Monthly Archives: October 2016

Uncriminal

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Ever since last week when I wrote about resilience, I’ve been thinking a lot about my friend, Bob (not his real name). Many people might say our friendship is strange because he (and his family) came into my life because his daughter was my student. I believe that the universe brought them to me because we were meant to be in each others’ lives. His daughter has long since graduated and is a full grown adult, yet I still hold this family extremely close to my heart. These days, unfortunately, Bob and I are pen pals, because he is incarcerated. 

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Bob is not an aggressive person, nor is he a violent criminal. He is serving his time in a minimum security prison, but  whatever he was convicted of is not important to me, nor does it make me love him any less. The Bob that I know is still that same gentle soul I have always known him to be. 

Bob has the most positive outlook on life that I have ever seen, and he has offered so much good to so many people that I find it hard to believe that any judge could, in good conscience, sentence him to any time in prison. 

First of all, Bob is an active member of Narcotics Anonymous, and has almost 30 years clean. Before his incarceration, he volunteered time at detox centers, drug treatment programs, and rehabilitation facilities speaking to others about NA and how he has accomplished his nearly 30 years clean. He also sponsored no fewer than a dozen other men who were working the NA program. The members of NA are an extended part of Bob’s family; they are always included in family and holiday celebrations so that they always have a place to go and feel loved. The scope of Bob’s influence affects hundreds of former addicts who are now on the right track and staying there, thanks in a large part to the positive example that he has always set for them. 

Prior to prison, he was also volunteering time at the rehabilitation facility where he recovered after suffering from a stroke. His recovery was remarkable and also not expected, yet he made a full recovery contrary to what the doctors believed was possible. But that’s how Bob is. He didn’t believe that it wasn’t in his power to recover, so he made it happen by putting in the hard work required. His only motive volunteering there was to offer hope to the many other patients rehabbing there who may have been given the same prognosis as he was given. In Bob’s world, the human spirit trumps medical science. He has helped me believe even more profoundly in the power of the universe, and how putting good out there comes back in spades in times of need. 

More than anything else, I have always been drawn to Bob’s positive energy. Being around him just makes me feel happy and loved. His smile is contagious and his heart loves deeply and without reservation. He never passes judgement on anyone because life circumstances are often beyond our control. He is courageous and strong, and I have never seen him without a smile on his face. He has such a kind soul and a way of making everyone feel special. To meet him, you would never know the adversity he has overcome as he never makes excuses, but instead embraces those incidents as part of who he has become. He is a humble gentleman, a loving father, a doting husband, a supportive friend, and inspiration to all who have met him. img_2482

Since we have become pen pals, it is even more obvious to me why I admire Bob so much. He shares with me the goings-on inside, while I try to share fun stories and pictures with him. Amazingly, although not surprising given his character, he feels worse for the inmates who are away and separated from their families, serving longer sentences than he is, because they have to suffer longer than he does. In the true spirit of “making lemonade”, Bob tells me that he reads, exercises, meditates, works an administrative job, and is currently passionately working on prison reform for non-violent offenders. But perhaps the statement that most affected me was when he told me that the way he sees things, what he is going through is a piece of cake compared to me living with MS every single day of my life. In the most recent letter I received from him, he told me that I should always consider him and his entire family part of my “ride or die” team. And I do. And the feeling is mutual.  

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I have learned so much about family (which includes the friends who are your chosen family) and love from Bob and his family: loving unconditionally, supporting endlessly, laughing despite crappy circumstances, and staying strong no matter what life throws your way. 

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I don’t get to see him these days, but he is in my thoughts daily because he inspires me every single day. I’m not sure if his family chose me or if I chose them, but either way, I’m not letting go of any of them. When Bob comes home, many, many people will be there waiting for him and bearing witness as he “reinvents himself” (his words, not mine), including me. And I intend on giving him the biggest, most amazing hug ever. I may have been the teacher when we first met, but as it turns out, Bob has taught me more than I ever thought possible, and for that alone, I am eternally grateful. 

Resilience

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Support groups have never been my thing. I tried many of them when I was newly diagnosed, and found it very difficult to find a group that had the perfect vibe for me. At first glance many seemed to be gripe sessions, which I was definitely NOT interested in. It wasn’t until I met my MS family that I knew I found my group. There happens to be a monthly support group offered through the MS Center where I am a patient, as well as a dedicated volunteer, and although I couldn’t make the meeting this month (dog mama responsibilities!), the topic was one I would have liked to be there for: resilience. 

