Marriage & MS: The Ultimate Relationship Exam

Marriage & MS: The Ultimate Relationship Exam

So I’m sitting here, just flabbergasted that it’s happened again. For the third time in just this month, a fellow MS Warrior has confided in me that their significant other is leaving them because of their disease. This is not a new occurrence, I’ve had many people reach out to me with similar stories, particularly after I wrote about my own experience with the subject. Many platforms are quick to share stories of wonderful relationships that endure despite MS, but it’s clear that many times, things go a different way. In fact, every breakup that I’ve heard about was often a “solid” relationship until it wasn’t. Being the partner of someone with MS, especially as the disease progresses, isn’t for everyone. A chronic illness is the ultimate test of a relationship, a test that not all will pass. I’m here to remind you that it’s ok when this happens, that you aren’t alone, and that life is far from over if that test fails.

In sickness and in…

When it comes to marriage, people are quick to point out vows, and how they often explicitly mention this scenario. It’s right there right? “In sickness and in health” A vow is forever, right? Well, yes, that’s the idea. But in practice, it doesn’t always work out that way. Let’s face it, a lot of people break vows. I’m not saying that’s ok, I’m just pointing out the reality. No matter how much you believe in vows, you can’t always be prepared for what it takes to be with someone with a chronic illness. When you take those vows, your intentions may be great, but you simply can’t understand what life might be like. How many people have been tough guys during training but have gone to war and were suddenly not-so-tough once the bullets started flying? I’m guessing many. It’s always easy to point to vows and say, “but hey, they promised”. The truth is, none of us can say what we’d do in that situation. Many of you are saying, “oh, I’d stay by them, I’d stick to my vow”. Well, yea, I say that too, but, I also know that, until I’m in that situation, I can’t really be sure what I would do.

It’s not for everyone

Living with a chronic illness like MS is very hard. Despite all of the pain and problems I have, I would say it is much harder to be on the other side. I have some experience: my grandfather had MS and my family cared for him. It’s not easy to witness someone you care about having increasing difficulty. I simply can’t imagine if I had a significant other who was struck by disease. I’ve always been happy that I’m the one who had the disease, because I can’t bear the thought of someone I love having it. I can’t imagine what that would do to me. I can’t imagine the frustration and sorrow that would cause me. It would eat me up inside. Watching someone we love change so much, it’s painful, it wears out your soul. That’s something to remember when we judge those who leave us. Some people can’t handle that level of sorrow, that level of helplessness. Everyone has a limit.

Of course, there are those that also can’t handle the logistical part of being with someone with a chronic illness. It’s a lot of work for a partner. You have to do more, run more errands, do more housework, be on top of everything. It’s hard, very hard. That level of work will wear some people out. Not everyone is capable of being a caregiver, the best caregivers are among the hardest working people in this world. So much work, with all of those aforementioned emotional struggles on top of it. Caregivers are the real heroes of chronic illness and we don’t do enough to acknowledge that. Anyone who has witnessed it, really lived with and helped out with someone who needs care, you know that it is almost impossible work.

The final exam

A relationship is a series of tests, if you make it till “death do us part” then maybe you’ve passed. If you don’t, well, time to change majors I guess. Having your significant other have a chronic illness (and really have some progression) seems like the biggest final test to me. It’s among the hardest tests anyway, and not everyone will pass. No matter how long they’ve been studying that subject, some people aren’t cut out for it. It sucks when they fail, especially when you’ve been with them for a very long time. The thing is, not every relationship gets that test. People will live their whole lives together without a true test like that. For those that get the test of chronic illness and get through it with their partner, well, they know something many don’t. Theirs is a love that can stand the test of time. So many people will never know that, they’ll never know what their partner will really do when that “in sickness and health” exam comes along.

It’s not the end

When our loved ones leave us because of our illness, it’s hard. It’s baffling. How can this happen? All those years, were they wasted? What’s so bad about me? Did they ever really love me?  I’ve been through it, I know. Even understanding it, I still have times where I feel like garbage because of it. It feels like there can be no bigger betrayal, but it also makes you feel low, so low. There’s being broken up with, and then there’s being left because of your disease. Something you’re always fighting, something you can’t change. It’s so easy to think, “well, no one will ever pass that chronic illness test, no one will ever want me, I’m not good enough”.

