This week we have a special treat in that Bru and I are teaming up to bring you this entry that we have written together. Bruce wrote his portion in its entirety, and then as I read what he had written, I added my comments where I felt I needed to add my perspective. Let me warn you that as much as I am a glass half full girl, he views that same glass as practically empty and inevitably we will die of thirst.

Three years ago, Ren and I had the opportunity to work on some videos for the website www.rethinkmsrelapses.com. This project gave us the chance to share with others dealing with MS (the patients and care partners alike) how we handle things when Ren is going through a relapse. It’s not that we’re so much smarter or better equipped to speak on the topic than anyone else (although I’d like to think that we are!), but we just happened to be friends with the person that was spear-heading the project, and I guess we fooled him into thinking we were the right people for the task. {I must add in here that I came with a wealth of experience as a public/motivational and patient advocate speaker. It’s true that we are friends with the guy whose vision this project was, but we definitely earned it on our own merit.} In any case, as part of the lead-up to the production of the videos, we participated in a conference call in which we were asked a series of questions, as a means of judging whether or not we were the right couple for the job. It also allowed the producers of the videos to determine if we had any words of wisdom they could use as part of the scripts for each of the three videos they were set to film. As it turned out, we knocked the interview out of the park, and with the exception of the “legal guardrails” they had to make sure were prominent in the videos (damn lawyers), the bulk of the script came directly from what Ren and I discussed on that call. {Bru had heard me speak a million times, but this conference call was the first opportunity I had to hear him do his thing, and even I was impressed. He was a natural!}

Here we are in front of the green screen for our video project.

One particular quote that stood out to the producers came about when I was asked how we handle the times when Ren is relapsing differently from the times when she’s not. Without really thinking about it, I said: “When a relapse hits, you never think it’s going to end. And when it ends, you never think there’s going to be another one.” {He’s exactly right. We get lulled into a false sense of security at first, as symptoms present during a relapse and often disappear in remission, especially during the early stages of MS.}

OK, granted…it’s not something you’d find in the complete works of the great philosophers, but I do think it makes a pretty good point about how a disease like MS messes with your head. I can say unequivocally that one of the hardest times of my life was not the period right after Ren was diagnosed, but the time she suffered from her first relapse about 18 months after diagnosis. In the time between those two relapses (because ultimately, the symptoms that lead to Ren’s diagnosis were just part of a relapse because according to her MRIs, she had clearly been living with MS for years before her diagnosis), Ren had stabilized and her condition had even improved somewhat. So, in my mind I suppose that I convinced myself that the worst was over, and that it would be smooth sailing from there in out. After all, Ren had gotten stronger since diagnosis, and that couldn’t have happened if she was going to continue to get worse…right? Of course, that was just my naiveté showing, because as we’ve learned since then, MS does nothing but get worse. It may move slowly, or it may move quickly…and some relapses are worse than others, but no one ever really gets better when they have MS. It’s just a steady decline that’s unique to each individual themselves, and worsens with age. In other words, MS just plain sucks. {Bruce does have what I call a doomsday attitude about it all, but he claims to be a realist. I believe that early (and continuous) treatment can definitely help to slow the progression of this beast.  Because I am a true optimist, I believe that coupled with the proper exercise and healthy eating, I will be able to maintain my current status, which really could be way worse than it is.}

Then how does a couple actually deal with the ebb and flow of Relapsing-Remitting MS? Well, that’s an intensely personal experience that depends a lot on the relationship you have with each other, your family and friends, and your doctor. Thankfully, Ren’s MS has done nothing but strengthen our relationship, and has allowed us to fight her illness as a team. But not everyone is that lucky.  At the end of the day, I feel that you really just have to enjoy the “good times”(in quotes because one’s definition of the word “good” changes when dealing with a chronic illness) as much as you possibly can, while preparing yourself for the inevitable relapse…because it will happen. The times I’ve watched Ren struggle through her multiple relapses has been excruciating, and they DO feel like they’re never going to end. And while there is an incredible sense of relief when one ends, Ren is never quite the same after them. There’s always some level of function lost, because the damage done to the brain and/or central nervous system during a relapse is irreversible and permanent. You just hold your breath, and hope against hope that the “new normal” she’s left with is not all that different from what life was like before. {I can attest to how painful relapses are not just for the patient, but also for his/her care partner. I know that Bruce feels such a profound sense of helplessness (which I hate, but love him for caring so deeply), but unfortunately, once a relapse is addressed medically, either with high-dose IV steroids, or a similar medication specifically designed to reduce inflammation, no one can do anything. Adjusting to my new normals after each relapse is way easier when Bruce adjusts with me. Like he said, we fight together, as a team.}

MS is an unbelievably cruel disease, not just in how it takes away a person’s ability to lead a normal life, but in the head games it plays with those affected by it. It’s not something that anyone can prepare for, because by its very nature MS is an unpredictable disease. There is no “normal” course of progression of the illness, and no two MS patients have the same exact experience with the disease. It’s like a horrible game of chance, where you’re constantly waiting to lose everything you have. You just don’t know when it’s going to happen, but the longer you play the worse your odds. {It does, indeed, get in your head. In fact, in past blogs I have called it a total mind fuck (pardon the French) that affects everyone in my life, especially Bruce. I know our life may not be normal by other people’s standards, but we have never given a crap about that anyway. Our life is our normal, which suits me just fine.}

I don’t have any sage advice to drop on the readers of this blog as far as handling life with something as wicked as MS. All I can tell you is that you’ve got to enjoy the time you have, whether you’re a patient or a loved one, because at any moment the rules of the game can change. Love harder. Laugh harder. Smile harder. And live harder. If MS is good for anything, it can make you appreciate what it is you have at any given moment. It strengthened the bond that Ren and I already shared, and for that I’m grateful. So, MS really sucks, but I suppose things could be worse. {So the optimist is here to end this the right way. Yup, MS sucks. For sure. No one is going to argue that point. But so many people live an entire lifetime without learning about and really enjoying what’s important: loving, laughing, smiling, and living… Living a truly, authentically happy life in the here and now. We hadn’t anticipated a silent partner (MS) joining us on our journey, but I wouldn’t trade the lessons learned as a result for anything.}