Reason number one for me to be resilient: my guy.

Reason number one for me to be resilient: my guy.

I’m pretty sure I’ve written about resilience in many other entries, perhaps not worded as such, but it’s worth restating as often as possible, because without it, living well (and happily) with a chronic illness is an impossibility. When I think about the word itself and what it means, I could probably go on for days discussing what resilience really means. It means having the strength to pick myself up when I fall. It means being flexible and adapting to new normals all the time. It means having the power to endure setbacks, knowing there will be work to be done afterwards. It means being patient because relapses are bound to happen, and they improve at their own speed, not mine. It means being tough when I have to, while also remaining true to my heart. I believe that resilience is innate in all humans, but not all of us are forced to call upon it the way others are. 

These kids of mine make me so happy and their unconditional love is a constant reminder for me keep fighting.

These kids of mine make me so happy and their unconditional love is a constant reminder for me keep fighting.

Whether you suffer from chronic illness or not, being resilient is the only way you can overcome adversity, which presents itself in many forms, physical as well as emotional. I know plenty of people who have shown enormous strength and dignity by picking themselves up after emotional setbacks (that are often more difficult to overcome and adapt to than the physical ones), and moving beyond the heartbreak. This doesn’t mean that the emotions are forgotten, just that they dig deep and use those emotions to find the more profound meaning of life. 

An MS family plus the best trainer ever (top left), give me motivation, inspiration, strength, and laughter.

An MS family plus the best trainer ever (top left), give me motivation, inspiration, strength, and laughter.

People have often commented on my strength and how I live my life with Multiple Sclerosis, and I always answer the same way. I don’t think I do anything differently than anyone else would in my position. Back in the “olden days” when I had to self-inject because that was the only delivery method for our medications, I did what I had to do. No MS patient likes the idea of self-injecting, and I certainly was no fan of needles, but it was all I had, so I did it. I must have heard a million times from various people that they could never do that. I still say that the vast majority of people would do it if they had to, because you can’t possibly know what you are capable of until you don’t have a choice. And it is then, when you don’t have any other options, that you find the ability to tap into resources that you never even realized existed until you draw upon them.  

I'm so proud of the many, many former students who have remained in my life for so many years. I try to still be an example of strength for them as they deal with their own struggles.

I’m so proud of the many, many former students who have remained in my life for so many years. I try to still be an example of strength for them as they deal with their own struggles.

Part of resiliency in my world includes never comparing myself to other people. I try not to look back at the past unless I am making note of how far I have come. Physically, I know that my MS is progressing, but emotionally, I am getting stronger all the time. That’s not to say that people who are resilient are happy and optimistic 100% of the time. It simply means that we get through the highs AND the lows of life, and find a way to get through the lowest times because we know that once we do, the high times are pretty damn good. And we always, ALWAYS are appreciative for the life we have, because we are not ready for the alternative, and there is ALWAYS something worth living for. 

My beautiful, sweet nephew is growing so quickly. I am soaking up every single moment I can with him because one day, he will be a teenager and hanging with his auntie won't be such a cool thing to do.

My beautiful, sweet nephew is growing so quickly. I am soaking up every single moment I can with him because one day, he will be a teenager and hanging with his auntie won’t be such a cool thing to do.

We must constantly remind ourselves that we are only given one life (I think!), and it is fleeting. Every single one of us is dealt a different hand in life, and we have the option of playing or folding. Why would anyone want to fold when the cards might be in your favor? The game might be “rigged”. Hell, it could even be “crooked”. But the truth is, it’s the only game in town.

This was a night of Crazy 8's, the card game of choice in our house.

This was a night of Crazy 8’s, the card game of choice in our house.

Limitations

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Living with MS has been more of an education for me than any amount of schooling ever could be. It has taught me infinite lessons, not just about myself, but also about the people in my world. By far the most difficult lesson for me has been recognizing my limitations, and then adjusting to life with the ever-changing array of symptoms that bombard every aspect of every day. 

Multiple Sclerosis affects every single one of us patients differently. Hell, it even affects me personally differently every single day. The most annoying part is that some days, even the simplest tasks feel impossible while on other days I can fly through them, no problem. As someone who generally thrives on schedules and planning, this has been a particularly tough pill to swallow. MS does not follow plans, no matter how carefully laid out they may be. 

