Perseverance

We were not put on this earth to live a life that travels down an easy road. Traveling down a path always leading in the right direction may be something many of us could only hope and pray to be given. Never feeling pain, never experiencing doubt, never questioning why can seem like a dream come true. Always having the map to properly guide us during our life-long journey seems adequately sublime.

But…

If this was the life we were continuously granted, would we be capable of enduring the travels of a difficult road? During a winding journey of pain, doubt, and questions, would we thoroughly be able to complete our journey with a better understanding of the life around us and ourselves?

Absolutely not.

For a while there, it seemed like everything was falling into place for me. Everything was easy. Any question that I may have had was always answered, and doubts never crossed my mind. I was concerned with my happiness. I was concerned with my well-being. I was concerned, ultimately, with just myself. Though I was caring regarding others, I was undeniably selfish and uncontrollably incapable of being humble.

Sadly, things I had endured previously may have prepared me to overcome slight threats. However, what was about to knock me down was strong enough to overshadow what I originally believed I could endure.

I was not invincible.

In November 2005, I developed what I believed was the flu. Fast forward six and a half weeks and my body tried to give up the fight. Six and a half weeks being void of any nutrition. Six and a half weeks being incapable of functioning as a normal human being.

Six and a half weeks…

45 days…

1,080 hours…

64,800 minutes…

3,888,000 seconds…

Introduced me to a life of perseverance.

I remember the events leading up to the introduction of life-long perseverance like it was yesterday. I was going through my day-to-day routine as any other 20 year old would do: I was constantly wishing Friday would come sooner rather than later, constantly whining about exams or the amount of time it took to study, wondering why coffee could not come as freely as water, hoping that work would become more fulfilling, and always looking for the snooze button every morning seeking five more minutes. Through it all, I was able to pride myself in being optimistic and knowing that, eventually, Friday would be here, graduation was in the not-so-distant future, somehow somewhere, a coffee tower would form allowing coffee to come from a faucet, a newer more fulfilling job would be acquired, and five more minutes would be an afterthought.

These thoughts, however, soon escaped from my mind.

The inability to keep anything in my body was overwhelming. I honestly believed I had developed the flu which infuriated me since I had received my flu shot that year. However, two and a half weeks of constant turmoil of being void of food, water, nutrients swept through my body resulting in an indescribable pain.

Sadly, hearing that things only get worse before getting better is quite accurate.

I lost hearing out of my left ear.

I lost sight out of my left eye.

I began having issues forming coherent sentences and thinking clearly.

I lost feeling from the waist down resulting in dragging my limp, near lifeless body across the floor of my third story apartment.

Thinking I could alleviate whatever was going on with me by taking a hot bath soon became a worthless assumption. After dragging my body from my living room into the bathroom, running the bath water, and pulling myself from the floor, and somehow, managing to throw myself in the bath made me feel like I had completed a lifetime of marathons.

I was terrified.

I was confused.

I felt hopeless.

Alone.

My last memory was looking down at my legs to see the blisters from the heat of the bath water I could not feel.

I do not remember the ambulance ride to the hospital. I do remember, however, talk of a potential overdose, stroke, or seizure but was incapable of answering questions. With numerous MRIs, CT scans, five lumbar punctures, blood work, tears, confusion, hopelessness, and anger, I was told the unthinkable.

“From this day forward, your life is going to change. You may not understand it now, but one day you will know the true reason behind the struggles and adversities you face. Desireé, you have Multiple Sclerosis.”

Emerging from the news, I discovered what had been stolen from me: I couldn’t walk. I couldn’t hear out of my left ear. I could barely see. I couldn’t feel from the bottom of my ribs down to my feet. I couldn’t speak. I couldn’t zip up my jeans. I couldn’t button a shirt. I couldn’t write. I couldn’t hold a utensil. I couldn’t unscrew a bottle cap. I couldn’t remember my birthday, my middle name, where I lived, what I was going to school for.

Everything was gone.

I could, however, feel pain. I could feel the excruciating burning sensation in my extremities. I could hear the siren-like ringing in my ear. I could feel the sensation of being crushed by a boa constrictor if I tried to breathe. I could feel my body trying to give up if I sat up in bed or when I put on a shirt because of the fatigue.

Fast forward a couple of years, add 27 different medications, the strongest steroids one could find, 9 MS relapses, hair loss, the disappearance of self-worth…

Years of struggle.

Years of uncertainty.

Years of doubt.

Years of terror.

Prepared me for something much greater.

