Mito Marie

Mito Marie
MitoMarie. Yep that's me!

Wednesday, August 17, 2016

Identify Yourself: what makes up your identity?

Does your Job Define You?
Finding your identity through your disability
"Nice to meet you. What do you do?" That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself? This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master's degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, "What do you do?" much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now? 

I've come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then. It took a lot of soul searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself bynot working because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family oriented, I am Me, and nothing can change that. My job and my disability are only parts of my life, they do not define me. Don't let any single part of your life define you, just be you!

#NoExcuses ?????

Over the last few years the popular phrase "No Excuses" has become an overused inspirational quote which has been placed on multiple images of children and adults with disabilities performing various tasks that are meant to inspire and motivate people to never give up. These images have flooded social media, and have been commercialized as inspiration porn for able-bodied people to motivate them to achieve their goals because, let's face it, no matter how bad their situation is, it couldn't be as bad as the poor disabled kid in the photo, right? While I understand the initial intent of the movement of giving disabled individuals a voice to show that they are capable of doing anything that able-bodied individuals can do, I feel we have lost touch with what our goals are, and we have created a situation that has become a hazard for our disabled youth and newly disabled individuals. By saying "No Excuses", we are essentially telling people with disabilities that they have no excuse for being unable to perform a certain task, and this is untrue. Every individual, whether disabled or not, has an excuse for not being able to perform certain tasks at some times or another. We should not place shame on them for being unable to perform those tasks, and by popularizing the phrase "No Excuses" we are essentially condemning those who have excuses for being unable to perform. 

Let's take my situation for example. There are times when I am simply unable to walk any further, hold up my arm or sit in a chair any longer, etc. If I push myself any farther than that I risk severe muscle contractions and seizure-like symptoms which in turn result in days of recovery, or possibly a hospital visit. Now, I could go along with the mindset of "No Excuses" and push on, but that would be damaging my body and my mental health. Is it worth it? I don't think so. Let's consider the high school student who has Cerebral Palsy with severe spasticity in all four limbs. She wants to play in the band so badly, but cannot because she is unable to control her limb movement well enough to manipulate any of the instruments. We tell her there are "No Excuses", but she cannot play an instrument. Is she now a lesser person because she was unable to perform? If there are truly "No Excuses" then we are sending the message that anyone with an excuse is not as capable as someone else, and therefore not as worthy. What does that do to their self esteem? Sometimes there are excuses, and those excuses need to be validated. I wish I would have come to this conclusion when I was a young teenager playing wheelchair basketball. At that time, I bought into the idea of "No Excuses". I pushed my body past it's limit each and every game because I knew that if everyone else could do it I should be able to as well. I caused myself so much pain and suffering because I refused to listen to my body and set my own limits based on what my body required. I was afraid of being judged as weak or unworthy. 

We have newly diagnosed, newly injured, and young children who look to us for guidance on how to live with their disability. We need to teach them that having a disability is not something of which they should be ashamed. We need to teach them to embrace everything that makes them who they are, and to love all aspects of themselves. It is ok to say, "I can't do that". Someone who is paralyzed from a spinal cord injury is going to be unable to climb a flight of stairs no matter how much they wish their legs will move. The "No Excuses" motto is not going to work here, so they are going to need to learn to live around their disability. I think a better motto is one from Megan Bomgaars from the show "Born This Way" who says, "Don't Limit Me". By saying "Don't Limit Me" she is saying, allow me to grow as much as I can, and support me in my choices and decisions in my life. She is accepting her disability and her limitations, but is asking that others not limit her capabilities. I would ask that the world not limit anyone with a disability, and allow each and every person to grow and learn their own limits and capabilities. When we take away the pressure of "No Excuses" we allow individuals with disabilities to freely explore their own capabilities, but also allow them the freedom to say, "I need help" without the stigma of feeling like a failure. 

Wednesday, June 15, 2016

Support Networks

I consider myself to be fairly independent, but I will admit that I rely on my husband a lot. He is the best person in my life, and I owe a lot to him. He gives me strength when I feel like I cannot go any further. He helps me to take care of the house and other tasks that I cannot always handle. He has patience when I am not feeling well. He is strong, steady, and reliable. I know that no matter what he will always be there. Without him, my life would be much harder, and I would be without my best friend.

I think many people with disabilities have a special someone who they rely on for strength, encouragement, and help. What we don't always think about is what we will do if that person is no longer able to help care for us. What happens if they become ill, disabled, or even pass away? We don't like to think about it, but it is something we all need to consider. What will I do if he is suddenly unable to do what he does for me now?
Currently, my husband is recovering from surgery. Luckily, it is a simple surgery that will not cause any major issues, but it got me thinking, what will I do if he is unable to be here one day? You see, my husband has a dangerous job which requires him to put himself in harm's way on a daily basis. When he leaves for work I never know if he will come home at the end of his shift. We aren't in denial about this possibility, and we have talked about it often. We are both mentally prepared to make that sacrifice if necessary, but am I physically prepared? This situation has gotten me thinking. Will I be ready?

