I’ve thought a lot about change lately. Like they say it is the only constant. My life has been full to the brim of it as long as I can remember. So much so that I got to where I expected change, even looked forward to it like an old comfortable blanket. Although, I wasn’t always that way I just adapted to the ride. I was married young by today’s standards at 18 years old but was more than ready to settle down to a warm home with a picket fence with children and a smattering of dogs and cats. I yearned for stability because it felt safe and reassuring. However, it didn’t put demands on me to take risks or to explore who I really was underneath the persona of the perfect wife, mom, daughter etc. Then little changes began to happen like the first daughter and the second and the third. Then a tsunami of a change occurred in the form of a divorce.
This change brought me to my knees and forced me to reach way down into a place of strength and courage I did not know I possessed. But I found out I did possess this power and it was my first inkling of who I was and what I might be capable of. Change became a normal part of my life after that. Struggling, surviving, always looking for the light at the end of the tunnel taking every opportunity offered to create what I lost. We travelled like gypsies over more than a dozen states looking for stability but change was always right behind us as I was trying to run from my heart pain.
Then in Florida I got sick, really sick and almost died. The illness left me with many disabilities. My youngest daughter was diagnosed with Hodgkin’s during the time I was in a coma. We all made it through, lucky to be alive, trying to adjust to the biggest life change yet. There were five of us now with the addition of a beautiful son six years ago and I was in charge of their lives regardless of my new disabilities. By now I was a fighter and a survivor so I was determined to fulfill whatever mission God saved me for.
After a year learning to walk and drive again and my daughter was back home and in remission, the kids and I moved to the Midwest to be near my family. There I found what I was saved for when I took a job as a disability advocate for a civil rights organization. This was a perfect platform in which I could redirect my anger and survival skills to assist people with disabilities to thrive and become independent in a society bound and determined to warehouse them. These were my people and I instantly knew I had a responsibility to play it forward.
I just retired after 26 years and if that sounds like I finally found what I lost so long ago with the divorce you would be wrong. During those years the changes kept coming with challenges, deaths of loved ones, raising teenagers, moving residences constantly to adjust to new developments good and bad. I know now that what I forever tried to replace wasn’t mine anyway but rather a springboard for me to jump from in order to explore and use the essence of who I really am in this life.
I am now embarking on a new adventure with the same mission of reaching out to humanity only on my terms. It is a partnership with others who are just as dedicated to change society’s perception of people with disabilities as I am. Change has become my friend and although I can finally relax with the children grown and a successful career put to rest I welcome change when it comes for the opportunity it is to grow spiritually and intellectually. Managing it becomes an expanding drill but the way we embrace, oh yes, the way we embrace it, defines our future and ourselves.
Christmas oh how I love thee. The sounds of beautiful music that flows like a river through my excited soul and fills my senses with smells of evergreen, fireplaces burning oak and cinnamon wafting from the kitchen. So many Christmases have I experienced through my long journey. Some I was poor, some rich, some in stressful times, some in celebrating times. But, Christmas is above all that. It is a concept and although personal it is also universal in its message. All the things it is, the gifts, the family joining, the food, the decorations remind me what that message is. It lifts me and makes me a better person because everything connected with it serves to make me remember the child within and the child who changed the world.
Yes, it’s marketing and yes for that reason it’s promoted early but you don’t have to buy gifts early or buy gifts at all. I like to wait until December but as a single mom there were years I so appreciated those early layaway options in early November. Not everyone can save early or have credit cards available. My little family sang Christmas songs earlier than anyone we knew and the gift discussions and anticipation was magical compared to the rest of the year of focusing on survival. They knew this holiday was a celebration of the birth of a savior and his message was to honor and love one another, to count your blessings and live with joy. He did not intend for us to just speak it but to do it. Gifts, even tiny ones, tells that person “you are loved, you are valued”.
Sometimes the only gift you have is a comforting hug and that could be the best gift of all. So I say to all the complainers out there that believe it’s too commercial that really, it’s all in the focus of what you want from it. And the answer to that lies within you.
Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful. ~Norman Vincent Peale
I read somewhere that only 4% of new cars sold in the U.S. have manual transmissions. There were a lot more in the 60’s when I was a teenager learning to drive. We had an almost new Pontiac sedan with automatic transmission and power steering that was a breeze to drive but my parents insisted I learn to drive my Dad’s old paint truck first. It was a 62’ step side with a 3 speed shift on the column, no power steering and smelled like paint and turpentine. You had to keep yourself focused to keep the fumes from making you daydream about your boyfriend. But I would do anything to get my driver’s license and my life was a little askew of my girlfriends anyway like the fact they all had pretty designer dogs and we had a hunting dog that stunk.
