I came across this blog entitled Letters to M.S. The blogger encourages readers to send in their authentic angry, tear filled, heart felt compositions. These letters are the naked truth exposed for all to see. As I read them, I have to say the mainstream emotion was anger. There is a saying that posits if one picks up a hot coal with the intent on throwing it at someone (MS), in the process it’s you (the thrower) that ends up getting blistered and burned. I know that it can’t be healthy to carry around such piercing raw rage and hatred or resentment. But there are times that I do. From my reading it sounds like it may be among many other common denominators we MSers share.
Of course this encouraged me to think about my own supposed letter. I actually sat down today with intentions of drafting this letter. But I failed. The emotions (anger and sadness) that the idea said letter conjures up are so heated I can’t even put them to words. The fury is definitely there, but I don’t want to release it to you. Please trust it’s there.
I’m taming it. I know it is there. It will probably always be there. In a way that kind of empowers me? Let me explain. I know the resentment is there, but I don’t allow my attitude to be affected by it. In this way I am in total control of my outlook on things. It is a daily battle to not allow my anger or sadness to discolor my perception, I am in control.
I acknowledge MS has contaminated the basic aspects of my life.
I know I have lost contact with certain friends and family members at lease in part because of how I have handled its intrusion on my life. There are certain relationships that couldn’t take its strain. I only permit its weight because I have to, others don’t.
I have to let myself feel it (hurt, bitterness, sad) when it happens. My goal is to address these emotions when they appear. Then put them back in their place. Allowing me to get on with what needs to happen. Giving me permission to live and get a little closer to the acceptance I always rant about.
Please remember this is just what gets ME through. I’m no doctor.
I will get to the point at which I can write a letter, but today
I don’t have anything for ya! You know what your parents always said,”If you don’t have anything nice to say….”
Man, it is crazy to me that I am reading these things in 2015 that was written in 2011 and I can relate to some of the things that are being said. I was DX 2012, which was my senior year of undergrad. I like to think that I deal with the minor challenges that are associated with MS which leaves me beyond thankful. I am 25 and recently engaged so when individuals always ask how I am …. my response is always I can not complain. I do know and understand that things will change. I have yet to have “ANGER” in the manner that you guys speak of. My mothers brother has had MS my whole life so I knew what it was before I was DX (and I asked to be tested it for it before my initial symptom that brought about my horrible DX).It is very relieving to know that I am not “writing to MS” alone. Your blog IS VERY POWERFUL…… hope that you keep fighting just as I will!
Ieasha (chicago)
Leasha Chicago, It’s a pleasure to have you here. My husband and I have been together for 12 years He’s the rock holding me up literally. I was also diagnosed at 25. I’m 40 now and things are a bit different now but I’m still in game!
Its nice to meet you and thanks for sharing your story….. I was diagnosed at 22. I sent my fiance a picture of one of your stories….. told him “thanks because I read about a husband that reminded me of how you do things for me”. I am happy you have him!
2 weeks before my first day of college, on August 15, 2009 I was diagnosed with Multiple Sclerosis. I thought that I had my life planned out; go to college, get a job, get married, and have kids.
It is now 2 years later; and my life is nothing like I had expected it to be. Life is too short to look back at what we have lost, my only goal now is to look ahead. Today at 21 years old, I intend to beat the odds and stereotypes of “Multiple Sclerosis.”
Tristen, Lets do it together!
Nicole
Feeling emotions when they’re happening – that’s a biggie! And something I need to work on, for sure. Thanks for mentioning Letters to MS. I’ll have to think about writing and submitting a letter myself.
Kayla, Yeah, for me it’s working out 😉 Nicole
Nicole,
Your blog is wonderful and quite powerful. Thank you for sharing your experience and thank those who have written to share theirs. I was dx in 2005, and it has been a real journey for me and my family (husband and 2 school-aged kids). What I can add is that my being willing/able to get any value out of this experience — even the smallest amount — has really helped me handle what this journey has forced me to face (about myself, my friends and family, my career and personal goals, etc.). Good luck to everyone in this community. I wish we could all meet — or at least connect via the internet!)