There were multiple times when giving up seemed easy. When shutting down seemed like a dream come true. When walking (or rolling) away seemed like a blessing. When closing my eyes and wishing for everything to end seemed normal.

However, I had developed a mindset that consisted of yelling at myself if I couldn't do something then trying until I could eventually do it. Walking, running, talking, forming coherent sentences, giving myself a shot, typing, buttoning shirts, zipping pants, opening a car door, unscrewing bottle caps, taking a shower...everything - even if it took me hours, even if it hurt, even if the frustration was so immense that I sobbed like a child while doing it, I still did it.

There were countless times that praying for my life to be over ended in a screaming match with myself because opening my eyes proved that I was still there. I had finally decided that the life I was given, the struggles I endured, the adversities I faced, and the tears I had cried were preparing me for my ultimate journey. I was being prepared for something much greater than even I could imagine, and I decided to hold on and travel along this journey with my eyes open.

My life-long journey of perseverance, though merely just beginning, has shown me that giving up, shutting down, or walking away may seem easy. I was not given this life to travel along an easy path. I was given this life to show others that what may seem like the end is really an updated map to guide us along the path we are being prepared for and meant to be on.

More importantly, our perseverance radiates to others. It is our job as parents, as leaders, as mentors, as friends, as brothers, as family to take the hand of those who beg to give up and show that giving up may be easy, but the ultimate test is to continue moving forward. Tackling our fears, our doubts, and our questions are never easy. Coming through these fears, doubts, and questions to the other side ultimately proves that we are capable of more than what we originally believed and shows that we are, absolutely, being prepared for something much greater.

Fast forward nearly eight years of the introduction of my life of perseverance:

Now, instead of giving up, instead of allowing something to take over me, instead of constantly questioning why, I use my experiences, my hopes, and my drive to move forward to help others. Now, I find myself better capable of empathizing with others and being the support they desperately need.

I was told I wouldn't walk normally again? No, I walk perfectly, and it is very uncommon for someone to physically see that I am enduring Multiple Sclerosis.

I was told I wouldn't be able to finish school? No, I earned my bachelor's a year and a half ago and am going back for my master's in September.

I was told that I would be forever required to be on medication to sustain myself? No, I've been away from MS therapy for nearly two years and am healthier now than I was over two years ago.

I was told that I wouldn't be able to have a lasting relationship? No, I'm with a man who celebrates my triumphs and picks me up when I fall.

I was told that my life was over? That's just funny.

It’s easy to give up. It’s easy to shut down. It’s easy to walk away.

It’s difficult beyond measure to stand up, fight, and continue moving forward to reach our ultimate goals. Persevering through what seems to be easy will, ultimately, allow others the opportunity to stand up, fight, and move forward by example.

Sebastian and Arlena

Desiree

I question why your words were brought to me during this time of my life. I question why your words weren’t given to me sooner. I question if your knowledge could of prevented my baby girl from succumbing to the turmoil she lives with every day. I keep questioning why and the only answer I have been shown are your words.

Arlena, my beautiful baby girl is 24, was diagnosed with Multiple Sclerosis. I know nothing of MS, I cannot come up with something to say to her unless I shadow her with ignorance. She hurts. She cries. She wishes for the end. She struggles. She’s scared. I cannot give her anything other than a hug, and words telling her that it will be okay.

A nurse at the hospital told me of your blog, and pointed me to the right address to find you. I live west of Dublin, Ireland in a town called Celbridge. I have tried finding local voices to hear regarding MS, but the best thing I have seen and the best words I have read have been yours. I have been able to read everything you have written; sometimes twice. I have seen your picture, and I cannot explain to you the drastic resemblance you have to Arlena, but Arlena has auburn hair, and wears glasses.

I have read your words to her, and she feels like she can be like you. She wants to be like you. She sees your pictures and sees your smile, but she told me that you do not look sick. She told me that she cannot see how you can be just like her but look like a normal healthy girl. She cried and begged me to contact you.

Please, anything you can give. Words of comfort. Words of hope. Anything. Arlena needs it. I need it. Please.

Sebastian

Sebastian:

I cannot explain to you the emotions that hit me while reading your e-mail. Quite honestly, I never knew that those living on other continents would be exposed to my writing. However, I am happy that you found my blog. Primarily, I am happy that my posts have given you the knowledge and comfort you’ve been searching for. I am going to write a letter to Arlena, but please realize that my words are for you both.

Arlena:

You are a strong, courageous, determined young woman. Though you may feel like your life is over, though you may feel like it would be easier to give up, though you may feel like the pain is too much to take, though you may feel inadequate, and though you struggle daily, please know that you can continue to prosper. You can continue to grow. You can continue to lead a happy and fulfilled life. Most importantly, you can accomplish the goals you had set forth prior to your diagnosis.

