I’ve been gone from here. I tried to come back once, at the beginning, but I quickly felt frivolous and even guilty because there wasn’t time for this and there never seems to be enough time. The last four months have been blurry, only because they have been so sharp. It seemed that the fracturing shift in the ground where I stood only felt steady as a bigger shift pushed it aside, for a moment. The things that have happened and the way they happened seemed to take all of me, so much so that I have had to remind myself that I have MS. Not that my body isn’t tired and doesn’t hurt because it has and does. It’s just that all of this “shifting” has had it’s own exhaustion and pain that left me unable to think of much anything else. If it weren’t for the daily alarms buzzing from my phone, the jolts from the needle piercing my skin and the tender lumps that join the others, I wouldn’t have thought about MS enough to even follow through with my treatment.
People often say that everything happens for a reason. We can break things down into their smallest parts and find cause and effect scientifically but, when we hear this, we are dealing with the bigger, simpler picture- ourselves. Have we always done something to deserve what happens or is someone else to blame? Is there a reward or a punishment to be found that is meant to teach us something? I don’t think so. I think we choose to find meaning because, even if we feel we’re being punished, we long to understand and feel like we have even the smallest amount of control. While I have been fruitlessly trying to find meaning in the things that have kept me away, my grief, worry and anger had pushed my MS away from my intellectual and emotional self. So, while I don’t have reason or meaning to why things have happened the way they have, I have learned something. MS can be forgotten, even if it’s only for a few minutes or a few months. Before the recent events and changes in my life, I didn’t think it was possible and have felt suffocated by it for years. For me, this is good to know, even if it’s only true until It is what shifts my life and makes me forget some other part of me. This is the unreason I am choosing to take from the events of the summer because things happen and, if they don’t kill us, life continues on. For a few months, my MS was just about forgotten and, now that I know it is possible, maybe next time it will be a season of joy, opportunity or even just feeling really great that leads me to forget.
Truth is always good but how long and what it takes to get there….not always. I knew almost sixteen years before my diagnosis that something was wrong with me and that it was probably MS. One side of my body was numb from just above my belly button down through my toes. Terrified, I went to the emergency room and left with nothing after an MRI of my brain. When the numbness remained constant for another five days, I was sent to a cardiologist to test my heart and still nothing. After a week or so, the numbness went away leaving fatigue as a reminder that something wasn’t right. Still, for about nine years I accepted the fatigue and decided that I didn’t want to know. I also convinced myself that enough had been done and pushing further for answers would make me look crazy. This worked pretty well until I had vertigo for days that had me unable to drive, stand for long, and vomiting around the clock. I called my doctor and, as soon as I could leave my house, I went to see an audiologist to run tests on my ears. Again, nothing was found but he gave me enough information about ear and balance issues to make me feel that seeing him was the right decision. I took that teeny bit of “this still could be a random ear episode” validation and ran with it. I had messed up ears… even though I knew I didn’t. Almost four and a half years ago, I woke up the day after Thanksgiving and my toes on both feet were numb. When I went to bed that night it was both my feet. Numbness continued moving up both sides of my body for days until it had reached my chest and I had to admit to myself that it wasn’t a pinched nerve or two… or twelve. I was going to know and would be introduced to the scars in my brain and in my spinal cord that mark all those years of not knowing. I had the truth and it broke my heart.
Not having the truth and not knowing have a way of being comfortably harmful both physically and emotionally but we still do it because it’s often easier and we all want things to be different from what they really are at times. I have recently done this with people, which I think is the most common way we all avoid knowing and the truth. We want things to be a certain way or we convince ourselves that we are just being positive, which is mostly a good way to be. Unfortunately, like my MS, knowing the truth about someone who is far from who you’ve known them to be leaves its own kind of scars. Again, I have the truth and my heart is broken.
