Didn’t know i was planting

Looking from where I am now to that date when I could wait no longer when I was finally knew that whatever this was had become larger than I could ever have imagined.My elders taught me alot. I think what I missed recognizing or fully processing was how life sneaks up on you.Or could it be time using its influence tricking its travelers into complacency until one day their eyes open? It truly does not seem possible that I have come to this point in my life. My youth in all its reckless abandon and vulnerability still breathe within me yet all is changed. I am changed. I could mourn the passing of hours of love and laughter, of curiosity, The   truth is what a harsh reality presents itself as old friends pass, and children grou up  along with their innocence they pass surge ahead into their adulthood. It is their steeds they now mount  and off they go on their own journeys with their own intellects, their own hopes and dreams, the own skills and abilities, their own passions. There is little to be done for them or about them They will walk their paths with the energy belonging only to the young. They will look at us and see old people, Some will watch in wonder of lives so ancient and all that these eyes and wrinkles so telling of that many footsteps. They will take up the errors of their parents and make the best of a broken world. They will hug on in the love of all about them. SO much will get put off into tomorrow into the embrace of “when we get time” until one day time arrives with no subtlty  at all. It blasts through doors , through crowded spaces and in solitude, and through dreams themselves One day they too will look out of a window and see their children no longer there. They will replay and rethink a million decisions made meant for the best of their young. When one will burst into the silence for their moment. They will tell their parents of something that was said or done and at your surprize there will be a confession it was learned at your knee wihtout you even have known such a thing occurred.  On God’s good graces this world turns with no help from us, not qany of us, not one generation. God’s good graces thankfully have ;asted a very long time and if prayers count for anything will continue long enough for man to replace his selfishness with wisdom… perhaps the wisdom learned from unknowing parents, aunts, uncles, and grandparents… the whole village.                                       ,                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     hundred of




Snow in the Valley

WHat is it about watching the snow as it lights upon the earth that transports us to its own place and time? Magically it seems to bring alive all it touches. Or is it that it blankets  the outside snuggling it into winter’s slumber? Looking out of the window, it’s like being within a snow globe. (Hey there’s a movie about that! a cute one- tad cheesy but cute!) The silence with which it nestles down in these still type of snowfalls is nearly deafening. ..For all the thoughts that have been trying to find their place in my brain, this is soothing. It used to be utter chaos when I felt functionally worse and when news was added to it this felt like the floor was dropping out from under me. This time there were moments of free fall. Only not so terrifying.

Sometimes just getting ‘news” unhinges us mentally and we jam up in trying to process it all. But in the end, the fact is that there may be labels for things that are already happening nut the rate of trying to absorb every detail of it all may be a mute undertaking. After all It’s already in progress. Already we’ve been dealing with it. We just didn’t know how else to handle it, to gauge what is happening. It gives yet another label so medications and treatments can be used to which  insurances may hopefully contribute  It gives a window to peak through as to what to expect as time wears on once you know that it’s progressive. {I suppose it yearns to keep the other progressive condition company. ha!)

I think back as to the confusion of why medications didn’t work as anticipated for the first condition and realize that having these two leaves what we see in a quandary of guesswork except for a certain few symptoms that are specific to one or the other condition. (Yes condition seems more friendly than disease, right?) It’s kind of like the snow blanketing the land below. You see the terrain but there are places covered over that render themselves much like those little dips in the shore’s floor as you walk towards the ocean. You know it’s there but not where exactly. With experience in it , this is  less of a surprise since you knew it was coming,just not when exactly.

SO in the end there’s a light blanket of snow greeting the morning now. There is a calmness in the settling in of “the news”. It is what it is. I will do what it takes to live, to fully live given the realm of pebbles underfoot and boulders and hills along the climb. It’s okay. WHile there are sights that will be out of reach in all likelihood, there have been all along since the first condition grabbed the reins. It and I fought over those reins until I realized the futility and frustration I was setting myself up for in demanding it release the reins. I know now that regardless of wishing it was not there, it is and will be. Now we scoot over for another- Well it has been there with us, we just now have a face to see it as. SO I learn to share the reins. There is no choice in it really. I will live my life- altered plans, altered methods of moving forward- but I will drive with my destiny. It is not a matter of winning or losing. It is a matter of what and how as to a plan for living. It’s an exercise in getting creative.  It can and will be done. There are reasons our lives are what they are in many ways. I will brush the snow aside and use the footing underneath for my journey forward.

