Missed Steps

Posted on April 18, 2017 by Pam Lazos

Missed Steps

It started with a band around his waist which was joined by a tingling sensation in his feet. First it became a numbness, then shortness of breath and then a fatigue so profound that standing upright became an issue. I tried to brush it off, gave him vitamins, told him to work out more, sleep more, eat more greens, but the symptoms escalated and then we were at the doctor’s office, listening to the doctor say, after so many tests and x-rays and MRIs and CT scans, this is it, this is your problem, you have MS, and we looked at each other in disbelief because he was young, and healthy, and oh so athletic and never in a million years would that have been our guess.

We cried and I, in the way I do, tried to find the way to fix it, that if we just try this and do this and purchase this we can manage it all, make it go away, call the universe out on the great cosmic joke, but nothing worked, not a single thing, and it just kept coming and coming and coming and it wouldn’t be stopped, like the sun over the horizon.

There are days when I want to pound my chest because it wouldn’t be lady-like to pound someone else’s and depending on the degree of severity of the pounding, could also be a felony, or at least a misdemeanor, and we had enough problems already. I kept holding out hope for the day someone would tell me it had all been a terrible mistake and all you have to do is “Drink This” like Alice and you’d be up and out of that rabbit hole faster than stink. Oh God, how I hate this disease and myself for trying to bargain my way out of it when I know that I have no leverage, nothing to trade, just a hope that I can somehow work it all out right. Our lives, once vibrant and full of hikes in the woods, and biking on trails and swimming and all those things that make you feel alive have been reduced to a meal at a restaurant or a night at the movies. My husband’s walker has become his lifeline, and the interminable march between the kitchen and the bedroom with an occasional foray out into the world for treatment his daily route. Some days are bad, others worse. There were never any of the reversals touted by the neurologist, and his health has been on one continuously long decline for the six years since he was diagnosed, a well-lived, active life now routinized and lonely. Not just for him. For all of us.

We dance around the issue most days, try to pretend it doesn’t exist when it’s pulling the fabric out of the stuffing of our lives. We are selling the boat because the alternative, remembering how much side-splitting fun we had when we were all out on the river, is too much to bear under the daily remembrance of seeing it parked in the driveway. Why such a punishment? To whom might I appeal clemency?

The kids go on with their lives and truthfully, so do I, to work, to meetings, to my volunteer events, my writing, because what else would I do at this juncture? Someone has to pay the bills and shop for groceries and feed the animals and stay on the kids’ school stuff and if I stopped even for a second, I might collapse under the weight of what life has become so instead I balance seven things on my head which engages all my focus and I don’t have to look at the horrid, greedy beast that stole my husband, don’t have to look in its two beady eyes although it would help if I could punch it right in its smug little face.

But this is where we are now. It’s taken me six years, six years to write a word about it, me, the writer. Privacy, my husband’s, my family’s, mine, too, was and is an issue, but everyone sees the healing effects talking about it can bring so if you’re reading this, that means I have their blessing.

Missed Steps. MS. Multiple Sclerosis is a condition wherein the myelin sheath that protects the spine like a casing on a sausage is eaten away one lesion at a time. My husband has over a half-dozen, no new ones for years, but the one on his brain stem has burrowed deeper and deeper, determined to dig all the way to China as the saying goes, and it’s left him with terrible balance and stiffness and fatigue and on many days a lousy attitude all for which he takes drugs to combat the symptoms, but ingesting that amount of drugs and vitamin supplements and elixirs alone is exhausting. The medical bills are depleting – thank God for insurance – but even with it we pay so many thousands of dollars a year on top of our premiums that you wonder how people without insurance do it. One drug alone costs over $7,000/month, not for a cure, just a stopgap measure.

It’s all broken – the health care system, my husband’s body, our trust in modern medicine, maybe even my faith in God although most days I do believe that someday all will be revealed. It’s just that someday is not today and all I can do is brace for tomorrow.

I hope we’ll ready.

pjlazos 4.18.17

About Pam Lazos

writer, blogger, environmentally hopeful
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61 Responses to Missed Steps

  1. mshugsandkisses says:
    July 7, 2017 at 6:38 pm

    I just read this post and it cut deep for me. I am the one with MS. I was diagnosed 20 years ago at the age of 19.
    When I met my husband I was relapsing and he knew exactly what he was getting into when he married me… I still feel horrible for all the things he has to do because I can’t. I often feel ‘less than’ and have a lot of trouble with guilt over needing care.
    It is nice that you have an outlet for your feelings. I wish my husband had somewhere he felt comfortable letting out the hurt and anger this causes him.
    All I can say is keep keeping on. It’s all you can do. Everyone’s life is unknown from day to day…those of us with MS just understand this better.
    Thank you for sharing. It is a very moving post!

