It’s official.
With a June exacerbation my perspective changed. The dizziness intensified and I was unable to move without finding myself in a turbulent ocean. It was as if waves were pushing me in both directions, a sensation that is by no means easy to describe. That, in concert with a number of other challenging symptoms, landed me on 5 days with methylprednisolone– the classic treatment for an MS episode. One that I became all too familiar with since long before disease modifying drugs hit the market. With a synthetic burst of energy, a convenient side effect, I celebrated my 41st birthday and 21st anniversary of my MS diagnosis in one day. And for once, a side-effect was appreciated… allowing me a state of being beyond my normal abilities. I milked it for all it was worth- went out to eat for every meal and enjoyed many moments on this significant day that fell in the middle of this unfortunate episode. And beyond the steroid boost, I thrilled as the numbers grew on my facebook-birthday-fundraiser for MS SoftServe. Matching the frequency of my accelerated heartbeat, each one of my digital re-introduced friends wished me well. A positive reinforcement only known in modern social-networking. And as is the case after any all day party, I was left tuckered-out with a virtual house to clean. Coming off the 5-day intravenous treatment was more challenging than any post-party metaphor could convey. When all of my natural adrenalin rushed to the empty space that the steroids left, my system crashed. For over two weeks I slept and slept and slept. I’ve had many experiences with the steroid shock treatment and none of them ended like this.
When the neurological dust settled, I was left with considerable movement-based-dizziness in addition to the other symptoms I carry like luggage wherever I go. But this was different than the episodes that have preceded it and not only because of the symptoms that are now constant. In this case I realized something that I hadn’t known before.
The post-episode halt left a space for conversation and understanding at new levels. A system reboot- a defrag- reconnecting lost signatures. Apparently every day that I left my house with foot dropped, vestibular disturbed, movement compromised, he feared the worst. This most optimistic man that I married feared that I wouldn’t make it through my work-day without injuring my self. And every night that he was teaching and late commuting- he heard in my voice the exhaustion that prevented me from being the mom I needed to be while he wasn’t yet home. This drive in me to persevere no matter what MS threw my way, was in fact weakening the fortitude that kept my foundation strong. My perseverance was compromising every thing and every one. I don’t know where to start in this long list of ironies.
So through his eyes, I was able to see that working every single day for 7 hours plus the commute to NYC was not evidence of how much I could endure- how MS didn’t own me. But was instead the ingredients that compromise my ability to function at the level that all three of us deserve. I wasn’t spitting in the face of this disease, I was giving it control over the wrong parts of my life… and by taking myself out of the most visible realm of accomplishments “…and I work full time too!” I could concentrate on the most important one… being at home and awake for my family.
And so, as the papers are finalized and my role with the university completed, I’m finding new abilities in this label. My limited energy is now made available to my magical daughter and my dear husband. We all deserve more than what wasn’t left at the end of the day. And with that I’m learning that this ability– is the greatest of all.
I look forward to finding more than I expected with this “official” disability. Something that could only to be realized when I stood still long enough to see what they had been pointing at all along.
//
MS~LOL: Multiple Sclerosis a Life Of Learning 
I’ll admit that I was surprised by how this essay ended. I had to re-read the last few paragraphs a few times to make sure I got it. And though it is not quite the same, I can tell you that being a stay at home mom does come with some great perks. I hope you continue to discover them with your new “abilities”.
Amy, what an incredible awareness you have demonstrated in your essay. Too often family life is relegated to a position of lesser importance, as if raising a child, having a happy and stable home-life and a plugged in relationship with one’s mate is of lesser importance than working outside the home. Too often fighting MS successfully is linked to losing everything but one’s job outside the home. Balance is needed and it takes humility and a yielding spirit to achieve that balance and set important limits. Thanks for your example of humility and reasonableness. I think it will help many others struggling with similar situations. Your “perks” cup will be overflowing!
Darline~ Thank you so much for the informed MS perspective that you offer with every comment. It truly prolongs and increases the healing elements that this writing provides for me, in my MS experience. ag
I am amazed by your abilities, but I always have been (before and since diagnosis) I also have often thought being at home is harder than the workplace, although the commute and dress code is better. I know Madeline will love having more of you, as do we all.
Thanks sis~ You know, based on my constant flow of accolades what I think of you… and your opinion. Of course when that opinion of yours is so supportive of me, well- that doesn’t suck! And for the rivalry record I still think you are better than me!
xo
Amy, it was obvious even to me, a fellow-MSer and cyber-friend, that you were dealing with a serious MS episode this past summer. Just how serious only became evident with this essay.
I had an inkling, this past 6-8 weeks, that you had made the decision to stop working.
Your decision is the BEST one! Your family and your health are the most important! Your health will undoubtedly improve as you grow more accustomed to this new life.
Being a stay-at-home wife/mother is NO easy task, to be sure, but now you can pace yourself in all that you do and never have to miss another very important moment or milestone in Madeline’s life.
Blessings to you and yours. Connie
Thank you Connie for your ongoing supportive words. I’m already feeling the rewards of this decision, on many levels. Not missing Madeline-moments is the icing on the cake. 😉
All the best to you too, my friend~
ag
Amy, you are an amazing woman and i am so proud to be your friend.
All possible love to you and your darling family!!!
xxkarla
Karla, You and Robby have been such a positive force in my life. Knowing you has been an inspiration in itself~
Thank you !
ag
Amy,
I’m sure that you will LOVE this new aspect to your remarkable life. So much more of yourself for you and your loved ones. Wonderful!!
Lisa
As usual Amy you have a gift for putting into words what it feels like to be us…
Good for you, making the change.
I can relate to your husband’s worries. I am now dating a fellow MSer with foot drop and poor vision. i can’t help but worry sometimes. iI’s ironic considering my own issues but there it is…
Wow Nadja! That’s incredible.. you must have a lot to write about. 🙂 Thanks for your comment~
I look at facebook infrequently and just happened to today, and there you were.
You’re a marvel and a very, very dear niece-in-law. Your support groupies on FB just keep increasing.
Bless your heart and your immediate family as well as you folks and sister.
r
Thanks Unc. Raymond~
Your comments are so meaningful to me. Thanks for reading!
Sending that love right back to you and your wonderful family.
xoxo
P.S.- You can sign up to be notified when I post, here from the blog, or through facebook, so your reading won’t be accidental. 🙂
Keep in touch. I appreciate pics, especially the art objects your husband makes.
I’m so happy for you Amy!
Amy,
Thank you so much for this essay about your journey finding the perspective that only disease like this can teach us. We really do only have so much energy in a day and how we use it is therefore all the more important.
Congratulations on your official disability and your resulting ability…may it bring a multitude of blessings and happiness upon you and your family. I know it will.
Jan.
http://walkwithabigstick.wordpress.com/
Amy, I am a firm believer that everything happens for a reason – even if you don’t know what it is right away. It seems, though, that you were able to figure this one out quickly. And, now you are able to enjoy the parts of your life that mean the most, (without feeling guilty about falling asleep during a bedtime book.)
I am always inspired by you. Enjoy this time
~ Linda (the other one)
Hi Amy,
A good post, thanks for sharing.
Came by to say hello and wish you a good Halloween weekend.
Love,
Herrad
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Very well written 🙂