Monthly Archives: June 2018

Dear MS

Leave a reply

Dear MS,

I’ve spewed evil thoughts about you through the years, I’ve cursed your existence, not just in my life, but in the lives of all those affected, and I’ve fantasized about a world (and my life) without you in it. And here I am, looking back at my life knowing what I know about you now, understanding that I have been spending time with you since 1992 even though my official diagnosis came in 2003. There are things I want you to know, so here is my letter to you. It’s not exactly a love letter, but at this point it isn’t full of hate either.

You came along at a point early in my marriage, when things weren’t so hot. Neither of us was certain that we would last and we had our fair share of marital problems. But through the onset of my symptoms (which were more pronounced than anything I had experienced before), and the endless testing and doctors’ appointments that led to my diagnosis, you made us stronger. You drew us closer to each other than ever before. You made us see what matters most in a relationship, and you helped us re-prioritize our values. For this, I am endlessly grateful because without Bruce, I am nothing, and without him, I would not have the strength to deal with your constant need for attention.

This picture was taken just 11 days after diagnosis.

With the exception of the one relationship that matters most, you changed all of the other ones that existed in my world at that time, and not in a good way. You made people look at me differently, question my reality, and walk out of my life because they didn’t know how to act around me. Sadly this behavior has not changed, and after every relapse my support circle gets smaller. But without you, I never would have found my MS family, or realized the strength of support my little circle offers me. Without you, I wouldn’t express my gratitude to them as often as I do because it’s so important that they know that I appreciate every aspect of who they are and what they offer me, especially when I need them most.

This is my amazing MS family.

You took away my ability to do simple things because of neuropathy, heat intolerance, vertigo, “fumble fingers”, tremors, spasms, daily pain as well as “painsomnia”, and the list goes on. You forced me out of a career I loved far before I was ready to give it up. But in exchange, you gave me the ability to listen to my body, learn my limitations, and focus solely on me and my health. It’s a gift I never take for granted, and one that has improved my life in huge, wonderful ways.

You made me learn everything I could about a disease I knew nothing about until I had to. You made a girl who struggled with science learn more than she cared to about the brain and central nervous system. But because I learned so much, I have been able to educate others, including my students when I was working, my colleagues, and ultimately hundreds of others as a patient advocate speaker. You, MS, gave me my voice and you made it more powerful than it ever was without you.

Here’s me, spreading awareness and speaking to the high rollers at a very exclusive wine-tasting fundraiser.

You put me through the endless cycle of weight loss and weight gain thanks to your relapses that require high dose IV steroids, causing me to balloon up, and then leaving me with the daunting task of getting back to my “normal”, when you take more and more of my function every time. And because of that, I learned how to meditate, do yoga, and workout with a trainer who is passionate about helping MS patients. I am not going to lie and say I have great body image, but I’m learning how to accept my reality and be proud of the small accomplishments regardless of how small they may seem to others. I have learned to change my mindset and I exercise to maintain my strength, not to be skinny. I understand that I am a work in progress, and I will be for the rest of my life.

You have not managed to break my spirit, take away my ability to love and be loved, or change who I am fundamentally: the glass half-full girl. You have not made me ask “why me?”, because I think “why not me?”. Your presence in my life has helped me see more clearly, laugh more freely, and love more deeply than I ever thought possible. While other patients might write you a letter full of anger, resentment, and spite, that’s not how I roll. This letter is one full of gratitude for all that I am and all that I have despite it all. I am now and will forever be thankful for these lessons I have learned, no matter how difficult the road to learning them has been. Some people live an entire lifetime without knowing what I know now, so how could I possibly be angry? Life is what we make of it, and no matter how hard the journey, if you stop to appreciate all that you have rather than dwell on what you don’t, then you can join me in a life that may not be what you had planned, but is still overwhelmingly beautiful.

Without the stormy wether we would never be lucky enough to experience beauty like this…

 

 

Family

Leave a reply

This past weekend being Father’s Day has had me thinking a lot about family. This year, we were lucky enough to see Bru’s dad on Saturday, and my dad on Sunday. This a rare occurrence, as my dad has lived in Florida since the mid 1990’s, and Bruce’s Dad has only recently moved back to NJ. We seldom see our biological families, who are spread all over the place, but that doesn’t mean I don’t feel the love of family on a regular basis.

Biological family love (his side).

Biological family love (my side).

My first priority and number one family is the little one that Bru and I have built with each other and our little rescue dogs. They are my everything. We built this home (and our life) on love, and just walking in the door, even if Bru isn’t home, I am instantly at peace knowing that we share this amazing journey together. Without Bru by my side I would feel empty even if I was surrounded by “family”, because Bru has always been my person and what we have come to learn in recent months and years is that we really don’t need anyone else as long as we have each other. Not that I’m not grateful for our biological families or our families by choice, because I am. But when Bruce walks in the door at the end of the day, I feel complete.

My number one.