I know you’re scared. I was scared, too. There are times now that I become terrified at what is happening to me, but that terror only lasts for so long. My best advice for you is to empower yourself with knowledge. The more knowledge you have, the less likely you are to enjoy your blissful ignorance and the more likely you are to knock your MS battle down and prove that you may have MS, but it DOES NOT have you.

You are Arlena. You ultimately will shape your future. You will be surprised at what you can accomplish despite having a horrible disease.

Never give up. Ever. You can do much more than you realize.

I promise.

You have an incredible support system, and that support system will be there to pick you up when you fall and will be there to celebrate your triumphs. I am always here to answer questions or listen to your concerns. Please read my post, "Seven Years." It may shed some light on what I have done to "prove" others wrong - even myself.

Yes, I do look like a healthy, normal girl. Looking at me, it is very hard to realize that I have MS. I have my good days and bad days. My bad days, however, are never spent alone, and your bad days won't be spent alone, either. I have spent numerous years leading a relatively normal life. I promise you that your life is not over. In fact, your life is just getting started, and your character will be reflected with your overall determination and emotion regarding this road block you've been handed.

At the end of the day, you ultimately want to be a normal, healthy young woman with every goal achieved, every desire turned into a reality, and every step moving forward into the right direction. Arlena, you can do everything you wish, and you can turn your desires and dreams into a reality.

Never forget, however, that nothing worth having comes easy.

Hold your head up high, take a deep breath, and know that you have been and are being prepared for something much greater.

I promise…

From the Outside Looking In

Helpless

Couldn’t protect my little sister

Pain

Pray

Relief

Tempered steal

Strong beyond measure

Stronger

Braver

Courageous

Faith

Be informed

Love

Remember what we are living for

Prepare us for something much greater

Research

Scary disease

One person’s disease is not other person’s disease

Struggle

Aware

Ask questions

Part of you [but] does not [en]compass all of you

Worried

Future

Emotional

Horrible disease

Be thankful for every day, hour, minute, and second

Effect

You cannot dwell on what might happen

Not letting it control her

Confused

Uncertain

Do research

Terrified

Family history

Determined

Stop at nothing to reach a goal

Know more

Be patient

Laugh

She rocks

When an individual is given life-altering news, the potential internal backlash could become detrimental to his or her well-being. When diagnosed with MS, the news seems to be immensely devastating because of the lack of information one receives or one may know. Multiple Sclerosis, in and of itself, is a disease that very few people understand. What can happen during a life altered with MS is terribly unpredictable and cause an array of emotions – confusion, terror, fear, anger, sadness, grief – which can seem, from the outside looking in, bleak.

When an individual is diagnosed with MS, the person he or she was before the diagnosis soon disappears. In its place, another life is born, so to speak.

Before my diagnosis, I was a selfish, cruel, and unpredictable human being. Though my family has always been undeniably important in my life, for a couple of years, I was purely concerned with what I wanted. Period. No one else seemed to matter to me, and to a certain extent, during that time of my life, I was okay with that.

Often, when an individual is diagnosed with MS, talks about how he or she changed, how he or she handled the diagnosis, what he or she was/is scared of, etc. are constantly at the forefront of many conversations. What many fail to realize is, although one person is diagnosed with MS, the diagnosis affects more than just that individual. Although MS does not have me, I have MS which means that those I am in constant contact with also must endure the disease, as well. Often, the feelings of those who are indirectly affected with MS seem to be pushed aside. It is in my experience that these “other individuals” have lives that change, as well. They may not have MS. They may not have to directly endure the daily struggles, fears, pain, anxieties of MS, but indirectly, their lives can change as much as the life of their loved one, spouse, significant other, family member, friend, co-worker, neighbor…

It is incredibly important that the voices of those affected with MS are heard. Those affected with MS are more than just the individual with the disease. I believe it to be extremely important to understand how an outsider looking in – friends, family, significant others – feels about how the disease has affected me, what they are scared of concerning MS, and how they feel about the disease in general.

 These are their words.

My brother is a 32 year old husband and father of two. He is immensely intelligent, captivatingly charming, and highly protective of those he loves. Throughout my struggles, he and I have gotten closer. He is, by far, one of my strongest support systems, but I never truly knew how my MS diagnosis changed him nor did I realize how strong he has been for me during my struggles…

1)      How did you feel when you heard the news of Desiree’s MS diagnosis?

