My First 270 Days

As I sat home with that broken foot and yet another pair of crutches, I came to the hideous realization that even after my foot healed, I needed to use a cane. My doctors had been warning me for years about the risks I took by walking without assistance, but I had stubbornly refused to accept that I needed help.

My fear of serious injury became terrifyingly real, and my MS became present in my day-to-day life in a way it never had before. I was suffocated by my disease. I was bewildered by its oppression on my daily routine and its control of my thoughts. And, for the first time, I was blinded by the burden of my potential demise from MS. A lifetime of lies caught up with me as I was forced to accept the reality that MS was part of not just my life, but the life of everyone with whom I interacted. I could think of nothing more abhorrent. I had no choice but to tell the truth.
 
Sharing my MS story was an epiphany—I was quite literally the hackneyed cliché of metamorphosis from caterpillar to butterfly. And every day that goes by that I embrace my MS, instead of denying it, my wings get fuller and more beautiful and I soar a little higher. Today I tell my story to anyone that asks. I am proud of my journey, I am proud of the person I have grown into and I am proud that I am walking tall and strong (at least metaphorically).

I want the world to know that people like me, with a disability, bring incredible value, wisdom, and humor. We are not to be pitied for our condition or lauded for our courage in overcoming all the odds. We are to be respected for our personal journey. We have good days and we have bad days. We worry about our health, we worry about our retirement plans and we face the future which is as unknown for us as it is for everyone.

I thought that sharing my story would be the beginning of the end for me and my “normal” life. In fact, it marked the beginning of my life. Without a single doubt, it is the most powerful choice I have ever made. I have redirected the energy I was using to hide from my MS into facing my disease head on. And that feels good. I feel emotionally stronger than I ever had in my adult life. I know who I am.

I am still learning to appreciate the role MS has had in shaping me, in making me strong, resilient and tenacious. After living with the unpredictability and devastation of a chronic illness for the majority of my life, today there isn’t much that can throw me off course. I feel like I’ve seen it all and done even more. When challenges come my way, I challenge them: “You have no idea what I have done in the past. You have no idea what I have overcome to get here. Don’t think this is going to stop me!” Don’t get me wrong, MS impacts my life every single day. There is no escape from it. But now it is a source of internal strength.

I have lived with MS for 9,855 days, but MS has only lived with me for 270. Today, I dwell on living my best life, sharing my story to help others who are hiding and constantly challenging myself and others to embrace the truth of who we each are.

Read about Rachel's 9,585 days with MS here.
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Rachel

Rachel Padgett

Rachel was diagnosed with MS in 1993. Originally from England, she now lives in Seattle with her husband, Brian. She enjoys cooking, traveling and swimming for exercise and recreation.

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    13 Comments

  • Erika   Apr 26, 2017 2:22 PM
    I love your post and your positive outlook. There is nothing like sharing your story and removing the shackles that MS has had all of us gripped in at one time or another. Keep us the good work, keep smiling and keep sharing! Be well.
  • Leslie   Apr 26, 2017 2:37 PM
    Wow! What a great story. I have been diagnosed for just over a year now and I have still not told everyone. I am proud of you.
  • Maria Mouhtad   Apr 26, 2017 2:47 PM
    Hello.

    Thank you for sharing your story with sincerity and truthfulness.
  • Gene   Apr 26, 2017 2:52 PM
    I too have buried my MS. Unlike you, I see no hope in acknowledging it. I Have for the last 18 years tryed very hard to pretend I'm not inflicted with MS. Not that this strategy has worked it's just what I have done. MS hits me the hardest when I make my visits to my Doctor. There, in his office, I see first hand the real crippling effects of MS and real MS patients.
  • Alison Bacus   Apr 26, 2017 3:21 PM
    I was diagnosed October 2010. My big sister died of MS complications 20 years ago. Her daughter and my brothers daughter both have MS in the UK. I also tell everyone who will listen about MS and I am also a major fundraiser for NMSS. I am so glad my friend Rich told me about your website. Keep up the good work and keep posting as I get really down at times as my legs continue to weaken.
  • Heather Bate   Apr 26, 2017 3:35 PM
    You were writing my thoughts and the road I've travelled for the past 8000 days (22 years). With every setback in every part of my life, my MonSter buddy is there to remind me just how strong I am. Thank you for writing our story
  • SmartyPants   Apr 26, 2017 7:08 PM
    Bless your heart, I saw a bit of myself in your post. But after putting ten years behind me, living with MS is a lot easier than what i thought it would be walking out of my neurologist's office with the world upon my shoulders. It turned out not so bad really, and my life changed from being full of stress and running like a chicken with my head cut off, to being retired early and spending my days with my new hobby, writing books.Without getting MS I never would have had the time to write "The Eve Chronicles" by Diane DeVillers, as I was a workaholic and hardly had much time to read much less write. My MS has stablized and all the worrying I had done in the beginning was for naught. Sure I have bad back pain, and a half working leg, but I do use my walker and canes and wheelchair when I go out and with my head up high I embrace the world that includes people like us who are going though chronic disease. But any time I am feeling sorry for myself, my foot aching or my back almost instantanously I go by someone in a wheelchair that has no legs, or someone who is blind. And I realized there is a world of hurt out there and everyone has their own hurt either inside or out and that I am not alone. So I keep my spirits up to show the world that I refuse to give up. I am still the same person I was when I walked into my neurologists office. Still a SmartyPants.
  • smartypants   Apr 26, 2017 10:14 PM
    I also see that you swim I too swim and i think my exercising has a lot to do with my not progressing, twice a day i ride 8 miles on my incumbent bike inside my house, then do a weight and bed exercise for the next half hour. I swim twice a week, i swear it helps me physically and mentally, i think it prevents me from getting depressed. Keep swimming, the water heals.
  • David Maskalick   Apr 27, 2017 1:04 PM
    Hello Rachel,

