Surviving

I often find myself struggling to keep up with my blog due to time constraints. It never fails that when I write something, I am given the opportunity to learn more about my readers which makes finding the time to write so important to me. 

In less than 24 hours, I received 17 different e-mails from readers around the world asking me questions, telling me their story, and explaining that seeing a post I have written feels like Christmas. Though I want to answer every single e-mail through this blog, I want to share an e-mail sent to me early this morning from a woman in South Dakota. Through her words, I am able to understand MS more.

Desiree,

I have noticed that you haven't written much in your journal lately. When I was notified of your post, I dropped what I was doing to read your words. You amaze me, but you make me angry.

Your story has captured many, I am sure. Your words have a way of magnifying an illness  people do not know about or understand. Your determination is flawless (to me), and I respect that you continue pushing yourself past what you think your limits are.

Do you feel that your words could cause envy and jealousy? Do you stop and wonder that by sharing your thoughts you are hurting another persons core because they can't do what you do? Do you see yourself as a billboard MS "survivor"? Do you think it is fair to share so many of your stories to those who do not have the strength to do what you do? Do you think it is right to make people think that what you can do, they can do? What type of person do you think you are within the MS community if you seem to not be able to relate to everyone with this MonSter? 

Let me assure you, you do cause envy and jealousy. Your thoughts cause those of us with MS to wonder why we cannot have it as easy as you do. You should not always say that you can do things and be things and continue on with what you are doing because that creates feelings of insignificance to those of us who cannot do what you do. It is not fair that you share what you have done and what you are doing to a world that you really do not seem to know anything about. You cannot relate to every person with this disease, and you should be ashamed of yourself for sharing your stories since most of us cannot do what you are doing. 

Though I respect your writing and am consumed by your thoughts, I feel that you should stop this journal and make your thoughts private. No one wants to read what you are thinking and doing and becoming since they cannot do the same. 

Regards,

Janice

After reading this e-mail about four or five times, I was shattered. Am I sharing too much or being too open about my MS journey? I do not think so at all. After collecting my thoughts and emotions, my response to Janice is one I believe all of my readers should understand:

Good Morning, Janice:

I appreciate the honesty within your e-mail. I cannot explain the joy I feel knowing that my stories and words are read by so many. In response to your inquiries...

1) Do you feel that your words could cause envy and jealousy?

Unfortunately, I know that my words/stories could cause envy and jealousy to individuals within the MS community (patients, caretakers, parents, siblings, etc), but that is not my intention. My hope when starting this blog was to provide information to those seeking knowledge. When I was diagnosed over eight years ago, I was unable to reach out to those with this disease. I want to be able to share my struggles, my pain, my successes so those enduring this disease can see that there is life and hope after the diagnosis. 
 
2) Do you stop and wonder that by sharing your thoughts you are hurting another persons core because they can't do what you do?

By sharing my thoughts, I do not feel that I am "hurting another persons core" because I am trying to illustrate hope, perseverance, and determination when many with this disease see it as a death sentence or an avenue to give up. I am trying to be the voice that so many desperately need to hear. They need know that they are not alone and see that just because this disease exists for them, it does not mean that they are stuck or confined to a life of pain, terror, sadness, and loneliness. 
 
3) Do you see yourself as a billboard MS "survivor"?

Janice, I do not see myself as a billboard MS survivor. I do not disclose my stories/knowledge/hope to make myself seem like the MS patient who has it all or who has been able to overcome the odds. I share everything to provide a voice to an otherwise very dark subject. This disease took control of my life when I was 20. I'll be 29 tomorrow. Though I am still young and though I still have numerous years ahead of me, I still have a long journey to face. Not a day goes by that I do not continually wonder if I will be able to walk or talk or be the woman I've worked so hard to be. I have not survived MS. I am battling the disease like everyone else. I am surviving the disease, and I am trying to give hope to those who feel like their life is over. If I can reach one person, if I can prevent one person from allowing MS to take over their heart, mind, and soul, I think I have accomplished what I originally set out to do. 
 
