Monthly Archives: June 2016

Grief

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This week, I am proudly presenting another piece written by my one and only, who walks us through the stages of grief associated with my MS diagnosis. His honesty is remarkable, and it’s pretty clear how raw these emotions can still be today, more than thirteen years later. This is a great read for care partners and patients alike! Let’s all show Bruce some love here!

When Rennie was diagnosed with Multiple Sclerosis in the Summer of 2003, it completely rocked our world. The future we thought we faced together as then 31 year old “kids” was irreparably changed, and the uncertainty of what lay ahead of us was hard to wrap our heads around. Without even truly understanding what exactly a diagnosis of MS meant, it was at that point (although we didn’t know it at the time) that we began to grieve. MS is not generally a death sentence (cases that severe are very, very rare), so what exactly were we grieving for? While not necessarily being conscious of it, we began to grieve for the life we’d begun to plan for. We began to grieve for the promise of our then young marriage (just three years old at that time), and wondered what MS might change about our relationship. And we began to grieve for the innocence that comes with a “normal” life in which you’re not faced with a chronic and debilitating illness, and can instead look only at your future with optimism and hope. As it turned out, this was just the beginning of the grieving process.

Over the next several years, we both struggled greatly coming to terms with the hand Rennie had been dealt. Rennie had to face the prospect of her body betraying her as the disease progressed and caused irreparable damage to her brain and central nervous system. And I, as her husband and best friend, was trying to figure out how to successfully fill my new role as her care partner, while dealing with the fear and anxiety that her diagnosis had already consumed me with. It was a journey that would take me down some very dark and frightening paths, and eventually lead me to a better understanding of who I am and all that I am capable of. And that journey would not be complete until I could finally accept and understand the grief that I was experiencing. The issue was that I didn’t really grasp what exactly it was that I was going through, and it would take until the Winter of 2006 for me to come to that realization.

Around that time, with the urging of our family physician and an increasingly desperate Rennie (because she just couldn’t take my issues on top of everything she was already going through), I’d begun seeing a therapist as a means of working through the panic attacks and crippling anxiety that had taken over my life since the Fall of 2004. These problems started almost immediately after Rennie had her first MS relapse since her initial diagnosis, and while she’d long since rebounded from it I was still a mess. Thankfully, within a few sessions my mood began to stabilize, as the therapist I was seeing assured me that everything I was experiencing was a normal reaction to Ren’s MS. It was then that I first learned that not only had I been grieving over things for the last two and a half years, but that my experience almost completely followed the psychological theory known as the Five Stages of Grief.

This was taken in the midst of my most turbulent time.

This was taken in the midst of my most turbulent time.

The Five Stages of Grief is the theory that when one experiences a traumatic life-altering event (usually the death of a loved one), their psyche begins a step-by-step process of dealing with the grief associated with that event. The five stages are:

  1. Denial
  2. Bargaining
  3. Depression
  4. Anger
  5. Acceptance

When my therapist began to explain the theory in more detail, and discuss my recent experiences with me, everything became clearer. While I wasn’t one to believe in such things, I could see almost immediately that what I’d been going through wasn’t unusual, and that I wasn’t crazy. The conversation that day finally allowed me to begin to come to terms with just how much Ren’s diagnosis had screwed me up, even though I tried to act all the time like it hadn’t. It also made me realize that I’d already been through the Denial and Bargaining stages, was now firmly entrenched in the Depression stage, and still had the Anger and Acceptance stages to go.

So, what exactly were my experiences with the Five Stages of Grief?

