Hellos and Goodbyes

I’m sentimental about endings. When I know I’ve reached one, I pause and hold on as tightly as I can. The last time I sat on the floor with my friends and sang at summer camp. The last time I had dinner with my roommates before we graduated from college. The last night I slept in my own bed at my parents’ old house. These are moments to be marked and savored. They give you a chance to say goodbye.

The endings that you don’t recognize are even more poignant. The last time I said goodbye to my grandmother, not knowing that I wouldn’t see her again. The last time I kissed a boy, before an argument that ended everything. I think about these lost endings, which skated by so casually in the flow of an ordinary life. I want to go back and put a mark on those days. Plant a flag. Recognize them for what they were: not always sad, but always important. Moments that defined and framed chapters in my life, even as it changed to become something new.

As I learn to live with multiple sclerosis, I find myself thinking often about unknown, unseen endings. I wonder how many ‘last times’ I’ve passed in the last few years, not recognizing them as they passed me by. The last time I casually checked all the “healthy” boxes on a doctor’s form. The last time I wore very high heels. The last time I ran a mile. The last time I took the stairs two at a time. These were endings, too, though I didn’t know it at the time. By the time I looked up, I’d missed them.

Living with a progressive disease, no matter how slowly it progresses, means living with a lot endings. They may be tiny — unnoticeable even to me — but they’re always there. I find this to be a heartbreaking concept. It’s one of the things that has been hardest for me to come to terms with in the past 18 months. I’m surrounded by these fleeting moments, unsure of how to recognize them or whether to acknowledge them when I do. How can you say goodbye when you’re never sure what’s leaving? Would you want to, even if you could? This feels like something that could consume me if I let it, but I won’t.

I find that there’s a pull from MS to spend a lot of time thinking about myself and my health. It’s always in the back of your mind, isn’t it? Or people are asking how you’re feeling in that very concerned and sympathetic way. But I won’t do it. If I start to pinpoint and mourn every small change in my body, I may never stop. I don’t want this dumb disease to be the main thing I think about. I don’t want it to be the only topic I write about. I don’t want the possibility of disability to become my primary preoccupation.

When I insist on a perspective that extends beyond MS, it’s so easy to see how many things are just beginning. Last weekend, my son and I walked on a path in the woods that neither of us had ever seen. On Monday, I tried something at work that I’d never had an opportunity to do before. This year, my husband and I are tackling a project that I never thought I’d have a chance to take on. There are always new books to read. New foods to try. There are endings, but there are also places where I’m just getting started. There’s plenty to do that doesn’t require me to take the stairs two at a time.

I recognize that in the coming years, there will be times when MS intrudes upon my life more insistently than it does right now. I’m honest with myself about the fact that there will be many final moments — days when I lose things that I once took for granted. But I hope that even as that happens, I’ll remember what I'm learning now. To accept and mark the endings, but to deliberately and joyfully seek the beginnings as well. With or without MS, I think that’s what life is for.

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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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    59 Comments

