The Last Laugh

My heart is in my stomach.
 
My mouth is dry and he’s standing there, almost bracing himself, scanning my face for a reaction.
 
But I am numb — not in the tingly MS way, but I’m briefly stunned, mentally and emotionally.
 
My husband has just revealed to me that a longtime friend of his, someone he trusted in moments of private human emotion, has likened me to a child and, further implied, a burden.
 
A burden.
 
My first instinct is to approach this, leading with my current emotional state and with the ferocity of Cujo, himself. Did this person really expect my husband to double over in fits of laughter at this “joke?” Would this person still have said that if my MS symptoms were more visible? At what point do hurtful “jokes” become off-limits? Does this person think I’m less human than everyone else? That I don’t mourn for my formal normalcy? That I don’t already sometimes feel like a weight on my husband’s shoulders, afraid that he might tire of this life and leave?
 
I’ve lived with diagnosed MS for just under three years and I am fortunate to be able to say that, aside from some mild inconvenient symptoms, I am able to ambulate, enunciate, urinate, and generally function without being affected too dramatically. But I do get fatigued. It’s an indescribable, crushing heaviness that I never knew could exist. Sometimes my daily allotted energy reserve is nearly depleted before I leave for work in the morning. In an effort to help conserve my energy, my amazing husband steps up when I cannot (and even if I can!) to run our household.
 
He is still human, however, and sometimes things get overwhelming and he seeks solace in friends. I encourage it.
 
I am so fortunate that my disease isn’t progressing at the rate that it does for some, but as stupid as the cruel attempt at “humor” was, it was still a reminder of the vast universe of unknowns and uncertainties that lie ahead. It was a reminder that, despite my mostly untouched mobility and clarity, I am still sick — even though I don’t look the part.
 
A burden.
 
There was no apology offered, nor a shred of remorse detected for making an unprovoked comment about my husband being my caretaker.
 
I should be livid.
 
But something strange happened in those moments following my husband sharing this information with me.
 
I took all of that flaming hot focus off of this person and instead, reined it in and directed it to the one who really deserves my energy: my husband, for not only being so hopelessly devoted to us every day, but for standing up to his friend on my behalf. On our behalf.
 
The reality is that MS will not beat us. I may not have chosen to share my life with MS, but my husband did. He chose me.
 
In moments of darkness, I urge you to remember your source of strength — whatever it is — and always hold it close to you. And you know what? Hold your caretakers close, too.
 
The vampires of this world may not always reveal themselves right away, wear a nametag, or emblazon it on a license plate, but they are thankfully few and far between. Sometimes people just don’t know any better.
 
So, I will teach them. I will show them.
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Cat

Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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    39 Comments

  • Allison   Apr 1, 2016 4:46 PM
    You're a better person than I. Just reading this felt like a kick in the stomach. Way to stay positive. I'm proud of you.
  • Susan Lesperance   Apr 1, 2016 4:49 PM
    Cat, you show the vampires of the world by teaching them and showing them every day what grace under the unique pressure of having and living with an invisible disease the true definition of bravery and courage. By your side, Rusty shows those same vampires the definition of devotion, unending love and support in the face of the unknown. Together you make a remarkable team...running into the future hand in hand...and knowing that your connection is a great and solid one. Well done to the both of you.
  • Debbie Deer   Apr 1, 2016 5:00 PM
    I was also diagnosed in 2013.. I know how you feel.. Sometimes I want to tell my fiance that he doesn't have to stay.. To go and have a normal life.. He just laughs at me... It's the inconsiderate people who pissed me off...
  • Tracy   Apr 1, 2016 5:09 PM
    It was perfect timing for me to read your article. I found out this week that word around town was spreading that my MS was getting worse just because I'm actively fundraising for the MS organization. Initially I was furious. I felt like all the doors and windows were slamming shut on me.
    Having MS has made me deal with losing things and things being out of my control. Frankly, I'm worn down from the losses. So I'm learning to hold on tighter.
    Like you, I will educate.
    I will show them.
    I am a fighter.
  • John Evans   Apr 1, 2016 5:20 PM
    Inspring story! Thank you. Surviving possibly toxic, hurtful moments with love.