Denial: Almost from the second that we were told by the neurologist that Ren had MS, I found myself denying that her diagnosis was anything to be concerned about. In fact, because we’d spent months wondering exactly what Ren was suffering from (with one option even being a brain tumor), the answer of Multiple Sclerosis initially didn’t sound all that bad to me. I even said to the doctor, “Well, I guess it could be worse, right?” To which he tersely responded, “No, this is bad. Very bad.” Feeding my denial was the fact that neither of us really knew what MS was…so there was some blissful ignorance in those early days that probably helped us to get through the initial shock. In any case, even though we quickly began to educate ourselves about the disease, I realize now that as a coping mechanism I began to block Ren’s illness out of my mind as much as possible. This became easier once the symptoms of the relapse she experienced that lead to her diagnosis began to subside, and things almost returned to a sense of normalcy. She’d lost a lot of strength and function, and now had permanent numbness on the entire left side of her body, but to someone just hoping against hope that things were OK everything seemed to be normal to me. It was a “new normal,” of course, as Ren now had the daily injections of Betaseron (meant to slow the progression of MS) to administer to herself (sometimes with my assistance), as well as regularly scheduled visits to the neurologist added to her calendar. Still, things were good, and we were both hopeful that they’d stay that way.

Bargaining: The first rumblings that things were beginning to affect me happened about a year after Ren’s diagnosis. After attending countless seminars about MS, and educating ourselves almost to the point of oversaturation, I started to wonder what warning signs I’d missed that she had not been well. It was easy to see that she’d been suffering from MS for several years (even before we became a couple), and I was now obsessed with figuring out what I hadn’t noticed over the eight years we’d been together at that point. She’d gotten progressively clumsier since we’d been together, which was odd because she’d always been an athlete, but Ren chalked it up to her just being a clutz. She’d had a series of strange illnesses as well, including a temporary loss of hearing in one of her ears that was explained away by a doctor as an inner ear infection. As I thought more and more about it, I got upset with myself that I hadn’t noticed that something was wrong earlier. Of course, what did it really matter? Ren would still have MS, and would only have been diagnosed earlier. While the positive would have been that she’d have been able to start on the disease-modifying drugs sooner, it ultimately wouldn’t have accomplished much at all. I was really just beating myself up over it.

On this trip to Washington, D.C., I was a complete wreck, and Ren did a lot of exploring on her own while I was experiencing such severe panic attacks that I could hardly leave the hotel room.

On this trip to Washington, D.C., I was a complete wreck, and Ren did a lot of exploring on her own while I was experiencing such severe panic attacks that I could hardly leave the hotel room.

Depression: This was the stage when everything finally hit me like a ton of bricks. As mentioned earlier, when Ren had her first relapse after diagnosis in the Fall of 2004, I began to completely meltdown and spiral out of control. The realization that everything wasn’t alright, and that she really did have a progressive illness caused me to go down a “rabbit hole” of anxiety (not unusual, as anxiety and depression are so closely linked to one another). It got so bad so quickly that I even became somewhat of a hypochondriac, routinely taking trips to a series of doctors in search of whatever mysterious illness I thought I had that week. It not only became exhausting for me, but for Ren as well, as she got swept up in my craziness too. One time she had to take me to the emergency room when I was convinced that my throat was closing up and I couldn’t breathe. All the proof I needed that it was psychosomatic came when as soon as the doctor on call examined me, the constricting feeling in my throat immediately disappeared. I reached a breaking point just before Christmas when I went back to my hometown to see my childhood doctor. I was desperate to find out what was wrong with me, and what was causing all of these unrelated symptoms. Within moments of seeing me, and hearing me talk about everything that had been happening, this doctor did something all of the others I’d seen had not done. He put his arm around me, looked me in the eyes, and simply told me that what I was going through was normal. Normal because I had been in complete denial about Ren’s health, and once the recent relapse made it clear that she was not OK, all the anxiety and depression I’d been bottling up about the situation was released at once. He told me I didn’t need a physician…I needed a therapist. It took me a while to accept this news, and to follow his advice, but once I did I began the long, slow climb out of the crater I had found myself in.