It isn’t unusual to find it this cold this time of year- it’s late autumn in PA after all. It’s closing in on Thanksgiving for heaven sake. I get that there’s an arctic blast but we’ve had significant accumulations of snow at this time of year in the past. We can take the “It could be worse perspective.” But why compare? WHat is here is here for the duration , How we look at it determines whether this is a challenge, part of the path, or a tragic roadblock unable to be moved.

Lighten up. Life is short- incredibly short. We can’t sidetracked by it not being as we envisioned or as we planned. It’s part of the wonder and beauty of it, the twists and turns. The changes we experience are all part of the wonder of it all.


Treading as fast as I can


   One of the measures of how things are going is probably my contact with others, be it in writing, in person, or through face to face contact. Psychologists use that  when talking with someone about their depression. So I guess it is tied up with mood, coping, reaction. In the past I would withdraw and my self-talk was less than helpful. I learned early to become my worst critic. One would think it was tied up to wanting to reach some level of perfection. Mine was more that while I wanted to do what I was doing right, I also wanted to be able to not be drawn out in a negative way.

I don’t remember it being spoken, other than the occasional, “What are you moping around for? Well whatever it is , it won’t get any better that way.”  Yet there was basically an attitude or an understanding that if something was your problem, it didn’t mean it was something that needed to bring the whole family down. Looking at it now, I wonder if it came out of living with dad’s drinking and mom’s anxiety, yet their ever push to keep us on our feet and to still drink life’s honey. Oh believe me they had their problems. There was fighting. And in my adulthood (I don’t know how this escaped me earlier) I found out my brother, the oldest, really got set down in the middle way too many times. Add to that the conflict of a simple loving church upbringing that really was written in our hearts and basically we saw lived out in our parents and relatives. But from my perspective while there was turmoil, some years really harsh, we were expected to go about our lives as though this was irrelevant to our lives and not our business. Of course we all coped in different ways. My brother withdrew into the world of books and sciences, music. He briefly went into wrestling in high school. I don’t know the why behind that and I have no clue how he did- I remember going to a match but just remember glimpses of seeing the concentration in my brother’s eyes. My sister found release in looking through magazines and the pretty things around us all. She’s always been a gorgeous redhead with beautifully waves and texture. And I dove into sports, current events, being outspoken to my mom mostly (SOrry Mom. I am close to certain I am the one who used up your brain and left you with Parkinson’s.)I loved animals and drove mom and my sister crazy with bringing home strays or some of the salamanders indoors. I was pretty much a tomboy but in my teens reached the level of opposing factors in my personality. I wanted to excel in sports but saw the value in the rebellion  going on in the 60s, early 70s. This all played into how we escaped the pain of the conflicts between our parents. This was embraced by our parents. The last thing they wanted was to add our opinions. Although I think my mom would have my brother to understand her “side” or things. My brother had gone through SO much in his lifetime that I wonder to this day how he has come through as well as he has.

Anyway, in nursing school I may have hit the height of my angst. My father died when I was in seventh grade. My mother did a really great job raising us alone in a time when most women remarried (She was 48 years old.) While I wasn’t in trouble in terms of Hallmark channel move trouble. I was however a handful. I pushed the boundaries and I am sure while mom was feeling the empty nest, she also had to have times of relaxation at my not being right there. I would later find release from life’s stresses in writing, in music, in painting. Nothing I shared much with anyone because I didn’t want to embarrass myself. I was not the kind of person to hold onto the past too tightly- but clearly parts of it were tucked closely under the carpet.

