Love Sick by Cory Martin (Interview + Review)

cory martinThis week is an extra special treat. Not only was I able to review an Advanced Reader’s Copy of Love Sick by Cory Martin (through Netgalley), she also offered to take part in an interview about her new memoir and her experience with MS (Multiple Sclerosis). You can read more about MS at the end of the post.

By the age of 25 Cory was already a writer on the TV show “The O.C.”, she has written 3 YA novels based on the show, a trained yoga instructor she has also written Yoga for Beginners (which is currently on sale, only $1.45 on Kindle – I picked it up myself and it looks really good).

Love Sick

love sickLove Sick is both funny and thought-provoking. Even if you don’t have a chronic illness, or know anyone who has one, I would highly recommend you read it. Because sooner or later either you, or someone you love will be dealing with chronic illness. It’s one of the more difficult facts of life, but the better we get about talking openly about these things, the better prepared we all are – and the better equipped we will be to deal with it ourselves and support our loved ones.

If it were later, I would have been better at this. I would’ve known that anything nice, even a simple “I’m sorry to hear the news” would do. Because I would’ve been through the same thing. I would’ve known what it felt like to have people know you’re facing a tough disease and have them say nothing. Or inappropriate things. Like when I first heard my own bad news, and Jay, the guy I was casually dating, called to tell me that Mercury was in retrograde and the planets were misaligned and he was quite certain that my neurologist was crazy and most likely all the pain and numbness that was wreaking havoc on my body was caused by the stars and I’d be better soon.
I would’ve known that silence was the worst. But I don’t. I hadn’t learned those lessons yet.

In some ways Cory’s and my situation is opposite. I had started dating my boyfriend (now husband) about 9 months before I started getting seriously ill, while she wasn’t in a serious relationship. Her day-to-day life isn’t that affected by her MS (at this stage), whereas I had to give up work within 6 months of my first severe flare.

And yet I completely and utterly recognize her thoughts and fears. I am beyond grateful for the love and support that my husband David has given me throughout this journey. I honestly don’t know where I would be today without him. And I struggle with feeling worthy, worrying that he’ll be “trapped” with me, questioning what kind of life he will have by staying with me, the things he won’t be able to do.

At the end of the day, the answer, for me at least, has been in truly embracing the fact that I am worth so much more than what my body can or cannot do today. And in realizing that our biggest struggles don’t stem from my illness, but from the times when I cannot accept my illness, and the limitations that it puts upon me. When I forget that it’s okay to ask for help, before I reach my breaking point.

“Senator Edwards,” I’d begin. “I don’t know much about politics, but there is something I believe only you can answer. Then I’d lunch into my speech. The things that concern my world. “Mr. Edwards, had you known that your wife would get cancer, would you have married her? If, when you were in your twenties, she told you she knew this would happen, would you have continued the relationship or even began it in the first place? Because, Mr. Presidential Hopeful, I wonder the same things right now. I wonder if I tell the guy I’m dating that I most likely have MS, is he going to run? I wonder who’s going to want to love me. I wonder who’s going to take me for sickness and health when they know the sickness is inevitable. That there’s a huge probability that I will one day end up in a wheelchair wearing diapers. I wonder, Mr. Husband of a woman who is dying, if you would do it all over again. I wonder, even if you know all the heartache, would you still fall in love? Because Mr. Democrat, I am a girl who needs to know. Who needs to know if a man will ever fall in love with her, despite her condition. Who will stand by her side through everything. I need to know, Mr. Father of Four Children, if you would still have this family, knowing that one day soon you will be the only parent in your children’s lives. I need to know that someone will take me and fulfill my dream of motherhood, knowing that one day things could get hard, that I might not be as useful as I am now. That I might not be able to play kickball in the yard with my kids, that I might be unable to brush my daughter’s hair, or tie my son’s tie. I need to know, John Edwards, that there are men out there who can see beyond all this. That there are men who won’t leave or stray when things get tough. Who can love no matter what. Who can love me. Forever. But most of all, I need to know. Can a Democrat really change my world?”

I believed loving me was like loving a ticking time bomb. That I had a clock that would inevitably expire and no matter how many red or blue wires were cut or disconnected, something would eventually explode and someone would have to clean up the mess. The possibility of paralysis, incontinence, trips to the ER, constant pain, lack of sex drive, depression – these were all things anyone who chose to be with me might one day have to learn to love.