That’s not true though, because many people pass that exam, all the time. I see all sides, for every person that can’t handle being with someone with chronic illness, there are those that can. I always think of a man named Teddy, who is active on our forums, and how he dealt with his fiancee. How, no matter how difficult it was, he was there for her, all the way to the end. People like Teddy exist, they’re out there. Real love exists. I’m a little bit of a romantic, I don’t believe in a god, but I very much believe in love. We can all find love. Our journey to finding it may not go the way we expected, but I believe we can all find it. We can all find our Teddy, the person who not only loves us but can handle the rigors of chronic illness. The person that loves us no matter what. Maybe I’m naive, maybe I’m foolish, but I believe love is out there for all of us, no matter what our condition.

Thanks so much for reading!

Devin

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Comments

View Comments (46)
  • Diomed1
    6 months ago

    Thank you so much for writing this. My husband couldn’t handle my disease, which has had me deeply depressed since my dx. 7 years! I just realized this now myself. Now, I am helping myself and fighting. That’s all I can do. I will miss him but as hard as he tried, he wasn’t the right person for me. I will be OK!

  • Devin Garlit moderator author
    6 months ago

    Thank you Diomed1! Remember, you’ll be OK and in the long run, you will be much better off!

  • sevensix
    6 months ago

    Two weeks before we married I gave her an out: free to leave because of my dx. She said I’m staying in. That was 35 years ago.

  • Devin Garlit moderator author
    6 months ago

    Happy to hear that sevensix!

  • pun-kin
    9 months ago

    After I was diagnosed I started dating a guy, a guy that in my heart I knew was the wrong guy. My family had tried to put me in a bubble to protect me from my future with MS. It seemed that my MS was the only topic of conversation. When I was with “Mike” my MS did not exist, we didn’t talk about it, when I relapsed my family was there to care for me. “Mike” asked me to marry him and I said “yes”. It wasn’t until after our wedding, a major relapse, the birth of our son and “Mike” leaving because “he didn’t sign up to take care of me and our son” did I realize why I had chosen the wrong path. One, I was running. As long as I was with him, my MS disappeared. Two, he had convinced me that I was broken and damaged goods and no other man would ever love me or want me. He became physically abusive to me but the mental and emotional abuse is something that still haunts me 26 years later. I walked down the aisle on my daddy’s arm knowing I was doing the wrong thing but hoping I could change him into a caring, loving family man. It was a relief when he left but I was devastated because my marriage vows were sacred to me. My son was 2 1/2 when he left and when he was almost 5 I met the man whose has been there “in sickness and in health” for the past 19 years. My illness has been progressively getting worse over the past 5 years and I have begged my now husband to leave and find happiness with someone who can share his life. He won’t hear of my request. He reminds me that right before our wedding he told me that MS was part of me and he had to love the MS because he loved me, not just parts of me, but my whole being. I will not say that it’s been an easy road because now he is in the caretaker role and also shoulders all of the household duties as well as holding down a highly stressed white collar job that involves frequent travel. He never complains even though I know he is exhausted at times. I know that watching me lose my independence has been very difficult for him. He’s a fixer and he wants to fix me. He relies on his very strong faith to get us through. I’m lucky that he loves me but I feel guilty for the fact that he deserves so much more.

  • Devin Garlit moderator author
    8 months ago

    Thanks so much pun-kin, really appreciate you sharing your story. It’s a fantastic reminder that even though we may be with the wrong person, we can all still find the right one!

  • newwifeycruz16
    10 months ago

    Unfortunately, I’ve been w a few men who couldn’t deal w my having MS and left. Then I had a man who could deal, but mentally n physically beat me up. 2yrs later I met Joey who not only accepted me w MS, but also wanted to marry me. He is now my husband. This man would walk to the ends of the Earth for me, just to make me happy. I could never imagine life without him in it. My point is, it isn’t crazy to think that one day someone will accept you along w your disease n love you passionately.

  • Devin Garlit moderator author
    9 months ago

    Thank you newwifeycruz16! Appreciate you sharing your story!

  • ASAPcindy
    10 months ago

    What do you do when you are the one who wants out? I’m married 30+ years to a great guy, but I’m not the partner I want to be. I get accused (and not just by him) by being obsessed with my ms. I can’t help putting it first. It determines how my day is gonna go. I am past the point of feeling guilty because I drop the ball. I just really want some peace and quiet. A healthy marriage requires a lot of work. Living with chronic illness is a full time job. I don’t have the energy for both and I think my husband deserves better.

