Tuesday, May 6, 2014

It's (Still) a Wonderful Life

Being given a terminal diagnosis was absolutely the best thing that has ever happened to me. It was better than graduating from college. It was better than honeymooning in Hawaii. It was, and still is, better than chocolate. And that's a big deal coming from a former chocoholic. Unless you, too, have a killer dwelling inside your body, you probably have not had a reason to be thrilled about a fatal illness, but hopefully, today, you're going to see the awesomeness in it.

According to my doctors, there is no turning back from this disease, amyotrophic lateral sclerosis (ALS), and it will slowly kill me by making my body kill itself. ALS causes motor neurons (nerve cells) to degenerate and eventually die. As they are dying, they have more and more difficulty sending impulses to the muscles we all use for voluntary movements, from walking to writing to belly laughing to breathing. For me, breathing is the key word here. One of my first thoughts after diagnosis was that, one day, I would suffocate to death because I would no longer be able to move my chest muscles to breathe. Those muscles, which once allowed me to catch my breath while playing sports and that still allow my loud mouth to (unintentionally) disrupt quiet places, will eventually betray me and cause my death. Not better than Hawaii yet, huh?

Before that happens, other muscles join in on the fun. Currently, my legs and feet refuse to work, my arms tire with putting a shirt on, and my torso cannot bear to sit in an upright position for more than a few minutes. Although I have 20/15 vision in both eyes, ALS has weakened the muscles and my eyes tire quickly; in order to spend time on a computer or to read a book for any length of time, I have to wear reading glasses so that I have less eye strain and pain. I am no longer able to use a normal bathroom, get in and out of a car, or cook an entire meal. Yep, my muscles are havin' a good ole time being lazy.

In spite of all of this, I'm still happy to have experienced this diagnosis. It's dismal, it's scary, and it's the last thing I ever wanted in my life. But it has shown me a beauty and a grace I never expected.

So, how can this be better than chocolate? Very simply. Like most enjoyable things in life, chocolate is a quickly passing delight. Even if we use all of our senses to take in the chocolate before we consume it, it is going to be gone. Sure, we can buy more, but how many times have you eaten a bit too much of a good thing, and you found that the more you ate, the less delightful it was? That is because it is no longer a special treat. It is taken for granted. 

Just like life is.

I can count on one hand the number of people I know who do not take life for granted. It's a sad side effect of living in a country where most of us can have whatever we want when we want it. Almost nothing is special because it's too easy, too accessible, or there's too much of it. We get bored of these things and want more things that we become bored of. We spend so much time acquiring these things that we are missing our lives that are hidden beneath all of this junk and all of this busyness. 

That's where my terminal diagnosis comes in. On the day that it was confirmed by a third neurologist, I found myself out in the rain after my appointment. The raindrops fell on my uplifted face, just as it fell on the woman who rushed past me to get to her destination. The difference was that she was trying to escape the rain, while I was allowing it to wash over me. This is a big deal! That's exactly what I want you to know: you are missing the precious moments of your own life. You may not revel in the idea of standing in the rain and getting wet, but how many times have you been the lady rushing by as life happened around you? Do you escape the wind to save your hair, and miss out on the kiss of fragrant, fresh air? Do you feel annoyed by your kids who want to excitedly share an idea with you, because you need to cook yet another dinner? When was the last time you listened to silence, and realized that even silence is filled with sound?

That's why I love that I experienced this life-altering, perception-changing diagnosis. I notice ants carrying things across concrete, and the caress of the wind is only bettered by the hugs of my children and husband. It makes me sad to think of all the things I missed before my diagnosis, because I was so busy with nothing. Because that's what all of that junk and busyness is. Nothing. 

Although I still have responsibilities, I now fill my life with family, friends, love, happiness, fun, and joy every moment that I can. The things that matter. What a wonderful life I now have. Thank you, ALS.

Sunday, August 25, 2013

Fabulous Books You Must Read

It's been quite a while since I last posted. If you read my previous post, you know why. Since my diagnosis, I've had a difficult time getting back into the swing of things, including my favorite hobbies of reading and writing. The doctor said that's a normal reaction, and I'm slowly getting back into the groove.
I really want to share with you two books that I've read recently. I love them. They are not just fabulous - they are so important. If you read my reviews posted below, you'll see why. This is about as long a post as I feel up to punching out for now. I hope everyone reading this has a super, amazing, happy day!
This book is a powerhouse of emotion. I have read many, many books in my life, but there have been just a small number that I was so drawn to that I had to keep reading without putting them down even once; this is one of those jewels. I was drawn to Viga's story not only by the complete honesty in the sharing of this deep and painful part of her life, but also by her ability to draw me into her story as if I was living her life right along with her. As I read along, I was her. I felt her fear, her loneliness, her powerlessness, and her enslavement to a life she did not want or ask for. The end of the story was so well done, so beautifully complete, I felt honored to have followed in Viga's footsteps for those 291 pages.

