Tag Archives: Being a Mom with MS

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Smash Your Halloween Pumpkin for PWMS!

Challenge Accepted!

If you dumped a bucket of ice for the whole world to see, then contributed to the ALS association you were a part of a worldwide effort. Cos your contribution helped raise $115 million for that organization. That’s $95 million more than was raised last year for this cause.  And even if you didn’t make a direct donation, by spreading the word about this disease to others via social networking you were key to the best charitable effort ever.  Awareness is 90% of giving- because afterall you can’t know what you don’t know and you can’t support an organization for a condition that you didn’t know exists.

Stomp it out, smash it out, waaayyy out.

So let’s spread the word and raise a few dollars for what will be an important part of coping for people who are living with MS (and peeps who care about them).  MS SoftServe is a non-profit .org that will put learning and teaching about MS in the control of all of us who are living with it. It is a customizable learning website will lessen anxiety and empower us on new levels. Check out this link to learn more about MSSoftServe and this one to donate.

Why Halloween is the Perfect time for MS fundraising!

  • Orange is the color of the designated ribbon for MS
  • MS is sooo scary.
  • Stomping on a pumpkin to metaphorically stamp out MS is sooo satisfying!

Cut to the Cut Amy!

Many of us will carve a pumpkin and put it on our porch on  October 31st. But what to do with it on November 1st? Before it hits the trash or the compost heap why not smash it, video tape it and spread the word about this effort. Getting the word out about our effort is so important and a few donations wouldn’t hurt in getting us closer to our goal.

ms-ribbon-2 nevergiveuptattooribbon round pole peacelovehope

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Unexpected Healing- or how M&M’s can make anything easier to swallow

A week ago I accompanied a good friend to a doctor’s appointment. I’ve known her for exactly 8 years 7 months and a week. I don’t usually keep such close record of when I connect with friends but we have a timer that evolves before our eyes, reminding us of when we met. Her son was born in the same hospital a week before Madeline and we did our new mommy class together. I was going through a very difficult post-partum-oh-my-god-how-will-I-care-for my-new-baby-when-I-have-MS thing. Challenging times at best. And when I walked in the room on the second week of class I immediately felt that she would be a good person to get to know… kinda like you know a good melon. 😉 My instincts proved true and we’ve been friends since. With our husbands, we enjoy a lot of common ground. We are all in education and thus have similar interests. Of course we also enjoy marveling at how much our kids have grown since we first met, when they were little more than cute, high maintenance blobs in a carrying basket. And over the years since, though distracted by life’s happenings, we found time to connect once or twice a year. Considering how time moves when you’re distracted by your child , it seemed frequent.

Two weeks ago we gained more common ground. Linda (she’s my other Linda, btw) called to tell me that her doctor thinks she may have MS. I was stunned. I tried to keep it together to be positive and helpful when we shared this conversation. I spend so much time thinking and talking about what newly diagnosed people need and it all fell to the ground when this good friend came to me. How can she have MS!!

Linda and her husband have always been very supportive of my efforts and challenges. They’re the kind of people that are sincerely listening when you talk to them. (Awesome eye-contact… I’m sure you know the type!) And it made them stand out as friends. So, I repeat, how can this be? I replayed the tape of our friendship, highlighting the caring moments and discussions about my MS. And like that moment in a movie when the plot comes to a screeching halt and nothing is what you thought it was and you have to watch it again from the beginning with your new knowledge (The Sixth Sense or The Usual Suspects come to mind.) I went back and looked at our friendship over these years with the new perspective; knowing we would come to this point. And ultimately, I’m back at the same point. It’s just bizarre! I’ve become close friends with many people who have MS over the years. Introduced to them because of our commonality. But this is the first time a good friend of mine has been diagnosed with MS and it seems like a freak occurrence. It got me thinking about where I was when I was in her place.

Everything was different when I was diagnosed. As a 20-year old college girl, nothing in my life was permanent. I struggled with the question marks of what my future would hold, a fear that sits on everyone’s diagnostic examining table. The big difference is that I had no stability. Nothing was permanent and in experiencing this with Linda, I found comfort in the place she is today. With her husband and kids, her career and identity, she is well established. She has a wonderful support network to help her navigate this. And while she has the strength of character to get through it on her own, she also has much more than I knew in 1988. As the anxiety wells up in me, her place in life brings me relief.