4) Do you think it is fair to share so many of your stories to those who do not have the strength to do what you do?

I am the only person who can stand in my way. There is not an illness, a circumstance, etc that can prevent me from reaching my goals. This is the one thing I wished I would have been taught when I was first diagnosed because I spent years blaming MS on what I couldn't do, what I wouldn't do, etc. Every single one of us has the strength, determination, and perseverance needed to reach beyond our goals. I am trying to be the small nudge, voice of reason, and support needed by every person enduring this disease. 

5) Do you think it is right to make people think that what you can do, they can do?

I am not making anyone think that what I can do, they can do. I am providing the hope needed to illustrate that anything is possible no matter the circumstances. I cannot make an individual angry, sad, jealous, envious, etc. They are the only person who has control of their emotions. I am merely hoping that I can provide the needed insight to go a step further.

6) What type of person do you think you are within the MS community if you seem to not be able to relate to everyone with this MonSter?

Every single person with MS is different. This disease is different so there are no two patients who are the exact same. Every person with this disease is able to relate to another with MS due to the only commonality - Multiple Sclerosis. I can connect with a complete stranger because he or she shares the one thing: Multiple Sclerosis. Through it all, I have MS. It DOES NOT have me nor does it have any other person. Never forget that.

I appreciate your concern for the MS community. Though I am unable to relate to every symptom and though I am unable to relate to every story, I am able to provide my words to illustrate that hope and courage and perseverance can allow anyone to push forward to come out on the other side stronger, braver, and more determined than before. I will not discontinue my blog nor will I control what I say for fear of instilling jealousy or envy. Through it all, I know that my words, my story, my hope, my determination, my fears, my successes, and my perseverance will radiate to those who read this blog. At the end of the day, that is my only desire.

Thank you, again, for your e-mail. Your thoughts allowed me to dig a little deeper into the, otherwise, mysterious world of MS. 

To those who read my blog, thank you. No matter your circumstances, no matter your story, no  matter the type of MS you have, never ever forget that you have MS. It does not have you. You control what you can and cannot do, and through it all, never forget that you have someone fighting with and for you every single second of the day.

Me.

Mirror

Since 2005, weakness began to ravage my body to the point of being incapable to function as the young woman I once was. There have been countless times over the past eight years that I have made excuses as to why I couldn't do something...or why I didn't want to be active...or why I decided to let the medication and fatigue take over my entire being.


However,


that was then.


This is now.


On May 2nd, I'll be turning 29. This will be the last year that I have to live in the decade that changed my life forever (I was diagnosed with MS on December 17, 2005 - I was 20). Somehow, everything seems to finally make sense to me. What I never really seemed to realize is that my life is not just about me.


It never has been.


This past December, I became engaged to a man who truly encompasses every aspect of what I believe love should be. We support one another. We celebrate each other's successes and pick each other up should we fall. Not a day goes by that I am not continually reminded by an action, a touch, a word, or a smile that I was chosen for everything I am...


and everything I am not.


There were no excuses present when Christopher made his choice to have me (me!!!) as his future wife. When he looks at me, he sees his future. When I look at him, I see my future, and I see everything worth fighting for.


Christopher and I have discussed starting a family soon after our wedding. With these discussions, I've realized that now more than ever, every aspect of who I am, every success, every downfall - everything - will ultimately affect more than just myself.


Now, when I look in the mirror, I see that my overall well-being is no longer just about me. I am fighting for myself, my future husband, our future children, our future grandchildren, and our lives.


I find myself pushing harden than before. No more excuses as to why I cannot do something. I have a goal to run a half marathon in a year. Will this happen? Absolutely!


No more excuses of paralyzing fear. I was terrified to go back to school for my Masters. Am I doing it now? Absolutely! Am I going to graduate? You better believe it! Will I go back for my PhD? Who's stopping me?


No more excuses as to why stopping/giving up is okay for the time being. Have I wanted to give up during grueling workouts or intense study sessions? I cannot describe the want there. Did I? Nope.


