Monthly Archives: October 2014

Link

Please visit the website below and read the poem “The Dash” by Linda Ellis. She does not want her poem to be reproduced or copied but she welcomes you to read her poem on her website. I promise you that it will be worth your time to read it, and it could possibly change your life.

http://www.linda-ellis.com/the-dash-the-dash-poem-by-linda-ellis-.html

After my grandmother died in 1994, my grandfather and I would go to her grave together ever year. It was one of our little rituals. I’d go pick him up, we’d go visit Grandma, and then he would buy me lunch at the diner (insert comment on stereotypical Jews here). Each year I watched him read from his Yiddish prayer book, ask her to pray for all of us, and sob on her headstone. And every single year, he would repeat this same request: when he died, he did not want the year of his death carved into his headstone. I can still hear him telling me, “No end date!”

Me and my Gramps. He was the apple of my eye and I loved him so very much.

Me and my Gramps. He was the apple of my eye and I loved him so very much.

I hadn’t really considered my grandfather’s reasoning until recently when a dear friend introduced me to the poem “The Dash” by Linda Ellis (I really hope you clicked the link above!). I finally understand now why my Gramps was so insistent on this tiny detail, which once upon a time seemed ridiculous to me.

So here I am almost two years after his death, and at long last I recognize the lesson that my grandfather (even if inadvertently) taught me. What was most important to him was the life he lived, not the day he died. He did not want to anyone to focus on his death, but instead he wanted to be remembered for the person that he was.

Notice the difference between my grandmother's stone and my grandfather's. No end date!

Notice the difference between my grandmother’s stone and my grandfather’s. No end date!

Ever since I read that poem, I can’t stop thinking about how adamant he was about the “end date”. I also can’t stop thinking about my dash, but not in a morbid way. Quite the contrary, actually.

I have been reflecting on the many changes that have happened in my life during the last year, and I feel so incredibly grateful. I never would have chosen disability retirement if I had a choice, but I didn’t. As much as I miss my students (my children), I am secure in the fact that I taught them something, no matter how small, at some point in time. I would bet money that if they were talking about me after my passing, they would not be talking about the “end date”. They would be talking about the dash. On the other side of the coin, I find that I am a much more patient, loving, and attentive wife, sister, daughter, and friend since I stopped working. As much as I treasured every moment as a teacher, I was never really living my dash when I was working. I was the typical “live to work”, not “work to live” kind of girl. I never completely enjoyed anything because I was only ever able to focus on my job. It was always on my mind, because the job of a teacher is never done (shout out to my teacher peeps out there!). It is physical, emotional, stressful, demanding, and oftentimes, thankless. It’s no wonder that me, and my poor compromised immune system cracked under the pressure! Now that I am 100% focused on life outside of being a teacher, I am actually concentrating on my dash.

I loved being a teacher. I hope I’ll always be remembered for it (in a good way!). But now I’m living for me and enjoying every moment that I don’t spend working….or agonizing over work. I haven’t taken the teaching part out of my dash, I’m just adding to it now! I’m so grateful that I have been given the opportunity to live my dash now, before it’s too late, because I’m just getting started on this chapter of my story.

 

 

Fatigue

My inspiration for this week’s piece was a blog I read last week that discussed fatigue, not in a way that would make others understand what fatigue truly feels like, but rather using a more clinical explanation. For those of us who suffer from chronic illnesses that include disabling fatigue, the worst thing anyone can say is, “I’m so tired!”

Allow me to explain fatigue in the best way I know how. Being tired is not the same as being fatigued. Everyone on the planet understands what it feels like to be tired, even newborn babies. We cannot go without sleep, and we know when we need it. When we sleep enough, we wake up refreshed.

Fatigue, as it affects me, is a crippling heaviness that overtakes my entire body. It can sneak up on me when I least expect it, but more often it is held at arm’s length thanks to the miracle of modern medicine. At times, overwhelming fatigue can’t be held at bay, despite using the most powerful of medications. At my worst moments, the mere thought of picking up my leg to take a step forward makes me want to just sit down and cry. My limbs feel as though they are wrapped in lead and they are being pulled down towards the floor. There are days that I must summon every bit of energy in my body simply to get out of bed. I can go for days at a time, too exhausted to eat or (dare I say) shower. Fatigue can be both physical and mental. By the end of any given day I am usually too mentally drained, probably from the constant inner pep talks to keep myself going, to talk to anyone or do anything aside from sitting down and zoning out.