    We have to also Be prepared with long-term, back-up plans.
    I've had MS for 25 years, been thru all the drugs until I said no more, after turning JCV+ and a post-treatment crash. Meanwhile, I'm the caretaker of my best friend and wife with SPMS. The fatigue is our major challenge. Crushing is absolutely how it hits.
    We have to foster resilience, to rise above what drags us down.
    When I think of resilience in the face of ongoing tragedy, I'm inspired by Jackie Kennedy , who said in a late-life interview, when asked her proudest achievement in life?

    Keeping my sanity. Or words to that effect. It applies here, I think.
  • Mary Jo   Apr 1, 2016 5:21 PM
    I have fibramyalga and peripheral nueropathy. One of my best friends has MS and one has lupus (also this friend just just finished chemo for best cancer). We are all under the age of 40. I can not express enough thank yous for putting these feelings into words. We call them the invisible diseases. Because, even friends, don't get how sick we are. They think because they don't see it on outside, it must not be that bad. They say hurtful things, especially, "but you don't look sick". I truly believe they don't mean any harm, but it still hurts. Thanks again for so accurately depicting how we feel.
  • Jona Crowley   Apr 1, 2016 5:27 PM
    I too was diagnosed in 2013. Your words touched my heart and soul. Bless you always.
  • Mary lea   Apr 1, 2016 5:56 PM
    I was diagnosed in 2013 as well and my MS hasn't affected too much of my daily life, except, like you, I am exhausted. I recently had my Doc write me an Rx for a handicap placard. I held onto that thing for such along time, unable to bring myself to use it....until one day when trying to get to the grocery store I did not have the energy to walk the parking lot. I move slowly but do not show outward signs of my disease. I dare anybody to question why I am using a handicapped sticker. How terrible for this 'friend' to be so thoughtless. You are certainly blessed, your husband is a true champion. I am also blessed and never forget that he is wonderful....
  • Kalara   Apr 1, 2016 5:59 PM
    Beautifully written and expressed, dear one. I am sorry this happened to you. I once told my husband that he should run before I become a burden. His reply: "You do not get to make that choice for me". So thankful for my rock, my partner, my love.
  • Robyn   Apr 1, 2016 6:00 PM
    I am still waiting for a diagnosis, which is frustrating, and your story hits home for me. Thank you for sharing, inspiring, and lifting people up!
  • Linda Damrow   Apr 1, 2016 6:06 PM
    Some where along the way, in the middle of a family that various members needed my caretaking abilities for Crohn's Disease, Depression, Fibro and Bipolar Disorder God decided, for the heck of it, to throw MS in the mix. I was diagnosed almost 8 years ago but probably had it for a couple of years before that. And here I was thinking that I was just going older really, really badly. Yay, I'm not! Boo hiss, I have MS. Is my family understanding and supportive of me? Not all the time, sometimes they're just busy dealing with they're own health issues. Is it overwhelming sometimes having to be a caregiver when you have your own health issues to deal with? Diffently! And when that happens I sometimes get upset and angry about the various curve balls that have been pitched our way. That's when I tell myself that it could be worse and thank God that it's not. I manage to make through every day, maybe not as well as I used to, but I still make it through. And for that I am grateful as well as for whatever support and aid I am given.
  • Sally Kuhlman   Apr 1, 2016 7:38 PM
    Cat, you have chosen to take the high road; and I'm happy you have made that decision. Many people do not understand invisible illnesses. If they can't see you suffer, you must not be ill. Saying you are a burden to your loved one(s) shows ignorance on their part. You and Rusty are showing your loved ones and friends what commitment and love is all about. I had that in my life; and believe me, we conquered the invisible illness with knowledge, strength, and courage. Sometimes, it takes a while for people open their eyes and see the whole picture. You are just the right person to open their eyes with compassion and knowledge. Proud of you and sending my love tonight and always. xoxo
  • Amanda   Apr 1, 2016 8:05 PM
    I am proud of you. I was diagnosed for just over 5 years. I'm 22 and blogs like yours really do help me through my days so I thank you for sharing your strength.
  • Christine   Apr 2, 2016 1:47 AM
    You show them, girl! It's never nice to say things like that to someone about someone they love. It's could be any one of us any day for many reasons. You do the best you can, till death do us part, hopefully. Prayers for a cure for anyone struggling!
  • Lynne K   Apr 2, 2016 5:55 AM
    Well said. You've touched on several points that I have experienced, quietly pondered and verbally expressed. Thank you for your insightful words!!
  • Katrina   Apr 2, 2016 6:36 AM
    Beautifully spoken. You're very lucky to have a caretaker.
  • Pamela   Apr 2, 2016 7:50 AM
    Wow! What a wonderful and enlightening way to turn it around. Kudos to you! I have had MS since 2005 and like you are very fortunate. I do not have a husband to take care of me but have wonderful family and friends. There HAVE been times when others question my illness because I appear to function quite normally. At times I wish that when I felt ill I would get a boil on my face or something so people would know. At other times I am thankful that it doesn't show. Either way I deal and I will keep dealing. Thank you for brightening my perspective on this beautiful day!!