When thinking about my MS family, it’s obvious that we span a wide range of function (or lack thereof) for where each of us is in our disease course. But we all feel the same frustration when we compare ourselves to where we used to be. With something like MS, this mind set can drive us crazy because the truth is that there is no cure, and our goal is to slow the progression so that we can enjoy a higher quality of life for as long as possible.  So why is it that I get upset if some days I can’t even open up a bottle of Advil without help, while other days I can? 

It's not always an easy task opening up one of these bad boys! #fumblefingers

It’s not always an easy task opening up one of these bad boys! #fumblefingers

Lately there have been a few things happening that have totally thrown me for a loop. First of all, I am finding that my spatial relations are not good. It doesn’t seem like a big deal, right? I mean think about kids’ toys: the round peg goes in the round hole and the square peg goes into the square hole. In adult life this translates to things like will my car fit in that parking spot? Or can I successfully pull my car in and out of the garage? (That answer is no, by the way!) Then I start thinking that I need to downsize my car, which would hopefully make things easier for me, but a smaller car just isn’t as safe as the one I’m in now. And that leads me to thinking about the day when I have to face the fact that maybe I shouldn’t be driving at all anymore. These are mostly irrational thoughts, not to mention unrealistic ones, but that’s what happens when you’re facing a reality that can be precarious, to say the least. 

Also recently I’ve been thinking about how different my life is now in so many ways. Multi-tasking, something that was essential to be successful in my career, is a distant memory for me. Focus and attention span are not among my strengths either. I have found that by keeping a strict schedule for myself, I am still able to accomplish certain things on my own. But on the days that I don’t have anything “scheduled”, I am usually just a big old waste. My MS friends run around shopping, running errands, and going out with friends (all the while dealing with getting rollators in and out of their cars by themselves at every stop), while I am unable to even remove myself from the couch. And it’s not like I’m napping or anything, I’m just so darn body tired that I can’t even lift a limb. Then I start feeling like there is something wrong with me because even though I usually walk without any assistive device, I could never do what they do. I get down on myself and completely disappointed in myself, and the thoughts start spiraling out of control. Am I lazy? No one has ever called me that (at least not to my face) before, but why can’t I do what my MS friends do? Especially considering that on the outside, I appear more able-bodied than they are…

Common position: surrounded by love. This was taken on a particularly dizzy day... MSers can relate.

Common position: surrounded by love. This was taken on a particularly dizzy day… MSers can relate.

The answer is something that I have known for years, but it never gets any easier to understand. No two MS patients will ever experience the same disease course, and although their symptoms may be similar, their journeys can be incredibly different. Comparing myself to others, or even to myself, is not healthy because so many things are out of my control. Instead, I try to focus on the things that I can take control of because that’s the only way I can feel empowered. I concentrate on healthy eating (not without cheating here and there!) because it feels really good to fuel my body with the right things. Plus I exercise very regularly (per my schedule!), all varied and MS friendly…even at home. Equally important is the time I spend taking care of my mental state by volunteering (in order to feel useful and appreciated), meditating (to reach total relaxed awareness and bliss), and surrounding myself with optimistic, loving, and compassionate people (for the sake of filling up my heart). 

I have my limitations, for sure, but all of these things have made me, as a person, a much stronger and more self-aware individual. The most important lesson I’ve learned is that the word “limitation” need not have a negative connotation because limitations just create opportunities for hidden strengths to emerge, as long as you are open to seeing them. Yes, I have limitations but I am so much stronger as a result. As one of my MS sisters reminded me this week, Multiple Sclerosis may have limited me in many ways, but it has not (and could never) limit my ability to love. Amen, sister. 

Thank you, Cathy for reminding me about the most important thing of all. I love you!

Thank you, Cathy for reminding me about the most important thing of all. I love you!

Team Dawn

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When you think about modern day heroes, who comes to mind?  For many the answer is police officers, firefighters, first responders (of any sort), doctors, and nurses. Others might say their parents or perhaps a famous athlete is their hero. I’d like to think that there might even people out there who consider teachers to be heroes. 