This is typically how you will find me when the fatigue catches up to me.

This is typically how you will find me when the fatigue catches up to me.

When I was working, I never could go through a single day without multiple colleagues expounding upon how utterly exhausted they were, usually because they were doing social things the night before (I’m not even going to talk about my lack of doing anything social on a school night here!). I politely listened, inserting words of sympathy where appropriate. Little did they know that if they stopped by my room at the end of the day, they would find me with my head down on my desk, crying and wondering how I would muster up the strength to get in my car and drive home. Feeling “tired” can’t even compare to being physically unable to my body when these waves of fatigue permeate my entire being, leaving me incapacitated. I am amazed that I lasted as long as I did as a teacher, but after years enduring my body’s torturous revolt against me, I knew it was time to wave the white flag.

Often people who don’t understand how debilitating this symptom can be are quick to judge, and assume that I am lazy, unmotivated, or making excuses for not being social. Nothing could be farther from the truth. Invisible illnesses throw everyone for a loop, most notably the person who suffers from them. If you see someone (like me) parking in a handicap spot at the grocery store or at the mall, please don’t presume that she doesn’t “need” that spot. The truth is that she is probably dealing with a host of symptoms under the surface that are not visible to others. I would gladly trade in my handicap placard for my pre-MS life, healthy immune system and all. This is not the life that I had imagined for myself, but it is mine. It sure would be easier if the general population did not make false assumptions about who I am based upon accommodations that are necessary for me to live as close to a normal life as possible. So the next time you say that you are tired, consider how lucky you are. The quick fix for being tired is simply to take a nap or to go to bed early. Please understand that there is not a quick fix for being fatigued, and even though you can’t see it, it is a constant in my life. It is a part of my daily struggle, and even though I’d love for others to be able to step inside my body to really feel what fatigue is, I would never wish it on anyone.

The moral of the story is don’t judge anyone based on what you can or can’t see. My struggle is real and I should not be made to justify myself to anyone solely because it’s not visible on the outside. It’s like the old adages say: don’t judge a book by its cover; appearances can be deceiving; all that glitters is not gold; don’t just scratch the surface; don’t criticize me until you have walked a mile in my shoes…not even high heels. Just the boring flats I am forced to wear since MS came along!

I can't wear any of the fun shoes I used to wear before MS because of my lack of balance.

I can’t wear any of the fun shoes I used to wear before MS because of my lack of balance.

 

To reproduce or not to reproduce?

Bruce and I have never really followed the flock where it comes to what the social norms are regarding relationships. By the time we got married, we had known each other for 10 years already. There was no proposal, nor was there an engagement. We simply decided it was time. We didn’t want a big wedding, and we opted instead for a trip to Las Vegas, just the two of us. On April 17, 2000, Bruce and I tied the knot in front of a webcam, and no one else. It was perfectly us, and I wouldn’t have had it any other way.

Picture taken at the renewal of our vows on our 10th wedding anniversary.

Picture taken at the renewal of our vows on our 10th wedding anniversary.

Having children was never a part of our plan. But everyone always told us that we would change our minds. When our friends started having babies, we were still no closer to feeling the need to have children. We were often told that we were selfish, or that we couldn’t possibly know what real love is until we experienced being parents. People also asked us who would take care of us when we are old if we don’t have kids. As if all of this wasn’t insulting enough, many people assumed that we hated children solely because we didn’t have any. Clearly I don’t hate children. My entire life was centered on my career as a teacher and included many adopted “kids”.

This was a very special moment between me and one of my kids at graduation.

This was a very special moment between me and one of my kids at graduation.

Two years into our marriage, MS became the silent third partner in our relationship. Having children is a very personal decision for any couple, but one that needs to be more seriously considered when there is a chronic, progressive, and debilitating illness involved. Even though I didn’t think I wanted to reproduce, I was angry because I felt that MS took the choice away from me. Yes, many women with MS give birth and are completely fine. But many women with MS give birth and do not fare so well afterwards. There were far too many “what ifs” for me to be willing to take that chance. Furthermore, I was struggling to make it through each day as it was, and could not imagine having to care for a child on top of that. It just was not feasible. Having a child for the wrong reasons (like having someone to take care of you in your old age) is selfish. Making a responsible decision is not.

