Forgetting MS

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.

Finding The Good Part

My son left for college this morning and through the constant ache in my heart I’m finding the good part to help me through this very long, slow-moving day. My mind has been reliving the moments that are a part of me forever. I can smell his sweet baby scent from the back of his neck that I inhaled daily from rocking him even when the books said I should be putting him down. I still feel the pit in my stomach watching him learn how to crash onto the front lawn riding his BigWheel. I can hear his raspy little voice telling me that I was a princess as he watched me put on my makeup and jewelry. I could fill pages with moments like these. I could also fill pages telling how life plays a cruel trick letting our children jump from one milestone to the next in the blink of an eye. Instead, I am going to tell you the good part. My son and I are very close and have a wonderful relationship. He’s also going to college! Thinking about him going to college and what he has chosen to study brings me to the good part of having MS. My son wrote a paper in high school about seeing me in the hospital and watching me recover from relapse and flares. He wrote that seeing these things helped him to know what he wants to do with his life. He changed focus in school and started classes in health science and became very active in HOSA, a club that prepares students for careers in the healthcare industry. My son is now a BioChemistry major and is planning on continuing on to med school to become a doctor. While my MS took so much away from me, it gave my son invaluable direction. This is the good part of MS for me. What are the good parts of your trials and are you willing to see them? I will painfully miss my son and MS will take pieces of me that will hurt emotionally as well as physically but finding the good parts and holding on to them have and will continue to make it all easier.

Emotional Hoarding

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.

Channeling Gilda

I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity. – Gilda Radner

Again, my life has decided to accelerate way too fast around a sharp turn and I’m suspended in that turn feeling dizzy from its brutal form. I thought things were going to go differently and that I could finally exhale slowly and effortlessly in this part of my life. I thought this was a part that I could control, even if only part of it. I was wrong and have been utterly surprised by life. I guess, to be fair, it is people or I should say persons that have me shocked and shaking my head. There are people out there who, driven by their want for success and financial aspirations, will lie, cheat and steal to get what they want. I’m bouncing between disbelief and anger and these emotions have me spinning, suspended in a place I don’t like. I know I will land safely and, although I may want to throw up for a while, I will be okay….well at least I better be. I’ve chosen to take what I see as control and try to join a clinical trial. This turn I speak of includes a definite insurance hurdle that I’ve had to jump too many times already and is the most stressful part of my situation. I don’t have the energy to go through it again! If I can get into a trial, I will have my medication and medical care with my neurologist. I am tired of someone behind a desk controlling a big part of my fate with MS. I want to feel like I have some control in this ride and right now I don’t and I’m spinning. I don’t know if this will happen because there is criteria that may exclude me. I also know that my MS can change at any time. Today, I can walk unassisted and see clearly. Tomorrow, both can be gone. So today, at this moment, I am feeling in control and it is liberating. I will hold on to this feeling until it is ripped from my grip. Here’s to today and to now! Oh, and karma…..please let there be karma!