Helpless. I have always been very protective of my sister. I can still remember incidents from our childhood of bullies trying to pick on her resulting in my angered retaliation on her behalf. But with this, I for the first time felt like I couldn’t protect my little sister and it was the worst kind of feeling I could have.

2)      What are you scared of concerning MS?

The pain my sister has to endure. The unknown and even mortality have never truly scared me as much as having to stand by and watch my loved ones be in pain. Every time I hear of another issue that causes Desiree pain, I sit and pray that [somehow] I might be able to take her place so that she might find some relief. I still pray that prayer today.

3)      How has Desiree’ changed since being diagnosed with MS?

She has become tempered steal. Not cold, but strong beyond measure. Just like the tempering of a sword, she has come through the fire a stronger and more brave woman. It’s a change that I am thankful everyday she has gone through. I just wish it could have come under better circumstances.

4)      How has the diagnosis changed you?

I have redirected my personal development to become as strong and courageous as my sister. She has become one of my most important role models and a living example of some of the most important characteristics every good person should strive to possess.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

Stay strong. The world [may] seem like it is crashing down around you and that you are losing someone you care deeply for, but the fact is that having faith and courage during times like these can be better therapy than anything modern medicine can develop. The therapy of a good support system is immeasurable and invaluable. Also, be informed. It is absolutely true that knowledge is power. You cannot be a truly supportive person without having the knowledge of what is happening. Finally, don’t forget to love. There is no emotion within the human experience stronger and with more healing power [than] love. Become the medication your loved one so desperately needs.

6)      What is your wish for Desiree’ when continuing her life with MS?

That she never loses her strength, courage, and faith. When we give up or give in, that is when life begins to take a turn for the worse. As long as we remember what we are living for and have faith that the trials we are enduring have been put in place to prepare us for something much greater then we will always succeed.

I recommend reading “Multiple Sclerosis: A Guide for Families” by Rosalind C. Kalb, Ph. D

For privacy purposes, the following name has been changed:

Jane came into my life about four years ago after starting a relationship with my father. Though the prerequisite to have a relationship with my father did not include knowledge of MS, she has taken it upon herself to learn about the disease to try to understand my struggles.

1)      How did you feel when you heard the news of Desiree’s MS diagnosis?

I am not sure when your dad actually told me that you had been diagnosed with MS. Since I was a special ed[ucation] teacher, I wanted to know more about MS and looked into it. I did research it more when you came to stay with us for those three weeks.

2)      What are you scared of concerning MS?

MS is a scary disease, but I have found out that one person’s disease is not another person’s disease. I hope that you will continue to stay where you are in it, but I also realize that is not going to happen.

3)      How has Desiree’ changed since being diagnosed with MS?

I really cannot comment about since being diagnosed, but can comment on the fact that in the last few years I think you have changed. I see that you struggle some days and hate that. I wish that there was something I could do. Somehow take it away, but reality says that I cannot. I do know that you are happier than what you have been and I think Chris is good for you. When Desiree is happy and stress free she is well.

4)      How has the diagnosis changed you?

I hope I am more aware of your cues when you need to be left alone to chill, when you need to talk, or when you just need someone there to listen.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

I have told you as well as others to research MS, to ask questions either of Desiree or someone that also has the disease. Get that persons perspective of their disease.

6)      What is your wish for Desiree’ when continuing her life with MS?

I wish you to be happy, to fulfill your life as you wish. MS is unfortunately apart of you it does not compass all of you but it does.

I recommend reading “Awkward Bitch: My Life with MS” by Marlo Donato Parmelee.

I have known my sister-in-law, Eden, for over a decade. She came into my life as my brother’s girlfriend and then as his wife. My relationship with her has given me the strength to question everything and find ways to improve the overall quality of my life. She is a strong, determined, outspoken, and fierce woman. The way she constantly makes me laugh is one of the numerous reasons why I love her as much as I do. However, she is an incredible wife to my brother, absolutely amazing mother to my niece and nephew, and my constant voice of reason when I need one. I never knew how my diagnosis of MS affected her as much as it has and am pleasantly surprised of her devotion to understanding this disease.

1)      How did you feel when you heard the news of Desiree's MS diagnosis?

I was confused. I thought she was one of Jerry's Kids, but then I realized that was MD, not MS. Then I was uncertain about what was going on. I had to ask a lot of questions and do some research.

2)       What are you scared of concerning MS?

I'm terrified that Desiree' will be on some kind of trial medication that will mutate her into a superhuman that feels no pain and shoots spoons through her hands. But seriously, looking at the family history of MS, I am afraid that one of my kids will develop MS.

