Souvenirs You Never Lose

And scars are souvenirs you never lose
The past is never far
Did you lose yourself somewhere out there?
Did you get to be a star?
And don’t it make you sad to know that life
Is more than who we are?
-       The Goo Goo Dolls; Name

I often think about this song; especially the line “scars are souvenirs you never lose.” My friend Christine is recovering from Stevens-Johnson Syndrome. She is well on her way through recovery, but she will never be the same. She recently posted this quote from Khalil Gibran:

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

A friend responded with this quote from Chris Cleave:

“We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means I survived.”

The song by the Goo Goo Dolls goes on to say that the past is never far. This is so true when you are looking at your scars. I see my scars every day. Yes, every day. There are mirrors in my bathroom, and when I step out of the shower I am reminded of who I am today. I am lucky I didn’t lose myself, though that could easily happen to any of us faced with tragedy.

I’m not sure I understand the line “don’t it make you sad to know that life is more than who we are?” because I am glad that life is more than just me or just who I am. In fact, life is more than just individuals and how we interact. In so many ways the whole is greater than the sum of the parts. What we give to each other through our actions, friendships and love is bigger than just you and me. That legacy goes on through the years and can touch generations. In fact, I am touched today by people I never met because someone, at some time, had an impact on my parents, my siblings, my friends. Yes, life is more than who we are. And no, it don’t make me sad.

I don’t like my scars. I don’t hate them, but I don’t love them either. I look at them and they are a reminder of days (and months) gone by. In some ways I have accepted them as part of who I am now. It’s almost like they’ve always been there, and it has been less than six years. My scars are deep. I will never be whole again. At least not physically. And while my scars are souvenirs I’ll never lose, I have emerged stronger and my scars mean that I survived.

 

 

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor.

Family: Christine, Part 3

Some would say that Christine’s Aunt Cindy is my best friend. To me, she is family. It is often quoted that “family is not flesh and blood,” but who we choose to stick by through everything life has to offer. Our story started long before our parents were even married. You see, Cindy’s uncle and my father-in-law were college roommates 25 years before Cindy and I shared an apartment together on that same college campus. Our families are friends. I love her brothers as if they were my own brother; which includes the teasing. Her older sister is, in many ways, my older sister.

I held Cindy’s children when they were just hours old and have watched them grow up into the beautiful, responsible teenagers they are today. But beyond sharing vacations and birthday parties, Cindy is an ever-present part of my life. Helping me through the difficult times, as well as celebrating my successes.

Christine has been part of my life, like her cousins Kate and Megan. I met Christine’s mother, Ami a few years before she was born; when her sister Caroline was only months old. Over the years we have shared family parties, Thanksgiving Dinner, and her graduation from college. I have had the privilege of watching her grow into the beautiful, strong, intelligent young woman that she is today. It breaks my heart to watch her struggle and there is nothing I can do. She and I have a lot in common and have shared some “pains” of growing up. I see so much of myself in her, and while our diseases are so very different I have a sense that we now have one more common bond. In so many ways she is a role model and gives me strength.

Her Aunt Cindy (my friend and “other” sister) is matter-of-fact and practical. She tells it like it is, in the middle of all the drama. When I was first diagnosed with breast cancer I knew that I had to tell her in person. A phone call or an email just wouldn’t do. We went back and forth a bit on “when” we could get together until I simply stated, “I need to see you.” When I broke the news her first words were, “I’m not going to plan your funeral until you tell me to.” Now that may seem odd to some, but those practical, matter-of-fact words were words of comfort and love. In some ways, only family can talk to you that way.

When Christine got sick, Cindy dropped everything to be there for the family. She did (and does) what needs to get done. She doesn’t obsess about what “might be.” For her, it is about the here and now. A philosophy of: We do what we have to do now to get through this, and we don’t make plans until you tell me otherwise. That’s when you know she’s got your back. That, is family.

