Another Year with MS – Being A Strong Motherfucker & Living Out My Dream

My life has changed SO much in the past 10 years, when I sit down and spend any time thinking about it, it really is mind blowing. When I was first diagnosed with MS – I was blessed to have a doctor that seems to have understood who I am and how I deal with things. When the day finally arrived that he was to inform me that I had MS, my immediate and uncensored response was “OH FUCK!” Without missing a beat, he calmly responded “No, this is NOT and OH FUCK moment. This is an OH DAMN. Your child gets Leukemia, that is an OH FUCK moment. Your spouse is instantly killed in a car crash coming home from work, leaving you to raise you 5 children; THAT is an OH FUCK moment. This is simply an OH DAMN moment. No one dies from MS – and you are going to go on, and live your life, and be OK.”

Those words, although to some may seem callous, were just what I needed to hear, and they have remained with me through all the ups and downs that I have gone through since that day in his office. Because of what he said, but also because of the way that I have always viewed life and all that comes along with it, I have always been able to see the humor in my life (my reasons to laugh and smile.) Early on, I began to write the stories down, things that happened and things that other people said and did. At first, it was simply intended to be a journal – the journal that I have meant to write and keep for the past 35 years, but I never seemed to manage to stick to it.

But this time, it was different, because the issues and things that had held me back in the past, now seemed so irrelevant, or maybe don’t even exist. I remember sitting down, pen in hand with yet another beautiful leather bound book I had purchased or received as a gift, swearing that this time would be different, that I would write every day, even if just a sentence or two, to record my life, the things that I think and feel. But what held me back, and would eventually led to my “daily” writing, turning into “weekly” to finally not remember where the stupid journal was anymore, was never knowing what “voice” I was to use. Was I writing it for my ears only? Or was it something that I was writing to confirm and validate the life I was living and the person that I had created to fit what I perceived others wanted me to be? Because those two things were diametrically opposed to one another, and I could not manage to come to terms with the differences between the two, or figure out who it was that I wanted or needed to be when writing.

Getting MS made me stronger. It made me finally believe in myself again, to remember who it is I once was, that I left behind somewhere years ago, in a never ending quest to make others happy and ensure that everyone liked me. The minute I sat down to write, once I had MS, there was never any doubt, no questioning what voice I was going to use, who I was going to be. I was finally going to be ME again, through and through, because I realized that only that person was going to make it through; not the one based on what others wanted or expected. I don’t think that person would have been able to confront the disease head on, and accept it; to genuinely find the reasons to laugh and smile rather than use it to seek sympathy and pity – finding the reasons to feel sorry for oneself. So – as crazy as it sounds, getting a disease that makes people weaker, both physically and mentally, made ME stronger and allowed ME to finally be myself again.

Although I have made huge strides in trying to create a new life, that is based solely on truth and honesty, and to believe in and love me, with all my flaws and faults along with the good things innately entwined in my character, I have a long way to go on this journey. I have always put others in front of me. Sacrificing things and deadlines that are involved in my life, to help others in pursuit of achieving things in their lives. I now realize that this is probably a major reason for how or why I ended up with my EX. I think about others and what they are thinking and feeling at all times, in an all consuming way. In an eery way, it rivals how a narcissist thinks of them self first and foremost constantly and always. The tunneled vision alters one’s perspective of everything. Whether you are thinking about yourself or others constantly, neither is an open and realistic view of life and all that happens, and neither allows you to have balance in life.

I don’t know why I am wired that way, but I also don’t think that I need to spend thousands of dollars with a therapist trying to find the answer. I am slowly beginning to see these things about myself and to understand how they may harm me and the dreams that I have for my life. Being able to see this, along with finally being ME again, has enabled me to find the people in my life that really DO matter. Living with MS forced me to decide what really matters; to constantly ask the question “is this worth my time and energy?” I now work to fill my life with only the best of things. I try to make each moment count and strive to strengthen the relationships that do make the “cut” and are still there when the dust settles. Those are the things and the people that matter and although being diagnosed with a chronic disease might have forced me into an unexpected “purge” of time sucks and energy drains it leaves me with the best of the best – the things that count.