We all need a support system. We need a network of people, a community of individuals who can support us when needed. If you don't have that support system then reach out. There are multiple agencies and networks out there to help individuals in need. If you are religious, seek support from your church community or your spiritual advisors. Make new friends through a community club or activity that interests you. It is never too late to make new friends, and these friends can be a significant source of support in times of need in the future. I have learned that once I was able to let my guard down a little it was easier to make true relationships that create a stronger bond. There is a certain type of family that comes with my husband's job, and normally I would be the type of person that would not embrace that. I would typically shy away from others involved in that "family" because I would feel different or unacceptable. Since I have learned to let my guard down I have learned that there are people out there that are sincere, and I have formed some very strong bonds that will last a lifetime. I am confident that if, God forbid, one day my husband does not come home, that there are people in my life that I can rely on. Hopefully, you can gain that comfort and support as well. 

Saturday, June 11, 2016

Parkinson's Patients

There is a lot of research out there right now that is linking mitochondrial dysfunction in Parkinson's Disease. Parkinson's Disease affects millions of people around the world every year. It is critical that we learn how to help these individuals and their loved ones cope with their diagnosis, and learn as much as they can. Anyone affected by Parkinson's Disease, or who has a loved one affected, needs to educate themselves. I recommend the e-book by Lianna Marie described below to help gain the knowledge and tools needed for anyone newly diagnosed with this disease:

Here is everything you really need to know about Parkinson's Disease all in one place...  

"Learn Everything You Need to Know About Diagnosis, Medical Concerns and Treatment, Coping With Your Emotions, Daily Care, Family Life, Caregiving & More"

If you, or someone you love, suffers from Parkinson's disease, then this is going to be one of the most important letters you'll ever read.

Here's why:
   There's a lot of myth and misinformation floating around about this disease.

   Plus, most of the authoritative answers are written in medical language that you need a medical degree to understand.

   You shouldn't need to be confused about Parkinson's simply because you didn't go to medical school.

    You deserve to have all the information you need in one place, written in an easy-to-understand everyday language that won't confuse you. Why should you be frustrated in your attempt to find relevant and important information? (As if having Parkinson's disease or caring for someone with the disease wasn't challenging enough.)

    Well, I'd like to share with you my experience which will help you a lot. So...
"This Is My Story..."

No, I'm Not Faking- Understand the Invisible Disability

Before my disability became so bad that I needed to use crutches or a wheelchair, people never understood. Even now people still don't understand. On a daily basis people see me use a wheelchair and then stand up and walk. They say, "Oh, so it's not permanent?" Yes, it is permanent. My disability is not going away, and it is actually getting worse. What you mean to say is I am not paralyzed. I don't understand why, but it is a common misconception that everyone who uses a wheelchair is bound to that chair 24/7.
--- Not everyone who uses a wheelchair is paralyzed.---
--- Not everyone who has a disability uses a wheelchair.

When I was in my teens and just beginning my journey in this disabled life, so many times I would be called a "Faker" by the able-bodied and disabled community alike. I felt like I was in limbo. I didn't belong anywhere, and nobody could tell me what was going on. Was I crazy? I didn't think so, but when you are told something so often by so many people you begin to think it is true.

It made it very difficult to trust people. I didn't know whether to tell them or not. Do I disclose or hide it? If I hide it and then have a bad day it all comes out in the open really fast. Then I am left with the question of whether or not they will stay. Will they believe me? Will they call me a freak and never want to talk to me again? What should I do? These questions I dealt with on a daily basis for so long. I only let a very small number of people into my life. I put up walls so tall and so strong it took many years of hammering by my husband and my closest friends to break it down. I didn't even let my family in my circle at first. I didn't tell them about all of my struggles, my symptoms, or my flairs for fear of rejection. I feared they wouldn't believe me. I was a teenager, and everyone told me I was young and healthy looking and I shouldn't be feeling that way. But I was. And that continued into adulthood. Only just recently have I begun to learn what is going on in my body, and finally I have been able to gain some peace. I'm not crazy, and the things I was experiencing all those years were real. Only just recently have I begun to let others into my circle. My family and friends are just now learning all there is to know about me. All of those years of anger, self-doubt, shame, fear, sadness, and loneliness take a toll. I have to learn to trust again. As a society we need to stop putting people through this pain.

