Interview With Author Matt Cavallo*

I recently read “The Dog Story” by Matt Cavallo.  Matt was diagnosed with multiple sclerosis (MS) at the age of 28. 

I’ve invited Matt here today to tell you a little bit about himself and his book. 

First off, can you tell my readers a little bit about yourself?

MC: Hi Leslie! Thank you so much for having me! As a fellow complicated patient and Master of Public Health, I enjoy your blog immensely. My master’s degree is all about using technology and public health policy to solve the types of challenges solving the coordination of care with multiple specialists as you pose in your, “There’s No I In Team” blog post. My day job is training doctors, nurses and therapists on hospital EMR systems. I was in your neck of the woods at Botsford Medical Center in Farmington Hills, MI earlier this year.

As for me, I’m thirty six years old and live with my wife, Jocelyn, two boys, Mason and Colby, and our neurotic Wheaton Terrier, Ted.  At age twenty-eight, I was diagnosed with Multiple Sclerosis. Seemingly overnight I went from a fully-functioning, healthy man to someone who was numb from the waist down and unable to walk.  I wrote my story of being diagnosed and overcoming the physical and emotional challenges associated with having a chronic disease in my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. As a result of my diagnosis, I have dedicated my life and career to healthcare and the fight against MS.

What made you decide to write a book about your experience with MS?

MC: When I was diagnosed with MS, I went into a deep depression. I didn’t want to accept that at 28 years old my fate would be to have a progressive disabling disease. My friends, family and even my wife, tried to connect with me, but I felt isolated. To snap me out of my depression and to feel reconnected, I wanted to read another patient’s experience. I found myself in the aisles of Barnes and Noble flipping through books that were either scientific and clinical, focused on the power of positive thought or holistic “eat these leaves and you’ll be cured” books on the shelves.

I wanted something different. I needed a story that captured the fear and emotion of the unknown that I experienced alone, in my hospital bed. I left the store without buying anything and feeling more isolated and alone than ever. Then, I got home and started flipping through a journal I had been keeping in a green, spiral notebook. Because this experience was new and scary, I had wanted to make sure that I remembered everything, so I wrote it down. Writing also helped me cope with the depression and other emotions I was experiencing at that time.

As I flipped through the pages, I realized that my story was the type of story that I needed. That I had a responsibility to other patients to write an honest story that they could relate, too. I also made a pact with myself to be honest, open and to not be afraid to be vulnerable. It is difficult to share a personal story that lets the reader into intimate scenes of your life, but when it comes to personal health, that is the only way to be true to your audience. By doing this, I knew my story could become a vehicle to raise awareness to the devastating effects of chronic illness.

I definitely agree with you about the importance of truth and authenticity when sharing your personal health story with others.  In the book, you seem to use humor to help you cope, but it doesn’t seem like the people around you, including medical personnel, were all that amused.  Did humor help you cope, and how did you deal with those around you?

MC: My sense of humor was off the mark in the hospital. The nurses and doctors were so serious that my jokes fell flat as I tried to lighten the mood. I also think I was using humor to mask my fear. It was difficult to maintain a sense of humor because those closest to me were all doom and gloom. As I lay in my hospital bed watching my mom and dad fall apart, I knew that I had to be the strong one.

It is interesting how people close to you act when you are diagnosed with a chronic illness. My mom was crying, saying it was her fault for having me. My dad all of a sudden met a hundred people with MS that were playing tennis and hiking mountains. I even had a friend tell me that drinking Pedialite would somehow help regenerate spinal fluid after my spinal tap.

While people were trying to help and sympathize with my situation, all of their help was making it worse. So, when I could walk again well enough to leave the house on my own, I hopped in my truck and headed to the beach. I wanted to do a mental flush. With all the people around me having trouble coping with my condition, I never had a chance to process what actually was happening to me. During this time, I had an epiphany about the song, Moon Shadow by Cat Stevens. This epiphany eventually led me to start writing The Dog Story.

Eight years later, the way that I have handled my diagnosis and the way I fought through my many relapses and recoveries has served as inspiration for others. My sense of humor has encouraged other patients like me to find the humor in their own situation and appreciate the life they still have. Laughter continues to be the best medicine for my MS.

Can you talk a bit about the timeline of the book?  It actually covers a relatively short period of time, right?  I know it probably felt like forever to you.

MC: I’m glad you brought up the timeline as it was a challenge for me to capture. The first part of the book is essentially a daily journal. It follows me from my initial onset of symptoms, to the hospital and eventual discharge.