3)      How has Desiree' changed since being diagnosed with MS?

She's more determined. Well, determined is an understatement. She will stop at nothing to reach a goal that she has set for herself.

4)      How has the diagnosis changed you?

I know more about MS.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

Be patient. Learn. Support. LAUGH.

6)       What is your wish for Desiree when continuing her life with MS?

That she rocks it like a hurricane.

I recommend reading “Multiple Sclerosis Fact Book” by Richard Lechtenberg, M.D.

I met Chris at work. In the beginning, I was merely captivated with his genuine sincerity. I had no intentions of trying to start a relationship due to an ended marriage that contained nothing but abuse, fear, and turmoil. However, in a short amount of time, I quickly learned that Chris was unlike any other man I had ever known. His arms are like a shield for me. I’m protected and unconditionally loved. When I explained to Chris the MS, I could tell that although he was being supportive and understanding, he was scared and confused. He has seen me at my best, celebrates my triumphs, has seen me in a shattered physical state and picks me up when I fall. Before Chris, I never really understood what it meant to be loved unconditionally. I know that with him, my aspirations will become a reality, and I know that our two lives have become one.

1)      How did you feel when you heard the news of Desiree's MS diagnosis?

When Desiree told me that she had MS, I was first scared and even more so worried for her and also us, as we were just starting our life together. Wondering what would this mean for our relationship and our future together. At the time I had next to no knowledge about MS and how it was or could affect Desiree. It was very emotional to hear everything that she has been through, overcome, and was currently dealing with on a daily basis. All I wanted to do is hold her, and make everything better, if I only could.

2)      What are you scared of concerning MS?

I am scared that this horrible disease will take away Desiree from me as I know her, however I try not to think of it in this matter and be thankful for every day, hour, minute, and second that we get to spend together doing things that make us happy.

3)      How has Desiree’ changed since being diagnosed with MS?

He is unaware of how I was before the diagnosis. Although I have explained to him the person I used to be, he continually focuses on the person I am today.

4)      How has the diagnosis changed you?

Since learning that Desiree has MS, I would say that I look at life somewhat differently. I try to be more aware of my surroundings, activities and the risks I take doing so, not only knowing how the outcome would affect myself but the woman I love.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

That you cannot dwell on what might happen, but to enjoy today and be thankful that you have today.

6)      What is your wish for Desiree when continuing her life with MS?

That she is able to continue to pursue her education, career path, and starting a family. All while she is controlling this horrible disease and not letting it control her.

I recommend reading “Me and My Shadow: Learning to Live with Multiple Sclerosis” by Carole MacKie and Sue Brattle

Through it all, I now truly understand how MS has affected those I care about more than anything. My struggles, my fear, my pain – everything – inevitably translates to be the exact same to those who care about me. 

The books mentioned will not only help but will greatly inform those who read them. Yes, MS is an unpredictable disease that causes a terrifying world. However, with more knowledge and support, being able to endure and overcome the daily obstacles will become less difficult. We are stronger, more independent, immensely driven and capable human beings. Having MS will never take those qualities away. Ever.

I promise.

MS Hug - Strength through Tears

The most common issues with MS are noted as pain and fatigue. On Sunday around 9:30 in the evening, the pain and fatigue finally reared its ugly head and became unbearable.

Through tears, I cried out, "I'm tired of being strong. I can't be strong anymore. One person can only take so much pain. I hurt all the time, and I hate it. You know, me being strong is just an act. If I cry all the time because I hurt, others will see that I'm weak. I can't do that - I have to be strong. I have to."

The pain I was experiencing was particularly centered around the small of my back. However, throughout the day, the pain went up around my rib cage and down around my hips. The sensation of being crushed really doesn't give justice to the amount of pain I was experiencing. After an hour of an emotional breakdown, I finally calmed down after hearing my boyfriend speak so calmly...

"You don't have to be strong around me. If you want to cry then cry. I'm right here, and I'd take the pain from you if I could."

His words still radiate through me. The calmness went through me like waves. It was incredible.

After some research, I discovered that I was experiencing an MS Hug.

An MS Hug is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called "parethesia" which refers to any abnormal sensation. The sensation itself is the result of tiny muscles between each rib going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement.

Additionally, an MS Hug can feel different for different people and can feel different for the same person on different times and/or days. The pain can be as low as the waist or as high as the chest; is focused on one small area or go all the way around the torso; is worse than fatigue or stress; is presented in waves lasting seconds, minutes, or hours or can be steady for longer periods of time; is described as a sharp pain, dull pain, burning pain, tickling, tingling, crushing, constricting, and/or pressure.

