Dear Self

As of last week, it’s been six months since I found out that I have progressive MS.

This is the first of many milestones that I’ll pass. Six months, a year, five years, ten. I think it’s human nature to take notice of these moments and to find some way to mark them. But for me, and I suspect for you, they aren’t occasions for flowers and balloons. It's not a gleeful anniversary. So what to do?

A friend recently gave me the idea of writing a letter to myself, to be opened at some future date -- a milestone yet to come. I like the idea. I think my letter would go something like this...

____

Dear Self,

Don’t be scared. Be brave.

There are some things happening to your body that you can’t control and probably aren’t happy about. Just remember that you’re the same person you’ve always been, no matter what. Maybe more wobbly on the outside, but certainly a lot stronger on the inside.

Laugh hard and often. Keep your mind and heart on what matters most. Take the time to appreciate the things that you can do, and do them well.

It’s not all about MS and it’s not all about you. Don’t let this disease prevent you from being the mother, friend, sister, daughter, and wife that you want to be.

Be thoughtful, be engaged, be alive.

Love,
You
_______


What I’d really like is a chance to read a letter that my future self had written to me. In five years, what will I wish that I had known now? I suspect I might say the same essential thing: don’t be scared. Be brave.
Tags Diagnosis, Progressive MS      13 Appreciate this
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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.

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    26 Comments

  • Avril Muller   Jul 5, 2013 8:54 AM
    What a wonderful idea.
  • Vicky   Jul 5, 2013 9:02 AM
    Hello Katie, the letter you wrote is powerful! I needed to read something like this. It helps a great deal to know that: it's not game over and we still have a life to live. Take good care.
  • Lou Jean Beckett   Jul 5, 2013 9:05 AM
    Hang in there, Katie! I was diagnosed when our twin boys were 3. I had just accepted a new job 500 miles away from our families. No stress, right? Would love to visit with you. You can do it! Take one day, issue, problem at a time.
  • MATTIE BARNEY   Jul 5, 2013 9:42 AM
    Your letter made me smile !
  • MATTIE BARNEY   Jul 5, 2013 9:42 AM
    Your letter made me smile !
  • Mari   Jul 5, 2013 9:50 AM
    I read your letter, my husband was Dx last year March 2012 with MS and Grand Mal Seizures so it's been hard for him to accept He went into a deep depression cause it was a lot to handle on top of his Type 2 Diabetes, He has read your letter to self and has started a journal to self so thank you for the idea ...God Bless and stay strong :-)
  • Judith Mejil   Jul 5, 2013 10:03 AM
    :) that's exactly what I have done ..wrote a journal..too many years to count..just taking one day at a time! very Grateful for all I found on my road! :) ..not scare just brave...like you! be bless and keep hope alive!
  • Linda   Jul 5, 2013 11:21 AM
    I think it is fantastic you do all you do. Especially work. I can't manage work any more and am on disability. But then again I had a very stressful and strenuous job I was an RN. I love the letter you wrote to yourself. Blessings to you.
  • glenda burns for mike gebhardt   Jul 5, 2013 1:21 PM
    I am 41 with progressive ms unable to walk but i have a good humor about myself. I try to not be angry and to accept what is.
  • Avatar
    Tony_O  Jul 5, 2013 5:29 PM
    my wife was in a car accident in 2011. In the next few days she began to have MS like symptoms, eventually she was admitted to the hospital & given Steroids. she got better & the doctors did not declare a diagnosis. She has been symptom free. Last week we went to the Nuero for a 2 year follow up , expecting to be released & she had a hand full of legions on her brain & he gave her the diagnosis. She began Copoxone 7 days ago . 3 out of the 7 she has had extreme side effects that pretty much kept her immobilized each day. But the side effects were only for about 24 hours then she would get back to symptom free. Today was a very bad day for her . she is scared & I am sad that she is in pain & uncertainty. I found this site & offered it to her . she has not got on. I am letting her deal with her self & trying not to give her a lot of advise. I look forward to using this forum to process this difficult time .
  • Colleen   Jul 6, 2013 5:05 AM
    This is great! Since diagnosed 3 years ago, I took on the attitude of "I have MS, but I'm still ME"... no pity, laugh at my physical flaws, and remind my husband and kids that I'm still ME. Not a fragile porcelain doll. ME. We got this.
  • presente   Jul 6, 2013 7:09 AM
    I have ms also and I was inspired by your thought . I am going to
    write a letter to myself and one to my kids . THANK YOU FOR SHARING
  • Helen Jackson   Jul 8, 2013 12:04 AM
    We have a MS support that meets each month. We would love to share with you. We will meet on tomorrow, July 8, 6:00 PM. You are welcome
  • Helen Jackson   Jul 8, 2013 12:04 AM
    We have a MS support that meets each month. We would love to share with you. We will meet on tomorrow, July 8, 6:00 PM. You are welcome
  • Salpy   Jul 10, 2013 9:17 PM
    Dear,
    I also have progressive ms. I started writing too, for i was aloud talking to myself and shouting when i get scared. This is not me...

