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.