Going through this experience with her, I feel good about the comparison. I want to support her through it, in ways that weren’t available to me, to be that reassuring person I didn’t know. And there is something reparative for me in that role. It’s a great time to come home with this diagnosis. There are so many treatment options, so much hope. She will begin treating the “MS” immediately; she’ll hit the ground running. With all the anxiety and uncertainty, this is truly something to feel good about. And I hope ours is a comparison that helps her, makes her recognize all that she has.  And together we can have the “Damn, that must have sucked for you!” moment.

She invited me to come with her to her new neurologist to confirm her diagnosis. It was a very powerful experience. There were many things rushing through my brain, dodging the scars, while I tried to be present for her. We managed to bring laughter to the day in spite of the obvious emotional drag to the contrary. At one point, during the familiar exam her neurologist had noticed that her one leg was weaker than the other. She wondered whether he was pushing too hard on her leg. So he turned to me for a baseline. We laughed as I told him my deal. And his response was, “ Great, you have had MS for 21 years and you would never know.” Then he noted my stick propped up in the corner. And I wondered, am I an encouraging example for Linda or a frightening one? So we left and drove right to the local CVS and picked up some M&M chasers. This is a very important part of any diagnostic experience. And there are no side effects if you practice moderation… not that we did, just saying . 😉

Quite frankly I was excited to have an MS pal. (Though I tried to keep that to myself!) While I wouldn’t wish this on anyone, I can’t help but to appreciate having someone who is already a good friend to share this experience. It makes my two decades with this disease more valuable knowing that I can use it to help Linda. And the truth is, I can heal the parts of myself that have a 21-year old hurt from the time I went through this alone, not knowing about the healing properties of M&Ms.  😉

In this introspective time (seriously, all times are introspective for me!) I reread a comment she made on my blog back in October, in response to “this-ability.”

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)

Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge. Looking back at Linda’s words, I know that she has that strength already and that she will do well no matter what her future holds. So Linda, text me if you need me. I will always drive over with all your favorite M&Ms. (Did you know they have coconut now? Life is rich, isn’t it?)

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Hear the voice behind the words~

I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!

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Loss(t)

I’ve had MS for 21 years, 6 months, 16 days, 19 hours and an undetermined number of minutes.  Of course this was only accurate for the brief moment when I typed it and now the number has changed – as has my experience with loss.

As the words Multiple Sclerosis rolled off my diagnosing doctor’s lips, my fear lingered on what I would lose. It was all I could hear. From that moment on my future would be dictated by the loss de jour. With no menu-board telling me what I could expect to be served, I flinched not wanting to look forward. I began my 20s with undetermined, inevitable loss. And though my actual symptoms were slow to start… the loss (of security, confidence, constancy, steadiness, reliability, uniformity, evenness, permanence, solidity, stability, sure-ness) leaves me lost.

I lost my best friend 1 month, 9 days, 18 hours and an undetermined number of minutes ago, and that number is constantly changing. In all of my years of living with loss, nothing could prepare me to cope with losing her. It is a wound that will never heal. Like the scarring on my brain that doesn’t allow me to stand too long or walk too far, no neurons will compensate for the ones that have died. And while I will go on with my life, I have to relearn who I am without her. And I flinch not wanting to look forward.

My loss goes beyond physical limitations or the uncertainty I must embrace to keep going. My loss lives in the fear that I can’t be me because of all that isn’t here.

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Life isn’t static. Everyday we all have new input, new experiences, new reactions and new understandings. For me, one day can bring multiple levels of change. Like the other day, I thought I would run an errand. We needed some miscellaneous items from the town stationary store and my daughter had some money burning a hole in her pocket that she felt sure would be much happier in the local toy store cash register. So we set off and I dismissed the question marks that always fill my head when I leave the house without Keith. Of course I can go pickup a few things with my daughter. What is more basic than a mom running an errand? Unfortunately my apprehension was validated. After finding a parking spot too far away, walking to the stationary store and the toy store around the corner, I was exhausted. I could barely stand up as Madeline raced around trying to decide what her spending money would allow her to take home. I counted down the minutes I had left on my feet and alerted her to our pending departure. In a quick moment she made her decision and purchased a bear made entirely out of recycled plastic bottles. But as we started to leave she had changed her mind and wanted to return it. I’m not sure how I would have handled it, had I had the energy to make a reasonable decision. All I knew was that if we didn’t leave the store soon, I wouldn’t make it back to the car. After explaining that I couldn’t stand anymore, an angry Madeline left, ran ahead of me and out of sight. Unacceptable behavior under any circumstances – but it left me stranded in inadequacy. I was unable to be a mom on the most basic level. Frustrated and deflated, I limped toward the car, silenced by the distance and my lack of ability.