  • dee   Jul 14, 2014 3:49 PM
    Our daughter with two small kids was also diagnosed in the earl spring and it makes me so sad to think I am too old to be here long enough to support her all the way thru this but she too has your teriffic attitude and that means so much.
  • Carol   Jul 14, 2014 3:51 PM
    Beautifully articulated. I have been thinking about this very topics myself lately. Thanks for framing the little goodbyes with the mystery and pleasures of hellos. I really appreciate that perspective.
  • Lizzie   Jul 14, 2014 3:57 PM
    Thank you darling. You have perfectly expressed exactly how I feel. Wishing you well xxx
  • Don   Jul 14, 2014 3:57 PM
    Nicely said. It's very true. Sometimes I knew it would be the last time I would do something I enjoyed. :)
  • Evelyn mercado   Jul 14, 2014 3:57 PM
    Enjoyed reading your blog
  • wewaf12  Jul 14, 2014 3:58 PM
    As I sit here, very depressed today, this has made my day! Thank you for making me think of things in a different light. I have been saying goodbye to a lot of things this year and because of your blog today I am now thinking of all the things I have to say Hello To. Again, Thank You, as tears are streaming down my face for the second time today. This has helped me to see a brighter way to look at things!
  • tammy   Jul 14, 2014 3:59 PM
    Thank you. I have been diagnosed for 5 1/2 years. I just want this awfulness to end.
    Very good article
  • kathie cluff   Jul 14, 2014 4:00 PM
    We were both told 2012 our lifes would never be the same. I enjoyed reading what you wrote.i have 5 children 12 grandchildren 3 we are raising. I related to you.i can't think about. Ms past moments.daily moments memories we make .i love life. It won't take that away.thanks for sharing it made me think.of good things Kathie cluff
  • Chrish  Jul 14, 2014 4:00 PM
    Well said. Thank you for providing a refreshing point of view.
  • Kasey Brown   Jul 14, 2014 4:00 PM
    Katie, I truly enjoyed this entry. It really touched my heart, as I think of all the unknowns MS brings; and all "the last times" ahead.
  • donna   Jul 14, 2014 4:20 PM
    Beautifully written . My daughter has relapsing /remitting M.S. I'm praying for her always. I hope she has seen this . I <3 you Vanessa !
  • Jackie   Jul 14, 2014 4:21 PM
    I had a tough winter this past year. It was the first time I'd felt slowed down by my MS. I'm strong as many of you are. I started journaling my firsts, lasts, and in betweens. It's a journey and I'll take every high and low in stride. I enjoyed reading your blog.
  • susie   Jul 14, 2014 4:26 PM
    Thank you for this post it is so touching, I became a grandma for the 8th time one week ago to a beautiful baby girl. As I sat in my daughters room and watched everyone pass her baby around loving her up taking pictures I had to just sit there waiting. This is one thing MS has taken from me, I can't pick up much due to my arms being so weak. Well I still try but I drop a lot of things and so for I have been able to laugh it off. But on this day it took all I had to hold back the tears, thinking about what I was unable to do. When I was given her I hold her and told her we would be sitting buddy's and I will be right down on the floor playing with her all the time. I still cried all the way home thinking of the loss, but then I realized this would not stop me from showing her just how much I love her.
  • Daniella   Jul 14, 2014 4:29 PM
    Wow!! That's the most profound way of wording what I think of on a very regular basis. At the beginning of your blog I was crying with sadness, then at the end I had a smile on my face whilst realising I have many 'firsts' to come. Thank you xx
  • Patty   Jul 14, 2014 4:56 PM
    Wow, this made me think of things that I never have. I was diagnosed in 2002. Have been blessed with no major MS issues, but I do think about what could happen. Thank you for opening my eyes.
  • Patty   Jul 14, 2014 5:27 PM
    Thank you!. I don't know if I ever thought of them as last time, but I guess I knew it would be the last time I wore really high heels when I did and the next 2 days I couldn't move, I guess when I couldn't lift anymore than 5 pound weights at the gym that would change now it's yoga and swimming, didn't realize that the last summer I spent hanging on the beach soaking up the sun would be the last. I was dx in 2001life was very dark for me for a long time but today i live life keeping in the day
  • Alice S.   Jul 14, 2014 5:40 PM
    Thank you for those heartfelt words! It makes me remember some memories I've had with my niece and nephew before I had to say ggoodbye, when they past.
  • Andrew   Jul 14, 2014 5:41 PM
    As an MS club member myself, I can't tell you how much I appreciate your esqusite sentiments. I go weeks without ever thinking about the unknown and probable, full transition of this disease. Most times I feel like I'm completely normal and the outside preception is the same. However, when things are not normal, I get the distinct feeling that my friends and coworkers don't understand what I have to accept as 'the norm'. I will never give in to the possible reality of my condition. Thanks for sharing your situation, it reinvigorated my own fight!
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    marshina  Jul 14, 2014 5:58 PM
    Be grateful for the memories. I remember when I realized I couldn't hop up a step. My cousin asked me, "What are you, a rabbit?" Pay attention to what you can do, don't waste energy on what no longer is. Sounds like you are doing great. mm
  • Katie   Jul 14, 2014 6:02 PM
    Beautiful post Katie! You have pin pointed what so many of us with MS emotionally feel.
  • Carole   Jul 14, 2014 6:10 PM
    I was just thinking about how to tell people to appreciate all you have and not to take anything for granted...you said it beautifully! I was diagnosed 19 years ago when my boys were little. Very lucky to have a very supportive family, and although now it's difficult to walk, I still realize how lucky I am.
  • claire   Jul 14, 2014 6:43 PM
    I admit....I did not read the blog all the way through..but...the topic saying "goodbye"" means...saying"Hello"" to many other things...I know that is is hard to say good bye....however, saying hello is a marvelous thing...don't ruminate on what is not here...but instead...only what is here...what you can do....I know that it is not the same as yesterday....but it is here...something that you can do.....don't dwell on what is not here....only on what you can do....and do it
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    refusetoquit  Jul 14, 2014 7:08 PM
    In reading this blog and the comment's, my first thought is how I USED to have a calendar in my mind, documenting all the event's in my life according to the MS MOMENT'S...........all downer's. That's all there was,..........so it seemed. Alway's MAKING IT THROUGH each and every day..........no room for 'living', too busy surviving...........alone.My last recolection is my last BATH,......40th birthday, using bath crystal's my son got for me,.............in heaven, until I couldn't get out. The embarressment asking my son for help.