Oddly enough there were a number of red flags waving throughout my life- even in my youth of the physical struggles ahead. But none were seen significantly and not in conjunction with one another. As far back as I can remember , I heard my mom telling me that I was throwing out my right foot when I walked and that my toes tended to toe in. The intensity of this varied. Back then most of anything unusual  with gait was treated with Ortho shoes- heavy clunky unsightly shoes. But mine were suede and while hot and unpopular, they felt soft and I liked that. At around 7 yrs old I struggled with anorexia and had a terrible “nervous stomach”.  Then a bit further down the road, there were a couple of incidences when I was swimming that suddenly I became exhausted and had to be rescued. These weren’t things I wanted much to be made of because it was important to me to be seen as physically strong and good at athletics. Once revealed though not much was made of it. I got scolded for going beyond my limits- for overdoing and not giving myself a rest in between play. I don’t recall the age I was. I think I may have been in jr high or in high school when I had sprained my ankle. It wasn’t getting better and became more painful than a sprained ankle should have been. Spent a long time using a cane- months. Had steroid injections in the joint- quite painful in and of themselves. In high school had times it was very difficult to see clearly when overheated. Later would have times when it was difficult to read with out magnifiers with my glasses and often at those times was wavy mosaic type vision and just not clear- which later I understood as doubling. I always thought doubling would be 2 completely separate sights of equal intensity. I would have episodes of exhaustion out of the blue- not fatigue but the exhaustion that my body was gonna lie down wherever I was. There were times (lengths of times – months) when I would be particularly clumsy. I would trip over my own feet. I would drop things a lot. And a symptom I had hidden from all- the ladies in the school office were the only ones who had a glimpse. In high school there were times I just would completely forget what my schedule was, where I was to be on that day. I would have to go to the office to find out my schedule. They would look it up for me- giving me the raised eyebrow when I returned again and again. Eventually they would print out my schedule for me- but I would lose track of those too. School came easy enough, if I paid some attention and did my homework- until trigonometry. That was where I dug in my feet. My teacher was a doctorate in mathematics who had taught my brother. My brother was a genius. There was no way I was going to understand a thing he said and the comparison to his work would crush me- so I just let it go and rarely tried at all. This “rebellion” hurt only me. Oddly was given another teacher the next year and with just a little effort of paying attention and doing my homework, aced the course. There were times I would “brain jam” as to where the room I was trying to go to was. A couple of times while driving the car, when meaning to brake at a stop sign I would think put your foot on the brake and would thud my foot down but miss the brake. This was terrifying and felt certain I would not be able to drive- so I shared this with no one. All little things on their own as I saw it. No one ever heard them all and now I wonder if they weren’t signs of what was happening physically in my brain. Now that I think of it, I doubt I ever shared this with any of my doctors in completeness- or even partially.

SO is it that my energy drops that low that when I “crash” I go into a type of cocoon and shut down as far as communication or conversation? Or is it just my way of coping with the overwhelmed feelings at that time? Is it that I hate for these changes I experience to be noticed by those who know me? My speech and coordination go away in the manner I know them during such times. I slur and stammer and experience word find problems during such times which occur at random and definitely when I am stressed, nervous, and often on the phone. I am not certain what exactly leads me to react this way and suspect it may be a combination of things. I imagine that a lifetime of trying to appear as nothing is wrong plays into it. Perhaps the downward spiral, is not how I want to be remembered.  There are times as I look back when I would insist that I was not told something or did not say something because it was wiped from my memory until out of the blue, months or years later it would flash in front of me. This is a hateful experience both embarrassing and often with a profound shame that I experience when I think of how I am perceived by the people involved. It has been important to me to live a life of integrity. I have fallen short in my own choices. That is not something I am proud of but do accept the responsibility. But when it is that my brain has done this without my choosing, it is embarrassing, provoking both shame and anger. Not a day goes by that I don’t pray for forgiveness for the choices I have made that hurt someone and for those things I have said or done that came from the illness and how it has affected me.

Ha! This has been like one of those meetings, “hi…my name is Bette Mae…and I have MS… It’s been minutes since my last symptom. The way this has affected my life are so numerous, it may be easier and quicker to name the ways it hasn’t…I’ll have to return to that when I come up with one…”

SO for those who feel shunned away it is not you, not anything you say or do. It is me. I beg your forgiveness for how this has hurt or angered or troubled you. Going forward I can say I will try to do better, but I am not certain how well I will keep that promise. I can make that promise consciously and can keep improving consciously but where this disease takes over, I cannot make that promise…as I am unaware of it happening at the time it is. I try to improve my awareness, my cognitive functioning. This disease however has as its focus to take my control over it all from me. I will not give up. I haven’t given up when these things happen. It may be a conflict that will leave me in the dust- but I will not go quietly. I will paddle as fast as I can.