    Liked by 1 person

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  2. Devin Lowe says:
    June 12, 2017 at 3:58 pm

    I completely understand what you’re going through. I was misdiagnosed with a brain tumor at 28, had surgery that removed the “tumor” that actually ended up being MS. It took away just about every dream I had for my life. Probably the worst aspect is the fear that I’ll be a burden to my family. It took several years and a few different medications before I found what would work best for me. The first two years were spent on a drug whose side effects were worse than the disease itself. It wasn’t mentioned which type of MS he has, but for me it was worth switching to find the one that worked better for me with a medical team that only treats MS. I went from not being able to walk without a cane and hardly leaving my home to being somewhat active again and exercising daily. In fact I won a New Year New You weight loss and excercise competition, beating every other contestant that had no physical limitations whatsoever. I was able to do that in spite of the fact that any other of those contestants could have beat me because honestly I can not possibly win against any “normal” people who are giving it their best BUT if I give my absolute best against those who could do better but choose to not I can. I say all that to say that because he is experiencing these issues now does not mean that those can’t get better even though the disease is still progressive. I made the mistake of believing that because I needed a cane at one point that it would always be that way and only get worse from there…not the case. I resisted being treated for depression as well because of the stigma associated with that, but once I decided to deal with it my life improved significantly as well. Maybe his life won’t be what you’d planned for it to be, but in a lot of ways it can still be more than what you’d ever thought. I hope I’m not minimizing your pain, that’s not my intention and I know exactly how hard it is. I still do not leave my bed some days…but those days are fewer and farther between than they used to be and it’s only my intention to give a voice of hope to you and your family through my own experiences. I wish you only the very best! 🙂

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    • pjlazos says:
      June 12, 2017 at 5:58 pm

      Thank you, Devin for your candor and honesty. Sounds like you have had a harder time of it. I wish you well and hope they find a cure soon for all this crazy mess. I will make sure my husband reads your response.😍🙏

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  3. Andrew Goldman says:
    April 24, 2017 at 11:29 pm

    Very powerful Pam. Surely a road better avoided than traveled but you don’t get to pick your route. That said, we’re here to put up popsicle stands, sideshows, and any other diversion that might help brighten the path. And though it may seem and sound old and ineffective, keep faith that the road may turn for the better, because roads sometimes do that. XOX

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  4. Deane Bartlett says:
    April 21, 2017 at 9:29 pm

    Pam,

    My heart breaks and expands at the same time reading this. How strong you are, to put this out there – and to go on with your indomitable spirit through this awful mess, which you cannot fix, simply struggle through. Scott and the kids are all so fortunate to have you – and you them.

    Love to all – Deane

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  5. Rosina Rucci says:
    April 21, 2017 at 11:03 am

    Beautiful Brave Beanie . . . what a heartbreaking piece but soaring in spirit for the love and devotion so clearly there between the two of you. I loathe that you both have to live this but I love that he has you next to him because better than that, it can’t get. Love you with all my heart.

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  6. dkatiepowellart says:
    April 20, 2017 at 2:46 pm

    Amazing writing. Cut through me. Yes yes yes.

    Liked by 1 person

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  7. Scott Eberly says:
    April 20, 2017 at 1:13 pm

    It is so hard to read about myself, but everything you said is so true. The life we once had is gone and I feel like the shell after a crab has molted.

    Liked by 2 people

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  8. raimeygallant says:
    April 20, 2017 at 6:25 am

    Thank you for sharing this. I don’t know what to say except this raised deep emotions for me, and my heart goes out to your family.

    Liked by 1 person

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  9. Robyn Haynes says:
    April 20, 2017 at 6:23 am

    I am so deeply sorry for you and your family. I know from the experience of my husband’s cancer what a long, exhausting road it can be. He would tell me, ‘one day at a time, just keep putting one foot in front of the other’.

    Liked by 1 person

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  10. Patricia says:
    April 20, 2017 at 2:39 am

    scott is surrounded by so much love…..good days, bad days, some days ,no way days..love will get you through…and tell him, we love him too. Ps. We wear his bracelet. See you soon…and A. Will be home this wend! Xo

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  11. Michele Anderson says:
    April 19, 2017 at 9:19 pm

    Thank you, Pam, for sharing the pain of MS. Each day is a day filled with hope that a cure will be here. Words are words and I wish they could make a difference.