So, every Saturday off we went to the desert. I had not graduated to a city parking lot yet. My older brother was usually my instructor which I resented because he was so picky. My verbal instructions each and every Saturday according to him was – stay mentally vigilant, do not take your foot off the clutch letting it fly up stalling the engine, do not try shifting without the clutch or break forgetting you have a clutch, do not look at the shifter instead of the road (many cactus lost their lives by my hit and run), do not mistake neutral for first gear and revving it until smoke comes out of the tail pipe and the biggest demerit of all was forgetting to take it out of gear when parked causing his cigarette to fly out the window when the truck violently jerks forward. yada yada yada
After the summer of mind numbing practice I learned to effortlessly release the clutch millimeter-by-millimeter in a smooth transition. I graduated to city parking lots and even parallel parking which is a whole different learning curve than automatic transmissions. Although I was ready to take my driver’s test in my mom’s sedan my brother convinced them that I really needed to learn the five speed stick on his disgusting dirty Scout 4 wheel drive. Just to be rounded he explained.
So off we went to the desert again but I already had the clutch down pat so just had to learn the 5 speed configuration without always looking at it. We started in the area I already cleaned out the cactus months ago so no more fatalities would occur. A few weekends and I was a pro. I finally got my license by driving the automatic, power steering, glide on a cloud, Pontiac family car but I was capable of driving just about anything now. I knew a lot more than my classmates who only drove automatics like do I use second or third getting for the exit ramp, is the grade steep enough to downshift, did I remember to put it in first gear before parking. You never stop assessing the situations. Automatic transmissions took whole steps out of the driving process. Driving while doing something else isn’t like letting go of your handlebars while riding a bike. It’s like operating a missile without paying attention to where it’s going. Texting and cell phone calls are just about impossible while driving a manual transmission.
I look back now and marvel at the devotion of time and patience my family had to teach me skills that lasted a life time. Bonding together came naturally as each one taught one in my family village.
The following essay was not written by me. it was written by my 16 year old granddaughter whose strength and depth of character is way beyond her years. It has an important message in it that inspires those who have had to deal with overwhelming trauma and survived. Hope you enjoy.
“Raven I regret to tell you this, but you have Leukemia” These words shattered my world and turned it upside down. All I remember is my mom jumping in front of the doctor looking me in the eyes and telling me “Raven Listen to me You can beat this all you have to do is keep a good attitude!” my doctor tried to interrupt her but she put her hand up and said firmly that she needed to talk to her daughter. He smiled and walk out. My mom then looked back at me and kept telling me that as long as I didn’t give up I would make it through. She said its 10% meds 90% attitude, and that sunk in because I still remember it like it was yesterday. And that’s how I found out I had Cancer
Next thing I know I’m getting sent down to Memphis, Tennessee to go to a special hospital for kids in my position. My position? All I know is that I had to pack up with a duffle bag of clothes leave the only place I’ve ever known and be shipped off without no more than 5 hours’ notice because the ambulance was already on its way. Why me? I know I’ve had bad luck but this is ridiculous. I look out the windows in the ambulance and I see oak trees and wheat fields that are just starting to wither away. Is that going to be me soon? Withering away as the months or weeks go by? I guess we’ll find out in about 4 hours huh?
39787 that’s my new name I guess. That’s what everyone calls me. “Is that 39787?” “Is 39787 hungry?” “39787 is not in her room. Where is she?” This… this 5 digit number is my new identity. In fact, I got so sick and tired of it that, I snuck out of my room just so I could get away from it all. But then everything erupted in chaos. All I was doing was sneaking down to the kitchen to read in peace and quiet. It was bad enough I had to drag around this pole of fluids that was about twice my size. But now i can’t even leave my room without getting lectured about fall risks and white blood cells. I was just trying to get out of this medically induced prison. You’d think they would have some consideration but I guess when you see it every day you get immune to it. I just hope it gets easier because I don’t know if I can do this for….HEY HOW LONG DO I HAVE TO DO THIS FOR?!?!?!?
“No! I will not stay here for 4 months I got plans!!! I got school!! I can’t just up and leave my friends! My FAMILY!! No I won’t do it!!!” They can’t expect me to do this. They can’t make me! Can they?? “We don’t have a choice sweetheart” mom said with sorrow in her eyes. It was then that I realized they were not only taking me from my life but taking her from hers as well.
Then… came the side effects. After getting a Rubber ball attached to my heart, came the meds and the consequences. That had to be the worst part. The Chemo they give you messes with your energy and cells, so to counteract them they gave me steroids.
Yes. I did say steroids. And those steroids came with a nasty price. A price I wasn’t aware I had to pay.
If you have never heard of avascular necrosis, you would not be the only one. Avascular Necrosis is a deterioration of the bones and/or Joints. If you catch it in time they can be saved. for example if you catch it at 30% then you can get a surgery where they place a metal rod in your bone/joint and crush it up to get blood flow through there. I have had this on my knees and ankles, even though they were at 90% my hips and shoulders were too far gone to save, so for those they had to replace them. God It makes me feel like I’m 80 with a hip and shoulder replacement.