Fun, right?

Absolutely not.

Though I did some research on what I was experiencing, the real issue here is my unwillingness to show that I was in pain - or in my mind, weak. Just because I try to remain strong to be a strong, driving force to others who are experiencing the same issues does not mean that I cannot, for any reason, have moments where the pain becomes too much. It's completely normal to show pain, it's completely normal to cry. If I didn't show these specific feelings/emotions, quite honestly, I feel I would be void of common human emotion. It does not mean I am weak if I cry nor does it mean that you're weak if you cry. You are, in fact, much stronger if you can show your feelings yet move past the pain, frustration, and fear so you can come out much more emotionally stronger than you were before.

Remember, your strength can show through your tears.

Awkward Bitch: My Life with MS

On Christmas Eve, my boyfriend's incredible parents gave me a book which I have been dying to read for quite sometime. The book was written by Marlo Donato Parmelee, and it chronicles her journey with MS.

Reading the book made me incredibly emotional because I was finally able to read about another individual who had almost the exact same feeling(s) as I have/had. It gives me hope knowing that, when I put pen to paper and write about my MS journey, others will be able to relate in the same way.

It is an incredibly easy read, and I highly recommend those enduring MS or those caring for an individual with MS read this book.

I copied down some quotes from the book that have immensely useful information and sound identical to what I have been saying for years (be advised that some of the quotes contain vulgar and/or offensive language):

"I left the clinic with two feelings: relief for knowing what I had, and an underlying grief because things would never be the same. I was in better shape than my husband and cousin, though. They walked out with heavy hearts. They kept telling me how brave I was. This was not bravery. This was just life."

"I felt that whatever was going to happen was now set in stone. There was nothing anyone could do."

"I felt like there was a reason I got this stupid disease, and I was going to find that reason. I was not going to let this stop me from living my life the way I wanted to live it. I was not going to let this stop me from being my glamorous, red-lipped, musica-fashionista self. Slamming my glass down after another swig, I declared, I am not letting this stop me. I am going to leave my mark on this city if it fucking kills me!”

"Believe me, I am not brave. I said. Firefighters are brave; people who have choices are brave. I don’t have a choice, do I? I can’t pretend I don’t have it. I have to get on with things."

"Our nerves are like a system of wires throughout the body. They are made up of nerve cells that are connected by fibers called axons. Axons send nerve impulses, telling the body to pick up a glass, for example. Myelin is the layer of fatty lipids and proteins that protects these axons like insulation. In MS, the immune system attacks the myelin, causing this insulation to become inflamed. That inflammation can either heal or leave scars. When these scars occur, there is a break in the nerve impulses. For example, the message of picking up a glass gets slowed down or faulted. What happens? You break half your glass set, like me."

"If you keep a positive attitude, you will not get sicker. Tell yourself what I told myself: I will never be in a wheelchair."

"Some people cannot deal with illness. This doesn’t make them bad people; it’s just the way they are."

"From the days of my diagnosis, I did not want anyone to feel pity for me. I felt that I had a lot going for me and that a stupid little disease like MS was not going to make me any less magnificent. It was not going to make me less talented, less creative, less intelligent, or less anything. Fuck that, I thought. And fuck anyone who pities me. I still think that, by the way."

"I began to feel a loneliness that I had never quite felt before. I had the support of William, family, and friends like Laura and Colin, but essentially, I was alone with a disease in my brain. Knowing that there is a disease trying to debilitate your body is a lonely thing. No matter who supports you, the ultimate person to help you is yourself.

"I am not a particularly religious person, though I am a spiritual one. I believe that God helps those who help themselves, because what God is, we are extensions of him. I don’t believe in sitting around, waiting for miracles. I wholeheartedly believe in miracles, but I believe that each of us has the power to make a miracle happen ourselves."

"In all the weeks of learning about other people, I was learning about the most important person of all: myself. I was just starting to learn that I had an inner strength that up until then, I never needed to discover. I was also learning that I had dark places inside me…"

"I tried to stretch myself too thing. I wanted to overcompensate for having an illness. I wanted to be Supergirl, no matter what the cost. I thought that if I made myself run a high speed, the MS would not be able to keep up."