    Anyway, Loved the blog.
  • Judy Battista   Jul 10, 2013 11:23 PM
    About a month ago I was told that my RR had morphed into SP. I knew something was up. I had to ditch the professor garb into my jammies. My
    cognitive abilities have been shot to hell. I;m happy I can still laugh at my
    blunders.
  • Sergio Ríos   Jul 11, 2013 11:00 AM
    Tengo EM diagnosticada en 1980, trabajé hasta que me paralicé, postrado 22 años, una persona con EM puede hacer todo, madre, padre, amigo todo lo deseado y mas... cuando pierdes movilidad cambias de orientación descubriendo otras maneras otro interés si te acompaña el optimismo y la energía mental, la vida produce y guia. saludos
  • Shine  Jul 12, 2013 10:56 PM
    For me, the most difficult is so little research for PPMS. It just is not financially attractive for pharm companys. That and never being sure where it will take me in the long run.
  • Barbara Pereira   Jul 17, 2013 5:29 PM
    Great letter!! Thank you. Inspiring. I've know about my MS for the last 15yrs.God bless & good luck Katie.
  • Jan Adair   Aug 20, 2013 5:35 PM
    I was diagnosed in February 1979. I counted my blessings as each year passed and my children were able to do more for themselves. MS changed my life but I think I've been more appreciative of each day.
  • Avatar
    Resiliency  Aug 21, 2013 2:22 PM
    Hi Katie, I just started with MS Connections. Your letter is inspiring. Thank you for sharing it. I was Dx'd in April 2010. It is good that you reached out for connecting with others so soon. Support is one of the most important tools to learn to adapt to the changes in our lives because of MS.
    Take care.
  • Jonathan   Sep 4, 2013 9:53 AM
    Katie, I was diagnosed in 2001 and after reading this post I am curious what my letter would have said considering how i feel today. Thank you for the post I will be borrowing your idea so In a couple years I can someday read with my children. Thanks again for the inspiration
    Jonathan
  • Overland  Sep 12, 2013 9:38 PM
    I would like to post this about my book Next Stop: Gallup so people with MS will see it's possible to live with the disease and still do exciting things! Anne Overland

    My book Next Stop: Gallup! takes the reader,
    along with an older, wiser Anne into New Mexico’s diverse Indian
    cultures after a devastating attack of multiple sclerosis. Making the most of her remission, she travels the back roads of reservations with a gung-ho missionary who spouts God-fearing epithets, visits Navajos in their humble hogans, learns from the quiet Apache, thrills at the intensity of Zuni mudhead dances, camps under colorful hot air balloons in Albuquerque and visits an authentic saloon. At the end of two years, to her surprise, she’s transformed not only spiritually but physically, finding New Mexico living up to its nickname: Land of Enchantment.
  • Avatar
    jaspbri0317  Sep 24, 2013 5:28 PM
    "don't be scared. be brave."

    i love it!!!
  • yermia   Jun 27, 2015 1:47 AM
    très satisfait du dépannage rapide et efficace
  • Lorraine   Jul 16, 2015 3:10 AM
    I was diagnosed with PPMS 15yrs ago at the age of 44 but think I had
    had it for many more years when I think of certain things that were happening to me.
    My consultant told me to carry on with my life as usual.Watch my weight and diet.
    I told him I swam five days a week and he said swimming was the best exercise for m.s because you don't sweat and overheat.It has certainly helped me.
    I cannot walk anywhere now.I have my scooter and wheelchair but am still a positive person.I love to dress up when I go out and love it when people say I am looking well(even if I am not feeling it).
    The other thing is being in a wheelchair I can wear 6 inch heels if I want to 😂 I am fortunate enough to have a loving caring husband and three wonderful children and five adorable grandchildren.
    I hope and pray that they will find a cure for all m.s warriors really soon.
    In the meantime try and stay positive and laugh (a lot).