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.
Yesterday was Mother’s Day. I’ve been asking myself what it was like being a mother before I had Multiple Sclerosis. I’ve been a mother for eighteen years and only the last four have been years with MS. I know one day I will have had more Mother’s Days with MS than without so why am I feeling like I need to remember now? Maybe it’s because my oldest is getting ready to go away to college in a few months? Maybe it’s because my youngest seems to be growing up even faster? Maybe it’s because as my children grow, I feel like they don’t need me as much? I obviously remember but I want more clarity. I think my wanting to remember it all so clearly is because I want to feel like I was present enough both physically and mentally in the years before MS to balance out the years after MS and whatever it holds for me in the future. Did I do enough? More than enough? How will my children remember me as their mother? The one thing I’ve always known for sure is that my life’s biggest success will be in motherhood. This is my truth and I cherish it.
I’m sure that most, if not all, mothers with MS have the same worry. How can I control this disease enough to not hurt my children? I know I can’t control their feelings of worry and uncertainty and I know that I can’t control my physical shortcomings. It was hard for me to allow myself to say no to friends and family but it was a whole different kind of hard saying it to my children. It’s always hardest just after Mother’s Day until the long summer finally surrenders to fall. I hate saying no to afternoon errands in the 90+ degree heat but I have to. Falling asleep out of nowhere and waking up after dinner is the most pathetic one. What kind of mother does that?! Oh yeah…..me. Will my children remember this most or the years of dinner always by 6:30 and taking friends with us to parks and museums? The MS years will always be the most recent so that gives them extra weight. I just hope that I did enough before MS to balance it out.
Even if you’ve already seen this many times it remains powerful. I love U2, this song and the message.
Beautiful Day – World MS Day Video U2 – YouTube.
There’s always something we want to do, have, change or be. It may be buying a new car, shedding unwanted pounds, writing a book or becoming a better version of yourself, whatever that might mean to you. I’ve never been a car person but I’ve wanted to lose weight, be a better wife, mother and friend and bringing myself to start this blog was a huge leap of faith for me! There are pressures that have been there for as long as I can remember that served as motivation for me. I want to look good in a bathing suit, I want my family to be nourished in every sense of the word, I want people to like me and want to be my friend and I want to put my thoughts into the universe in hopes that I might reach another soul who not only understands them but who can maybe even be changed by them. I’ve wanted all these things for a long time but now, while still wanting them the same and wanting the same outcomes, I’m motivated to accomplish all of them by something different-fear. I am scared that the day will come that I won’t be able to write, think clearly, cook, clean, do my daughter’s hair, watch lacrosse games, attend music performances, lift weights, run, walk, see. I am scared so I am now laying my foundation. I’m working out regularly, I’m almost always present at all the things my children do, I host parties for my children and their friends as well as mine and my husbands. I don’t want anyone to forget how I am now and how I have been present. I want my friends to still want to be my friend even if I’m not so much fun to hang around. I especially want my husband to feel like he’s had a good wife and my children to feel like they’ve had a good mother. If I push myself and stay committed to all the things I’m still able to do, I will have a better chance of these things. I also take the phrase “If you don’t use it, you’ll lose it.” to heart and task. I need to read, write and learn to exercise my brain just like I need to strengthen my body to give myself a better chance of beating the odds. I am too scared not to.