  • Devin Garlit moderator author
    10 months ago

    Thank you ASAPcindy, so sorry to hear of your situation. I completely understand how you feel. I think if you are unhappy, you should talk to him, or consider talking to a couple’s counselor, who can help facilitate the conversation.

  • Happy Go Lucky
    10 months ago

    I want to tell a story that always brings a tear to my eye: When my daughter was three and my son was eight, I was hit with the mother of exacerbations. I could barely walk from my bed to the bathroom, I had horrible tremors that sometimes caused me to flail my arms. My whole body shook, especially my limbs. I lost almost all of my coordination and I was for the most part useless. I had nurses coming in and out of the house to give me I.V.s and my husband found a horrible old wheelchair that he borrowed. What did we know? wheelchairs were a whole new world for us. Dave, (my husband) had just started teaching at a new school and it wasn’t going well with the administrator. My sister came up to help, as did my parents. I had a moment of clarity and practicality, I thought.

    When my husband and I were alone one night, I told him that I had to walk this road, but he didn’t. His first response was to be offended. I went on to talk about how I could live in a small apartment close by and the children live in our house with him. He kept trying to interrupt, but when I was determined to go on with my plan, he heard me out.

    Then he responded, “I would rather spend the rest of my life with a handicapped you, then with anyone else in the world”

    Our children are now twenty-one and twenty-five and we are still together. Life is different than we had planned, but it’s not bad either.

  • Nancy W
    11 months ago

    Tim and I have been married for 43 years. We got married right out of high school,and consider ourselves very lucky that our love has endured.We did not realize it at the time but our parents examples prepared us for our future with chronic illnesses.

    You see, both our sets of parents has to deal with chronic illnesses when we were children. My father had polio as a child and walked on crutches his whole life til he finally had to be In The chair in his 70s. My mother-in-law has an aneurysm burst when she was in labor with my husband. She was weak on one side of her body throughout my husband’s life. So we had good examples on how to deal with this.

    That said, I have been fortunate to have ‘invisible’ MS. My mobility is still good and I do most of the cooking and laundry. One of the biggest supports from my husband is the fact that I am not lonely. He is my best friend and companion. I stopped working 11years ago, but he still works. When, I have been home all day, it is good when he comes home and we talk and share the simple pleasure of having dinner together.

  • Devin Garlit moderator author
    10 months ago

    Thanks so much Nancy W and MarianneM, very much appreciate you all sharing your experience. Having a supportive significant other can make a massive difference.

  • MarianneM
    11 months ago

    I love the “invisible MS” tag. I also do well with my MS and my Neurologist calls my MS benign. I pray I continue to do well I have a supportive husband. I do all I did before I was diagnosed but probably take many more breaks due to fatigue.

  • rolly
    11 months ago

    thanks for sharing this, devin. your article struck a cord with me.
    yes, when we say our wedding vows, we promise to love each other in sickness and in health. few of us anticipate that this promise might actually be tested long before we reach old age because of something like ms.
    you wrote that you have always been happy that you are the one with the disease and not your partner. i feel the same. i feel that i could not bear the thought of my wife being the one with ms instead of me, gradually losing the ability to walk, to take care of oneself and to go through all that pain. and for me to be in her shoes. i simply dont know how i would cope. whether i could cope. i believe she can cope better as the carer than i could. i dont know whether that is because women may be the better carers. maybe they are.

  • Devin Garlit moderator author
    10 months ago

    Thanks so much rolly!

  • DeniseC
    11 months ago

    Thank you for sharing on this.

    How to be graceful through your disability

    I married my husband several years since being diagnosed. It has been the last 2 years that have been so challenging. I have been trying to make sure that my fears and concerns don’t get in the way but it is hard when you are in constant pain not to share.

    It is difficult when you need to be in separate rooms because your nocturnal spasticity keeps you up at night…and them. How can you keep your relationship amourous when you are challenged with mobility.

    I want to keep our relationship as normal as possible but there doesn’t seem to be a book on when and when not to share. I watch as he puts on my shoes, pulls out my wheelchair, folds up my walking frame, picks up all the things that fall on the ground, or turns on the air con as he can see it is too hot.

    I wonder through the angst of the inknown how to keep that positive spin on things so that we have a cracking good time,keeping our friends and our relationship in a fun and positive space so that we take away fond memories for the future.