One of the hardest things when diagnosed with a chronic illness, is learning to accept that the illness is with you for good. That there is no magic pill you can take to get better, there is no cure – although if you’re lucky (and depending on the illness) you might be able to go into remission.

Yes, there’s a lot of things you can do to manage your disease and improve your daily life. Nutrition, sleep, stress management, exercise can all make an incredible difference (and each part must be dialled in to fit your unique needs.

But when I found out that I, too, had to face the disease, all I could think was I’m dying, and Chuck has it easy. After I broke things off with him, he decided to work on getting rid of his disease. Twelve months later, he was getting his one-year chip from AA and I was being pelted with bad news.
While he gets to brag to our mutual friends how he’s beating his disease, all I get to tell my friends is that I’ve been told I have a new disease.
There’s a part of me that wants to go on a week-long bender, get completely sauced, do totally inappropriate things, and have someone come to my rescue. Tell me that I have a problem, and force me to start attending AA meetings.
If dealing with a disease were that easy, I would give anything to have the alcoholism instead of this damn MS. I want to go to a meeting and get cured. I don’t want to have to keep praying that I can walk. I want to be able to take things day by day. Wake up each morning and have my only worry with the disease be that I shouldn’t drink today, not whether I can still feel my toes. I want someone to give me a little chip for every 30 days I make it without any progression of the disease. I don’t want to have to keep getting MRIs to see how much damage my brain has accumulated. I want to stand up in front of a crowd and say, “Hi, I’m Cory and I’m an alcoholic.” Not have to wonder who I should tell, or if I should tell at all, or when I should tell someone that I’m facing a life with MS.
But I’m not an alcoholic so that fantasy will have to end right there.

Before today I was so caught up in the what-ifs of the unknown that I couldn’t live in the present, because I was so scared of the future. What I failed to consider, however, was that while I have some sort of certainty of the future because I’d been given a list of possible symptoms and outcomes of my disease, I have no more control over my body and my future than anyone else on this planet, and I need to accept that fact.
I am not in control.

A thing that used to frustrate me when I first got sick, but before I had any diagnoses, is how everyone would tell me that they hoped the many many tests I went through would “come back fine”.
I didn’t even know how to respond to that.

I would love not to be sick, but when I am already dealing with so many debilitating symptoms, I do not want my tests to come back normal. I always hoped for a clear, easily treatable issue. Like iron deficiency. I had anaemia as a teenager due to iron deficiency. For a couple of weeks I was sleeping literally every moment I got the chance, about 16 hours a day. Once I was diagnosed, I started taking an iron pill every morning and within a week I was doing better and within a month I was back to normal.

I wish I could take an iron pill and be better again. Or any other pill. I do not wish for normal test results, I have had way too many of those.

I still don’t have a definitive arthritis diagnosis, it’s currently classified as seronegative arthritis, meaning it is a form of inflammatory arthritis, but all the blood tests normally used to classify inflammatory arthritis are coming back “normal”.

“What if it comes back negative?”
I pause for a second. For the last year of my life I’ve been struggling to come to grips with the reality that I have MS, but…
“It never occurred to you that you might not have it, did it?” she asks.
“No. Because I know there’s something wrong with me,” I snap at her. It isn’t that I want to have the disease, it’s that I’ve spent over 12 months creating a new reality for my world. A reality where I know that at any moment my body could fail me and my limbs could be rendered useless.”

When people hear you’ve been diagnosed with a life-altering disease, they want you to have this big “aha” moment. This moment where you decided to do something grand with your life now that it’s been altered. Maybe you buy a ticket around the world, or vow to take an oath of silence for six months, or quit your job as a salesman and become a stuntman. But the truth is, this rarely happens. And it is definitely not what happened with me. MS never gave me the desire to go out and change my life completely, it just gave me the desire to keep moving forward, however difficult that may be.

Love Sick is an excellent memoir and I highly recommend it. I also wanted to mention that 10% of the profits from the book will be donated to the National MS Society.

Interview w. Cory Martin

Cory very gracefully allowed me to ask her a couple of questions about her experience with MS.

While you can never fully prepare for a diagnosis such as MS, is there something you wish you had (or hadn’t done) before your diagnosis?