Anyways now I have had 6 surgeries in/on my nose, port (rubber ball), shoulder, hip, knees, and ankles. That doesn’t even count the spinal taps. Which for those of you who don’t know are when they stick a needle in the base of your spine and take out fluids or put in chemo. And when it comes to spinal taps I’ve had over….100. But those don’t bother me except for the fact that when you get knocked out for a spinal tap you can’t eat for 7 hours before.
Now there are time that I look back and laugh, which I know does not seem right. And I’m sure you are asking yourself “how can you laugh at something like that?” and I have a way to show you. So I’m going to end this personal narrative on a positive note with a funny story.
I was about halfway through treatment when I had to do a spinal tap on a very busy day for the hospital. So just like any other hospital I had to wait in the waiting room. (Now let me remind you that it was about 2 o’clock in the afternoon and I had not eaten since midnight the night before so I was hungry) I got up to go ask the nurse how much longer we had to wait and she was eating a bag of spicy Cheetos and I wouldn’t have minded if she wasn’t so mean about it. “Excuse me miss?” she looked up with a glare in her eye and said “what?” I didn’t know what to think but I got a little irritated but not enough to say something so I just smiled and asked “would you happen to know how much longer till they can get me back in the operating room?” (now before I go any further it won’t make sense if I don’t tell you they had huge aquariums in the waiting room with little clown fish in them) so she said “ Do I look like I would know?!?” by this time I was ticked off so again I smiled and said “well you look like you would at least know where I can get some tartar sauce” she was confused and said in a tone I rather did not like “ why would you need tartar sauce? I know for a fact you aren’t allowed to eat” I couldn’t help myself I smiled evilly and said “cause I’m about to go eat Nemo. And if you’d rather I didn’t I suggest you Talk to the doctor and see how long till they can get me back!” She looked horrified to say the least. But hey it worked I got called back 2 mins later.
And that’s my story. I would to add that I am 4 months away from being done with chemotherapy. um let me think I believe I covered everything. Oh… If you have a question about any of this just feel free to ask me. I’d rather you know than guess. So I guess the moral of my story is you can find humor in almost anything if you look hard enough…
Hello? I think I’ve been disconnected!
What’s the future of landlines I wonder? I’m old enough to remember rotary dials in my elementary years and prided my ability to remember all my family and friends phone numbers. The sound of the ring was an annoying screech that you sprinted to answer because it automatically kicked off a fight or flight response in your body until you did. By the time it’s slow return on the rotary wheel for each and every number and finally connection you could make three cell phone calls and answer the door at the same time. But there was something comforting about holding that heavy handset spooned against your neck. Interruptions were taboo in polite society except for kids too young to ground them if they did. And of course the ability to slam the receiver down to show them you were fed up. That’s a whole piece of body language gone now. The red end button just doesn’t convey the same emotion.
There was no voice mail and no answering machines yet so if your sister was on the home phone with her boyfriend and you were languishing in the nurse’s office throwing up you just had to wait. That exasperating busy beep interrupted many opportunities to join friends going swimming or shopping too.
By the time I started high school the push button phones came out and in colors. You could also order one that actually fit on a wall with a 6’ cord. We bought one in Harvest Gold for the kitchen wall. My friends were pretty impressed. We had two phones now but you could only use one at a time. I was lucky because my Dad was a house painter who used the phone for business so we had a private line. Although my calls were timed by my parents at least I didn’t have to deal with the dreaded party line like my friends.
A few years later they came out with “princess” phones that I fell in love with and that my dad said he would never use if it was the last phone working in the house. One of the problems with it though was the handset was heavier than the base so it was always in danger of being drug off the nightstand. Regardless, it was high fashion and made you want to sit up straight and cross your legs to talk.
Landlines made you want to stay at home to wait for those important calls like boyfriends and the latest gossip. The only time I drifted from it was to join the people I was waiting to hear from or a close neighbor. I could hear our phone ring two houses away, jump an evergreen hedge, slide into the kitchen and answer it before the third ring. The phone was every bit as addictive as cell phones are today. We were just more confined so the general public did not see people walking around on phones like today.
It was only 15 years ago that I got my first cell phone and only 5 years ago my first “smart” phone. I love the freedom to be available anywhere I go and I hate the freedom of being available. At my age if I turn it off every kid I have would be hunting me down thinking the worse. But, since I can’t jump those hedges and do nothing near sliding into the kitchen anymore I’m happy it’s always in a room with me. I guess evidently even businesses will stop using landlines and trade off to better technology. Will all the telephone poles come down replaced with more cell phone towers?
I’m just pondering though if my great grandchildren will even know what that box with glass is that Superman changes his outfit in.