"…it began with a few nights of bad sleep. I would get into bed, and just as my body started to relax, I would feel a tingle in the bottom of my foot. The tingle was a tightening of the muscle. It would not let up and kept me up for most of the night. Each night the feeling got a little tighter. Then without warning, the situation worsened. It was probably the fourth night when the tingle in my foot started to creep up the back of my leg to the knee. The tingling became a prelude for a pain that became my nightly torturous companion. The tightening had become a feeling of ripping and burning. I felt like my leg muscle was being ripped apart and twisted. After a few more nights, the pains began to sneak into the other foot and leg as well. In the States, the term ‘charley horse’ is used when your foot cramps underneath it and up into the back of your leg. This was like a double charley horse orchestrated by the devil himself."

"Killing myself started to look like a pleasant escape from the hell I was in."

"I was leaning over to zip up my jeans, when a weird thing happened. As I leaned my head forward (chin towards chest), I got a feeling of a zap in my foot. It was not a bad feeling. It was a beautiful jolt of electricity. It tickled, actually. It was the first time I had felt something good in a while…it’s called L’Hermitte’s sign…it’s named after the man who discovered it. It is common in MS. An electrical impulse goes down the spine and possibly the legs when the person brings his or her head forward. Why does this happen? I asked…it says that it’s from lesions on the spinal cord."

"Don’t tell me everything is going to be OK! I would roar. I am in so much fucking pain! None of the painkillers have helped me! I want to jump off the fucking roof! Do you understand? I want to kill myself. I want to die. I want to fucking die…Why the hell does it have to be so hard? I am so tired. I have never been so tired…"

"With this disease, if you give it an inch, it will park a truck in it."

"Then I began an assault of blaring screams at God. 'What the fuck do you want from me? Do you want me to learn something from all of this suffering? All I’ve learn[ed] is that suffering sucks!'"

"I could not see the color red properly. Bright reds looked dark red and slightly brown. I hadn’t realized it until the exam when the doctor showed me a red object and asked me to describe the color. This was happening because I had optic neuritis, a swelling of the optic nerve the runs behind the eyeball."

"You will pull yourself together. You will pick your heart up off the floor, put on your red lipstick, and get moving."

"…relapsing-remitting MS is like being in a bad relationship. Sometimes everything is great, and life is fantastic. Other times, you are treated like crap and wonder how you ever got there. You cry every time, even though essentially you are crying over the same thing. It will never get better, and your friends keep telling you that you are beating a dead horse. It’s a cruel, vicious cycle. Unlike a bad relationship, though, you cannot get away."

"The problem with my scenario was that my bosses continued acting like they were wondering why I was still sick. So many times, one of them would say to me things like, “Shouldn’t you be feeling well by now?” It became increasingly upsetting."

"If I have a disability then I am going to make use out of it. I am going to make lemonade out of these lemons."

"I began to realize how many challenges there are for those people with any disability, not just MS."

"Look at us (people with Multiple Sclerosis). Look what we can do. We are fucking unstoppable."

"Getting MS had given me the opportunity to become more sensitive to other people’s needs. It opened my eyes further and gave me more purpose."

"Through trial and error, I found taking primrose oil to be greatly beneficial to me. I also started eating better. I ate more oily fish. I tried to eat less cheese. OK, I can’t stop eating cheese every day! I love it!"

"I also started to rest when I felt tired. I was realizing that like infections, stress was a trigger for my relapses. Every single time I had a relapse, I was either completely stressed out, had an infection, or both."

"When you hear the word disability, remember to focus on the ability part! You can do anything you put your mind to! Don’t let anything or anyone stop you!"

"I sighed. I was a changed person. Pain had changed me. Experience had changed me. Multiple Sclerosis had changed me. I was not the same girl I used to be."

"I am in fact, better than the girl I used to be. I am stronger and better in every way."

"I would not change my life for anything. I have been through too much. I have learned too much. Now I know what I am made of. I am fabulous, [] gorgeous, [] tenacious…"

 

 

 

 

Hope

Often, I find myself scouring medical articles for a glimpse into what is being done within MS research. Today, I found an interesting combination of ideas and theories that I've yet to explore previously. Though the idea is rather far-fetched, it's interesting to think about the possibilities of a cure for an incurable disease. Though I do not readily support these ideas, I do find them to be interesting, and I do see the purpose in its content.

Please keep an open mind when reading and watching the below information. You may find yourself sitting in silence as I did after I consumed its information.

Article on Possible MS Cure

Video on Possible MS Cure

Is it You?