 

From the Inside Out: Christine, Part 2

[WARNING: This post is a rant against the pill-popping society that we’ve become]

My grandfather was a hypochondriac. According to him, he suffered with many aches, pains, and illness. There was always something wrong with him – and a pill to fix it. He was a pleasure-seeker, so he was always looking for that “next thing” that made him feel good. It was often found in prescriptions.

This is not a fond memory. The fact is, there was a lot wrong with him due to mental illness, but this particular symptom has had a lasting effect on me. You see, I don’t want to be like him. I don’t want to take a pill for every little ache or pain. The irony is that if you have an illness or ache while at my house I probably have the OTC medication in my bathroom cabinet to help relieve your symptoms. I just don’t take them. I often live with a mild headache or pain in my joints rather than take an aspirin or a couple of Advil.

You see, we have become a society of the quick fix. Every day there are ads on television about the latest drug that will help with whatever ails you. Feeling a little blue? There’s a pill for that. In fact, many of these drugs have more than one advertisement because they “help” more than one problem. Did you know that Cymbalta® is indicated for both mood disorders and some types of arthritis? www.cymbalta.com. I became aware of this when I saw one ad for Cymbalta® as a supplement for depression and then later in the same hour I saw another ad for Cymbalta® as relief for fibromyalgia. Of course I had to go and look it up.

Now don’t get me wrong. There are people with serious, clinically diagnosed, physical ailments, like fibromyalgia, arthritis, heart disease, and diabetes. And I’m not saying medication should be avoided if you have a potentially life-threatening health issue. But there is a rising trend with pharmaceuticals that promise to fix whatever bothers you, and that is my objection.

I grew up in the ‘70’s. There was no such thing as attention deficit disorder. If you misbehaved in school you were punished. You had to stand in the corner or received a detention and could not play at recess. The real trouble makers were sent to the principal’s office. But we learned to behave, and I don’t remember a lot of serious offenders in elementary school, though there were a few. Today, parents don’t want to take the time to discipline their children. And they refuse to let school teachers provide appropriate structure in the classroom. Instead, a child, acting like a child, is labeled and given drugs to control their behavior.

When I was a senior in high school we had a particularly disciplined English teacher. She was structured and demanded the best out of us. She had a reputation for being stern. We all fell in love with her. On the evening of our Senior Prom a group of us all went to dinner together. The conversation eventually came around to her class. One of my classmates began to sing her praises. His date said, “But she flunked you?” His response, “Yeah, and I deserved it!” Back in 1982 there were consequences for our behavior and we learned from the discipline and structure that was imposed. Today, behavior is excused and children are given drugs.

You’re probably wondering how this is related to Christine and Stevens-Johnson Syndrome. I do not know what caused Christine’s allergic reaction. I don’t know if she was taking a prescription drug, if it was an infection, or if it was a reaction to an OTC non-steroidal anti-inflammatory drug (NSAID) – all of them common culprits from my research. It may have been a combination of things. And Christine is not the type of person to take a pill just for the sake of taking a pill. But her condition got me thinking about my own reaction to taking medications (of any kind) and how I’ve become an advocate for whole foods, organics, good nutrition, and exercise for healthy living to help ward off sickness and disease. Christine has been burned from the inside out. And she needs to heal from the inside out.     

As you know, I underwent chemotherapy treatments. I have learned a lot more about my diagnosis as I’ve researched the details of my pathology report. I have never thought that I needed chemotherapy to “cure” me, but rather it was preventative medicine. I still believe that, and I am convinced that it was necessary given my diagnosis. But I’ve also learned things that I can do to help prevent cancer. Anyone can do these things. Stay at a healthy weight, for one. As a result, I am on a “diet” to get my weight into a healthy range. I am also conscious of what I eat. I would say that I am 80% organic now. I say that because I refuse to become obsessive. I buy and eat as much organic as I can. However, I still go out with friends, eat in restaurants, and go to dinner parties at other’s homes. I’m also known to enjoy a dessert or glass of wine. The adage “everything in moderation” comes to mind.

