thought. I probably rubbed my eye so hard that I caused my nerves to become really irritated. I called my mom, I have been to a million doctor appointments in my life (that’s not an exaggeration) and I know when I want my mom there and I know when I don’t. I didn’t feel like this was a big deal, but she insisted saying “I know, but I just think I should come.”

An example of what some patients with Optic Neuritis see.

The next morning I waited in a cold gray room for my neuro-opthamologist. I remember now thinking how dank that room seemed, like nothing good ever happened there. The lights were too low and there were too many unfamiliar objects around. My mom and I joked as we always do when waiting for a doctor. We caught up on family news and then my mom mentioned a friend of hers, Tom*. Tom had been suffering from Multiple Sclerosis for quite some time, and my mom would always ask about his progress when she saw him. She told me how she had recently ran into him and how well he was doing and commented on some new meds he was taking. We both talked about how nice he was and how upbeat he was even with a debilitating disease. 

Neuro-opthamologist walked in. He sat down on his cold metal stool and looked at me. “Well, you do have optic neuritis.” He continued, “And I’m sure you know from googling it that it is the first sign of Multiple Sclerosis.” I’m not going to lie; I cannot remember one single word he said after that. I became cold instantly. I looked at my mom and I could feel the tears coming into my eyes. I started to cry. My mom took my hand it was cool to the touch and made me feel like a little girl. She spoke to the doctor; again I had no idea what they exchanged. I knew nothing about Multiple Sclerosis, besides what I had been told about Tom. I knew it caused people to use wheelchairs and expensive drugs, but aside from that, I knew nothing. I felt like I had been slapped in the face. I couldn’t stop my tears. The doctor left us with a referral to a neurologist and steroid treatments. 

I remember getting in my mom’s car. I remember her calling my stepdad and crying. I remember calling my then-husband and telling him. I don’t remember the ride home. Looking back now, it seems like I cried for days. I remember at one point putting my head in my mom’s lap, still not knowing anything about this disease and saying “I don’t want to die.” She hugged me close and through her own tears said “oh honey, you are not going to die.” 

The days after that ran together. I went in for the steroid treatments. Steroids are not new to me. I have taken them since I was a kid for my asthma. They are both a nightmare and a wonder drug. A “normal” dose when treating an asthma attack is somewhere between 100 – 150mg tapered off over time. Unfortunately for me, I’ve been on steroids so much, that I experience horrible side effects including disabling joint pain, terrible mood swings, extreme hunger and weight gain as well as hair loss.  I’m usually able to convince my doctors to give me a 50mg dose and taper from there. However, the recommended dose of steroids for someone having a multiple sclerosis “attack” or “relapse” as they are sometimes called, is 1000mg via IV for 3 days. I cried again. 

Now I sat in an old patient hospital room. The beds had been moved and replaced with fake leather type arm chairs. Sort of like the chair you sit in at the dentist. It was explained that a nurse would insert an IV and they would administer the steroids over the course of an hour. The first thing I freaked out about was the IV. I have had terrible experiences with IVs in my life. Because of my asthma and I suppose some genetics, I have small, flat veins. I’m terribly hard to start an IV on and it usually takes more than once to get a good stick. The second part of this ordeal that terrified me was the thought of having an IV port in my arm for 3 days. Since I would be having this treatment 3 days in succession, the nurse thought it best to leave my IV in so they didn’t have to restart one each day. I felt lower than low. Might as well wear a sign that says “I HAVE A DIESEASE”. 

 At this point my mom had gone home. I cannot remember how many days exactly were between the days I was diagnosed with optic neuritis to the day I started treatment, but I know it was quick. I was scared and alone. My then husband was at work and wouldn’t/couldn’t take the time off to go with me to my treatment. I remember sitting in that off white dentist type chair sucking on a piece of candy. Because of the rapidity at which they were administering the drug, I would acquire an awful taste in my mouth. I started up at the tv that was turned on for me and for the first time since this happened thought “why me”?

I’ve had my fair share of medical issues in my life. I spent a great deal of my childhood in the hospital or at home sick. I was even homeschooled for a brief period of time when I was too ill to go to school. I had terrible asthma, disgusting eczema and a plethora of allergies and now I was looking at the possibility of Multiple Sclerosis. I still kept a faint light of hope in the back of my mind, that maybe…just maybe, I would see the neurologist and he would tell me this was just a fluke incident. I held on to my eye rubbing theory, even though in my heart I knew it wasn’t true. 