I love this photo of my "niece" Peyton. I got to take her into the ocean for the first time ever when she was just a little peanut. She is 8 years old already!

I love this photo of my “niece” Peyton. I got to take her into the ocean for the first time ever when she was just a little peanut. She is 8 years old already!

As a teacher, I felt that I gave birth to a new litter of kids every single year. If anyone ever asked me how many children I had, my response was always, “150 this year.” I took pride in their smallest of accomplishments, and cried many tears over their disappointments. I still do. I always will. Isn’t that what parents do? I loved them as if they were my own children, and no one can dispute that. Bruce and I have many little ones in our life. We love them to death and they love us right back. Being cool Aunt Rennie and cool Uncle Bruce is the perfect compromise.

Cool Aunt Rennie and Uncle Bruce with some of our favorite kiddos.

Cool Aunt Rennie and Uncle Bruce with some of our favorite kiddos.

My value as a woman (and a human being) is not based on whether or not I have children. Similarly, my relationship with my husband is not an inferior one because our family does not include offspring. In fact, it’s quite the opposite. Our bond is stronger than ever. Going through the process of being diagnosed with MS completely changed our relationship for the better, as have our experiences with my recent disability and early retirement. His support for me has never wavered, and I’ll always be grateful for that. There is no one in the world I’d rather spend my time with. Children don’t make a family… love does. I can say with 100% certainty that I know what real love is because I live it every day with my little (child-free, dog-full) family.

My kids. They never talk back and I don't have to pay for college!

My kids. They never talk back and I don’t have to pay for college!

 

 

 

Trade-offs

Everyone who has ever known me knows that I am a planner. I used to plan out every detail of my life. I carefully planned each aspect of my life, from the very smallest such as my lunches for the week, to the bigger moments, such as celebrations or get-togethers with my family and friends. When I was diagnosed with MS, my very first thought was that Multiple Sclerosis does not suit my lifestyle. MS doesn’t suit anyone’s lifestyle really, but for someone who maps out her life, it is completely and utterly catastrophic.

This is an event that I love but it is an exhausting day, tailgating before and after the game. It's easily a 10 - 12 hour commitment!

Rutgers Homecoming is an event that I love but it is an exhausting day, tailgating before and after the game. It’s easily a 10 – 12 hour commitment!

When MS came along, I was forced to re-think my approach to just about everything. Now instead of planning the minutia of daily life, I found myself always having a “Plan A” and a “Plan B”. For every well-intentioned plan, I always had a secondary plan, “just in case”. It didn’t take me long to realize that if I just “went with the flow” more often, it would be a whole lot less work for me. It was then that I learned that everything in my life is a trade-off.

Because people can’t see my symptoms, they often don’t understand my limitations. On the surface, everything appears as it should. I walk unassisted (right now), and there are no outward signs of my illness. But inside it is a different story entirely. I haven’t felt my left side in almost 12 years, which causes me to lose balance, stumble, fall, burn, or even cut myself without knowing it. I go through massive itching fits that can’t be satiated by anything because it’s a neurological itch, and as a result I scratch my skin raw. I have bone deep, aching pain in my lower limbs, which keeps me from getting comfortable (especially at night), so I seldom sleep for more than an hour or two at one clip. There are many other symptoms that I won’t list here, and lack of sleep exacerbates them all. But if you saw me on the street, you wouldn’t know a thing. You would probably even wonder why I deserve a handicap parking spot if you saw me get out of my car. One thing I know for certain is that I would trade looking good for feeling well any day of the week if I had the choice.

My sister's wedding was amazing! I rested the whole week leading up to it, and it took nearly 2 weeks for me to recover. Worth every second!