No more excuses as to why I cannot be the woman I want to be. No more excuses as to why I cannot be the wife I want to be. No more excuses as to why I cannot be the mother I want to be.


No more excuses.


Period.


Today, I fight for myself. I fight for my future. I fight for my future's future.


Today, I stand here fighting for and with you.


It is a very scary world. There seems to be road blocks around every corner, but through it all, through the adversity, through everything that would typically make an individual give up, it is our purpose to keep going.


Keep your eyes open. Hold your head up high, and follow the path you were meant to take.


Only you stand in your own way.

Christa and Shirley

This past weekend, I was pleasantly surprised by an e-mail from a reader (Christa). This e-mail, however, was from a caretaker of a woman suffering with MS (Shirley). Reading her words made me incredibly emotional yet I could feel the pain, sadness, and loneliness that Shirley has and is feeling.

Through Christa's words, I have a new respect for those in our lives who continually strive to make our lives easier. I thoroughly believe that MS can be a blessing in disguise, and I believe that Christa is Shirley's guardian angel

(for privacy purposes, I have eliminated parts of Christa's e-mail to me).

Hi Desiree,

You don't know me but I believe I might have found u on the web for a reason. A very dear friend/client of mine has struggled with MS for some time now. Recently, she was placed in a nursing home due to the 24 hr a day care that she now needs. Shirley is in her 60 's , far from old, and completely depleted and depressed. This is a woman who is normally extremely positive , cheerful, insightful, educated and loving. She told me today that she wants to commit suicide , that is how unhappy she is. This is not the Shirley I know.

I imagine she feels very alone with this disease and maybe if you reached out to her and let her know she's not alone it would make a world of a difference. ...thanks for reading and I hope you are doing well.

Thanks again.
Gratefully,
Christa

Christa:

It is impossible for me to express the emotions I had while reading your e-mail. I am always so surprised when I receive any type of communication from my readers, and your e-mail had me in tears.

First and foremost, thank you for reaching out to me in regard to your friend/client, Shirley. I hope that you are able to speak to Shirley on my behalf and give her the words of encouragement that she needs. Though my words are for Shirley, please know that my words are intended for you both.

Shirley:

There was a time in my life when I felt

alone,

defeated,

empty,

abandoned,

sad,

unhappy.

Everything I tried to build my life upon crumbled beneath me, and I was content with allowing my life to dwindle into nothing. Sadly, I was okay with doing whatever I had to do to ensure that my life ended sooner rather than later. No matter how many times I tried or how many times I begged for my life to be over, I still remained.

But why?

What we may be unable to comprehend or accept is that everything we go through – our struggles, our adversities, our tears, our triumphs – prepares us for something much greater. We do not know what has been planned for us nor do we know what we are being prepared for. What we can do now, however, is take the walk with our heads held high and move forward.

You are an incredible woman.

Your pain, your struggles, your tears have continued to empower your character. Though you may want your life to end, though you may want to give up, and though you may want to allow this disease to consume your being, you cannot. You can continue to move forward as the positive, insightful, cheerful, loving, and educated woman you are. You may be searching for a way out, and I understand why you are. However, please know that you can continue living a fulfilled life and can reach higher than you originally believed your aspirations and dreams could take you.

Shirley, you are not alone.

You have a support system that will pick you up when you fall and celebrate your triumphs. Shirley, I am here. I will always be here to answer any questions you may have, listen to your fears, or be the kind soul you need to listen. No matter what, never forget that you have MS. MS does not have you.

You have had an amazing and beautiful life, and you will continue living in amazement and beauty. You will be shocked by what your body can overcome and how your heart can heal the deepest wounds. You are, Shirley, a creation with a deep and unwavering plan. Always keep in the back of your mind that nothing worth having comes easy. You may want to give up, but know that you are being guided and protected..

I am here with you fighting for the same things you are. I have all the faith in the world that you will overcome the struggles you have faced and will fight through the mazes you’ve yet to encounter.

You are a strong and courageous woman.

I believe in you.

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.