    Liked by 1 person

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  12. MariHoward says:
    April 19, 2017 at 12:02 pm

    Such a pig of a disease and so hard for you all. A brave piece to share it with us who read your blog. Blessings on you, if they can somehow come and give you some light and strength to carry on.

    Liked by 1 person

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  13. Barbara says:
    April 19, 2017 at 11:44 am

    Dear Pam & Scott ,
    Its like you are soldiers on the disease battlefield. Not knowing where the next strike will come from or how hard it will hit . Why do our bodies behave the way they do .. some are so healthy and others falter .. And I have seen you try it all like you said .. healthy diet strange green drinks .. and yet you retain your sense of humor and joy for life through it all . I guess the lesson learned is the disease is going to keep attacking but you can’t let it rob you of your soul and that is so hard and you are teaching your children not to quit .. and you are letting Scott know that you are not quitting.. and I wish I was closer and could help you on that battlefield 😥.
    Hopefully for a little while on our trip to Ireland I can take you away from it all , hugs to you & Scott ,
    Barbara

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    • pjlazos says:
      April 19, 2017 at 11:48 am

      Thanks my beautiful dear. You know so much of the struggle by virtue of your work. And yes, it does seem like a battlefield. So we strategize day-by-day and hope for a better one than the last. Friends like you (go whales! 🐳) make the journey easier. Love you big.❤️ And yes, Ireland!!! 🇮🇪

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  14. hilarymb says:
    April 19, 2017 at 10:19 am

    Hi PJ – I visit someone who has MS – thankfully she is looked after in a Nursing Centre, and is confined to bed – she enjoys the visits though – I’ve kept on since my mother died at the Centre.

    I am sorry to read your experiences … good for us to understand … yet so challenging for you both – yes positive attitude, and being able to laugh – very difficult .. but helps … with many thoughts – Hilary

    Liked by 1 person

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  15. da AL says:
    April 19, 2017 at 5:23 am

    so sorry for you, your husband, & yours family. a positive attitude, patience, & love help immensely in any situation. sending you all my best

    Liked by 1 person

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  16. Ken Dowell says:
    April 19, 2017 at 3:06 am

    I’m really sorry to hear about this. You did a brilliant job describing it. Pretty well conveys the pain for you and your husband. Hope there are some pretty good days ahead for the two of you.

    Liked by 2 people

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  17. anncrawford509 says:
    April 19, 2017 at 1:04 am

    Wow. Much love to you, beautiful friend.

    Thank you for your courage, love and strength.

    ❤❤❤

    Sent from my iPhone

    >

    Liked by 1 person

    Reply
    • pjlazos says:
      April 19, 2017 at 2:22 am

      Thanks, Ann. I’ve been practicing! The MA stuff was INVALUABLE these last years. I do think if it wasn’t for Jim I would not have as much equanimity as I do about it. So things do come into your life at exactly the right time, eh?!

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  18. Tracy Letellier says:
    April 19, 2017 at 12:00 am

    Ohhh, dear sweet Pammy, I am so sorry to that this wretched disease has befallen your family. I can’t even imagine the pain and struggle that you are all going through. We have seen it first hand with friends and it can be agonizing. I will add you all to my daily prayers. Sending lots of love from Pierre and I.
    💗💟💖

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    • pjlazos says:
      April 19, 2017 at 2:20 am

      Thanks, beauty-face, Tracy. You’ve got your own thousand things to deal and have done so with grace and poise and I guess that’s what I’m going for as well, to temper my reactions in a way that allows us to live constructive lives despite the disability. It can be really hard sometimes, especially when you watch someone suffering. The weird part about MS, at least Scott’s MS because everyone’s is different, is that nothing really hurts, he just can’t always move or sometimes his energy level goes to practically zero or his balance is terrible or some other weird thing will happen but always different things in different combinations. It’s baffling and frustrating and a pain in the ass of a disease. And I love your guts. oxo

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  19. mitchteemley says:
    April 18, 2017 at 11:47 pm

    So glad you shared this, PJ. Sharing burdens (no matter how tiny my portion as a stranger may be) makes them more bearable. Prayers in progress.