I’m lucky in that my physical symptoms have been quite mild, so there’s nothing big I wish I had done before the diagnosis, but there are times that I wish that I had never said anything to my doctor in the first place. For me, the hardest part of MS is living with the unknown – the idea that I could be totally fine today and wake up tomorrow and not be able to walk still gets to me. The way I see it, because there’s no cure, what’s the point in knowing? By knowing that I have MS nothing really changes except my mental outlook. That being said, this might also be one of the biggest positives to come out of my diagnosis – the fact that I say yes to opportunity way more often than I say no, simply because of the fact that I don’t know what will happen tomorrow.

Yoga (and writing) clearly plays a massive role in your life, what else helps you manage your day-to-day life with MS?

Eating healthy, staying active and managing stress. When I don’t eat healthy or I spend all day at my desk working I can feel it, physically and emotionally. When I don’t move my body or I indulge in a bunch of sweets or potato chips, I start to feel lethargic and down. But if I get up and move, I can immediately change my mood. However, if I let the stress pile up, I can feel it in my body even more. Things start to go numb, my speech and writing gets jumbled and I begin to feel out of sorts and less motivated to do yoga or stay active, which of course, starts a never-ending cycle of: I feel crappy so I don’t want to do anything and because I don’t want to do anything I feel depressed and because I’m depressed I want to eat bad foods, and because I’m eating bad foods, I feel less motivated and because I’m less motivated I move my body less, and then I feel even crappier and then I eat more and I don’t move and on and on.

One of the things I’ve done lately to combat this is to give myself permission to take time off. Obviously, I know this is only possible because I work from home and for myself, but I still believe others can do this by simply setting boundaries. Instead of eating lunch at your desk and working through that time because everyone else is doing it, step away and take fifteen minutes off. Don’t feel guilty about it. Just do it. If I notice that I’m starting to fall into that terrible cycle I described above, I’ll take the afternoon off and go for a long walk around the neighborhood or down to the beach and I don’t feel guilty about it. Because, for me, my priority is my health.

I understand that you waited a while before telling many of your friends. For those who might not have experience with chronic illnesses, do you have any advice on how to best react to a loved one sharing their diagnosis with them? What not to do?

I would tell anyone whose loved one is sharing a diagnosis with them to simply listen. Many times this was all I needed. The problem I think with a lot of chronic illnesses, especially the invisible ones, is that we already feel like it’s in our heads, so if you’re not willing to listen, you’re only validating our fears that we’ve made this up. But the truth is, we haven’t made it up and when we finally have the courage to tell you what we are going through we want to feel heard. I’d also say, please don’t try to compare your experiences to ours. Unless you suffer from the exact same illness, in which case it might be helpful to hear your experiences, it doesn’t really help. Many chronic illnesses have symptoms that, yes, could occur as a normal part of life, and that’s why many of us wait so long to tell our doctors, but when it gets to the point that we’re getting a diagnosis it’s because those random symptoms are enough for us to take notice and want to do something about it. The numbness I feel in my arms is not the same as when you cut off circulation from sleeping in a weird position. When you try to compare yourself to me you only make me feel like, again, it’s all in my head and maybe I’ve just made it up. The truth is, your loved one is scared and they simply want to be heard and hugged, so give them that. Listen and be there for them.

To learn more about Cory, you can visit her website, follow her on Instagram @corymartinwrites and on Facebook

Once again, many thanks to Cory for letting me read Love Sick and for taking the time to answer my questions.

What is Multiple Sclerosis?

Multiple sclerosis is and autoimmune, potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms. There are several different types of MS, and each case of MS is often very different both in terms of the symptoms experienced and the effects it has on your day-to-day life.

The type Cory has is called relapsing-remitting MS, and is the most common variant. With this type of MS you might have months or even years where you are in remission without any new symptoms developing (you might be completely symptom-free or continue to experience symptoms from previous relapses).

Symptoms of MS include:

  • Loss of balance
  • Numbness
  • Tingling
  • Blurred or double vision
  • Thinking problems
  • Cognitive Changes
  • Pain
  • Fatigue
  • Sexual Dysfunction
  • Depression
  • Bladder Problems
  • Bowel Problems
  • Trouble Swallowing
  • Clumsiness or a lack of coordination
  • Weakness in an arm or leg
  • Unusual sensations – i.e. “pins and needles”, numbness, itching, burning, stabbing or tearing pains.
  • Trouble walking
  • Tremor
  • Seizures
  • MS hug, which feels like a tight band around your torso and ribs which makes it difficult to breathe.

Learn more about MS:

National MS Society

You Don’t Know Jack About MS

MS Connection

 

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