  • Devin Garlit moderator author
    10 months ago

    Thank you DeniseC! I very much understand your concern and fears. It’s hard to know when not to share. It’s ok to share though, it;s ok to be honest. I think if you talk with your significant other and have an open dialog about such things, it can make all the difference. I think a lot of burdens only truly become burdens if we think of them that way.

  • SallyM
    11 months ago

    I left my unhappy crabby husband a decade ago. After a few years on my own, I met my partner and we are loving life. Yes. I have MS and I realized I needed to take care of me. Life is good!!!

  • Erin Rush moderator
    11 months ago

    I am glad you have found a good life with your partner, SallyM! Best, Erin, MultipleSclerosis.net Team Member.

  • Julie
    11 months ago

    My husband left after 30 years of marriage stating he “couldn’t deal with my MS anymore”. It was a complete shock to me and I honestly thought there had to be underlying problems. It couldn’t just be the MS.

    11 years later I’m still not sure what to think of what happened to my marriage. He has told our daughter he regrets how he treated me but I have never received a “sorry” from him. I no longer expect one.

    I nursed him through a major car wreck in his late 20’s and a heart attack not long after that. I suppose I thought he would reciprocate. I have no idea why some keep their vows and others don’t.

    I dated for a while after my divorce but am no longer interested. Maybe I don’t trust, maybe I don’t think anyone in their right mind would take on a person with a chronic illness. I have to say when I dated I was very surprised at men who said it didn’t matter. Only one or 2 said I should be at home taking care of myself. LOL, I guess maybe we all should be hermits, right?

  • paulinuk
    9 months ago

    Have a big HUG

  • Erin Rush moderator
    11 months ago

    I am sorry you had to go through this, Julie. As you can see by the comments, you are not alone! Sadly, many marriages just crack under the strain of chronic illness. I hope your life is full and satisfying, whether you have a partner or not. Thank you for sharing your story! Best, Erin, MultipleSclerosis.net Team member.

  • nenebird
    11 months ago

    My marriage also ended after 22 years. MS is just too much for alot of partners. Stats I have seen are about 60% of partnerships are abandoned when one is chronically ill. For my situation, it was a blessing in disguise. As I had a ‘fair weather’ partner. Life is easier for me going solo. I deeply regret the pain that the breakup caused my kids but i did everything i could to cushion the blow. Sometimes shit just happens. But you can rebuild your life. I did. Grateful every day I am not tied to my former spouse.

  • Erin Rush moderator
    11 months ago

    I am glad you have found the silver lining in your situation, nenebird (sorry if that reads a bit Pollyanna). Life can be easier when you can make all of the decisions on your own. I think people can learn they are so much stronger than they thought when faced like situations like this. Thank you for sharing. Best, Erin, MultipleSclerosis.net Team Member.

  • Deb
    11 months ago

    Well this article hit very close to home, my ex husband left me after my diagnosis
    Told me I was unlovable, I’ve been praying, trying to manifest & wishing I could meet someone kind & caring. I don’t want to give up so I have to believe. I’m fighting my disability gym & full time work everyday. Thanks for the article, gave me hope. I like to read this site.

  • Erin Rush moderator
    11 months ago

    I am sorry your husband was not able to stand by your side. I am glad you are fighting to stay healthy and live a full life! And I do hope you can find the special person that can love and support you just as you are. Thank you for sharing. Best, Erin, MultipleSclerosis.net Team Member.

  • magoof
    11 months ago

    I thought I had seen it all until recently when I had to break up with my fiance. I have PPMS and have for several years, I had it when I met my ex.
    She was very supportive the first few months, but then began displaying many of the same symptoms that I have. After many different doctors and tests, I’ll just make a long story short, she was just mimicking my disease for sympathy and attention, which I hate. And a reason to steal my pain meds which her doctor would not give her. After a heart attack that is tough to mimic she was trying to, that’s when I finally said enough. As she was moving out she finally admitted what she had been doing and tried to blame it on me! When you think you know someone, be careful!