    Liked by 1 person

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  20. Mae McDonnell says:
    April 18, 2017 at 11:41 pm

    My extended family is also dealing with MS and so much of what you wrote here rings true. It is right to grieve and to hurt; even when it’s not you, it’s happening to you. Much sympathy and just a comment from an Internet stranger that you’re not alone. It’s hard. I’m glad you can write about it.

    Liked by 1 person

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    • pjlazos says:
      April 19, 2017 at 2:12 am

      Thank you, Mae. That’s very kind. Much luck to you and your family as you make your way through the quagmire of this strange and confounding disease. ox

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  21. shehannemoore says:
    April 18, 2017 at 11:24 pm

    Oh Pam, oh Pam, oh Pam, I’d fecking well give everything for that Alice potion for you, everything that you might find clemency. I’ve not just read this once, I’ve read this over and over. And over again as I write this. We’ve talked, I know, but not in this truth and honesty. But in a way we have about the balancing on the bloody head right, even if I don’t know how you keep going. But you have my absolute admiration for all that’s worth and the knowledge that this must have cost you so much to write this post xxxxxxxxxxxxxxxxxxxxxx

    Liked by 1 person

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    • pjlazos says:
      April 19, 2017 at 2:10 am

      Thanks, Shey – I know you know. It’s funny how mercurial it all is and how just plain pissed off I was when I wrote this (maybe a week ago) and how right now, sitting here on the couch, it’s just another night and yes, this is happening but we’re still managing to live our lives and still looking for things to make us happy. A few months ago, Scott got an electric wheelchair and now that the weather’s nice he’s been walking the dog using the chair. The dog actually walks at a fast trot and the chair turns on a dime so it’s nice for Scott to get out and fun for Apollo who initially wanted nothing to do with the mechanized beast but has finally bought into it. I even asked Scott tonight if he there was such a thing as extreme wheelchairing and if there was would he do it. He used to be big into mountain biking — the kind I consider to be too high risk for my taste — so why not in a wheelchair?Although I would like to see him put a roll bar on it if that were gonna be a real thing! Anyway, it helped for me to finally write about it and it really helps to have friends like you reach out about it so thank you, my friend, thank you. oxo

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      • shehannemoore says:
        April 19, 2017 at 10:03 am

        I think we can keep too much to ourselves. I know I don’t like talking about personal things, so I try not to. In fact I am known for my mantra, which is ‘ I’m good.’ But sometimes it just boils over and you feel better for speaking it out loud, or writing it down.. There’s times that are worse than others too so it is difficult to see that wee patch of light ahead. The one you can skip onto and stand on for a moment as you try to deal with what is shrinking around you. Then you sometimes see it’s not shrinking as badly as it felt a moment ago. But part of that is just getting it off your chest. I don’t know that humans are really meant to boil and boil everything down and keep the lid on it. Anyway, my darling Pam, I mean what I say. xxxxxxxxxxxxxxxxxxx

        Liked by 1 person

      • pjlazos says:
        April 19, 2017 at 11:42 am

        So well put, esp. the shrinking feeling. Thanks, friend.🙏❤️😘

        Liked by 1 person

  22. Gina M Briggs says:
    April 18, 2017 at 10:44 pm

    A beautiful and difficult post, Pammie. So sorry you and Scott are going through this. The cliches about dealing with difficult times and conditions are supposed to make us feel like somehow we are better off dealing with something monumental, but in the end, life is unfair. Not fair to Scott, to you, to your kids and friends. I guess it comes down to how to respond to it. How you soldier on.

    I want to believe this is a sort of anti-enlightenment period and in the very near future humans get their act together and stop celebrating the idea that the person with the biggest pile of shiny stones is the winner. I mean, that day has to come if humans are going to continue I just hope we get to see it. At the least the very beginning.

    Thinking of you,

    xoxoxoxoxox, Gina >

    Liked by 1 person

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    • pjlazos says:
      April 19, 2017 at 2:01 am

      Thanks, lovey, and so very true. Life is unfair, but I’m convinced that there’s a cadence and a reason to it all and that someday all of it will make sense. Right now, though, it’s like we’re in the dark ages and the Renaissance is right around the corner, but we can’t see it coming because somebody keeps unscrewing all the light bulbs. Miss you. oxo

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  23. R.Q. Woodward says:
    April 18, 2017 at 10:33 pm

    I have a few friends who have family members with MS. I know it’s tough. My mom had cancer and ended up disabled after multiple brain surgeries so I can definitely relate on some levels too. It’s good to keep going 🙂 Not pretend it isn’t there, but keep going.

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