Everyone should read this book. And, I mean everyone. Why? You don't have to be a current victim or a survivor of abuse (although I think everyone who falls into those categories would find it very, very helpful). People who have loved ones who are victims and survivors will better understand how to care for them and just plain talk with them after reading this book. And for anyone else, well, you all live in a society where abuse is happening all around you. You don't know it, but it is. You do know someone who is being sexually abused, but you just haven't heard about it. Everyone needs to learn more about child abuse. This book can certainly help with that. What happened to Viga can be happening right now to a child living next door to you. It could be happening in your own family. It could be happening under your own roof. Terrifying, but true. Viga's book does more than tell her own story. It blows the roof wide open on child abuse and why people hide from the shame of it. With beautifully honest books like hers, many broken lives can be healed, rebuilt, and possibly even saved from the horrors of sexual abuse.

I am overwhelmed by Ripple. This story took me on a roller-coaster ride of alternating emotions of fear, anger, forgiveness, and hope intertwined with a throat-gripping mystery that left me breathless until the final pages. E.L. Farris does a fascinating job at bringing together the lives and vexations of her characters, and forming their stories into one complete and unforgettable novel. If that weren't enough, this book is a testament to what all victims of sexual abuse need to know: You are not at fault, and you are stronger than you realize.
Throughout my reading of the entire book, I found that I held my emotions in check, the same way that Helen tried to do throughout the novel. It wasn't until the very end when Anne said, "no matter how many times the phoenix falls, she always rises" that my tears finally fell and I could not hold them back. This book is powerful. There is no denying the depth that it takes you to and then brings you back out of. During that journey, you face a lot of what you never wanted to face, and come out flying, much like the phoenix. It was quite an experience for me...one I would not have had without this book.
El's book can be purchased at: http://runningfromhellwithel.com/

Sunday, May 12, 2013


I am 39 years old. I just graduated from college last year and got remarried to a wonderful man. I have three sweet children who are still somewhat on the young side. And I am dying. I still can't believe it as I type those words. I am dying.

I am dying.

Maybe if I keep typing it, it will sink in. Even though I can no longer walk on my own, I can't believe it. Even though my left arm is getting weaker, and I only have one truly good limb left (for now), I can't believe it. Even though I have to be very cautious when I eat or drink so that I don't choke, I can't believe it.

I am dying.

With my version of ALS, it's going to be a slow death. A slow death that will take away my ability to move all of my voluntary muscles over time. It's both a blessing and a curse: I will get to live longer and be here for my family, but I'll also suffer longer. I'll be a burden to them longer. I'll grieve them longer. The very worst part? I will retain all of my senses and I will know everything that is happening to me, but I will eventually be completely unable to interact with anyone. Most likely, my death will come when I can no longer move my chest muscles to breathe. In addition to being 100% fatal, this disease is very cruel.

I am dying.

I don't think as clearly as I used to. Even writing a blog post takes time and I have to keep going back to make corrections. I often struggle to complete my thoughts and sentences. I am forgetful, and I used to remember everything. I lose things, and I used to be the most organized person around. Used to be. That's me. I used to be a lot of things. Now, I'm dying.

I am dying.

I'm also exhausted. It has reached a point where a walker almost isn't enough anymore. I get exhausted going 10 feet. The ALS Association of Greater Philadelphia is sending me a wheelchair to use for now, and I'm so thankful. Showering is exhausting. Sitting up is exhausting. Standing is exhausting. And, I gotta tell you, complaining is exhausting. People ask me all the time how I'm doing. What should I say? Should I tell them that I'm doing ok today because I don't want to complain? Should I say, "Well, I'm downright exhausted right now and terrified of dying while my kids are young. How are you today?" I'm grateful when people ask how I am, but I truly don't know how to answer that question. That's exhausting, too...emotionally. I wish the ALS Association had something for that.

It's not all bad, though. I'm seeing things differently now. Much differently. Last week, I saw a top neurologist in our area who confirmed my diagnosis (he is the third neurologist to confirm it), and when I left his office it began to rain. While Awesome Mike went to get the car, I was supposed to wait in the lobby, but it was stifling inside because it was muggy out and the office hadn't turned on their air conditioning yet. I felt like I needed more air, so I went outside. It began to rain harder. I stood there and let the rain beat down on me. I watched people walk by with their umbrellas. I saw cars pass by with their windshield wipers waving wildly. I put my hand out to catch the rain. I closed my eyes and breathed in the scent of the rainfall. I realized at that moment that I was the only one there who cared about the rain, who was enjoying it, who was thankful for one more day of how it affected my senses and made me feel alive. So, it makes me wonder: Who is more alive? Me or you?

I have moments like this all of the time now. I notice things everywhere I go. I linger longer with people I love. I don't let as many things bother me as I used to. I think more before I speak. I pray more. I'm sure I love more.

I am dying. But I am living more.

