Sunday, April 7, 2013

March 2013 - Mary Louie

Mary Louie
Kayleen DeSouza’s
“Person of the Month” March 2013

“Never throughout history has a man who lived a life of ease left a name worth remembering.”

My reason for creating a  “Person of the Month”

I have been a licensed cosmetologist for almost four years now.  I have worked at four different salons in this time.  Some would call me a “Gypsy”.  I’ll take it.  I’m okay with that.  Seriously though, from each one of my experiences, I have gained knowledge and I have learned.  Literally.  From every person.  I truly believe that we are all human, but rarely do we see each other as humans at our best and at all times.  We all have our faults.  We all have our talents.  

Fortunately I haven’t, but I have almost given up on my career choice a few times in these past few years.  However, I love my clients (aka real “people”).  I will stick through it all.  I make my job my choice of work because I love people.  And I love the ones who I lay in bed at night thinking about how they are some of the strongest people I have ever met, while I fall asleep at night.  I am so lucky/blessed enough to know that I finally have the confidence to do a decent job of helping people look and feel good.  I have an awesome job and have amazing opportunities with what life has given me.  I can only hope I make people leave feeling better, than when they walked in.  I can only do the best that I can, and I know I try each and every day.  

I always played with hair and makeup as a kid, but I just never saw myself having a career in this field.  So basically what I’m saying is that, my job, is not enough for me, to not give back.  I want to give back in one way or another.  A smile, a helping hand, whatever I can...  Ie: PAY IT FORWARD. Personally, I feel obligated to give something back to the amazing people I come into contact with day after day.  (This includes my family as well)... whether it is to go not only indulge in conversation with some amazing people and make them look “perty” or “handsome”, but really take back with me, a sense of them - as a human being, THEIR struggles, their stories, and their lives.  

It feels unfair to me to accept money from people that I have learned valuable life lessons from.  Each and every one.  I am lucky enough to be somewhat naturally talented at my position as a cosmetologist (So I’ve been told).  I haven't even given them something back that lets them know how much I appreciate THEM (unless its a discount or what not)!  So with this:  I am not just saying.  I am telling that I am feeling, and I am trying to understand an amazing person, and their life, and take the goodness with me that I felt and share with others and hopefully good will come from not-so-good cards some people have been dealt with.  I want you to know that I am genuine.  I expect nothing, yet I want to give everything, I possibly can to make other’s lives better.  

Why I chose Mary to be my first Person of the month

I chose Mary, not only because I love getting my hands ahold of her hair, but her upbeat personality, realism, and focus of positive things in life is... simply put - awesome.  Her kids are pretty cute, too!  She is surrounded with a love bubble.  If you spoke to her, you would know what I mean.  In the winter months she comes in with a smile, and I bring her warm water.  Not tea.  Not coffee.  Just warm water.  It’s kind of a Chinese thing I believe which would make sense because her husband is Chinese.  She has a pretty awesome sense of culture, which I appreciate.  Mary is herself.  She is a person who is completely comfortable in their own skin, and will make you feel like you can be, too.  At first glance, you would never know about the silent struggles she has had to deal with.  Or even in conversation.  It’s when you notice her bright red leg braces, and you just ask her about them.  At least thats what I did.  She just got her leopard
print ones!  Through my visits with her over the past year, she has left me with a sense of appreciation for all the things in life that we take for granted.  Our bodies, our brains, our organs, our families, food, shelter, water, our site, our sense of touch, taste, smell.  So many things.  She doesn’t even act like anything is hard in her life.  I know that I would find myself loathing in self-pity at times, if she hadn’t walked into my life.  I can’t deny sending her away each time the chance for me to stand behind her and represent her as a human being, who hasn't even asked for any help.  I just want to.  Just like I want her to be my person of the month, and share her story with others.      

Questions for Mary that other’s will want to know.  

How did you “get” CMT?
I was born with it! I inherited the disease from my mother who got it from her mom.

How did you find out you had it1? Or have you always known since you can remember?  We want to know more!
As long as I can remember I knew that there was a 50/50 chance of having it. But I didn't show any major signs or symptoms until I was 21 and couldn't stand on my toes to reach something on a high shelf. I did always walk a little "funny" :)

Let’s get to the “nitty gritty”:  Is CMT a death sentence? Is it terminal?  (I’m being frank here for people that don’t want to ask directly.)  
CMT is not terminal and will shorten my life in anyway. It is a degenerative neuropathy which means it works its way in my from extremities.  In my case its only in my legs and in the past decade I have only lost feeling up to just above my ankles. Because of this I have balance issues which cause falls and my inability to ever wear high heels again.

What can you expect in the future?
I currently wear leg braces (AFOs) on both legs and use an arm crutch. In the future I will become more limited and eventually be in a wheelchair.

What do you do to help yourself?
I currently go to physical therapy once a week to work on my balance issues. I also try to stay active! I have walk 2 marathons and hope to walk a third in the next couple years. I also have been trying to get back into swimming.

What kind of support system do you have?
I have a very loving and supportive family and group of friends. The Charcot-Marie Tooth Association is based in Pennsylvania and Hereditary Neuropathy Foundation in New York are amazing resources.

Is there a cure, and if not, what can I/we do to help find one for you and others who suffer (although I shouldn't say that / because you are SOOOo not the “suffer” type)?  
There is currently no "cure" or medication I can take for Charcot-Marie Tooth. But there is research going on all over the country. The CMTA is taking donations for their STAR research program. Getting the word out about CMT is one the best thing for people to do. The disease affects 1 in 2500 people and most people have never heard of it.
What about surgery?
Some people with CMT have surgery to correct structural issues in their legs, arms, hands and feet. I am lucky to not have those issues and will not need surgery.

What about bracing?  (I LOVE your reds ones!  And your new leopard print... can't wait until you get them!!)
I wear braces to correct my foot drop which is a symptom of CMT. I go with something bold so people people ask and I can teach them about CMT.

Can you live a quality life with CMT?
I think it depends on your outlook! I have a great family, a great job and an amazing life. I don't let the disease control what I do. But I do understand that some people live with more difficulty with I do but still have a cheery outlook.
What about having children?  
I have 2 beautiful and awesome children and I live everyday knowing they both have a 50/50 chance of having it.

Can you stop my CMT from getting worse?
There is nothing currently known that will stop the progression of the disease but I am hoping I will live to see a cure!

What happens that makes it worse!?
There are a bunch of medicines and also alcohol that are neurotoxins that can make it worse. But on a day to day basis over exerting myself physically takes its toll and usually ends up with me falling. But I am getting wicked good at falling.

Is there a doctor near you, who your trust, about CMT?
I have always seen Dr. Richard Sullivan at Maine Health Neuro. He is very nice, knowledgeable and well respected.

Is there anything else at all that you can tell us about CMT, or that you would like to?  Let loose, guuuurrrl!!
I just want people to learn more and tell 2 friends about it! I also am super open to people contacting me if they want more info. Also that you have no idea what is going on with someone unless you ask!

Last, but not least, how did you get to be so awesome?! Seriously.
I have a great family that has always been super positive about what we have going on. Also I can't dwell on it I just have to figure out how to live with it! Also there are people out there who were dealt with worse hands than me.

Mary - you’re awesome... like not just because of the not-so-smooth sea you’ve been sailing, but you’re also just a pretty cool human being, who I am lucky enough to have met, done some sweet hair on, and had had some good times with ya :)