    The point I want to stress ..........it was the LAST 'downer' I noted in my mind's calendar. I WOKE UP TO WHAT I WAS DOING. ......that was 10 yrs ago. MS has helped me slow down and see the 'LITTLE' things, the POSITIVE things, not leaving room for useless thought processes anymore.

    Don't get me wrong, we all have our journey's, but know, there's something to be learned with each GOODBYE.
  • Tracey   Jul 14, 2014 7:57 PM
    I have lived with MS for over my life. I will be 49 this year and I was diagnosed at 22. Yes, there are some things I have said goodbye to. Skiing, running and high heels. Butt those things have been replaced by other activities. Fishing, growing wonderful gardens and as for wearing high heels, I an saving those for when I have to use a wheelchair. I am going to wear the cutest highest heels I can find. Since I won't have to walk in those uncomfortable things anyway
  • Gerri   Jul 14, 2014 9:37 PM
    Wonderful and inspiring thoughts! I'm 71 and have had MS since my early 20's and didn't know it. I found out in my mid 40's and although I've had some really trying days, I find thinking positive and planning fun things to do and keeping connected with friends and family, my energy returns and my mood is more joyful. Also the grand kids keep me going and make me do things I ordinarily can't do, but for some reason, I am able to find the inner strength to carry on. God has truly blessed me. He's made me realize that others are suffer greater than me. My fatigue is the worst part, as it slows me down. I rely on my faith to get me through and thus far it is working. God bless you and your family.
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    mitzy8401  Jul 14, 2014 9:50 PM
    Thank you! I REALLY needed to read this. Today was a bad day. Since I am on medical leave, I have been doing a lot of soul searching. This is my issue! I am feeling so scared, worried, lost, helpless. I feel stuck. I am thinking about MS and my future 24/7. I am letting this disease consume me. Sometimes, I have moments of clarity. Today was not one of them. Thank you for reminding me to say hello as I walk down my new path.
  • Jan Telman   Jul 14, 2014 10:08 PM
    Endings all had significant beginnings and my thoughts are, focusing on goodbys puts things in an emotionally sad and final state. My daughter, mother of two sets of twins and a beautiful wife. I celebrate each day as a new day to embark on with praise and gratitude for another new beginning. While not to miss life's joys, every person, regardless of health, should not be reckless with "moments"- "occasions"- "one of a kind" experiences, and treasure them.
    More finite is aging with no hope of modern science, to turn up a remedy against it, and must accept many endings- real - and anticipated because that is how aging is. Each child walked out of your care, on that one last day. However, they will walk back in as a new, self actualized, individual with a family of their own. Wearing heals or not wearing them will be a decision you carefully make one day in your closet--knowing balance wanes with age. But I have wonderful memories of wearing them-- pictures to prove it, and now darling grandchildren who wear them in their new world of make believe. It's ok-- to transition -- it's inevitable in all walks of life. My best to you! My.aging thoughts are not to look for endings, but to treasure every moment!
  • Meg   Jul 14, 2014 10:38 PM
    I never liked runnjng. Hated it. What I would not give now to run. You shared such truths. To hard to not focus on the MS. But after 10 years and heartbroken "lasts" I have passed, I love your words on the subject. Heels, outdoor Festivals (hello no seating!), sunbathing, runnjng, cycling, hiking... Thanks for this.
  • Angela   Jul 15, 2014 12:32 AM
    Hi All and to Katie our thanks

    How eloquently you have said, what many of us have thought, but have not known how to say

    Plus the positive thoughts of 'refusetoquit' and of others.
    It's not about what we can't do, but what we can do :o),
    as the saying goes 'when one door closes another one opens'

    If anyone gets the chance to try it may I commend 'mindfulness' a programme that includes concentrating on breathing, being 'in the present', mindful movement and meditation amongst other things.
    There are ways of accessing the programme, whatever level of mobility a user may have.

    Above all "you've got to accentuate the positive, eliminate the negative ...." as the song goes.