The truth is, the things you can't see in someone are real, and people need to make sure to be careful about how they approach someone struggling with an invisible disability. Whether it is a physical disability such as MS, Fibromyalgia, Diabetes, etc, or a mental illness or intellectual disability, it is a tough road to go down because to the rest of the world you look "Normal". I still do. (I think). If you took one look at me, not knowing me and my daily struggles, you too would probably think I am faking. But it is real, and those negative words saying we are "faking" or "crazy" or "it's all in our head" can hurt people so terribly. It can cause damage that is sometimes irreparable. We need to help break down walls and get people talking. Don't add bricks to the already solid foundations being laid by the media, society, and even some doctors. Those bricks just make the walls we build around ourselves stronger, and we then become like our disability. We become Invisible.

Embrace the Disability

I have met so many people who have told me they wish they would have just died. I'm talking about those who either become disabled due to an accident or illness sometime later in life. Most individuals born with a disability are able to adapt so much easier, and are able to embrace their disability as an integral part of them at an early age. This doesn't mean they don't have struggles, or have days when they may say, "I wish I could do that", but overall, many children born with disabilities are much more accepting of themselves at an earlier age.

Now, we adults and older children, we are a different story. I will admit, I had my days when I thought, "It would be better if I wasn't here". The thought of not having to go through the daily pain, the stares, the negativity and the loss was appealing. The loss.... It is so difficult to go through the loss. The loss of what once was. The loss of who you once were. The loss of what you thought you would become. The broken dreams, the heartache, the reality that there are going to be things that I may never do again. These are all feelings that can lead someone to the level of despair that would make them say "It would have been better if I had died".

I'm here to tell you that you are wrong!

No matter what your situation is, it has a purpose. You have a purpose. You may be new to this disabled community, and that is okay. We don't judge. We will embrace you and show you the ropes if you just let down your guard, break down those walls, and let us in. I know how hard it is because I was there. I put up those walls and I didn't want anyone to know what I was going through. I wanted to pretend it was all okay. I didn't want to accept it. I felt like a friend of mine does right now who always says, "If I learn how to do that, then I am giving in to this chair". You aren't giving in by embracing the wheelchair, the walker, the cane, the braces, the seeing eye dog, the hearing aids, the prosthetic, the depends, the catheters, the shunts, the implants, the sign language, and on and on. It isn't giving in, or giving up. Learning to use the tools around you to live an active, healthy life is just part of the process of learning to love yourself again. You must learn to love you, and that means every part of you. You can't be embarrassed about who you are and what your needs are. The people who truly love you don't care about the chair, the catheters, the dogs, the hearing aids, the braces, the depends, etc. They don't care, and you shouldn't either. It took me a LONG time to learn that. After I learned to embrace it I realized that I was the only one holding me back because everyone else had already accepted me.

At some point we all need to learn to let go of what we once were, and learn to love who we are now. Embrace all that we are because what we can be is amazing. I have met so many amazing people because of my disability. My disability has opened the door to an entire world that didn't exist for me before. It has made me a better person. I can relate to my relative who I loved dearly who went through similar struggles and did amazing things. I can better understand how he felt on some level, and maybe carry on his legacy of helping others. I have been able to reach out to children who are struggling just as I did, and I have seen them conquer their struggle while learning to embrace their disability.

I have met so many people who have been injured, or have a debilitating disease that began later in life, who have told me if they had a choice to go back to who they were before they wouldn't. They have embraced their new identity, and they have learned that there was a reason for it. They have seen the good things that have come from their experiences, and they don't want to change it. It took some of them years to come to that realization, and some of them went through very dark times before they got there. Unfortunately, being in that place of despair can lead to so many dangerous things such as alcoholism, substance abuse, risky behaviors, depression, and suicide. We need to come together as a community and help each other through that difficult time so the transition isn't so difficult for the next person. These individuals who have learned to embrace their disability are necessarily happy with every aspect of their disability. Everyone has daily struggles that they must overcome regularly when living with a disability, and I am not discounting that. But, those daily struggles make us stronger, and over time you will begin to see the good things that will come from your situation.

I don't know what my future holds. It is scary to think about what my disease could do to me. I don't know how it will progress, but I do know that no matter what, I will embrace it and know there is a reason to live. Each and every one of us has to learn to let go of the person we thought we were going to become, and make a new future for ourselves. It doesn't mean that it is an inferior future to the one for which we were previously on track, it is just a different one. One day, you may just come to realize that your new future is the one that was meant for you all along.

