Meet Lisa D.: My Life in the Shadows with Myasthenia Gravis

My name is Lisa. I am a 3x cancer survivor thriver, and I am living with the rare autoimmune disease Myasthenia Gravis.

I am a mother, a wife and an Integrative Health Consultant.  I am happy, and I feel joy every day of my life. This is my story and #myinvisiblefight.

Since my 20’s I have lived a life within a life. I was diagnosed with cancer at 26-years-old as I was preparing to get married.  I wasn’t going to let this random rare form of cancer, in a gland I didn’t know I had until now, slow me down. I just needed a little open chest surgery to get the baseball sized tumor out from under my heart, and I’d be done with it.

Lying on the operating table, I stopped the surgeon before he began the countdown for sedation and said,

“Make sure you don’t cut up very high. I am wearing a boat neck wedding dress.”  

After a successful surgery, my doctor apologized that my scar was longer than expected because he needed to get the saw higher to crack my chest fully open.

Determined to live life as normal as possible I continued with my wedding plans (in my new, high necked dress) until I got another call…I hate getting calls from doctors.  He informed me that I also had non-hodgkins lymphoma and would need chemotherapy and radiation to treat it. Since chemo conflicted with our wedding date, my fiancé and I scrapped the big wedding plans and eloped, intent on beating cancer together.

I didn’t identify as a cancer “survivor” because I’d never accepted the fact that I’d ever had it.  I never wanted to be the cancer girl.  But a few years later I was diagnosed with Thyroid cancer.  Fortunately, that was an easy one.  They simply needed to pull that baby out and throw it on the pile with all of my other dysfunctional parts. With a purse full of pills to take on a daily basis, I could still lead a normal life.

Then it finally happened.  My shadow world crept over me like a heavy blanket and all I could see was blackness. 

 I woke up one day with double vision but wrote it off as some funky headache.  Then came the weakness on one side, and unyielding fatigue.  Then the stumbling.  More weakness came, until I couldn’t hold my head up anymore and was having trouble speaking. It was terrifying.  A week later I was sitting in a specialist’s chair being told I had a rare disease I couldn’t pronounce; Myasthenia Gravis.

Armed with even more drugs, I was still determined to live my life just like everyone else. But this time, I couldnt hide my shadow life anymore. I couldn’t joke away my medical issues, or tell everyone I was fine when I really wasn’t, or play with my kids like we used to. I had to figure out a way for these two lives- MY LIFE and my chronic illness life- to live in harmony in my increasingly frail body.  Worst of all, I had to accept my new normal and the shame I felt for getting sick again.

I went from being a marathon runner to rolling around in a wheelchair less than two years.  Because I couldn’t swallow, I’d become accustomed to eating cheeseburger shakes- legitimately a cheeseburger stuffed in a blender and served in a cup with a straw. Yum! Yeah, no! (After that trauma, I have since adopted a vegan diet.)

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Lisa and family, goofing around and being awesome!

I was discouraged but had a family that I needed to be strong for. I had 3 young kids and wanted to give them as normal a life as possible.  I worked really hard and as I got stronger, I realized I was not just doing it for them, I was doing it for me. I decided to come out of the illness closet.  It was a slow process that didn’t happen overnight. Finally, my shadow world became less dark as glimmers of light shined though, and got brighter.  Then I got brighter.

Accepting my disease helped me learn and grow from it. I think it helped my family become stronger and more empathetic too.  My kids’ understanding and expression of compassion for others is beautiful.  I am so proud of each of them.

It’s funny that an illness causing severe muscle weakness is what made me stronger.  It also forced me to be the most authentic version of myself possible.

I no longer had to fake being normal; I simply had to redefine it.

I see the world differently now. I remember one evening when I was first coming out of the illness closet and went to get takeout food with my husband.  Sitting in the car I watched people passing, and I was just so grateful for them. I wondered who they were, what they were like and what invisible fights they may be fighting.  I wished that everyone could see how amazing life is.

#MyInvisibleFight is ongoing, but it’s a lot more relaxed because I don’t have to keep my smile shining when I secretly want to pass out.  #MyInvisibleFight has also enabled me to relate to others on a more intimate level. And for that, I am truly grateful.

Lisa Bio PicEditor’s Note:

Patient Worthy welcomes Lisa to our family. She is a therapist who is passionate about healing from all perspectives. Through traditional and complimentary modalities she learned how to recreate herself from the inside, out. Lisa currently lives in Southern California with her husband and three children. Stay tuned for Contributions and Posts from her soon!

In support of Invisible Illness Awareness Week 2015, Lisa has decided to “pay it forward”. Her first book, Wellness Warrior – Fighting for Life in Fabulous Shoes was released today on Amazon.com and the Kindle version is now available for for a very limited time during IIA week for only $.99 cents!

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