  • grizz951
    11 months ago

    I am a little shocked to read that you believe in love but not in God but I guess that is another subject completely. I believe that these days its easier for people just to move on years ago it would be unheard of for someone to pretty much abandon a person a time when the Vows you speak of really meant something And folks weren’t so quick to walk away. I believe that you just dont abandon someone cause the grass is greener on the other side of the fence. If you tell someone you have their back you better damn well have it. Just opinion of old school guy

  • Marlene1105
    11 months ago

    I completely know how you feel! I was diagnosed in November 2004. At first my family was real supportive; sent cards, flowers and called on a regular basis. As the disease progressed; unfortunately, this changed. I get accused of using my MS for not participating in family functions. As you all can relate I am sure, there are days that I just don’t feel good; tired, overactive active bladder, don’t like to drive because I can’t see at night and/or my right foot is numb. If I speak up about how I am feeling, I get accused of yelling or raising my voice. A good example of double standards, it is OK when they raise their voice at me but I better keep my mouth shut. Putting me in a retirement home has been brought up several times and they wonder why I don’t want to attend their family gatherings?
    If the shoe was on the other foot, it would be entirely different! My family gets together and goes on vacations and try and hide it from me; however, I always find out by seeing photos and/or by over hearing their vacation stories which is very cruel and sad. I am at the point now that I try and not worry about any of this! Some day I will be gone and hopefully, I will be missed!

  • Jan
    11 months ago

    This is the second post I have read. I ended up somehow jumping over here because Cohen’s blog has been down, and one MS blog is the only MS thing that I do. And it was another post of yours that I appreciated reading.

    I have been dealing with MS for almost 13 years, no DMD meds ever. I can assure you it is not easy with SPMS—I exercise by swimming. The swimming is the relatively easy part; it’s the before and after that isn’t so easy.

    And I do most of what I need to do, including some part-time work but cannot work full-time as we had planned. I think it is hard for others to watch in some ways—I just soldier on as best as I am able. Do notice that I said the word, “hard,” not “harder.” Mine involves pain, and I am sort of a Lyrica commercial but without any of those meds.

    I suppose what helps me personally is that I just don’t think too deeply about MS; I just do as I’m able. It is far more daunting when I think about it and all of the losses, from walking to cycling to skating to outings to oh so many things, so I just do what I can. But I will say that being realistic and reading your blog such as this can be helpful.

    This also reminds me that there are many people along my path who are challenged and struggling in various ways of their own, independent of MS. The upside is that MS gives me a different perspective on true empathy.

    Life is not so easy, and I think your take on understanding why people can’t handle it was good to read to have an understanding. I may have one big health issue, but I’m still capable of helping somebody else emotionally anyway with what goes on in someone else’s life.

  • Devin Garlit moderator author
    10 months ago

    Thanks so much Jan, very much appreciate you reading and sharing your perspective!

  • WalterTHIII
    11 months ago

    While I totally appreciate this article, I feel I must add MY little slice. Waaay back in 1998, my wife and I were wed. We took the same vows, ’till death do us part’. In 2000 we were sitting in my neurologists office while he told us I had MS! We honestly knew nothing about it, kept thinking it was that disease Jerry is always raising money for, (obviously wasn’t that). Anyway, as he was delivering the bad news, I turned to my wife and told he that if she wanted to leave me, I’d never hold it against her sine it was never my intention for her to marry a SICK man.
    I nearly cried when she told me I wasn’t getting rid of her that easily, ’til death do us part’ was her vow and she took that seriously.
    Several years later, in the hospital from a heart attack, I gave her the same speech, Ingot the same answer.
    Now, she has been DX’d with Parkinson’s and now the shoe is on the other foot!
    We plan on surviving this the same way that got us this far, on our knees before God. At the very least, God has kept us together.
    Now I am not saying it was ‘easy’, but an ‘easy’ life isn’t what we were promised. We were only promised that He would stand there with us when we were weak.
    Thank God that has ever been the case!

  • MarianneM
    11 months ago

    Walter, I ended up in the same position. I was the one with RRMS and my husband after 23 years together decided to have an affair. Was it the MS or a midlife crisis, I will never know but I forgave him. Even though the trust in our relationship was gone as well as my self esteem, I almost decided to separated from him for awhile when he was diagnosed with stage 4 throat cancer. He had made a remark years prior at a family function that if you ever get sick you want Marianne on your team as she is the best caregiver. I had taken care of both my parents, a handicapped sister and my twin brother before they passed. Well those words came to pass as I became his caregiver till he passed away at home. I was there “till death do we part” and our relationship those last months were bittersweet. He became once again that loving man I had married 26 years ago. I am glad I was there for him as those memories of his last months are with me forever.