Once I am discharged from the hospital, I am severely affected by spinal headaches and pain meds, so the period in between the discharge and diagnosis spans about a month. This is a collection of scenes that transition from the everyday journal, but keeps a similar format.

The book concludes a month later with me starting to come to terms with my diagnosis and how I coped with my fate. The dates in the story actually happened in my life from May to July of 2005, so about a three month span.

So I am often “accused” of sharing too much on my blog – TMI – if you know what I mean.  And there are some pretty intimate moments that you share in your book.  How/why did you decide to include those?

MC: Thank you for bringing this up, Leslie. I’ll try not to blush! When I lost functionality from the waist down, I didn’t just lose my ability to walk...I lost my ability to use everything. This was also during a period when my wife and I were planning on starting a family. I feared that I would never be able to have children.  Sexual dysfunction is a subject that is difficult for most people to discuss. So, I challenged myself that if I was going to write an honest book, I would have to write about, well, everything.

Sexual dysfunction is a common problem for people with MS. According to the National MS Society, 91% of men and 72% of women with Multiple Sclerosis experience sexual problems. While ignoring these problems can lead to depression, self-esteem issues and reduced quality of life, the topic is awkward to bring up in casual conversations. Even talking to your doctor about your sex life can be painfully embarrassing. So, I figured if I was going to write an honest book that I was going to have to address what happened to me.

My readers have connected with my openness. I have received emails from all over the world about my courage to discuss uncomfortable subjects and how they feel less alone. I think that my story also gives my readers the strength to talk about these topics without feeling embarrassed. Plus, my story has a silver lining. Two years later after I went through all of this, we were finally able to conceive a healthy baby. Today we have two beautiful boys, which back then I didn’t think would be possible.

Sorry for making you blush, Matt!  I really did appreciate your honesty on those topics.  I think for me, one of the hardest parts of the book to read is when you are talking about the experience you had getting a spinal tap. To be honest, I’ve never had one, but that is one of the few things that really scare me still. 

MC: I hope you never have to get a spinal tap, Leslie! I try not to relive that scene in my life. The pain, the recurring crippling headaches, the helpless feeling that it would never end still ranks up there with the worst thing that ever happened to me. I broke my neck in 201o as a result of the damage from the Transverse Myelitis. I had to wear a hard collar, plus get used to the idea of swallowing with a titanium plate in my throat. While that ranks up there, the pure torture of the spinal tap still is the worst thing that has ever happened to me!

As a writer, I wanted to capture the gut-wrenching emotion involved with my spinal tap to evoke a visceral reaction to the scene. People have written me, saying that reading my spinal tap scene actually caused them to feel back pain. I think that I have done a good job as a writer if readers can experience the pain of a spinal tap without actually having the needle driven through their spine.

I certainly had a visceral reaction to it.  Are you well now (relatively speaking)?  How do you stay healthy?  Do you think you’ll get seriously ill again?

MC: MS is a lot like what you go through with RA, Leslie. I’ll have periods of calm, but I always know it is there. After the Transverse Myelitis, I had Optic Neuritis, which caused me to go blind in my right eye. Then, I had a cognitive relapse which affected my memory like an early-stage dementia patient. All of these symptoms were treated and resolved.

Today, I feel like Cinderella at the ball. In 2007, I was switched over to a risky, new treatment which killed people in clinical trials called Tysabri. I haven’t had a relapse since starting the new medication, except in 2010 when I had a neck surgery.

After surgery, I was sick of the fight and stayed off the treatment for over ninety days. As a result, all my MS symptoms came rushing back and I had a major relapse. I needed IV steroids before I could resume my Tysabri treatment. I knew then, that I was married to my medicine and that I only had about ninety days of my current quality of life before my MS symptoms overtake my body. Taking a risky medication is a tradeoff that I make so that I can work to support my family and be the husband and dad that I want to be.

What have you learned from your experiences?

MC: I learned to never take one moment for granted. Since going through the experience of being diagnosed with MS, I have experienced a lot of loss. Experiencing losing my ability to walk helps me to appreciate every step that I take. This is why that even on days where I feel weak and tired, I force myself to get up and walk my dog, Ted. This was a promise that I made back in the summer of 2005 when I got Ted. It has been eight years and I still have not broken that promise.

What do you hope readers will get from your book?

MC: Readers will finish my book with a sense of hope. They will realize that if I can overcome what has happened to me, that they can too. That using humor in the face of great adversity can help to keep their spirits high and to do the best they can with what they’ve got, no matter the situation.