For anyone who hasn’t had an MRI let me tell you, it’s an experience in itself. I lay on table maybe three feet wide. My hands are placed on my stomach. I had a brain/spine MRI, so I had my head locked in place by something I can only compare to a vice grip. It’s tightened around both sides of my head. Not to the point of pain, but it’s definitely uncomfortable. Then they placed a sort of mask over my face. It reminded me of a hockey goalie’s mask. You could see out of it, but it was close to my skin. Then I was rolled backwards into a metal tube. I got to wear headphones and listen to “music of my choice”. Really? You’re sticking me in an open ended coffin and you want to know if I want to listen to Lite Rock or Bach? I was in for an hour. I was rolled out briefly so a tech could administer a dye into my body. The dye would highlight any lesions on my brain that were “active”.  That hour may have been the longest of my life. There isn’t much to do when you’re stuck in a tube, but think and think and think. 
The green highlighted areas show "active" lesions in an MS patient.

I met Dr. Garreth Parry the second week in December 2006. To this day I think of him as one of the kindest persons I have ever met. He saw me right after my MRI. I remember how kind his eyes were. When he spoke to me I felt a sense of calm. He sat down and explained to my mom and me what he had seen on my MRI. I had an “active” lesion which was what was causing my optic problem. There were also several other inactive lesions. They are sort of like little scars left on your brain after an MS relapse. Because of the number of lesions, active and inactive, that were spotted I was diagnosed with Relapsing Remitting Multiple Sclerosis. Dr. Parry explained that this was not a death sentence and that many people with MS lead very active normal lives. He explained that I didn’t have to start any medication right away but the option was there if something happened again. 

I left his office feeling both anxious and relieved. I was relieved that I would regain my sight, I was relieved that I was not going to die, I was relieved that my MRI wasn’t worse than it was, but I was anxious, now I entered into a waiting game. 

The ironic part of this story and my diagnosis (and why I often believe this was bestowed upon me) is the fact that Multiple Sclerosis is unpredictable. I could at any time, even as I sit here typing this, lose feeling in my feet, feel tingling in my hands, experience painful muscle spasms. There are no warning signs; there is nothing to prevent another attack. It’s a waiting game. Anyone who knows me well enough knows I am a self-proclaimed and medically diagnosed control freak. I like things done my way, in my time, under my circumstances. With this disease, I can’t do that and it was initially driving me crazy! I had more anxiety about what could happen than I did about what actually happened. It took a very long time to come to terms with the fact that just because this is my body and just because I am bossy, does not mean I have any control as to what goes on inside. Sure, I can do some preventative measures. I can keep out of the heat and eat healthy. I can exercise to keep my muscles in shape, but I can’t stop another attack from happening. 

It is five years later now, almost 6 actually, and aside from a few strange feelings I’ve had in my limbs, I have not had another diagnosed relapse. My MRIs continue to go unchanged and there are some days when I don’t even think about having MS. Most days I do think though. Sometimes I have pity parties. I am terrified to imagine what my life might be when I get older. Will I be able to handle having children? Will I ever be in a wheelchair? But more frequently I think of how lucky I am. I have been dealt a shit hand but I feel like I’ve managed to play my cards right. My mom constantly reminds me of the good things in life. My friends and family have been 110% supportive, offering up any and everything I could possibly need, and my sweet boyfriend looks at me with eyes that hint that he doesn’t see a single thing wrong with me. And last but not least I have Luxie Lou. My lou dog. I can’t help but smile while I type this. She has been with me every single day since this happened. No matter how sad or pissed off I’ve been because of this, she always greets me with her wiggly butt and happy tail. I’ve found it’s those simple things like that, that keep me going every day. 

How can you not love that smile!
I didn’t write this so people would pity me, I wrote it to prove to myself that I shouldn’t be ashamed of the person I am and have become. I wrote it so other could understand why I’m sometimes a crank. I wrote it because I’ve never told some of those details to anyone. I don’t have a cute quippy ending for this post, quite simply because this disease changes me every day. It changes the way I look at my life and the lives of others and because of that, I don’t think I can end this with a ‘lesson learned’ sort of paragraph. So I shall end with this: “The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud --- the obstacles of life and its suffering. ... The mud speaks of the common ground that humans share, no matter what our stations in life. ... Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ” – Goldie Hawn