Of course she knows that running away from me is wrong. Was she just the petulant child storming off because she didn’t get what she wanted?  Or was she running from the reality of my MS and how it impacts our everyday.

At home that night, Keith and I were discussing how we would talk with her the next day, and I was feeling lost and un-able on so many levels. It is so hard to be forced to look at the basic things I can’t do. It knocks me off of the optimistic determination that carries me on most days. And I’m flailing as I search desperately for a foot-hold.

Later, I im’d a friend venting my frustration and adding to my list of witnesses. He told me of when he was teaching his kids the importance of holding his hand. Saying he needs to hold their hand so that he doesn’t get lost. And if they separated, they would grab his hand and say “Daddy, you don’t want to get lost.” It wasn’t too far a leap to recognize that Madeline and I both need each other to be safe in the world and stable on the ground. Reminding me of the very recent memory of two dear friends who came to rely on each other in just that way.

This is the loss I feared, 21 years ago at my diagnosis. I left that toy store unable to keep my daughter safe. Watching her do what I can’t do, out of the realm of my protective arms. She, running from my MS, masked by anger and frustration about a bear, and I slowly follow, wondering who I am. And just now, as I type this on what would have been Linda’s 43rd birthday, I find her… I know what she would have said had she been here. And I know that her presence will always help me- be found.

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Life– a work in progress

So here I am, 1.5 years after finishing my Master’s Degree working hard to get MS SoftServe produced and made available to the people that can use it- myself included.  I’m working my day job at NYU Film and TV, surrounded by inspiring individuals who are supportive and motivating. I come home to my husband who is both those things, as well as my daughter who is a magical person.

Madeline amazes me in how she takes life by the horns and simultaneously needs so much. It’s what raising a child seems to be all about. The give, the give, the take, the take, the take. On some days I feel that the life force is sucked out of me, and on others I feel like I just want to write down everything she says so that I never forget it.

One such moment occurred last week. Madeline has started ice-skating.  And like everything she tries, she starts out with a verve that is unstoppable.  She took to the ice quickly and in no time was circling the rink in a jerky stops and starts. Never quitting. We stood amazed.  Keith, being from Florida, isn’t interested in getting out on the ice and falling and standing and falling and standing.  I, of course have the more detailed explanation of why I’m not trying.

Standing on the side with my collapsable walking stick, I remember the times I went ice skating as a kid. Not a pro by any means… but I used to enjoy finding my own rhythm and even-paced speed. Decent enough to get by. I’m not comfortable being on the sidelines here. It feels like I should be out there with her. That pull doesn’t usually happen because Keith is always there. He is athletic and I never was. He plays with her in an energized way and coaches her through wide array of sport activities. I have no problem stepping to the sideline for that. But ice skating is my childhood. I should be able to show her how to do it. The two of us are on the sidelines watching in what felt like a useless position for parents to be stuck in.  If she needed help out there… we had no access to her.  Our friends jumped in there…offering a steady hand when she started to fall.  I kept my spirits up and remained enthusiastic for her accomplishments on the ice. It was her first time and she did great. We were really quite amazed.

That night we were having difficulty getting her to sleep. She was so psyched up about this new activity.  So I was plugging thoughts in to her brain like I do every night.  “Why don’t you dream about…. being a champion ice skater?”  She said  “mmhhmmm”.  “But one more thing mommy. I also want to be a doctor with a magic wand who cures everyone with MS, and then you could go skating with me mommy.”

It’s those moments…..

I bite my lip and squeeze my daughter and thank whatever force of life exists that controls the crazy ride we are all on.

(and then I start typing.)