Your story is similar to other young patients, myself included, even though we have different illnesses. You were at the top of your game, your life was settling in, and then you were diagnosed with MS.  What advice would you give to others like you?

MC: When I worked at the neuroscience clinic, helping patients like me and you, I would find myself talking to people that had seemingly given up the fight. They would recall how they used to be before becoming ill. I would tell them, we have eyes in the front of our head because we were never meant to look back. Focus on being the best you can be today. Just because the circumstances are different, that doesn’t mean you can’t enjoy life.

What’s next for you?

MC: Right now my kids are small and my health is good, so I plan on playing with them and being as involved as I can be in their lives. I am also going to continue to use my story to help spread awareness and to help other patients like me. I have been doing a lot of motivational lectures and would like to expand my speaking opportunities to reach more people. My readers have asked me to keep writing and tell more of my adventures as a continuation to The Dog Story.

Thank you again for having me, Leslie!

Thanks, Matt, for sharing your story!  And thanks for stopping by Getting Closer to Myself today. 

For more information, head over to http://mattcavallo.com, and say “hi” to Matt!

*I received a free copy of this book from the publisher.  However, my choice to have Matt as a guest blogger was my choice, and had to do with my personal opinion of the book.

Will The Real Nurse Ratched Please Stand Up?

Here's to you, Nurse Ratched.  Bottoms up! 

Oh wait, she doesn’t have to.  I’ve met her already.  She’s real.  And she gives me nightmares.  That’s right.  My Nurse Ratched isn’t the stuff of fiction.  No, she’s a real live woman who trolls the halls of the bowel control program.  Yeah.  I don’t think you need any more information than that.

Every time she calls me, she suggests yet another remedy for my severe constipation.  Have we tried this?  Have we tried that?

This is the woman who, over the past several months, has had me do a bowel cleanse five separate times.

I feel like Bill Murray in “Groundhog Day.”  Every time my phone rings and it’s her, it’s the same thing over and over again. 

It’s worse than deja vu because there is no escaping it. 

And despite my frustration, I have been compliant, because I need help, and at the moment, she stands between me and a treatment that will hopefully work. 

Then, out of the blue, I get a letter saying that the office has tried to call me multiple times without success.  That’s interesting since I’d been wondering about them.  And I hadn’t received a single call.  Actually, I got two copies of the same letter on the same day.

The letter ends: “If we do not hear from you within the next t 30 days from the above date, we will assume that you no longer require our assistance.”

Guess what bitches?  You aren’t helping me anyway.

Really, you’re going to drop me as a patient when you’ve only contributed to making my problem worse?  That’s pretty funny, if you ask me.

She and the other nurses that I have communicated with have made my life miserable.  This one in particular has downright been a bully, basically telling me that I have to do exactly what she says...or else… 

My bowels move about as well as an eighty year old’s, at this point, and I’ve done everything they have suggested I try, and nothing has worked.

Her latest suggestion is Lactulose, whose main side effects are “Gas, bloating, burping, stomach numbing/pain, nausea, and cramps.”  I think she is single-handedly trying to kill me.

Lactulose is basically like what I would imagine drinking corn syrup straight up would taste like.  

And it gave me the worse gas pains of my life.  I was literally sitting on the toilet, my body convulsing, and going alternately from sweating to death to freezing, and all I could think was “somebody kill me now.”  I felt like a druggie jones-ing for a fix.  My body has never reacted to anything like that before. 

Way back in August, my doctor prescribed Amitiza.  This would hopefully be a one-pill-a-day solution to my chronic constipation.

But no!  Nurse Ratched told me over the phone that a pre-authorization is required, and that a denial would need to be appealed, and that takes too much of her time.  So rather than doing what my doctor prescribed, she’s had me try every constipation regimen under the sun, which has caused my body to basically flat line in the pooping department.

These days, if I go once a week on my own, that’s saying a lot…    

I think I’m more likely to shit gold at this point than excrement.  It would probably feel better, too.  And at least I’d be rich.

I don’t think this nurse understands that while this isn’t my biggest problem, though at the moment, it may actually be, it’s a quality of life issue.

I would honestly rather deal with arthritis pain than gut issues.  They can be totally debilitating. 

I’ve been told by pretty much every doctor I’ve ever seen for this problem that I am too young to be having the problem to the degree that I am.  But I’m supposedly too young for lupus and RA too, so that’s a mute point. 