    I was diagnosed with primary progressive MS in 1987 an was told the fatigue and so forth would wither increase slowly, or quickly, or somewhere in between. I had obtained my PhD in biophysical protein chemistry in 1984 and had been working for three years in the biotechnology product development effort at a pharmaceutical company when I was diagnosed. I too hid it for the next 13 years until management told me I had a very poor performance review. I had to explain that I had been diagnosed in 1987 and MS had compromised my memory and my ability to quickly solve technical problems. I was then told to take long term disability which I have been on since 2000. So I certainly hid my MS from everyone at work for 4745 days.

    Then Kathy, my wife, and I moved back home where her folks were in their 80’s and might need care. Her Mom had a stroke and we were sure glad we were there since her Dad didn’t know what to do, and, we got her to the hospital right away to limit the damage from the stroke. My father-in-law passed away a year ago while he and I were out walking in the neighborhood.

    But our home town has a great symphony orchestra and we’ve made a lot of friends through that. We host a reception about six times a year for a symphony fan club we lead to meet and talk with guest artists over snacks and a couple drinks. Indeed we are getting ready to host another reception tonight and following that we will be taking the artists to dinner.

    I was still reading the scientific literature and could see how discoveries and inventions generated by discovery research labs in universities could be commercialized into products that would benefit the survival of people all over the world. I abandon that venture for lack of customers. But, I’m still reading the scientific literature and I’m in the process of working on a book about the applications of biotechnology and nanotechnology.
    I might have MS and might be on disability, but, I still persevere trying to al least make a difference in part of the world.

    Best wishes for success to you and all others dealing with MS,

    Dave Maskalick
  • Twigstein  Apr 27, 2017 1:29 PM
    I've always considered myself an optimistic/realistic person and while I've dealt with a multitude of MS issues for nearly 30 years, I'm having to adjust my expectations and recognize my limitations all over again. I'm feeling very frightened and spending a lot of time in tears. I know things could "always be worse" but I feel alone, navigating a changing landscape that I can't predict. I fear that I don't even know the right questions to be asking.
  • Andrea King   Apr 27, 2017 4:00 PM
    Rachel, your blog is a inspiration, "Thank You". It is refreshing to see someone who is showing that they can still communicate, and articulate what you you are feeling, and Thinking in a sincere unique manner. You have brought hope to a MS Warrior, who has lived with those who believe that MS makes you incompetent, dumb,incapable, and just plain stupid. It is insulting when you have to constantly prove your self. Your blog has let me know that there are other fighters out there. I always say, "Yes I have MS, but, It Does Not Have Me".
  • Ian   Apr 28, 2017 2:26 PM
    Good artical, re MS, your secret!
    Their is no shame in having MS, it something thar life has thrown at you and now you have to just get on with 'your' life.
    I have had MS for some time now..I was a sports teacher , wet & dry, at boarding school.
    My life changed, but I didnt.
    My pals knew, but I just carried on, canoing, parachuting, mountain climbing, until bit by bit some parts of me let me down. I now swim arms only. Can't walk very well, then came wheelchair sports...... reached world level at fencing, life was still out there.
    You can feel sorry for yourself, or enjoy life 😎♿🍷🍾. ~~~~Life is great 😀😀🏊🏅
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    radarsmom  May 2, 2017 4:54 AM
    Thank you for sharing! I've been keeping mostly quiet since my diagnosis, but I've been really thinking about putting it out there to more people, but I don't know I guess I'm embarrassed like somehow I did something wrong. A part of me knows that's completely insane, but that part of me is a lot quieter than the other parts.