  • Traci moore   Apr 2, 2016 8:48 AM
    Thank you, sometimes I gets to caught up in the disease, and pain. You are so right!
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    JimTurk  Apr 2, 2016 9:33 AM
    Nice piece, Cat. Sometimes we put so much effort into being offended by what people say that we ignore the fact that our loved ones may be doing the same thing :).
  • katie camidge   Apr 2, 2016 10:10 AM
    I too have endured criticism from family who think well just because I am able to walk or do normal things that I am not ill that it must all be me, I don't know how to respond to them. It angers me to think that if i was to that point in my progression what would they say then.
  • lantzsunny2007  Apr 2, 2016 12:15 PM
    thank you for this.
    your description of fatigue is how i feel almost all the time.
    my husband is my best friend and helps me along the way. i feel a burden to him, yet he sees it differently.
    i try to remind myself everyday that i am blessed with this great man who loves me, doesn't leave me despite i sometimes tell him he'd be better off, cares and supports me.
    i am thankful for him and my children who don't blame me for things i can't do.
    i hate this disease and want it to go away.
  • Tanya Reimann   Apr 2, 2016 1:45 PM
    I have been diagnosed for 4 years. Thankfully, I too are able to do the things that you do also. When I relapse though I become a walking disaster, walking into walls and corners and my mind goes into a slow mode. I end up with bruises everywhere and I never remember which bruise came from what. I also have difficulty with speech and in these moment's I hide from the world, my family and friends. I do not have the ability to explain what I am trying to say. I just stop. I am tired all the time and fatigued for the rest. I know my family and friends love me and are supportive in anything I do. I am lucky to have them and my partner who knows when I'm not at my best and tries to make my life a little bit easier for me.
    Thank you for your story.. you are truly inspiring
  • Avatar
    RedSticks  Apr 2, 2016 4:20 PM
    As much as it was wrong of that person to say their comment, it made you realize something. It made us all realize something from your post. to appreciate those closest to us to help us out and to find that inner strength to press on. As much as it was wrong it did bring good. I hope we all realize that even bad things can bring good into the world.
  • John   Apr 2, 2016 5:12 PM
    I was diagnosed 2010. I am 35 years old and I have been in a wheelchair for3 years. I used to live a very active lifestyle snowboarding camping etc. I was told I had relapsing-remitting MS but I haven't seen any sign of remission. My Neuro says that's what I have because he can tell from the MRIs. Tired missing out on things. I just want to walk again.
  • Alesia   Apr 2, 2016 8:09 PM
    I enjoyed this article! Thank you for sharing such raw and real details !
  • Alesia   Apr 2, 2016 8:17 PM
    I wanted to share with your readers - that there has been promising breakthroughs with HSCT by Dr Richard Burt at Northwestern University Hospital in Chicago . Google the articles on the amazing results. Also I have found a 100% Gluten Free diet greatly improved the overwhelming MS Fatigue. #weneedacure
  • Jeanetta Kovachevich   Apr 3, 2016 4:01 AM
    I am almost 60 years old and have had symptoms for 2/3's of my life and diagnosed for 30. My husband chose to marry me three years after being diagnosed. He was always supportive and caring. After a fall combined with a MS flare, he did almost everything for me, cooking, cleaning, laundry, even washing my hair. Fortunately I recovered. Please know that just because MS can cause many problems doesn't mean that it will. Be proactive with your health.
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    oldhippie  Apr 4, 2016 9:24 AM
    Can I join in? I too was diagnosed in the first part of 2013 with RRMS and then in March 2014 rediagnosed with PPMS and this has brought me to knees many times in the past two and a half years. I can only stand and Applaud you for standing firmly with your Husband at your side and showing that "yes you hurt me, but you will not defeat us" the us is what the vampires of the world can not stop.
    I as well have my caretaker on my side, think about it I have two, my wife who has always been there and my 14teen year old daughter who without really knowing it inspires me to keep on-keeping on. At times I know I am wearing them down and fill lost, but they have never left me.
    What you have ever so Gracefully put into words should be read by everyone, no matter weather they themselves or someone they know suffers from an invisible illness.
  • harconan  Apr 6, 2016 4:53 PM
    Hello I'm new to this site. However I understand the rage I get from dumb people whose words scorn and undermine our disease. My wonderful wife has been with me through it all even though she doesn't think so she's my rock. She was told people could will themselfs better and she went off on that person. So I too understand. Thank you for your post.
  • Debra K. Tiegreen   Apr 9, 2016 5:38 PM
    Thanks for doing this. Many people who do not have MS or know someone with MS have difficulty understanding it or some of the symptoms, when you look OK. When you walk with a cane, or are in a wheelchair, that does not necessarily mean you are incompetent, etc.
  • Karin   Apr 11, 2016 6:36 PM
    Great post! Sometimes people just don't know what to say. Also, sometimes people are just morons.