 

I’m so over this nurse-on-a-power-trip thing.  You’re not a doctor, so stop acting like one.  And do what my doctor told me he thought was best, not what is easier for you.  Just because you’re too lazy to do the prior-authorization and then file an appeal when it’s declined, isn’t my problem.  But you’ve made it my problem.  And quite frankly, now I’m just royally pissed….And royally constipated.      

The next time I go to my doctor, I’m going to bring my Lactulose with me and ask my doctor to get Nurse Ratched.  Then I’m going to have her do a shot of Lactulose with me.  A small price to pay for my pain and suffering.  It’s the least she can do.  In solidarity, right? 

There Is No "I" In Team

I’ve been pretty frustrated lately by all of the backpedaling I have to do as far as my health is concerned.

I feel like the main problem is that I don’t have a medical team. 

I have a group of doctors that I see, that are responsible for my care, but they are not a team. 

I have a primary care doctor, a rheumatologist, a nephrologist, a gastroenterologist, a psychologist, a psychiatrist, an ear, nose, and throat doctor, and a neurologist.  Some of those doctors I do not see regularly, like the ENT and the neurologist.  But the others I see multiple times a year.

However these doctors exist in isolation of one another.  They don’t talk.  They barely know each others’ names.  And they are in the same, albeit large, medical system.

And this is hurting me.

One hand doesn’t know what the other is doing.  And this often means multiple calls and e-mails to multiple offices about the same issue. 

And lately it seems like nurses are on a power trip and are opting to make decisions without consulting the doctor.  I’ll have another post on this later.

But suffice it to say that I can’t do it all.  I can’t interface with all doctors and get the message across to all the others. 

There is no “I” in team.

Right now I feel like I am a team of one.  And that’s not really working.  One person does not a team make.

That isn’t to say that I don’t have an unofficial team around me, like my boyfriend, family, and friends, who I am sure would advocate for me should I be unable to do it myself.

But I don’t have an official, expert team. 

A group of experts is great, but not when they don’t work together.  In fact, it seems that this can be counterproductive. 

The point here is that a medical team is essential.

The idea of an interdisciplinary team in the medical setting is not a new idea (De Wachter 1976; ).  Neither is considering the patient to be an essential part of that team (De Wachter 1976).

According to one article, “Communication failures are the leading causes of inadvertent patient harm.  Although medical care is delivered by multiple team members, medical quality and safety has historically been structured on the performance of expert, individual practitioners.  Effective communication and teamwork have been assumed, and formal training and assessment in these areas has been largely absent” (Leonard, et al. 2004: i85).

We should also do well to remember that pharmacy technicians are also a part of our medical team.  I’ve had a lot of issues with prescriptions and pharmacies lately.  I was out of town, and because of the holiday, and when my pharmacy reopened, they were out of the medication, so I ran out of medication on Thursday and didn’t get the medication in the mail until Monday.  This is the longest I’ve gone not taking this medication.  I don’t blame the pharmacy completely. 

But my frustration, yet again, is that so much of my well-being is in the hands of others, and that does not fill me with confidence.  And when it is totally out of their hands, it is totally overwhelming for me. 

Lines keep getting crossed, things keep getting messed up, and I feel lucky that I am on top of my care enough to be able to know when errors are being made.

But I also worry about those who are not as much in control, for whatever reason, and don’t know that things aren’t the way they should be. 

I do know that my PCP and rheum do talk to each other, which is a huge relief for me, and has been helpful.  Despite this, my PCP often tells me to ask my rheum or talk to my rheum or try and get in to see him.  And then I get told that I can’t be seen sooner than my appointment that is three months away.  Then I e-mail him directly (and subvert the system) and get in earlier.  Only because I need to see him.    

So how do you create a medical team that is willing and able to work for you?  It’s great to have experts, but experts with disparate goals doesn’t do all that much.  One of my goals for the New Year is getting my healthcare back on track.  That may mean having to find new members of my medical team.  But it definitely means finding a way to get all of my medical professionals on the same page.  Or at the very least, communicating with each other, with my pharmacies, and seeing me as an inherently important part of this so-called team.      

References

De Wachter, M. 1976. “Interdisciplinary Teamwork.” Journal of Medical Ethics 2: 52-57.

Firth-Cozens, J. 2001. “Cultures for Improving Patient Safety Through Learning: The Role of Teamwork.” Quality in Health Care 10 (Supplement 2): ii26-ii31.

Leonard, M., S. Graham, and D. Bonacum. 2004. “The Human Factor: The Critical Importance of Effective Teamwork and Communication in Providing Safe Care.”  Quality & Safety in Health Care 13 (Supplement 1): i85-i90.