You do not know me, but I feel a strong connection with you after reading your posts of encouragement, bravery and self-discovery. I was diagnosed with MS ten years ago and feel ashamed for my actions, thoughts, behavior, and attitude since learning of the diagnosis. You being a young woman of 27 who was diagnosed in the prime of her life at 20 only to come out a stronger person having been diagnosed still floors me. I wish I could say that I am like you and am a stronger person after going through what I have. I'm not. In your post, "Seven Years," you mentioned that you were selfish before the diagnosis, that you believed your life to be over, that you were okay with the disease running its course and taking over your body. You've mentioned in previous posts that you were and still are scared. You've mentioned that you felt alone and still have days where you have feelings of loneliness. How have you been able to get through something so horrible only to become a better person for having gone through it? How can you be so positive when you have a disease that will shorten your life, that limits your overall joy in life, that prevents you from doing what you love, that shadows you with fear daily?

I am at a point in my life (43) where I feel that no one understands, no one cares, and that I will get worse. I pray for the day that I can have the same outlook that you have and begin to accept what I cannot change and help others like you are. Until that day comes, I feel as though I'm trapped in a world of pain, fear, and the dependency of medication.

I read your posts as soon as they are published. The information you've shared has really allowed me to question the person I am today so I can become a better person for myself tomorrow. Your words do not go unnoticed and your actions show how beautiful you really are. We are in this fight together. Thank you for fighting for me.

Yours Truly,

Louise - Washington

***

When I first developed the idea of writing this blog, I did it purely to relay the information I have gathered and learned about over the last five or six years to those who need it. When I was diagnosed, I felt alone. I had questions, but I could never really get them answered. I'm writing this to answer as many questions as I can about what I know, and along the way, I hope we can all learn more about a disease that can be extremely devastating.

Louise, though we have never met, and though I can only reach you through the words I write, never forget that there is a very unique bond between you and I: through our diagnosis, our struggles, our fears, and our triumphs, we can relate to one another on a level that many cannot comprehend. When one has a life changing event occur in his or her life, the way the event is handled depends on the process of grieving and the individual. It is not uncommon to have negative thoughts, behaviors, actions, or attitudes when enduring what you are. In fact, it is very normal.

The fact of the matter is that I am scared every single day. However, just because I am scared does not mean that I can dwell on something that has not happened yet. Why live a life dwelling on something that has already happened in a negative way? Why live my life dwelling on something I cannot change? It is no ones fault that I am sick; it's not my fault, either. I have accepted what I cannot change because that is the type of person I am. Most importantly, however, I am living my life in a way that allows others to realize that a life is not over when something such as MS comes creeping in. Although I cannot change what has happened, I can determine how I handle the situation(s).

I started playing the violin when I was in first grade. I'm rather good at it, and it is something I thoroughly love to do. However, the dexterity in my hands have lessened since the diagnosis resulting in the inability to do something I love. This does not mean that the music is not still inside me. This does not mean that I don't still understand the connection I feel with the music that I used to play. This does not mean that I have given up classical music forever. This simply means that I have to find other ways to do something I love. I can still hum the chords in my head while I'm writing music. I can still pick up my violin and hear the rich sound radiate from its core. Even though I cannot continue doing what I love doesn't mean that I no longer receive joy from it.

I remain positive for myself and others. If I allow myself to dwell on the negative, what does that say to my family, my friends, to my growing niece and nephew? I do not, under any circumstance, allow myself to give up nor will I allow that of those I love. Regardless of the adversities we face, there is always something that could eventually stand in our way to prevent our dreams. It shows our character to move forward past the road blocks to achieve something far greater than we originally imagined.

As I have said before, I am scared every single day of my life. I'm scared that I'll wake up unable to walk. I'm afraid that I'll close my eyes only to open them without the ability to see. I'm afraid that I won't be able to feel the small kisses of my niece or nephew or feel the arms of my boyfriend wrapped around me. I'm afraid that my years of education and my degree will be of no use to me if my cognitive abilities fail me. However, I do not dwell on something that has not happened. I can't - you can't. The fear we possess can feed and radiate ten fold if we allow it. This fear is what ultimately takes over us, and we are much better than that.

All I can say to you is for you to live your life, love what you do, and do not be afraid of something that has not happened. Make 2013 your year to become the woman you want to be despite having MS. Always remember that YOU have MS - MS does NOT have you. You control your emotions. You control your reactions. You control your behavior. You control what you can and cannot do.

Louise, it took me many years to get to where I am at today. I still have my moments of being paralyzed by fear and worry, but the support I have is something indescribable. I know I can do anything I set my mind to, and so can you. You are stronger than you believe, and when you truly allow that fight to radiate from your being, you'll be able to conquer the biggest obstacles and/or fears.

I am here with you fighting for the same things as you are. How you choose to win your battle is purely up to you, but I have the utmost faith that you can and will come through this a much better, much stronger, and more courageous woman than before.