Single mothers are tough independent multi-task women. I know I was one. But these attributes are hard won and not something you’re just born with. They are earned by falling to your knees a hundred times in despair then pulling yourself back up again. There is nothing to prepare you for taking on the job of both parents. No training before or during this journey.
Although my kids were my joy and the very motivation to put one step in front of the other I would find myself yearning at times for a partner to share my life with. My four children and my job took up most of every day and night. That rare moment when at last I fell onto the couch before bed my heart would weep for stronger arms than mine to hug me.
Unbelievably in today’s modern world the barriers single moms face are almost as many as when I was raising my children over 20 years ago. Most employers do not consider or accommodate situations like sick children, snow days at school, school bus schedules or special events a parent is expected to attend. Then there is the teachers who don’t understand why your child’s 8 pages of nightly homework is not finished or why they are not finishing their lunch in the cafeteria. And there’s the school nurse who reported you for not signing the vaccination release even though your child never brought it home.
It’s like we still live in a1950 society of two parent families with little tract homes and wives stayed home and tended to the children. Everyone knows better but the rules and expectations have not changed. Single moms have not only replaced the other parent, they have replaced themselves. Daycare is not only hard to find but can cost as much as 25% of your salary for one child.
In spite of it all it’s much better for the children and yourself to live in a more peaceful home without constant relationship conflict. The kids raised by a single parent have a role model in a woman who is strong, exhibits self-worth and is pro-active in solving problems by planning ahead. They become independent adults from the early years of necessity when I ran late or had meetings. My kids learned to cook simple things and side dishes as early as 12 years old. I lived by “notes” left everywhere like take crock pot out of refrigerator and turn on at 11:00, stay in the house until I get home, change into play clothes etc. They didn’t think twice about taking care of each other and that bond remains strong to this day. I was lucky in that my kids were spread enough in age to have older ones watch out for younger ones.
Yes, it was a challenge, a big one, but every single little heart was worth it. When the empty nest finally came it was so lonely that I walked around in a fog for months until one day I found myself again, my 18 year old self before it all began. I drug her out from the back of my heart where I had placed her so long ago and began to reach for those dreams again before life happened. Only now I have these beautiful best friends to share it with, my children.
Social movements are the cornerstone of the American freedom of speech. Like tiny rebellions they are everywhere and the number and scope keeps growing and expanding. Social movements are a major vehicle for ordinary people’s participation in public politics. This political or cultural conflict is formed from a shared collective identity. Some of the more well-known movements are civil rights, feminist, disability, anti-war, Ku Klux Klan, Labor, environmental, Christian fundamentalist and a list of at least a hundred more most of us never heard of. Whether you agree with a movements agenda or not it is a groups right to protest and if successful, bring about social change.
I’ve belonged to a few briefly throughout my life but found myself less and less active because I eventually found myself in conflict with the movement’s conduct more often than with the barriers preventing social change. Social influence can be a powerful tool used to create conformity. It can be used constructively or destructively depending on the agenda of the dominate members. As humans we crave to belong, to be part of something and to fit in. How far we are willing to adjust in order to gain acceptance and avoid rejection depends on our level of self-confidence and strength of our self-identity. Conformity is the engine of “movements” like the Civil Rights Movement or the Disability Movement. By color or disability you are automatically accepted but may not necessarily agree with every concept or ideal that comes from the groupthink meetings forming them.
Groups base their success in the advocacy arena on projecting a united front. Although the discrimination barriers they are fighting to remove may never have happened to you there is a feeling of guilt if you don’t join and support the movement. The same person who belongs, however, usually acts, dresses and speaks differently at work or church or around gatherings that include non-disabled or Caucasian peers. It’s that compelling need to be accepted in our surroundings that pushes aside the true identity of most people. Although well intended most of these groups demand unquestioned allegiance and discourage individual thinking. Conformity in purpose, conformity in thinking, conformity in actions.
Even when given the opportunity to voice their opinion in a groupthink meeting most members would rather stay silent than be ridiculed by the dominate members. This lack of speaking up is brought on by a member or members so overbearing and intolerant of others opinion that intimidation rules the meeting. The consequence is that the group is weakened by members who do not have full buy-in of the purpose they are fighting for. These disenfranchised members speak differently when alone but are paralyzed by fear of rejection to speak up in the group.
This kind of intolerant atmosphere can easily be used destructively to incite members to action like hunger strikes, property damage or even riots. Those who are not comfortable with conflict get swept along regardless because of the need to impress the others. To them it’s not about the purpose as much as it’s about performing to the expectations of others. Some “movements” have made much needed social reform and have been very successful in building cohesiveness among their followers. However, I’m very careful when participating in any movement and observe if there are dominate leaders who do not encourage others ideas and questions. If I see it exists, I’m out of there.