  • Erin Rush moderator
    11 months ago

    Thank you very much for sharing your story, Walter! It’s good to read that some relationships endure, despite serious health conditions. What a beautiful love story and a testament to how love *should* be. Not easy. Not pretty. Not fair. But tough, enduring, and everlasting. May you and your wife have many years to enjoy each other’s company. Thank you again for sharing! Best, Erin, MultipleSclerosis.net Team Member.

  • D-bob
    11 months ago

    My wife left me because “I could no longer participate in the future she wants” (her exact words)
    That was 9 yrs ago an I am no longer able to trust anyone. I have now progressed into SPMS and, for all intents and purposes, I am an urban hermit. I avoid human contact as much as possible. Now that everything can be delivered, it’s easy to maintain my solitude. The only time I have to see anybody is when I have a Dr. appt and I try to have as few of those as possible.
    I will never let anybody get close enough to hurt me like that again.

  • Devin Garlit moderator author
    10 months ago

    I’m so very sorry to hear that D-bob. Many of us have met people that couldn’t be what we needed or even what we wanted, we’ve had our ability to trust comprised so much that it seems impossible to trust again. I still think that there are trustworthy people out there. As much as the potential pain can be, the potential for finding someone worthy is just to great, in my opinion.

  • Dimitri
    11 months ago

    I read somewhere that there are cemeteries of careers that MS has created. We should add that there are cemeteries of relationships that MS has created.

    I think the ultimate slap in the face is the lets still be friends line. I’ve been there and it runs contrary to everything my psychologist tells me about moving on.

  • Julie
    11 months ago

    oh, my husband of 30 years said he still loves me but he wasn’t “in love” with me anymore. He said it so often I finally screamed “do NOT say that one more time! If you love me we wouldn’t be going thru this!!” He never said it again.

  • Erin Rush moderator
    11 months ago

    That’s a really astute observation, Dimitri. Sadly, MS does seem to take an unbearable toll on many relationships. Thank you for sharing your perspective on this topic. Best, Erin, MultipleSclerosis.net Team Member.

  • 1ucsdxw
    11 months ago

    I read Teddy’s response while at work today, which was a mistake because I couldn’t stop the tears. I wanted to respond but knew it wouldn’t be good with my emotions, especially since I work at an elementary school. I am Dev’s mom and when he was just 3 years old my father in law moved in with us after divorce. He was diagnosed with MS at the age of 35 and refused what little treatment was available at that time. My husband and I raised three children and many pets during the 20 + years he was with us at the same time trying to be a “normal family”. The last seven years of his life, “Grandad” was on a ventilator in our home. He passed at the age of 69 from pneumonia. I know that there is much I don’t realize with this disease, especially the emotional aspect. Over the years, I have sadly witnessed people come and go in my son’s life. It breaks my heart and at the same time I understand that life with an MS patient is not for everyone. I know there is someone out there for you Dev, you just haven’t met you yet. I guess you could say my life has been an MS life for a very long time now. I am so very proud of my son. For writing his articles and for always getting back up. If I could trade places with him, I would do it in a heartbeat! To Teddy, you touched my heart big time! Thank you for being who you are, we need more like you!

  • tfs
    11 months ago

    Dev’s Mom: You are an amazing woman and so rightly proud of your amazing sensitive and intelligent son. He is articulate and really has a great deal to share. Big fan of you both and I share your optimism. I feel like a “second” Mom! He gives a great deal and continues to risk. Hugs.

  • Marcie Kim
    11 months ago

    Dev’s Mom,
    I love what you shared here. My husband was dx in his 20s and was stable for almost 15 years before a very rapid downward spiral. He’s now a paraplegic with mild dementia and our children (conceived when he seemed to be one of the lucky ones) are still only 10 and 13 years old. It’s hard to be him and it’s hard to the rest of us, too. Dev did a beautiful job of capturing the struggles on all sides in this post. And you’re right, there are people out there who won’t run. We are a family – we are in this thing together.

