For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.
For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs set up by my back-door neighbor, I try not to be envious as I look at the ease of movement seen in everyone around me. Distracted by the parade, I wait patiently for Madeline and Keith to pass by as part of the group they are walking with. In spite of the fact that I’m sitting as one of many who have come to watch the parade, I feel useless. I can’t help but to imagine being there with Madeline as Keith has in recent years.
These can’t-do events were easy to avoid when Keith and I were “single” in our marriage. We made plans to fit with in the parameters of our (my) needs as a preference rather than a limitation. Two adults can make these choices and not be questioned. Sitting in a dark movie theater as opposed to the outside activities in July is not unreasonable when desired by two. But all that changed when Madeline came into our lives. What began as fear of how I would care for my infant grew into not playing in the backyard on the hottest days of the summer and not going on the treks through the local reservation to pick raspberries.
As invitations came that were beyond my abilities, I either “wallflowered” or bowed out and allowed Keith to represent. But as Madeline has grown into the precocious almost-8-year-old she is, my absence stings on new levels. Now she assumes I won’t be joining in and for me, that realization is a bitter pill. So now I search for circumstances that defy her assumption while also honoring my reality.
Who would have thought that my first effort would be on the 4th of July. The day that repeatedly blacklisted me from engagement. Maybe it was an affirmation from the powers that be that it only reached 79 degrees this year on that day or that the delivery came just in time to seal my participation. Arriving on July 3rd at 5pm fully charged and ready to escort me in Montclair’s Independence Day parade- I had no way out. I told myself, that if it came prior to the 4th, I would do it. I made a public verbal commitment, knowing I would not have the option to find excuses. I sometimes have to trap myself that way… my rational brain forcing my emotional brain out into the fray, like a kindergarten-er on her first day of school. By parading myself past the entire town while struggling to accept this variation of me, I am forced to do exactly that. I will be playing the role of someone who is at ease, in spite of the real character behind the continuous smiles and waves of a parade. It’s all or nothing… that’s how I roll – so to say :).
Despite my efforts to evade this inconvenient truth, I finally forced myself through the red-tape that helped me to avoid this acquisition for years. Forging ahead in spite of an intense internal resistance… I am now allowing myself to use that which I can barely utter for the scenarios that were beyond my reach, my step. Showing my daughter that I can be there representing with a cool ride and a big smile. Pretending its okay…even before it is… I know I’ll get there. And while my forced physical presence could only happen by making and losing/winning bets with myself, I will continue to find ways to accept the me who needs a device for mobility… to be a participant and not a sideliner. And Madeline will get the message, without even knowing it.
A beautifully written piece, Amy. Your ability (one of your many) to articulate the ongoing contest of “Amy vs her body” shows us all that you are clearly the winner, but also gives us a better understanding of how people live with a disability. This picture says it all.
Thanks for you ongoing supportive words, Mom. You have all sorts of insights, not only about people living with challenged abilities as is reflected in your profession of two decades, but also your perspective of my life arc. I always appreciate your thoughts and feedback. Let me declare for he entire blogosphere to “hear”, I love you!
P.S.- Yes.. this sign is fab! Thanks for that too!
Great piece! Reading about your playing the role before you really feel it, I am reminded of the phrase “Fake it until you make it.” So glad it all came together for you this year for your first Independence Day.
And the sign is indeed fab!!
Thanks Jodi… I think that concept… drives me everyday.
And yes, thanks for pointing it out… this is my first Independence Day!
sometimes when I open your postings, it is about an event have already heard about (or maybe been a part of) but I am always amazed to read it with the incredible perspective you bring to it, a perspective that speaks strongly, not just to those who face similar challenges as you, but to all people who think, feel, and navigate this world. Thanks for inspiring thought, reminding us the mundane is never mundane … every moment shapes all of us.
That’s great Amy!! Way to go. So good of the weather to cooperate.
Oh man that is a good read Amy. I was grinning ear to ear by the end. This picture was worth it to. You should be proud and happy and giddy and joyful… and I’m going on needlessly.