Moving forward I plan on appreciating what remains rather than wasting time thinking about what was lost. MS and divorce may well have led to fewer friends (and invitations) but those that remain, are the ones that I would want around when the ship starts to sink. I am not ever going to be the one to embrace the complete “holistic” way of living (vegan eating, green smoothie slurping, yoga going gal doesn’t seem to be in my future) but I do know that I am growing, a work in progress, learning more and more about myself. I am spending time realizing things about me and finally putting myself first….sometimes. What I am choosing to take away from this is that everything in moderation is a great way to face life. So I may well stop off and have one of those green smoothies, I might just decide to take a Yoga class with Piper and go for hikes with Spanky but I am also going to sit by the fire-pit in the evenings enjoying a cold beer with Shawn, eat food that isn’t considered “healthy” when the urge strikes, take a nap when I feel like it and last but certainly NOT least give my dream of being a writer a genuine shot this coming year!


What dreams and goals do you have for 2016?

14 Replies to “Another Year with MS – Being A Strong Motherfucker & Living Out My Dream”

  1. Oh shit was my reaction 10 years ago, I have to be honest as much as try to fight ms head on I have lately been feeling defeated. My nerve pain (which happens mostly when tired) has been . getting worse and worse. I want to try medicinal mj, I am on Gilenya and it stopped working, I have tried many meds lyrica, gaba the list goes on but to no relief. Our blog gives me hope, for that I thank you. Helena

    1. Hi Helena! I know that nerve pain and I know the desperation I felt. I can not say enough about how much cannabis has helped me!

      Thanks so much for stopping by and commenting!


  2. I stumbled across this blog post! I really enjoyed reading it. It really hit home for me. I started writing my blog but just as the journals I too can not seem to get into the daily habit of writing in, as MS cramps my fingers when I write. So, I thought starting a blog, may help get things out that I need to say. Typing seems so much easier and quicker. Thanks again for this post!

    1. Hi!
      Thanks so much for taking the time to read my blog and for the kind words. I can completely relate to the issues of “writing.” (As in the physical act of doing so.) Which completely bums me out because writing was a big thing for me – as in I spent time “perfecting” my handwriting and cursive and spent many hours just writing to write. When I was young (12-14 age range) I had notebooks and ALL that was in them was rows and rows of WORDS – just any old word that I could think of. THOUSANDS of them. Odd perhaps, but you can imagine my joy when I discovered that my daughter has done the EXACT same thing. Really wish that I had kept those book. Would prove to people that I might just be a bit ape-shit-crazy BUT it would also show Piper that we ARE alike in more ways than one:)

      Meg (aka BBH)

    1. Heike!
      Thanks for stopping by and spending time reading. I really appreciate it. Your comment made me remember something I wrote a long time ago, back BEFORE the divorce and working full time. I was at the gym almost EVERY DAY. People would comment about how “fit or muscular” I was and I would always respond that I worked out to be a warrior against this stupid disease:) Now that I have returned to my old ways of going to the gym, hoping that I can get at least a bit of that attitude back:)

  3. I plan on going with the name “the big fat panda,” instead of “yo-motha-fuckin-han.” Love your writing BBH, thanks for posting.

    JE (man with MS)

    1. Thanks Theresa!
      I don’t do the New Year resolution thing….never have, but I DO have goals and dreams and figure 2016 is a damn good year to give them a shot:) I appreciate you taking the time to read the post!

      Meg (aka BBH)

  4. Love this post and I love the perspective you bring to having this disease. While it can be a very frustrating disease, you’re absolutely right, it is not a death sentence. It’s an “Oh Damn” moment… Love reading your posts!

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