When I talk about family though, it’s usually not about my biological family, not because I don’t love them, it’s just a matter of proximity. Our time together is limited because we are spread out along the east coast. My family by choice, however,  is the most amazing conglomeration of beautiful people that includes my MS family, my sisters by choice (shout out to FS for truly being my anchor), and some very special former students and their families. Somehow, this crazy combination of love fulfills every single familial need I could ever have. With my family by choice I am loved unconditionally and not just when times are difficult. With my family by choice I never feel pressure, and it is always understood that I may not always make it to events but that doesn’t make me any less present. With my family by choice I don’t have to pretend that things are perfect if they aren’t, or that I’m feeling great when I’m not. There is an understanding between us that bonds us tightly to each other, and not because we are related but because we picked each other and that’s how we feel about one another. I am not a believer in the expression “blood is thicker than water”, because in my world, when I call you family it is because we have chosen that term for each other. Bloodline has nothing to do with it. Respect, love, shared joys (and tragedies), and support… those are the qualities that my family by choice is all about.

MS family.

Photography friends family.

My forever friend and sister by choice.

My anchor, and sister by choice.

My trainer, and family a gazillion times over.

No matter who you consider to be your family, love them, treasure them, and never waste an opportunity to tell them that you are grateful for them. I’m not sure if I feel this more deeply because we do not have any children of our own, or simply because that’s just who I am. Either way, I love them all (including my biological family) fiercely and with everything that I am.

This is the family that helped me celebrate the end of radiation for breast cancer. Only one person here is biologically related to me.

I may have had my struggles, thanks to MS and breast cancer, but I know that the universe made sure that I was (and still am) surrounded by “family” as a very happy consequence. The bonds that tie us together are stronger as a result, and I can’t imagine my life without them.

So while everyone spent the weekend celebrating family, I celebrated mine, too… biological and by choice. This entry is dedicated to every single member of my family, because you all fill my heart up with love and my spirit with joy. In case I haven’t told you recently, I love you all and I thank my lucky stars every damn day that the universe brought us together in whichever way it did and at whatever time it was when I needed you most.


(All of the above pictures are just a few of the many former students [families not included because they are camera shy!] who I can proudly say are integral members of my tribe and I love them all beyond words.)

Grateful

Leave a reply

Life is hard and it always throws unexpected curve balls our way. One of my amazingly awesome former students has had a pretty rough couple of days, and she made a post on Facebook where she countered every negative thing that has happened with a reason why she was grateful as a consequence. My head was full of thoughts about her: how proud I am of her, how much I love how much she is like me, and again, more pride. She also got me thinking about my own life, and I can honestly say that there is never a time when I am not grateful.

This is Dani. She makes me so proud and I love the special relationship we still share years after she graduated from high school.

This past week was a frustrating one for me as well and so in the spirit of my Dani’s post, I will share very much in the same way she did. If you can’t find gratitude in each and every situation then I feel sad for you. For example, I participated in the Spartan race last week, and as a result found myself with 2 sprained ankles and couch-bound, which is NOT how I spend my time.  Instead of sulking about it, I found gratitude in the fact that I did something on my bucket list. My body may not serve me perfectly all the time, and it may not look exactly how I want it yet, but I am still grateful for all the things that it allows me to do despite 15 years with MS and a recent battle with breast cancer. I am grateful that I was able to raise awareness in this very unique way, and not just for myself but on behalf of the many, many MS patients that can’t.

I was banged up and disappointed in my performance, but I was so damn grateful for the amount of support I received from friends, former students, and family. It reminded me that my circle is small but mighty, and I felt so much love in every single text, phone call, Facebook post, and however else I was contacted. How could I possibly not feel gratitude with all that love and support surrounding me?

The thing about feeling grateful is that it’s not a forced emotion. It comes when you change the way you look at life. Usually you find it when you’ve been through things that make you see how lucky you are despite the obstacles that life throws your way. I can say that truly feeling grateful has changed my perspective on absolutely everything that I go through. I have always been the glass half-full girl, and when gratitude is added to the mix, appreciation for life and the lessons we learn along the way is taken to a whole new level.

Life isn’t easy, especially when you are first adulting, and that’s one of the reasons I am so proud of Dani. She can look beyond the icky stuff and see the beauty of each situation, and she can articulate it for others who have not yet developed the ability to really appreciate what they have rather than dwelling on what they don’t have. There are so many reasons why she’s my “twin minus twenty”, and her Facebook post reminded me of just this one. My career may have ended abruptly and not in the way I had always envisioned, but like Dani, I am able to extract the good and be grateful for it.

She is a true treasure and I am endlessly proud of her.

I hope this will be my legacy from my career as a teacher. If my former students don’t remember a single word of the textbook Spanish that I taught them, I’m ok with that. But if they remember how I looked at life, not letting the negative overpower my world and they emulate that as adults, then I have truly achieved success as a teacher… because let’s face it, knowing how to make that lemonade is way more important in the long run, and that’s what I want them all to remember. Thank you Dani, for validating my life’s work. Keep on being you, and the world is yours!