So my rant against pharmaceuticals is not that we do not need doctors or medicine. It is not that I can never take an aspirin. Rather, I think about what I am ingesting and why. It is about balancing the need for a prescription medication with letting a cold run its course. For me, it is about not obsessing about taking a decongestant. As much as my grandfather was a bad example (or a good example of what not to be), I have to think that his influence was, in fact, a good thing because I stop and think about what I am taking and why. And I am conscious of not making some pill a habit.

We, as a society, need to get back to what is wholesome, nutritious, and real. We need to heal from the inside out.

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor.

Life, the Universe & Everything: Christine, Part 1

Three weeks ago I learned that two people who are very dear to me were hospitalized with a life threatening health issue. My world, my everything, had been turned upside down. And there was nothing I could do. I suddenly understood how it felt to be on the “other side” of a life threatening illness. Today, as I understand from updates, they are both on the mend.

Last week I was finally able to see my friend Christine. When I say “finally” it is not because she had any restrictions on visitors. It was timing. Every time I thought I’d go visit something happened to prevent me from getting into Boston. As I told her, I have to believe that there is and was a reason for my delayed visit. I have to trust that all of this was God’s timing. Her response: “You were meant to be here today.” And she wasn’t having a good afternoon.

 

Christine is hospitalized with Stevens Johnson Syndrome. Stevens-Johnson Syndrome is a rare, serious disorder in which your skin and mucous membranes react severely to a mediation or infection. [Mayo Clinic]. Essentially, it is a chemical burn from the inside out.

During my visit there was a parade of doctors and nurses coming into her room. No one seemed to mind that I was there or that the doctors were discussing her personal, medical situation in front of others. The attorney in me dismissed it as implied consent, but yes, I did think about HIPPA. However, Christine wants to have others hear what her doctors have to say, and that is a good thing. When you are that sick it is important to have another set of ears, and for others to ask the questions you might not think to ask. I am impressed with her sister Caroline’s dogged insistence at asking questions and gently demanding answers.

Christine was having a flare-up of symptoms when I visited. Her lips were swollen and she had developed some new lesions around her mouth and on her tongue. I could see the fear in both Christine and her sister; the fear that they were starting all over again. (It seems that the doctors had started reducing her steroids too soon and the SJS hadn’t yet run its course). Behind that fear is also strength. The two of them, working together to make sure the doctors and nurses got a full picture of what was happening. They shared their experience of when Christine first developed symptoms and they didn’t know what it was. Having this shared history helped when the Attending and the eye doctor visited because they were able to compare the beginning of Christine’s illness with her current situation.

The more I have learned about this syndrome, through my own research as well as following a blog that Caroline started to keep everyone updated, I learned both of the seriousness of Christine’s condition as well as the long and difficult recovery she faces. Some would say that the reason she is doing so well is because she is young and (other than SJS) healthy. This is true. But there is more to it than that. Christine has faith and determination. What impresses me most about Christine is Christine.

During my visit we talked; we talked about SJS, her symptoms, and her struggles. We also talked about faith and knowing that this has a purpose for her life. And we took a walk. Christine had been bed ridden for two weeks and had just begun to take short walks to the nurse’s station and back. The day I visited she had hoped to walk four times. While I was there she took walk number three. Walking was not easy, but she wanted to walk a little further and do it on her own. Even when she was visibly tired she did not want the nurses to get her a chair. She was determined to finish her walk.

It is that determination that I recognize and admire. There is a fight within that says “I’ll be damned if this thing is going to get me down.” I know she has her bad days; days of frustration and tears. That is expected. I saw so much of myself in her that afternoon. I was on the “other side” and I didn’t know what to say. I did tell her I was scared for her. It’s important to tell the truth. And by the time I left she looked much better; the swelling was down and she wasn’t as red. Her eyes seemed clearer, as if she wasn’t in as much pain.

As I left all I really wanted to do was take her in my arms, hold her tight, and make it all go away. Isn’t that the ultimate truth for all of us who are on the other side? It is the truth. About life, the universe and everything.