Anger: Full disclosure here: I’ve always been a pretty angry guy (although not so much anymore…middle age seems to have mellowed me). So once I made it through the period of deep depression and anxiety I’d been in, it did not take long for the next stage to take hold of me. I felt that Ren and I had been robbed of the great life we’d planned with one another, and the more I thought about it the angrier I got. Sleep became rare for me, as I’d toss and turn all night, burning up inside about the hand we’d been dealt. Therapy helped somewhat, but since that was just once every two weeks, I’d find myself consumed with anger almost 24/7. I took to writing in a journal (something not in my personality at all), with the hope that it might help me to purge myself of the resentment I had about everything. Like therapy, it helped a little, but it was not enough. At a time when Ren’s future seemed so uncertain and I should have been focused on living as best I could in the moment, I was completely consumed by negative thoughts. It took about another year (and pharmaceutical intervention) for me to finally release the anger and move on to the final stage of grief.

Acceptance: Sometime in the first half of 2006, things began to settle down for me. The anger, anxiety and depression were still there on occasion, but it was tempered with the realization that I really wanted to enjoy the life I’d built with Ren. Truthfully, the strength and bravery she’d shown over the previous three years as she got used to the idea that she had a disease like MS, made it much easier for me. Her ability to continue to appreciate life and live it to the fullest, enabled me to accept the situation as well. We were still only both 34, and had a lot of living left to do. Plus, once I came out the other side of my own crisis, it was even clearer to me than it had ever been that I was with the only person I really had ever wanted to be with, MS or not.

One year after our disastrous D.C. vacation, we went to Puerto Rico. By then I'd finally made peace with our situation, and was able to fully enjoy our vacation.

One year after our disastrous D.C. vacation, we went to Puerto Rico. By then I’d finally made peace with our situation, and was able to fully enjoy our vacation.

So, what do all of the words I just typed really mean? Do I have the answer to overcoming the grief associated with a diagnosis of MS? Hell no…because I still struggle with it from time to time. I wouldn’t be human if I didn’t. By sharing my experience what I hope that I’ve been able to communicate is that people are often stronger than they know or even give themselves credit for. When faced with the idea that Ren had MS, we both had to complete our journey to acceptance not only to become the people we are today, but also to continue living the life we always wanted to share together. It hasn’t always been a smooth ride for us, but for the most part we’re doing things the way we’d always hope to. Living life together, and enjoying the incredible relationship we’ve always shared. And probably with even more perspective than we would have had without the silent third partner of MS taking the ride with us.

These days, even with Ren's limitations, we are still able to have regular "date" nights that include fun activities like going to a retro arcade.

These days, even with Ren’s limitations, we are still able to have regular “date” nights that include fun activities like going to a retro arcade.

“Miracle Cure”

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Thirteen years doesn’t seem like such a long time, until I think about how much the world has changed in those thirteen short years. When I was diagnosed there were four (4!) Disease Modifying Therapies (DMTs) to treat MS, all requiring self-injection. These days, there is a (limited) variety of DMTs with various delivery methods including injection, infusion, and even pill form. That’s a heck of a lot of progress in what feels like a fairly short amount of time.  In reference to our world in general, the Internet was already a staple in the American way of life, but it has grown exponentially in that time. Social media really didn’t exist at all, except maybe My Space in its infancy. The way we gather information and the speed at which news is disseminated has made everyone an expert at everything at all times. 

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Everything I learned in those early days, I learned from sources such as doctor presentations and MS Society functions and literature, but I had very little interaction with other MS patients. There were a few websites with forums for patients to have discussions but they were not nearly as expansive or readily accessible like everything is today. True, it was a simpler time.  But in those simpler times, somehow it was easier to decipher truth and reality from kinda-true-but-perhaps-slanted information. 

In this age of instant gratification and “knowledge” at the tip of our fingertips whenever we want it, it’s harder to sift through everything, if for no other reason than the vast quantity of information out there. It can be completely overwhelming. Then on top of that, everyone and their grandmother will tell you about “my sister’s boyfriend’s mother’s co-worker had MS and now she’s cured because she….” (fill the end of this sentence with things like “she did this diet” or “she took this supplement”, and the list goes on and on). Although I appreciate that people think of me when they send me articles about anything MS-related, I always have to temper that hope and excitement with a dose of reality. If there was a cure for MS, then we’d all be cured already, right? I mean, just because you see it on the Internet, it doesn’t mean it’s true, as evidenced by just about everything posted by just about anybody on Facebook. Let’s face it: a meme is generally not a reliable source (school librarian lingo!). 