My sister’s wedding was amazing! I rested the whole week leading up to it, and it took nearly 2 weeks for me to recover. Worth every second! (photo credit: Idalia Photography)

What I have learned through the years is that for everything I want to do, there is always a trade-off. If I want to plan on a weekend packed with friends and family, I know I need to spend at least 2 days resting up beforehand, and then a week to recover afterwards. If I go grocery shopping one morning, I can’t expect to be able to cook that evening.

At first, this was frustrating beyond belief. I used to work from 6 am – 5 pm, work extra activities at work, go to the gym, go home and eat meals I had prepared on the weekends while still managing to grade papers, write lesson plans, and even be social! But now, all these years later, I am ok with the trade-off. When there is something really special on my calendar, I plan ahead so that I can enjoy it to the fullest, knowing that I will need to factor in recovery time before making further plans. It’s totally worth it because when I do what my body has taught me, I am fully present and able to enjoy every single moment.

It was a big year with both my sister and my brother-in-law getting married. This was another great day that I paid for after the fact. No regrets! (photo credit: Idalia Photography)

It was a big year with both my sister and my brother-in-law getting married. This was another great day that I paid for after the fact. No regrets! (photo credit: Idalia Photography)

The ultimate trade-off is the one in which I traded my old life for one that includes MS. As much as I have begged and pleaded for a cure, I have to be grateful for the many gifts I have been given as a result of my illness. I have traveled near and far, sharing my story to help and inspire hope in others as they adjust to their diagnoses. I discovered an inner strength that I never knew I had, and a passion for finding happiness, even for just one moment, in every single day. I have learned to love harder, and to hate less. Most importantly, I have found an amazing group of inspirational, supportive, and understanding friends that I never would have met otherwise. I absolutely wish there was no MS. But there is, and I wouldn’t trade these precious gifts for anything.

Colorado

The bestie and me beginning our journey to Colorado!

The bestie and me beginning our journey to Colorado!

This summer, I was fortunate enough to travel to Colorado with my bestie. We had been talking about taking this trip together for quite some time, but we just kept letting the idea slide. Traveling with MS can be very overwhelming, for so many reasons. As much as I had dreamed about taking this trip, it did not come without a fair share of anxiety. I always worry that I won’t be able to keep up with other people because my stamina is not the same as most other people. I know my limitations, and sometimes I feel like I am letting people down when I can’t do the same things as they can.

I desperately wanted to go to Colorado, but I didn’t want to hold her back. When I told her how I was feeling conflicted and explained why, I realized just how understanding my bestie is. She told me that this trip was about what we both wanted: good food, good friends, and good photos.

Aspen Mountain

From the top of Aspen Mountain

Although the sites that we visited on our trip were spectacular to say the least, my favorite part was meeting my bestie’s lifelong friend who I had only ever heard stories about. It’s pretty amazing how well you can feel like you know someone simply because they play an important role in a loved one’s life. The backdrop for our trip was breathtaking, and the company made it that much more memorable.

 

The beautiful view at Maroon Bells.

The beautiful view at Maroon Bells.

Lori and her forever friend, Rachel, at Maroon Bells.

Lori and her forever friend, Rachel, at Maroon Bells.

Whatever we were doing, my bestie stopped often to ask if I was ok. I think the cutest part was that whenever we were walking and came to a narrow path requiring us to walk single file, she made me walk in front of her and she said, “Just in case you fall!” It’s mostly funny because she is all of 5 feet tall and I would crush her to death if I fell on her. When I told her that, she explained that she didn’t care, and at least it would be a soft spot for me to land.

View of the Colorado River in Glenwood Springs.

View of the Colorado River in Glenwood Springs.

True to her word as always, the trip was exactly as she had sold it to me. The food was spectacular. We ate well and we walked a ton, so we didn’t even feel bad about it! The friends were fantastic. I can never spend too much time with my bestie. Getting to know her lifelong friend somehow made me love her even more! Lastly, the photos: several hundred were taken and the beauty of Colorado is obvious in every single one of them. This “girls’ getaway” is one trip that I will never forget because of the awe-inspiring scenery, and also because of how much I adore and appreciate my bestie for always being so attentive to me.

At the continental divide, above the tree line.

At the continental divide, above the tree line.

Thank you, my soul sister, for your unwavering support and unconditional love. Here’s to a lifetime of adventures that await us, except next time, you walk in front of me so I can catch you when you fall!