Nicole, is your MS relapsing-remitting? The relapse that resulted in my diagnosis laid me flat, and after IVSM it took many months to return to nearly normal.
I’ve moved on to secondary progressive.
Nicole
Nicole, please check your junk mail for an email from MS Kurmudgeons Korner that requires response.
MSKK Admin
Will do.
I enjoyed your post – I think that we often fail to give ourselves “the right to grieve” over the losses we experience through MS. Suppressing those emotions just allows them to intensify, and infect other emotional aspects of our lives in a very negative way (coming from someone finally letting go of major anger management issues).
This journey may have become more challenging than I ever anticipated, but it’s the one I got. We play the hand we’re dealt. After over 20 years you’d think I might have a handle on the emotional side, but “new” loss is still jolting, though not like the early days. A pig in a pretty new dress is still a pig.
Gim Poet, you are very right, The next time someone questions me I’ll remind them of my right!
Nicole
Hi Nicole,
It would be hard for me to write a letter to MS, like Matt. I am fairly new to it. I was dx in 2009. I have a lot emotions surface while dealing with MS, but as of yet, no real anger or hatred toward it, (or the other 2 chronic illnesses I have). I have been angered by the limitations, pain and results of chronic illness, and have expressed that anger, but I don’t hold onto it, nor is it a presence in everyday life. I agree that everyone has the right to feel what they feel. I think the healthiest thing one can do is accept and express those feelings when they come, then let them go, and not allow them to fester. MS is already taking so much from us, it would be a shame to let the anger take more.
i feel very angry at MS. im also very saddened by it…it robbed me of so much. i had goals of a career and now MS has robbed me of it . twice. ive had to rearrange my entire thought process of my FUTURE and it leaves me feeling hopeless. and thats not like me. its changing who i am and with every ‘attack’ it does it more so. i love my friends and family but they cant ‘get it’ because they thank god dont ‘have it’ so i feel alone sometimes. im a person with huge goals dreams hopes and a non stop lifestyle.. until MS decided my lifes map needed a road block. ive spent 9 years almost trying to work around this block and come to terms with it all.. and everytime i do it throws a new symptom into the mix to monkey wrench it all. i feel like a lost girl in a pile of puzzle pieces trying to FINALLY put them into a place.. not their original place perhaps but “A” place where it can make sense and i can look at the future and feel safety and smile that.. it will be okay .. somehow.. and for now im just lost with all these puzzle pieces… i am a huge writing fanatic so the idea of that letter to ms is a great idea to me and i love it… perhaps a pair of boxing gloves rather than a pen to MS would make me feel better some days but yanno…
x0x0
GumGirl, Yes, yes, yes. It’s already talen so much. I vote for the gloves!
Nicole
Here’s my take on MS and anger. Life as one knew it or hoped for has been stolen. Hell, yeah, I am going to get angry. Like you, I try to keep that anger in balance and not let it take over my life. I sublimate and avert my focus into things like writing poetry or fiction. But I will defy anyone to try to tell me to my face that I don’t have the right to feel anger over what has happened to me. I also don’t have the right to take out my anger on anyone else. I accept that. But I have the right to feel what I feel. If I don’t allow myself to feel that or recognize it, I think that primal force will turn into something destructive.
Judy, that’s it. That’s what I’m trying to do. I like ” I have the right to feel what I feel” So often I am trying to cover it up.
I’m still fairly new to all this. When I was first diagnosed I was an emotional wreck, going into intense crying sessions when I experience severe new symptoms, or even acknowledging current ones. Those times of seeing new disability are still very hard for me, but I’m starting to develop a method for handling that stress.
I don’t know if it’s healthy, but I get your hot coal analogy. I don’t like holding that hot coal, so despite what MS is doing to me, I try my best not to pick it up. I am also thankful of more experienced people like you that give me a good example of how I can be able to handle symptoms I haven’t experienced yet.
Matt, thanks for the awesome comment! I’m a work in progress!
Nicole