I’ve decided that this spring I am going to work on letting go. I’m going to let go of the responsibility I’ve carried for the way I feel physically because I didn’t face my MS much sooner. I’ve been angry with myself and that is only making me feel worse. Even harder, I am going to let go of hurtful people who I now know are not who I thought they were or who I tried to make them out to be. Letting go will help me focus on fighting any harm coming into my life, whether it be a determined, misguided, damaging immune system, self-imposed guilt, or a manipulating, self-serving person misrepresenting themselves in my life. Spring is a time for new growth and beginnings and I am ready!
I have been thinking a lot about all that I’ve left behind. Time has nudged, well actually forced me through my life much too quickly, so I get lost in my memories and find myself saying goodbye to yesterdays all over again. Like everyone else, I have so many memories all of different caliber so my reminiscing brings smiles and laughter as well as frustration and tears. Some are sweet memories like snuggles with my babies in the middle of the night and the ceramic “Blondie” pin a boy gave me at the beginning of the school year that I wore pretty much everyday for the rest of 5th grade, while others are somber and weighted. I also look back and remember yesterdays that feel so unique to me with their abandonment because they are not part of life’s natural progression yet I know I am not unique and that many have had to leave the same things behind. Knowing this doesn’t bring me comfort and it often makes me angry because these memories shouldn’t be memories and they shouldn’t have had to be left behind for at least another forty years from now.
MS forces us to leave things behind, most of which are things no one really thinks about losing because they are basic mechanics of living. Sometimes, it is quick and sudden while other times it is very slow, fluctuating and tricky. Both can be easier than the other as well as equally cruel. We deal with loss of function that may or may not return and most likely never returns to where it was. While the things I have had to leave behind are the smaller things that MS takes, the fact that an internal rebellion inside me is to blame make each goodbye very cruel. My misguided immune system attacks my central nervous system leaving scar tissue that can’t be touched because of where it is (trust me, I asked!) and so the damage is permanent. The location and size of a lesion determine where and how much we lose. There can be loss of function anywhere in our body as well as pain, numbness, weakness, itching, burning, tingling and muscle spasticity. Our bodies also become controlled in new and sometimes scary ways by outside influences, illness, stress and lack of sleep. When I think about the consequential loss that inevitably comes it makes it all so much bigger. The meanest lesion I have is in my neck at C3 which gives it an unwelcome presence in just about all of my body and makes it the one I blame for most of what I have lost. So, in the midst of recalling what use to be, I am holding on to one thing I don’t have to leave behind, until my body decides otherwise, which is to remember all the good. Losing the happy memories of what once was is something I hope to never leave behind and while I can, I will give them enough room to quiet the sadness. While waiting for cure, my hope for everyone with any damage to their CNS is that we will one day have the ability to repair the damage and take back the things we have lost.
There’s a show on TV called Hoarders and it’s about just that, people who keep so much crap in their house that they literally can’t get into rooms and sometimes even find dead animals buried beneath the plethora of….everything! I’ve been thinking a lot lately about hoarding. What do people keep and refuse to give up and why? While I am not a hoarder of things, I’ve recently realized that I am a hoarder of unnecessary emotions. There are too many things I care about that I really shouldn’t. I know that stress isn’t good for anyone and with MS you physically feel stress and that can actually be quite scary at times. I know this intellectually but the hoarder in me can’t help itself. I carry so many feelings of worry, doubt and frustration that’s doing nothing but making my face numb, my toes burn, my mouth forget how to say words and my legs wobble- equally embarrassing at times as frightening. Some of the emotions I’m hoarding have to do with my MS but most of them have to do with really ridiculous things and people. I really frustrate myself sometimes! So, I need to clean house so to speak and give myself room to feel better, sleep better and smile better. There are things worthy of keeping, some forever and others for only a period of time. There are also things that should never be allowed in your head and heart and some that only need to be there for a while. The first step is always recognizing the problem which I have. Now, I need to devise a plan to throw away a bunch of crap….for good.