    Best wishes all
  • Erin   Jul 15, 2014 9:42 AM
    That was very beautiful. I was diagnosed with RRMS in June so 2000. I didn't tell anyone for a very long time because I didn't want to be treated with sympathy. I started doing the MS Challenge walk in San Diego shortly there after, so I had to tell people. I got mixed responses. Most were very supportive. So when I think about my MS I challenge it.

    This past year has been a tough one. Last summer my baby joined the ARMY and shortly after the New Year my sister passed away. I have never had a relapse like that before that lasted so long. I was scared but I made it through. I am doing the 50 mile MS Challenge walk again this year. I took the year off last year and wished I hadn't. When you can walk over 50 miles in 3 days you feel like you can do anything.

    Good luck to you
  • capitolcarol  Jul 15, 2014 10:13 AM
    Thank you Kate. You wrote down exactly what I was going through. I read your account with tears coming down my face. I was diagnosed in 2008 as secondary progressive. I certainly think about the many "last times" a lot and also the things I can't do now, but remember when I could. I wish I could and try to do new things because I know that soon I won't be able to do anything . Every day is a struggle. The few times I have gone out, struggling with crutches, with my husband at my side, I would get too many remarks that I look so different or I look like I am in a lot of pain. Unfortunately, this is what MS does. I am trying to stay positive and want to look forward to new "hellos" instead of dwelling on my cruel MS.
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    refusetoquit  Jul 15, 2014 11:53 AM
    hahaha.............THE SHOE THING.......lol...........I'm in a powerchair, I thought TOO shoes won't have to be comfey. My son got married last weekend.........I wore loose flats, by the end of the evening THEY hurt.....lack of circulation sitting in one spoat ALL day............haahaha, butyes, in general, shorter outing's will do..........had to smile reading the shoe comment's.
  • jim   Jul 16, 2014 7:10 PM
    I don't remember the last time I played soccer, but watching the world cup let me say hello again to the feeling I had when I played.
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    Sarahspeer  Jul 21, 2014 6:29 PM
    I loved your post. You are a wonderful writer and I so identified with what you said, my favorite quote is from Dr. Seuss. He says "Don't be sad for what you can't do, be happy for what you were able to do." That is easier said than done I think. For myself I miss my independence, being able to ride my bike, and playing tennis. I also miss walking my 2 pound puppies by myself. But I can go with my husband and I walk my little Brussels-griffon with my scooter and she goes "rabbit Spode"
  • Brad   Jul 26, 2014 1:32 PM
    My wife has suffered with MS for 32 of our 33 years of marriage. She has had many lasts, but we continue to search for firsts and have managed to find many. Of course, we remember her last steps and her last use of a fork or a toothbrush, but we also remember the first view of the Grand Canyon or the first sunset in Carmel Valley. May God bless you in your new journey for firsts!
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    downbythesea  Aug 6, 2014 3:08 PM
    Thank you Katie for putting into words exactly how I feel. I couldn't have said it as beautifully as you. The Goodbyes so far on my MS journey have been so hard to accept at times and the Hellos, like today's new Hello in my MS world was being taught how to self catheterise, haven't always been welcomed. Your blog has made me think about how I will continue live,not just with MS but everything else. I look forward to the future a little more now. Thank you once again, your words have made such a difference to me xxx💜
  • Melissa Dumond   Aug 27, 2015 11:27 AM
    Thank you so much for putting things in perspective. I really appreciated, and needed to read this.
  • zeny   Aug 27, 2015 11:49 AM
    Thank You for the beautiful article I have a M .S and I've been very emotional Feel scared and not knowing what my future holds oh how bad am I going to get I appreciate articles like this thank you again
  • Megan   Aug 27, 2015 11:58 AM
    Thank you for sharing your perspective. I do not like to talk about the bad days, or the things I cannot do any longer. I refuse to let this disease define me. There are days I am better at this than others. I feel very alone at times, and it helps to see I am truly not alone on this path. May your life continue to bless you.
  • Karen Southard   Aug 27, 2015 12:09 PM
    Thank you for this... I hung on so many sentences because it expressed how I have felt so many times.
  • Judy Erickson   Aug 27, 2015 12:31 PM
    Thank you for sharing. I jus t did something most of my friends and family thought I was crazy to do. A trip to Brazil to visit my brother and his wife. So glad I didn't let MS win.