Merriam-Webster offers the following as the definition of “hero”:

a  :  a mythological or legendary figure often of divine descent endowed with great strength or ability

b  :  an illustrious warrior

c  :  a man admired for his achievements and noble qualities

d  :  one who shows great courage

When I look at this definition, certain words jump out at me: strength, ability, warrior, admired, achievements, courage. There is one person in particular, who embodies each of these qualities, and in so many ways. She has been an inspiration to me since before I actually met her in person, and as is a normal occurrence for me, I am certain that the universe brought her into my life at a specific time and for a specific reason. 

Let me tell you about Dawn. The reason I knew her for so long before I met her is because she happens to be best friends with a dear member of my MS family. What Dawn learned is that when you are loved that much by any one of us, you automatically are loved by all five of us. Dawn is fun. She is kind. She takes care of all of us when we are all together. She is everything that you look for in a friend. She also happens to be the fiercest warrior I have ever known: she has been battling cancer since 2010. 

Silly antics with Dawn, the Fab Five, and the selfie stick.

Silly antics with Dawn, the Fab Five (minus one), and the selfie stick.

It started in her colon and metastasized to her ovaries and her liver by the time it was diagnosed. After surgery and months of chemotherapy, she showed no evidence of disease activity (NEDA) for a full year. Just when she thought she was in the clear, cancer came back with a vengeance. More surgeries and more chemotherapy followed. In addition to having more than half her liver and her gall bladder removed, she also had to wear an Iliostomy bag until she was stable enough to have the necessary corrective surgery. And her battle continued along in this manner: one step forward, two steps back. When it became clear that chemotherapy could no longer help her (after 114 treatments), Dawn started a medication that is specifically aimed at treating metastatic colorectal cancer (cancer of the colon or rectum) that has spread to other parts of the body for patients who are no longer responding to other therapies. This medication did not work for her, so she did what she had to do. She was accepted as a patient in a Phase I clinical trial at Memorial Sloan Kettering where she became patient number four out of 110 total patients in this particular trial. She is still fighting, despite adverse (and scary) reactions to her current treatment plan. 

The point is that Dawn does not give up. When she was diagnosed, she was told that only 18% of patients in the same situation make it past two years, and only 6% will make it to five years. Yet she maintains that “doing nothing is not in her playbook” and that she “still has a lot of fight in her”. Things change at the drop of a hat for her. One second everything seems fine, and then all of a sudden, her body has a crazy reaction. She just wants some stability, even if only for six months, since there really isn’t any data on her current protocol because it’s new and she’s a guinea pig. 

(Shout out to all who have given to the greater good by participating in a clinical trial , because without them, we would be stagnant in treating any medical conditions!)

Despite everything, Dawn handles her situation with strength and tenacity. In fact, just this week, she was admitted to the hospital, and as soon as she was discharged, she travelled home (two hours) so that she could shower and travel another hour (plus) so that she could be at her son’s soccer game. I have learned so much about not giving up just bearing witness to how Dawn lives her life. She loves deeply and laughs joyfully. And I know I’ve never heard her complain about the hand she’s been dealt. Not once. She simply reminds me to be present and enjoy every moment of every day. Having already beaten the odds, Dawn is determined to keep on doing so, because her will is that strong. She makes me see how important it is to appreciate the small things in life, and not to dwell on the negativity that can easily distract me. It’s a lesson we can all benefit from because it’s too easy to get so wrapped up in life that we forget to actually live. 

Strength? Oh yea.  Ability? Yup. Warrior? Without a doubt. Admired? For sure. Achievements? Absolutely. Courage? More than anyone I have ever known. Dawn is the epitome of each of these qualities and she is my real life hero…for everything that she has endured, and for continuing to fight, all while teaching everyone who knows her what life is really all about. 

My beloved MS family, all proud members of Team Dawn!

My beloved MS family, all proud members of Team Dawn!

I am inspired by Dawn every single day, and I am so grateful that my journey with MS happened to make our paths cross. She is an amazing mother, sister, aunt, and friend. She definitely causes a ripple effect of love and laughter (not to mention strength) that radiates outward to everyone she interacts with, and her positive energy lights up the room. I often reference the fact that although life with MS is not what I had planned, I have been given many gifts as a result, that I wouldn’t have been given otherwise. Dawn is one of those gems, and I will treasure her always. 

I am a proud member of Team Dawn… Stay strong, my friend! In your moments of weakness, the many members of your team will be strong for you! You got this, sister. Oh yea, and also, fuck cancer.