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.