Spartan

Leave a reply

This past weekend I acknowledged the 15th anniversary of my MS diagnosis (June 2, 2003). I always try to do something big, and this year, having reached number 15 being as strong as I am, I felt an intense urge to really do it up. Months ago, my forever friend Meg (who is now on her way to her second trifecta)  and I registered for the Tri-State Spartan Sprint in Tuxedo, NY together.

All the items necessary for hitting the course!

I work out hard all week long and have been doing so for 4 years now. I thought I was ready. I thought how hard could it be? I thought I could prove to myself and MS that 15 years later, I am stronger than I have ever been… and I am.

But Spartan races are not for the weak, of body or of mind. There was no way that I could have done enough mental preparation for this. I should have known when I had to hurl my body over a hurdle that was about shoulder height just to get to the starting line!

My bib number.

The course was over four miles long and included 22 obstacles. The course went up and down the mountain at Tuxedo Ridge Ski Resort, and so being unable to feel my feet (such is my life for the past 15 years), that alone was a challenge.

Mandatory pre-race selfie!

What originally was supposed to be cloudy and on the cool side, suddenly cleared up leaving us racing in heat and humidity… definitely no friend of MS patients, who tend to be unable to thermoregulate because our inner thermometers are broken. For me, overheating is always an issue and exercising always includes great care to hydrate and rest in between bursts of exertion. I started overheating early. Generally the first sign of this for me is my vision. Meg was almost ready to call a medic because I was listing to the left and she was concerned. But I rested, took a sip of water, and I carried on, refusing to quit. And this was my issue the entire day. I would feel ok then all of a sudden my eyes would start again. So many times I said to her I can’t do this, and she told me I could. So many times I asked what the f*ck was I thinking, and she said you got this. In addition to the numb feet, my legs felt as though they were wrapped in lead and every step was a workout in itself. The terrain was rough and I rolled both ankles several times because that’s what happens when you can’t feel your feet. Every time I was ready to quit Meg set a small goal, like let’s get to that tree up there and then we’ll rest. Without her, I definitely would have called it quits.

Results of the ankle rolls.

I think my biggest take-away from the day was how kind random strangers were. Every time I rested with my head down trying to get my eyes under control, multiple people stopped to ask if I was ok, if I needed fuel, or if I needed water. Every single time. Here were perfect strangers willing to sacrifice their end result by offering to assist someone like me. I was overwhelmed by their kindness. The Spartan community is very supportive whether it’s your first race, or you’re a seasoned spartan with medals galore.

There were a few obstacles that brought us down to where the spectators were, and as I saw Bruce, my mother-in-law, and her guy there to support me, it gave me renewed strength, even though I was at the brink of tears, because I looked ahead at the course and saw that we were just halfway done and the next leg of the course brought us up the mountain yet again.

This was the vertical cargo bet, which Bruce was able to watch me do and capture this photo.

Again, random strangers running past me saying you got this girl, and stay with it… I never expected that in the least. I’m not saying I did every single obstacle but I’m proud of the ones that I did, and when I finally smelled that fire burning at the end (because the fire jump is the last obstacle), I felt like I was seriously going to die. Included in the last obstacles before the fire jump were the A-frame cargo net which was super high, and the barbed wire crawl, which went uphill! I definitely picked and chose the obstacles I felt confident about because I was trying to conserve my energy.

When we finally came to the fire jump, I was terrified. But I did it. Ok so I fell after the jump and I literally rolled myself across the finish line. The volunteers were so nice because they just wanted to place that medal on my neck. They helped me up and made sure I had some recovery drink to help me, and amazingly people who had passed me along the way were full of congratulations for me.

I earned that medal. with every fiber of my being.

I didn’t have the energy to walk all the way to where our cars were parked, and I met a bunch of people who were willing to help me. They told Bruce exactly where he could pull his car up (since parking was about a mile away) so I could limit the amount of energy I needed to get there. Many people came up to me and told me that I inspired them and gave me hugs and high fives.

So I didn’t reach my goal time, and I felt disappointed in my performance… but I did it. I did it for all those who suffer from MS or any chronic illness, because we just need to believe in ourselves to accomplish our dreams. This Spartan Sprint was on my bucket list, and no matter how hard it was, I finished. That’s the thing. Not everyone with MS can even think about a race like this one, but your challenges are meant to challenge YOU. No matter how small or big. This was big, and I wouldn’t recommend it for everyone. Here I am two days later with ice and my portable tens machine, Advil, and plenty of fluids just trying to feel human again. I have no regrets at all because I set out on this mission to flip MS the big ole bird after 15 years, and I think I did that. Meg is a rock star and she will continue to participate in more Spartan races that are longer and more challenging than this one, and she’s definitely my hero after racing by my side and sacrificing her time to make sure to be there for me. As for me, I’ll stick to my yoga mat. I never feel depleted of energy, and I am definitely better on my head than on my feet. As lovely as the Spartan community is, I salute them with a strong AROO! But in my world, namaste is more my style.

Namaste.