Everyone has heard a song or a phrase about living life to its fullest or living like you're dying, but until you're really dying, I don't think it's possible to fully grasp what it means. I hope I'm wrong, though. I hope you can take a good look at your life right now and realize how much time you're wasting, how much hate you're spreading, how much love you're withholding. Think about it...and make better use of the time you have left.

I am dying, but I'm full of life now. More life than I had before I was dying. I'm filling many of my moments creating happy memories with people I love. What about you? Are you living like you're dying, or are you just wasting your own precious moments? If you are being wasteful, please don't do that any longer.

Live. I mean, really live.

Wednesday, April 24, 2013

Life is Good. Even When It's Not So Good.

The picture I posted here is a gorgeous picture. Not just because it's a shot of my niece and my daughter, two beautiful young ladies (and I'm very partial, obviously), but...because of something very important that we often take for granted.


This picture was taken on a normal Saturday afternoon. The girls with their male cousins and brothers decided to take random shots near the water. The girls, who are silly-hearted every day (which I love) decided to use up some of their excess energy and happiness...and they jumped. I'm so glad they did.

What the girls don't realize is they did much more than hold hands and jump. They did much more than act on a silly impulse. They showed the rest of us - the adults - how silly and ridiculous we are.

Why don't we all go to the beach, run around, giggle and laugh, and jump into the air with the exuberance of childhood? Because we're too busy being adults. Boring, time-wasting adults who have forgotten what life is about. In the piles of paperwork, in the mounds of laundry, in the commute to work, we have forgotten.

Today, however, I remembered. I remembered that I forgot about life and it's silliness and it's exuberant jumping. I found out today because my doctor informed me that I have a fatal disease - ALS. The doctors had thought it was multiple sclerosis, but test after test began leaning away from MS and towards ALS, and ALS was finally confirmed today. Although it's a deadly disease, I'm happy to say that my disease is slower moving than the typical ALS. So, I have more time than other people have. I have more time to stop worrying like a boring adult and more time to spend with my amazing family and friends. And, while I can't jump any longer, I have more time to smile like a child, think like a child, be happy like a child. Fatal disease or not, I can be happy.

Wherever you are in your life, you can be happy, too. Forget about your laundry today and hug someone. Plan a trip. Read a book. Sing a song. Call your grandmother. Do something that means something to you.

When you're done that - smile. And jump. With all the exuberance you forgot you had.

Friday, April 19, 2013

Aloha and Aloha

Aloha! I so wish I was greeting you from Hawaii, but, alas, I'm not. You may have noticed that it's been a while since I've posted here. There is a reason for that. Several, actually. Mostly, however, I have been torn as to what I should do...continue writing frequent posts or take a hiatus while I handle some things that have been thrown onto my path.

Many of you know I have been struggling to learn how to live with a neurological disease that is ripping my life out from under me. Literally. I often find myself falling to the ground head first and feeling that life itself is no longer part of me. I am a bystander as life moves on for everyone else, and I am powerless to catch up with it as it quickly recedes from me. Or so I thought. I have recently been able to accept the fact that life is forever altered for me and I'm (mostly) okay with that.

One thing that boosted me in that positive direction was discovering that I did, indeed, have a purpose in life that was not only meaningful, but very important. I had somehow gotten the feeling that as my children have gotten older, they almost never needed me anymore. Just as life has been rapidly moving away from me, I thought the kids, too, were gliding in a direction where I was no longer needed or useful. They are beginning to grow into the adults they will become and I wasn't someone they needed that often anymore. Or so I thought.

One of my children recently hit a point of crisis and has needed serious medical attention. Additionally, I've had to withdraw this child from public school and begin homeschooling. This is where my disability has shown to be a good thing: if I wasn't disabled, I would be working full time and I'd be unable to homeschool. The most important people in my child's life all believe this is the correct step. After dealing with this crisis and beginning the process of homeschooling, I am greatly thankful to be disabled...in the sense that I'm so very grateful that I can give my child the very much needed extra love and attention.

Needless to say (but, I'm going to say it anyway) my time now is severely limited. I've not only much less time to post here at Reflective Gypsy, but I've also postponed the majority of my other writing projects. I plan to throw a post up here from time to time when life permits, but it can't be a priority.

You never know what's going to come your way. As my own situation proves, you can't even assume that something "bad" is necessarily bad. My disability is distressing sometimes and annoying all of the time, but it has given me the opportunity to help one of the most important people in my life. I had thought my life was quickly sliding away from me, but it suddenly came sailing back towards me with the winds of change. I just need to let those winds carry me.

Aloha is used both as a greeting and as a goodbye. While goodbyes can be sad at worst or bittersweet at best, saying Aloha seems to soften the blow and even add a bit of cheeriness to the farewell. I hope my departure from the Reflective Gypsy will be brief. I hope even more so that I will be able to sporadically post here. Either way, I hope great happiness finds you. Aloha!

I still wish I was in Hawaii.