Interview with Marlo Donato Love, Author of Awkward Bitch: My Life with MS

Interview with Marlo Donato Love, Author of Awkward Bitch: My Life with MS
Marlo Donato Love Photo by David Yeo,

After I got diagnosed with MS, I ordered many books about the disease.  Yoga books with modifications for patients in wheelchairs and books about diets that can work better than medicine. 

Awkward Bitch My Life with MS was different than all those other books.  This one was real.  The author, Marlo Donato Love, tells it like it is, not leaving out a second of the experience.

My entire body was clenched and panicked when Marlo described her intense pain as she fought a UTI while taking the bus across town to get her antibiotic.  Of course, when she arrived she was denied because her doctor had not called in the prescription.

I've been there (luckily not with a UTI) but at the whim of the doctor and the messages and waiting for the call back.

I could not put down the book and by the end I so much identified with the fashionista author (did I tell you works at Donna Karan in London?) that I found her on twitter, got her email and ultimately interviewed her and am thrilled to share with you today.

How old were you when you were diagnosed? 32 years old

What were your initial symptoms? Optic neuritis, diplopia, dizziness, and numb toes. Of course I never put the two together!

How long before your initial flare up went away? The first episode lasted about two months.

Did you ever get back to “normal”? I got back to normal the first 4 or 5 relapses. After that, the recovery was slightly less each time.

Have you noticed changes with hot and cold? Yes. I cannot tolerate wet heat. So no humidity for me! The second I am in humidity, I lose eyesight and cannot feel my leg.

How does MS affect your family most? It is a worry for my mother. She always thinks I am not telling her some symptom I must be having. My children are too young to notice it. My husband worries, but doesn't say.  The fatigue can sometimes have an effect on family, as I don't feel the energy to attend everything we are invited to.

Oh, I can relate to all of that.  Have you noticed changes in your relationships since you have been diagnosed? Yes. Some relationships died off. Some got stronger. I realized who my real friends are. MS can be a good way to weed out people you probably don't want in your life anyway!

I also got divorced several years after diagnosis. MS had some effect on that relationship, but I also found love and built an existing friendship.

Have you tried any treatment? I am currently on Tysabri, which has been the best thing for me. It changed my life. It gave me the energy to have children and hold a full time job. Before that, I was on Rebif and also on Avonex. My MS progressed whilst on those, and I had two debilitating relapses in a row whilst on Avonex. I also had extreme injection site reactions, so we switched to Tysabri at that point.

I also find acupuncture very helpful.

Do you exercise? Yes, although not as much as I should these days. I walk about 2 miles a day for my commute. I am on a shop floor as well, so I am
constantly up and down stairs. I also do some Pilates. I am trying to get back into swimming, but having a challenge finding the time.

I want to swim more too.  Do you follow a specific diet? Sadly, not really. I do not eat meat, but that was before MS. I take fish oil; eat plenty of salmon and greens and love to juice. But, I also eat Milky Ways and Doritos. I know these treats are full of mono-unsaturated fats - a no no for us MS'ers.  I am not the poster girl for healthy eating!

I also eat dairy. I love cheese. No, I mean, I LOVE cheese. But I actually think that dairy is one of the worst things a human can eat. I know that I will need to stop dairy one of these days, or years!

I do see a difference in my health when I eat well. I think our diet has so much to do with our health. I just need the discipline to do more about it.

What has been the biggest challenge of MS? Fatigue is high on my list. It can really stop you from living your life. Also, the war that goes on in my own mind sometimes, if I think too much of 'what if?' about the future.

What has been the biggest blessing of MS? To meet wonderful and inspirational people. To know my own potential as well. It has made me a much better person. I enjoy each day as it comes and take nothing for granted.

Why did you decide to write Awkward Bitch? I wanted to tell people who don't have MS what it is like for some of us. I was telling my little stories to people, and so many would tell me that they understood what I was trying to describe and they encouraged me to write it down.

When I first looked for books about MS, most of what I found were slightly religious themed books. I wanted to read something where someone would just say "What the Fuck" and so, that was my book. I also wanted other people with MS to know that there is light at the end of the tunnel. I am a strong believer in inner strength and finding answers within yourself.

I use spite and anger as a sword to fight MS. I refuse to let it stop me from living an incredible life. I wanted other people to see that they can do this too.

MS is not the end of the world. In fact, it can be a beginning.

Photo courtesy of Marlo Donato Love

Photo courtesy of Marlo Donato Love

Was it difficult to get published? It was a process. I had an agent for several months and got great feedback from almost all of the major publishing houses. They did not feel that it would sell 100,000 copies that they need as a minimum, though. They each said it was too niche. So, I did not get a deal through them. I instead published it on my own. A couple of years later, I got a publishing deal in Lithuania, where MS is widespread. So, it is published in Lithuanian as well.

I am thrilled to hear you are working on Awkward Bitch 2.  Any idea when it will be published? I am writing it between midnight and 3am. I am about 85% finished, so I am hoping for May or June.

Since the book was written you have a new man and two kids.  How has motherhood affected your MS?  Motherhood has made me stronger in every way. My children are my reason for being, and they give me strength and hope.  They are amazing little people. One of them has Down Syndrome, so I am even more amazed at what humans can achieve. We are a very modern family! It also seemed to make my body stronger in some ways. I was a late bloomer. I did not think about kids until I was 36 or 37!

Photo courtesy of Marlo Donato Love.

Photo courtesy of Marlo Donato Love.

Thank you Marlo Donato Love!  You are a huge inspiration for me.  Despite the fact that you couldn't see, could barely walk and was in major pain you still got up, put on your lipstick, went to work and live your life everyday.  I cannot ask for a better example in perseverance and hard work.

We have MS, MS does not have us.

Buy Awkward Bitch: My Life with MS, it will open your eyes to what really happens to those of us with MS.  I promise you will not regret reading this eye opening book.

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