Recently there was a seemingly too-good-to-be-true article making the rounds that discussed a very high risk treatment for MS. Just like everyone else, I read it with excitement about what this procedure could mean for the future of life with MS. As a matter of habit, I always bring anything I read about new MS trials and treatments to my neurologist, and we have frank discussions about the possibilities and the repercussions. Invariably, these conversations usually take almost all of the air out of the balloon of enthusiasm I carry in with me. 

In many cases, these “trials” or “studies” (in quotes because often they are not using a double-blind, placebo-controlled format) turn out to be nothing more than by-products of less than reputable doctors seeking acknowledgement for how much “progress” the patients appear to have made. Being a responsible patient myself, I want to see both sides of the coin, even if the answer isn’t what I had anticipated. 

The results that have been circulating about the most recent “trial” appeared to be beyond amazing. Upon further investigation, I learned that many details had been left out of every mainstream article about it. It wasn’t until my neurologist gave me a copy of an article on the same trial, but from a biotech industry news staple, that I learned of information not included in the piece that was being spread across the Internet. Long story short: this massively risky procedure carries varied results at best, but it’s still a step in the right direction towards a cure for Multiple Sclerosis. 

I’m optimistic about the future of MS treatment, even if I am not able to benefit from a cure because of where I am in the course of my disease progression. I will definitely be able to benefit from increasing number of DMTs and the various delivery methods they offer. These DMTs are not cures, but are meant to slow the progression of MS. However, once you fail on a treatment, that’s one less option out there for you. I’m just glad that new treatments continue to be developed because if I can just stay where I am right now, I can’t really complain. At least not too loudly. 

Heat Intolerance

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This week, I have been thinking a lot about the summer months. For many people, it’s their favorite time of the year. It invokes thoughts of pool parties and barbecues, and late nights under the stars, roasting marshmallows by the fire pit. In my mind I also associate summer with trips down the shore, flip flops, pedicured toes, and slushy drinks. Some of my best childhood memories revolve around summer activities, and unfortunately that’s where they remain because MS has changed everything for me.  

This was taken on a trip to Puerto Rico. I had icepacks in my bag and they came everywhere with me.

This was taken on a trip to Puerto Rico. I had icepacks in my bag and they came everywhere with me.

I didn’t even realize that I suffered from heat intolerance at first, and I hadn’t seen much literature about it back then. I was diagnosed with MS in June of 2003, and then just 3 months later, when I was setting up my classroom in a very hot and humid school building in which the hallways and the classrooms were not air conditioned, I had my first experience with heat intolerance. As I was busily moving books from room to room and cleaning up in preparation for my new “litter” of kids, I began having visual disturbances. At first it didn’t seem like anything serious, but because I kept working, my core temperature kept rising. I was seeing weird bursts of darkness, followed by distorted images and I also lost the ability to see the borders around anything at all. I was scared shitless and I didn’t know what to do. 

This is definitely a happy place for me, but i can sit in the shade, float in the pool, or go inside to the AC...there's a reason she's my best friend.

This is definitely a happy place for me, but i can sit in the shade, float in the pool, or go inside to the AC…there’s a reason she’s my best friend.

I don’t remember how I drove myself home that day, but I do remember that once I got home, I called a disability attorney… because I thought my teaching days were over. I started to read about heat sensitivity and heat intolerance in MS patients, and the effect that heat can have on us. In actuality, a large percentage of us have “broken thermostats”, and can suffer in extreme heat, extreme cold, or even both. After talking to the disability attorney and collecting literature from various sources about this symptom of MS, as well as a letter from my neurologist, I decided that the only way I could continue working would be to ask for a “reasonable accommodation” (ADA lingo) for air conditioning units in my classroom. When I met with my principal at the time to discuss my request, I was informed that people who had made similar requests had been told to seek employment elsewhere. I left her office holding back tears until I made it back to my classroom, locked the door, and melted in a puddle of tears in the corner of the room not visible from the door. In the end, a new principal came the next year and honored my request. 