  • Sam Clements   Aug 27, 2015 12:35 PM
    What a great read. I think it's so important for those of in the early stages of this journey to do so with an optimistic attitude; for ourselves, our families, and for those terrified by diagnosis.
    msweavingaway.wordpress.com
  • Julie Stanglein   Aug 27, 2015 2:08 PM
    thank you so much for this. This summer I found myself truly acknowledging the loss of summer gardening in Missouri, and realized I better start thinking about some indoor summer beginnings in summers to come! blessings to you!.
  • Mary Kate   Aug 27, 2015 2:48 PM
    I wrote something very similar to this on my facebook page inm March, for MS awareness week. But you said it so much better and added the beginnings. Some of my lasts were fast dancing, snapping my fingers and fashionable shoes. Thank you for this blog.
  • Lauren Hoffman   Aug 27, 2015 3:29 PM
    Beautifully written and painfully honest. I was diagnosed almost 26 year's ago. Each year I lose a little more but try new things and attempt to regain some of the skills/pleasures I've lost. You're so right in saying there are always new things to try, new mountains to climb albeit in andifferent way.
  • Lauren Hoffman   Aug 27, 2015 3:29 PM
    Beautifully written and painfully honest. I was diagnosed almost 26 year's ago. Each year I lose a little more but try new things and attempt to regain some of the skills/pleasures I've lost. You're so right in saying there are always new things to try, new mountains to climb albeit in andifferent way.
  • Lauren Hoffman   Aug 27, 2015 3:29 PM
    Beautifully written and painfully honest. I was diagnosed almost 26 year's ago. Each year I lose a little more but try new things and attempt to regain some of the skills/pleasures I've lost. You're so right in saying there are always new things to try, new mountains to climb albeit in andifferent way.
  • Bill Fodiak   Aug 27, 2015 4:10 PM
    The past is just a goodby....your blog has been enjoyable to read.
  • Tanya   Aug 27, 2015 4:18 PM
    You put into words exactly how I feel. I do grieve the losses but know it is ok to do so. Now I try to do as you & celebrate the new things. Many friends say I am so like a child experiencing things for the first time. These days I am slowed down & get excited about butterflies, falling stars, the amazing talent of a spider and a beautiful web I see. I wish I had celebrated all these sooner, but now I do!
    Thank you for such a great narrative of life with MS. Sending you love, light & healing.
  • Heather Snapp   Aug 27, 2015 7:12 PM
    I have secondary progressive MS that as taken away my ability to walk and has completely taken away my ability to control my bladder or bowels. Recently divorced and I a pretty depressed about the whole situation. I can't get emails right now but you can message me through Facebook. I could use as many positive thoughts as possible. Thanks for reading.
  • Heather Snapp   Aug 27, 2015 7:12 PM
    I have secondary progressive MS that as taken away my ability to walk and has completely taken away my ability to control my bladder or bowels. Recently divorced and I a pretty depressed about the whole situation. I can't get emails right now but you can message me through Facebook. I could use as many positive thoughts as possible. Thanks for reading.
  • Carrie   Aug 27, 2015 7:45 PM
    Beautifully written. I too have MS and your blog was very thought provoking. Thank you for sharing what so many of us think about as time goes by.
  • Kathleen   Aug 28, 2015 3:47 AM
    Beautifully said...I have going saying goodbye to many things lately, as you pointed out, also saying 'Hello' to new things too! Crocheting blankets for the handicap makes me feel productive!
  • Lori meyers   Aug 28, 2015 8:20 AM
    Beautifully written!! Sums it up fpr me!!
    Thank you....
  • kay Brosnan   Sep 9, 2015 7:15 PM
    Wow you hit the nail right on the head i was diagnosed last July 2014 with relapsing remitting ms and now have epelisy as well as losing sight in my right eye but saying all that i have an amazing partner for the past 13 years i have learnt to cherish every little moment the past six months and and just slow down not everything has to be done 100mph :)
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    ebdms  Jan 16, 2016 10:01 AM
    Beautifully written and expressed! Thank you.
  • Michelle Tavernier   Jun 3, 2016 9:58 AM
    I'm struggling with a goodbye I lost my mom she took her last breath on the 21st of May and my hearts broken and I live in her home where she pasts away so how do I recover from this?😭
  • Gayle  Jun 4, 2016 6:14 PM
    I cried. Thank you.
  • Jodie   Oct 28, 2017 6:42 PM
    The friends that whisper behind my back the way I couldn't handle the monster inside. Could they not see how much I needed them. For 2 years I hid but not anymore. Those friends are much sicker then me. I pray someday they will be cured . for the monster inside them is who they are.