    You're very lucky and you have a great husband who thinks the world of you and loves you as much as he does. But know, as much as he does for you, you do for him too. You two make a great team.

    xoxo
  • Kathleen   Apr 26, 2016 10:46 AM
    I don't have a caregiver but a wonderful support system. In my opinion, as long as you have a "positive attitude" you can accomplish anything. I've had MS for 18 years and yes my life has changed but I don't feel sorry for myself. There's always somebody that has something negative to say - don't listen or pay attention to them
  • Avatar
    traceyfm  Apr 26, 2016 12:10 PM
    I understand and share your frustration. Back when my symptoms were " invisible" I had some of the same issues. And, I was lucky too. My MS was just beginning when we met, but he knew it and still stuck by me and married me. Your article, for me, is a great reminder that I have to thank him and God every single day. Thank you, and blog on!
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    katiesnana  Apr 26, 2016 8:59 PM
    I so appreciated your ability to put into words what I have never been able to do. You are so blessed. I too have a husband who knew about my diagnosis when we started dating, We have now been married for 23 years. I have had MS since 1985 and until 1992 was blessed not to have had any major problems with it until then. MS has taken and continued to take so much of what I enjoyed doing but I pray it will never defeat me. I have a wonderful husband who has had to take over a lot of the responsibility that were once mine and he does it without complaint. I have also been blessed with the ability to laugh in the most difficult circumstances but have found it more difficult to translate that to the MS. Thank you so much for sharing your thoughts and I thank the Lord for sending me to your blog. Your attitude is what is going to save you when the going gets tough.
  • kdmathison  Apr 27, 2016 2:12 AM
    You are so very much more strong and controlled than I am. I would have been mad at my husband to and let him have it for not defending me/us. However, you turn into something positive. I'm not to the that point. I would have just let have it. Kudos to you for being such a positive person. God Bless.
  • Tisha   Apr 28, 2016 1:23 PM
    Thank you for that little bit of insight into your life. I don't know how many times I have felt the same way you just described, and all you can do is hold your head up and move on. You are very lucky to have a husband to stand by your side like that. I have some close friends that are my support system. And they are so valuable in our MS lives.
  • EJ_Jaxon  May 31, 2016 10:20 PM
    People can be toxic regardless of the situation. I dont know where they get the nerve to say such things. My mom taught me when I was a kid "Everything on your mind shouldnt come out of your mouth". Whenever somebody says something idiotic to me about MS, I whip out my mothers quote. Shuts them up every time. We have enough to worry about on a daily basis and have to stay strong and positive. These people get a hang nail and are looking for comfort. :-). Cat you did great. Keep up the good work.
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    DrMak07  Jun 6, 2016 12:15 PM
    You are lucky. My husband regularly implies and states that he finds helping me stressful and burdensome. Like you, I am mostly able to care for myself. I usually require less than 30 minutes of help each day from my entire family combined. Yet he says it and repeats it, often.

    To make sure it sticks with me, he says that he's not trying to be hurtful; he's just telling it like it is.

    My feeling of being sucker punched never goes away.
  • Leana Conway   Apr 24, 2018 10:49 AM
    Kat, you are not a burden and you are not the disease your body has. In many ways I fell in love with my husband because of his MS, and the sea of changes and growth it brought about. https://leanaconway.blog/2017/10/09/9-publish-mine-and-dennis-love-story/