Friday, June 10, 2016

Losing Weight

A lot of people look to quick weight loss tricks or crash diets to manage their weight loss. This works for some, but for the majority of people out there, weight loss is a much deeper problem. Overeating, under-exercising, and overall poor health has become all too common in America. I'm sure we have all been in a place at one time or another where we have thought we could loose at least a few pounds. As someone with a metabolic disorder, eating right is so much more important for me (as my husband so lovingly likes to point out when I just don't feel like eating). I have never really struggled with my weight, but I do struggle with eating enough, so I can understand how people on that end of the "unhealthy" spectrum feel. My husband, on the other hand, has struggled with weight loss his entire life. It has been a real struggle for him for all of the years I have known him, and just recently he has finally found what has worked for him. Of course, what works for him won't work for everyone, but I encourage you all to take a look at his blog if you struggle with weight loss, diet, and motivation as he has for so many years. He may be able to help you gain some insight into what is missing for you to move forward. I have also attached a few links to some potentially helpful, natural, supplements that may be of benefit. Of course, I do not recommend taking any supplements or diet pills without first consulting with your physician.

My Stronger Life Blog by Mike H.

Who Am I? Who Are You? Where Do We Belong?

Hello everyone! My name is Marie, and my question to you is “Who are You?” That was my question to me for so many years. Do you ever question who you are? Where you belong? Will you ever belong? These days it is so easy to get caught up in trying to fit in that we lose ourselves. We lose sight of who we are. When we are different, when we don’t quite fit in, when we are the square peg trying to shove ourselves into that round hole in front of us, it is PAINFUL! The rejection, the loneliness, the longing to be “in”, to be…. “normal”. I’m here to say there is HOPE! You Are Not Alone!

Bullying, Cliques, Harassment, Loneliness, Self-Doubt, Depression,Abuse…. SUICIDE.

These things are real and they are painful, and occur far too often. People say, “It gets better”. We’ve all heard of the “It gets better” movement, and that is great. But sometimes I wonder if we all really believe it. I know there were times when I have thought it will never get better. I still have those moments of weakness. Growing up my family moved so many times due to my father’s work that I had to go to multiple different schools. Dropping everything, leaving all your friends behind and starting over year after year can be hard. Finally, after settling down in a one place long enough to go to the same school for my ENTIRE high school career I thought I had it all! I was making friends, a Track and Cross Country star, running with the Varsity Team as a Freshman! I had it all. Finally, my life was right. Until…. my body stops working right. I can’t explain it, but something is wrong. “But you don’t look sick”, “You’re too young to be feeling that way”, “It’s all in your head”. These are all of the things I heard. From doctors, from family, from friends, from everyone- for years! I thought I was going crazy! Finally, at the age of 32, after 18 years of searching I finally found an answer. Mitochondrial Disease. It doesn’t solve my problem, but at least I know I’m not crazy. Now I know what I can do about it.

For so long I felt like I didn’t belong. I couldn’t keep up with the “Able-bodied” world, but I never quite fit in or was accepted into the “Disabled” world. It really bothered me, and I worried all the time what people would think. It impacted my personal life, my work, my relationships, EVERYTHING. Now that my disability is getting worse, I am learning to let go, and finally, after 33 years on this Earth I have begun to understand who I am. With the support of others we can all get back up. No matter what your personal struggle may be, we all need support. Follow me and we can support each other because ultimately whether you are white, black, male, female, gay, lesbian, straight, bisexual, transgender, asexual, physically disabled, mentally disabled, emotionally disabled, able bodied, living with an invisible disability, or just lost and searching for a friend, we ALL need support and love, and that is why I am here!

Beleive and Let Go!

I’m feeling nervous today.

The pit in my stomach just won’t go away.

Sometimes I think I’m the cowardly lion.

Going through life with no one to rely on.

Everyone against me, I feel so alone.

The pit in my stomach, oh how it’s grown.

It’s taking me over, God what should I do?

Maybe I should trust, I need to rely upon you.

I still have my family, my loved ones, my friends.

I know that they’ll be with me up ’till the end.

No matter what, I will get through this, I know.

I just have to trust, to believe and let go.

Marie Harman  2016

You Have a Disease...

Becoming a teenager is difficult enough, but going through your teenage years while developing a misunderstood, invisible disability that nobody can figure out is a whole different story. Imagine being a healthy, active freshman in high school who has no particular cares in the world, but then one day you begin to have complaints of fatigue, weakness, and pain that nobody understands. Of course everyone's going to think you're crazy. I did. There were times even I thought "Am I making it up? Is it all in my head?" I didn't think so, but nobody would believe me. Have you ever felt that alone? As if nobody would ever really understand how you feel... ever again? Being a teenager is hard... especially when you have mitochondrial disease. Welcome to my blog all about my journey through the struggle of getting diagnosed with Mitochondrial Disease. This journal gives insight into the highs and lows of learning to live with an "invisible disability". Follow me as I take you through the roller coaster of my life, and I hopefully I can help you or your loved one understand how to get through it too.