Not to long after I was diagnosed with MS, my 70ish year old neurologist confidently told me that he thought multiple sclerosis would not be cured in his lifetime but for sure it would be in mine. Quite comforting at the time, but now the clock is ticking very loudly. Each new symptom reminds me just how vulnerable I am. I was in my early 20’s at the time he made that statement. Now I’m knocking on 40! My cure confidence is slowly fading away. First of all, I never thought I’d get this disabled. After all, a cure was just around the corner. Right?
I don’t see that neurologist anymore and I wonder how he’s doing. I wonder if he’s still alive. I wonder if he knew how great I thought he was. I wonder what he would think if he saw me now. I’m sure he knows that a chronically progressive disease does just that…progress. The best things I can do are to dig deep into myself, find peace and adapt.
To tell you the truth I don’t even wish for a cure anymore. It takes too much out of me. I rather just try to make it through the day. It’s much easier for me to take it one day at a time. On rough days it downsizes to one moment at a time.
Amen Brad….me too! Plan to live until time is up. KimC
I don’t waste my limited energy thinking about a cure for myself. My only wish is to find a cure for future generations. I pray my kids–our kids, don’t have to go through what we do.
…i have asked god for ten good years, i gotta get these kids raised after that, im game for wharever. One day at a time 🙂 xo, olivia
Olivia, Ten, that’s all!
I read your blog, and all I can think of is “525,600 Minutes” from the No Day but Today in the musical Rent. In that vein, if the neurologist had known the path your MS would take, would you have rather him told you? Would you prefer the hope of expectations be robbed?
As my MS progresses, I find myself thinking ever more of a quote from Rainer Maria Rilke, “…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
Some answers like moments just have to be lived. I hope you feel better soon.
Well lived,
Thanks for those fine words. You’re right I coudn’t have
handled the answers before.
Nicole, I feel you! Especially on the “here and now” that is what dealing with MS is, always here, and always right now, those two things I can promise. As for the cure, I don’t think about others finding it, but one day coming across it myself and giving it away, FOR FREE. I would have already profited off it by being cured. I have been d’x’ed for 9 years but have had symptoms since I was 11/12 yrs old. At 29, I won’t give up on there being a cure until I breath my last. But, smile as you take it one moment at a time. We MS’ers seem to appreciate each one as it comes and goes more than those that are “healthy”.
JJ, I think we do too.
Nicole I always look forward to your post. You are always in my prayers. That is all we can do for each other is pray. Take care
Mary, Thanks much.
You are so right Nicole, one day at a time. That is my motto. As we all know, MS is unpredictable from one day to the next and I too have quit focusing on the cure and started living for each day, one day at a time.
Debby, Sounds good to me!
I am 56 and I know a cure won’t help me now. I am sure the damage has been done and to reverse it would be a miracle at this point in time. I did survive cancer so I have been on borrowed time for 17 years.
I am doing well even through MS was first seen in 1994. I can still walk but my cognitive function has put me in the disabled category. I am so dense now that I couldn’t answer phones for a living.
I think your feelings are valid and scary. I have to try to live in the moment. A be here now philosophy. If I let my mind go to bad MS places I just get very depressed. I don’t want to spend this precious time on worrying. Being PPMS I have always known meds don’t work on me. I accept this as a fact of life.
Lisa,
Thanks again for reading and sharing here and now.
Hello Nicole,
Your words are so well said. i really believe that a cure is really not in their priority even if all the medical team say so. i also decided to live one day at the time.
enjoy everyday!
Caroline, Thanks so very much. You’re right one day at a time.
You are Strong, even if measured in tiny fragments.
Judy,
Thanks. I love your way with words.
All I hope for is to find a job I can do and actually make a living at!
LSJay, That doesn’t sound like too much to ask for.
Nicole, I always enjoy your post. I’m still praying for that miracle. Don’t give up. I have my bad days too! I KNOW how you feel. You and others like us are in my daily prayers. You have a wonderful support system and I admire your family for that. Have a blessed day.
Elaine, I know that too. Thanks for the warm thoughts.
It sure is like that, but I believe we can be much stronger while we’re waiting for a cure. Working on it for us.
Kit, Thanks for your hard work!
I, too, stopped believing in a cure — I need a miracle at this point! I just try to get by with what I have left in me. The church in your photo is beautiful! Where is it?
Peace,
Muff
Muff, It’s St. Louis Cathedral in New Orleans.
I can definitely relate to your ongoing struggle. I often try to remember what is true for all of us — each of us really has only one moment at a time to live our lives. Do your best one moment at a time — that is one way I am working to live my best life — with or without MS! I am reading something that is really helping me move forward on my journey with and through MS. I recommend it highly — Self Healing Made Easy by Betty Iams. She was diagnosed with Primary Progressive MS 15 years ago. Through the efforts she outlines in her book she has been in full remission for many years! Check it out on Amazon.com. Best of luck as you progress!!!!!!
Linda, This must be a really good read! You’ve told me about it before. Either you work for Amazon on the side or Betty Iams is just flat out amazing!
Nicole….I read your post last week and as I was reading about your newest symptoms I felt my stomach knot and heart pound. I am so sorry to just be writing to you ) : and you will here from me today. I hurt for all you are having to endure and wish I had the right words of comfort. The toughest truth about MS for me is the unknown and it is at those times that I struggle most with hope and acceptance.
As we have talked about many times, our diseases are very different although we both have MS. Faith is my best weapon against fear. I love you dear friend and I ache for the terrible places MS is taking you. I have not experienced much progression since initial diagnosis but we all know how quickly and suddenly our disease can change. I am here for you and know I need to be more consistent and come and visit…..which I will. School is in session so I only have 6 month old Lillie. I will talk to you later today.
Andrea, Sounds good to me!
How true…one moment at a time. As MS’ers we CANNOT plan for tomorrow, next week or next year. Who knows how we will feel or be able to function. The things I can do today or now, I may not be able to do tomorrow. I don’t think about a cure either Nicole; it just isn’t going to happen in my lifetime & it is way too late for me. Yes it could/will help others and for that I am extremely grateful, but come on guys, quit dragging your feet! No pun intended. I tell my husband that I want a body transplant…I want to keep my head because that is fine, just give me a working/functioning body!
Kim, No I think I need a head and body transplant!
Kim,
I’m sorry but I beleive that we CAN and MUST plan for tomorrow, next week AND next year. I have had MS for over 12 yrs and I’m not giving up. If we don’t plan for the future what do we have? Yes I do live day by day but I will always plan for tomorrow and I think we all should. No one knows if they will feel or if they will be able to function the next day, year or even the next moment, no matter if you have medical problems or not. I will not let myself give up and just accept what hand has been dealt to me, I want to go down knowing that I gave it my all and made memories doing it. Don’t Give Up!