Really though, conga rats to you and your family. One thing though…. You should trick your ride. Maybe some really sweet tailpipes, some dingle-balls and a set of whitewalls! Kidding 🙂
Take care of yourself and be mindful of the squirrels!
Way to go. You took charge of the situation. You did not give up independence by making this change, you gained it.
Well this is a first for me, I have never felt compelled to make a reply on a blog before, but just had to do so after reading your latest entry. What an inspiration you are to those of us who are trying to come to terms with mobility issues and scooters in particular.
I have been dreading the day I ride one in the supermarket for the first time, and here you are in a PARADE! Needless to say, I will think of your example when it comes time to take my first stroll on wheels. (smile)
I think your daughter has her mom’s insight and compassion. Children are already great examples when it comes to enduring a family member’s illness. They teach us about acceptance and unconditional love and reasonable expectations. They adjust and flourish whether parents are as healthy as they are or not. She will continue to be her mother’s child and I mean that in all the most complimentary ways possible.
Thanks for a great post and a great blog!
I read your latest posting about July 4th – strikingly honest, honey, and beautifully written. There are so very many gifts you give Madeline that are a much stronger force than your limitations.
I have a neighbor friend who hates hot weather. She stays inside all summer and I don’t think you’d catch her at a parade or picnic. There are so many ways to live life…
Did you watch the JK Rowling special last night? Her mom never had a chance to rise above MS as you have. Or to take it a step further to educate and provide compassion to others.
Hey, Amy. I agree with Mike. Trick out those wheels! A permanent MS SoftServe flag would be a great start. Glad you found a solution. You and your daughter look very happy.
Thanks Carmen! This was 2009; my daughter is almost 10 (sheesh!) . I haven’t gone in the parade since then, but love having this memory to reflect on yearly! 😉
Reblogged this on MS~LOL: Multiple Sclerosis a Life Of Learning and commented:
July 4th 2009 was so significant to me- July 4 2012 we even more so!
Thank you for this wonderful piece, I have found myself really relating to much of the post, even though I don’t actually have MS but suffer with a long-standing brain stem lesion so many of my symptoms often mimic those of MS.
I too often find the hot weather so oppressing, making the spasticity in my legs worse, affecting my mobility even more and battling against the things I so want to do versus what I am actually able to do. Seeing others going on holiday I am finding very difficult as I am unable to go anywhere due to the fact that I cannot stand or walk for very long before my legs give way with no warning!!
But like you, am finding little things which I am able to do and finding ways in which I am able to participate in things I want to do – but in a different way.
Thank you for the positive message. A wonderful and uplifting post!
Thanks so much for your wonderful response! 😉 It’s an amazing opportunity that this “internet thing” provides for us. There is nothing more powerful than relating and being related to when it comes to this stuff. And your words are equally healing in response to mine. Thanks so much for taking the moment to illustrate that. It made my day.
Stay cool… physically and emotionally!
I am reading this blog from 2009 and continue to be amazed by your courage and determination. I see that this year (2012) you were on your new “trike” in the parade and it looked like fun. Today was an adventure for me too! My husband (wonder man) pushed me for over seven miles in the wheelchair on a wonderful paved hiking trail! It felt like being a little girl again on a camping trip! It was filled with wonderful highlights and yet hard at the same time to watch all the “normal” people walking/jogging/bicycling…! I need a t-shirt or something to remind the “healthy folks” to appreciate all they are able to do without a second thought. You are an inspiration, Amy!
Thanks so much for your response. Writing these posts is healing for me- reading comments from those who “get it” takes it to an entirely new level. THanks for sharing your story. It’s great to hear you have one of those “wonder man” husbands as well- and to feel our mutual hurt/frustration/anger when watching the “normal people” not thinking twice about all of it. While searching for ways to feel ok with that… I remind myself that only people like you and me really have our perspectives straight. Who knows what else they are missing. 🙂
Thanks for taking the time to share your perspective… It means so much to me~