    The ones who run don’t think they have the strength and I do understand that. I am sure I would never have married him if you had told me what this marriage would look like. It would have scared me to death. But there is nothing special or unique about me or my family that makes this somehow easier to stay together. It was a “real” marriage with its own stresses before MS piled on. My husband has fared far poorer than a typical MS patient and yet our home is a happy place and our children are doing great by any measure (grades, friends, sports, emotional health) despite the inherent stress in our lives. I credit the power of prayer – the power of God’s Holy Spirit to give each of us inordinate strength. I never, ever imagined living this life. I joke that there are a thousand reasons I studied business, not nursing. I was not cut out for this! So I have had to learn a lot and discover I am capable of more than I thought. When my husband’s health suddenly began to unravel, I couldn’t imagine surviving 10% of what we have been through. He blew straight through every barrier that I thought we could not bear, from incontinence and Depends, to walkers and power chairs, expanding paralysis, so-called “cog fog” and now dementia. I was certain I didn’t have the strength. But here we are. I am grateful I didn’t chicken out.

    Dev is an amazing young man by everything I’ve gleaned reading his posts on this forum. The right woman is out there!

  • teddy s.
    11 months ago

    Hi Devin,

    First, let me say how truly honored I am to have been mentioned in this post. I have not posted anything here for quite a while, but I still peruse the site occasionally. It’s been a little over nine months since MS finally took Tracey from me, and I have gotten on with my life. I’m not sure I would agree with your assessment that being a caregiver is more difficult than being the one afflicted with the chronic disease. I believe it depends on your individual personality, and how honest you are with your given situation. The caregiver, as you point out, can always leave. But then they have to live with themselves. Some people, many, I’m afraid, can do this without a second thought. Once I made the commitment to Tracey, I could never even have thought about leaving, unless she honestly told me she did not want me around.

    We never tried to deceive ourselves about what the future held, we both knew what was likely to happen. This can be very liberating, a “live like you were dying” scenario. We were determined to enjoy our time together for as long as we could. Our happily ever after would not include us growing old together, so embracing and enjoying every day became more important as MS increasingly limited her abilities. By the time the end was in sight, we both were as prepared as we could be.

    When she had a major seizure and was in the ICU for a week, and we finally got the doctors to remove the breathing and feeding tubes, the doctors did not expect her to live. She not only lived, but was conscious and able to talk. For one amazing hour, we talked, knowing it would be our last conversation. The hospital chaplain was there just in case she did not survive. I, like you, do not believe in god, but I do respect those who do. I took the chaplain aside and asked if she would “marry” us. She agreed, and just before she lost consciousness for the last time, we said our vows. We had no license, so it was not legally binding, but I was able to give her her greatest wish.

    When you are a caregiver for someone you love, I believe your love is not enough. What kept me going, and let me be there until the end, no matter how how difficult it became, was her love for me. I never doubted her love for me, and just to see her smile, and tell me she loved me made it all worthwhile.

    Upon reflection, except for wanting some more time together, I wouldn’t have changed a thing. I have moved on, and am in a relationship with a wonderful woman who understands she can never replace Tracey, and not only doesn’t mind me talking about Tracey, but encourages me to. It’s still early in the relationship, but this could me my “growing old together, happily ever after”.

    For those with the chronic, debilitating condition, there are those of us out there who may find you. Keep an open mind, it may be someone you would normally overlook. Tracey kept a journal, and after our first date, she said “he’s a nice guy, but I don’t think it will work out”.

    Yeah, right.

    Never give up!

  • Marcie Kim
    11 months ago

    Teddy,
    I always appreciate what you share here. Your strength and commitment to Tracey was and is inspiring to caregiver spouses like me. I feel compelled to say this for the folks, like me, who know they don’t have what you and Tracey had. I honestly don’t know how to measure my husband’s affections for me or anyone. He was never a romantic – me either – but we were happy as a couple once upon a time. One impact of the brain damage/scar tissue is that he doesn’t express much care or emotion. He is generally content and cheerful – but aloof and superficial. His mother died and he didn’t really react emotionally even though they’d had a healthy relationship. It’s just a toll of the disease. For me, staying with him is more about doing what is moral and just. He would do the same for me if our roles were reversed. I married a good man, even if the disease has changed him. It’s so important for him to have our help and love and for our children to have an intact family. And I hope we can inspire other families in some small way as they face their own struggles. I am all in!

  • Devin Garlit moderator author
    11 months ago

    Teddy, Thanks so so much for commenting and joining in and sharing more of your story with all of us. It means a lot to me that you took the time to share more with us. I’m a little chocked up by it and not even sure what more to say, other than thank you, and I am very happy to hear that you have found someone who is understanding. As I said, I very much believe in love and when I hope others will read this and realize that love is out there, for everyone.

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