I even love the beach off season, like that time I spent my birthday (in April) taking pictures with a dear friend.

I even love the beach off season, like that time I spent my birthday (in April) taking pictures with a dear friend.

The thing about this particular symptom of MS is that it isn’t limited to the summertime. One time, I had to be picked up early from school in December, because we had a particularly warm and humid day. I also have to be very aware of my body when I exercise, because I am always walking a very fine line between working hard and over-working. It’s a balancing act that’s not an easy one… but then again balance, generally speaking, is not something that comes easily to many MS patients, including this one. 

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While I love the feeling of first walking into a nice, cool house in the sweltering summertime here in NJ, I also (used to) love spending time outdoors. I like sunbathing and being tan. I like swimming. I like the beach and the boardwalk. Most of these things are not in the realm of possibility for me now, although I do spend time alternating between shade sitting and pool sitting! But still I miss those long, hot summer days. Nowadays, we seldom get to experience the beautiful spring climate, and it seems like we go straight from winter to summer. Our AC goes on in May and doesn’t go off until October. I definitely get cabin fever by the end of the summer and I start yearning for fresh air that doesn’t rob me of my ability to see. 

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So my point? I am lucky that I have always been able to recognize when I am starting to overheat (knocking on wood). Because of that, I carry “snap and break” ice packs wherever I go, regardless of the season. This week, one of our fellow warriors was not prepared. When our body temperature rises, all symptoms are magnified, speech can get slurred, and cognition can be affected. Before she realized how overheated she had become, she did not have the strength or function to seek shade or shelter. By the time anyone found her, she was sunburned and her temperature had risen to 108. She was placed on life support, but sadly, this young woman with a four year old daughter, did not survive. This is not something to be taken lightly, and the lesson applies to everyone (MS or not): listen to your bodies. You know what your “normal” feels like, and you need to pay attention to what’s not. 

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I couldn’t even begin to count how many teachers in my building commented to me, “It must be nice to have air conditioning in your classroom.” I always responded that I’d gladly trade my AC units for a healthy immune system. In most cases, these co-workers were simply naive, or not thinking about what they were saying. I must admit, though, that it always left me feeling annoyed, angry, upset, and even jealous. I never wanted to be seen as getting special treatment, it was merely an accommodation that allowed me to continue to do my job to the very best of my ability…or maybe even at all. 

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Heat intolerance goes well beyond disliking the heat or being uncomfortable in it. It’s a serious condition that can make all of our symptoms flare. If you are heat intolerant, please be prepared, and educate those around you so that they can help you if need be. No one wants to see another warrior succumb so tragically and unnecessarily. Even though I have been aware of my heat intolerance for many years now, I still never realized how serious it could be. Now I’ll never forget. 

RIP, Sarah.

Diagnosiversary Redux

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In preparation for my blog this week, I decided to read what I had written about my diagnosiversary last year, because I just can’t let June 2 slip by without acknowledging it. I read through the entry, and I realized that on this, the 13th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year on the topic. The feelings I experienced on that day, and during the weeks and months that followed, are still as raw and as powerful as they were 13 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I wrote last year on year 12. Nothing has changed about that day, except year 13 has brought more challenges, but also many more rewards. 

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June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life. 

Every year on June 2, I am brought back to that day, now twelve years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me. 

So we got in the car, not talking to each other at all. On the way to the neurologist appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?

We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk.  I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room. 

The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if  I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate. 

We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours.  We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted or expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.

Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but 12 years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up. 

On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.  

For 12 years I have acknowledged the importance of my diagnosiversary, and this year is no different.  I’m still grateful for the many gifts I’ve been given, and even though my journey has not always been an easy one, I know that every bump in the road makes me a stronger, better version of myself. I don’t celebrate the anniversary that falls on this day. I celebrate all the things that I have managed to accomplish, all the things I can do, and all the things I am, MS and all.