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.
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:
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.
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.
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.