I don’t think my intended re-introduction to my blog was meant to be so angry. No, I can say for certain that it is not how I wanted to come back to writing again. The thing is – it had to be that way for me to get out of my own way to be ANGRY enough that I couldn’t silence my voice any longer.
I’m not an angry person, though. I’m a quiet person. I’m an observer. I find patterns, and then I dissect the elements of those patterns, especially watching human relationships. Wondering about each piece and each player, and more often than not berating myself for my failings in making the situation worse or the ways I could have done even better.
I actually don’t like having the impetus of anger be the thing that makes me roar. I’m a collaborator. I like deep discussions for mutual understanding. If you have a point of view that you’re so fiercely protective of, I am more interested in what brought you to hold that point of view so strongly. What in your experience made you believe that, and would you be willing to listen to how my experience has brought me to mine.
How about we talk about what’s very real in our lives and hearts right now? I’ll go first.
MS has brought me to the precipice of Secondary Progressive MS (SPMS). Officially I am transitioning from Relapsing Remitting MS (RRMS) to SPMS. I’ve known this in my own heart since 2015, but now it’s in my chart as assessed by my neurologist Dr. M . I haven’t been the easiest patient for her to care for because my distrust of doctors runs deep. This has meant that until this year the last Disease Modifying Drug (DMD) I took to try to prevent further Relapses was Gilenya. I was part of the study before it was approved, and the study unfortunately deepened my distrust of the medications that are in my mind barely effective (anything less that 50% effective – and I’m just not willing to risk my other organs.) If I want to still be eligible for anything that’s new, I have to hold on to this transitioning status as long as possible because the truth is once I’m in the Progressive category there’s not a whole lot available to treat, Which has meant I have agreed to take Mavenclad (cladribine) to try and hit pause and stop the steady slide down the disability scale (Or is it up? because the numbers on the scale ascend?) I find the Expanded Disability Status Scale skewed on the whole walking portion – because I am a part-time power-chair user and at an EDSS of 4 – if you asked e to walk 500 m without aid – it’s not happening without a significant chance that I will fall, or not make it because my legs have tightened up so much making walking excruciating – zombie shuffle?
Mavenclad is a “mild” dose of chemotherapy. I have finished the first year’s doses, and I’m now waiting for the blood tests to show my lymphocyte counts have started regenerating that blood test is at the end of September.
It wasn’t completely MS that forced me onto Long-term Disability, and it wasn’t the rigors of Mavenclad, it was my even bigger life long Shadow, Major Depressive Disorder with its side kick of Generalized Anxiety Disorder that made me realize something had to give because I couldn’t cope any longer, and I gave in to what my doctors had been after me for years to do – stop working. I want to believe that this isn’t permanent LTD. My “job” was never work in the sense of dreading the 9-5 day where I sold my time for a salary. I liked my work, I loved the people I work with, sure there were crappy things that sucked, but they never were bigger than the fun I had doing my job and when the job was up against impossible deadlines the people made the craziness worth it – every time. I went into IT, something I had a natural talent for, and it was fun. Having to walk away because my body had decided to go off the rails IS infuriating to me. But that’s just it. Until my last day mid-February I was living beyond my body’s coping capacity. It took 3 very serious conditions to get me to pay attention and realize I couldn’t keep it up any longer. I still hope to find a way back to my career. Mavenclad however is a two year + 1 year immune system recovery and after June and July’s treatment this year – there is no way I can do this treatment and work in a meaningful capacity.
I’m still railing against all of it. My fatigue levels are too high to do much of anything right now, and that is frustrating me. I struggle with figuring out how to contribute whatever it is I can contribute to something, but what? If I can’t get back to the career I love what do I have to contribute to? I didn’t realize the castle I was building was a sand castle, and that the tide was due to come in.
So now I have to build a new castle that includes and makes space and room for all of me – currently broken body and mind – to find a new way to learn to live within this body and with this brain that had it’s fair share of traumas – which I have never acknowledged or really integrated. I need to build a new home and a new life. I don’t even know where to start. This isn’t the first time I have had to start over, and it probably won’t be my last. This one is by far the toughest because this time I really have to face myself.