Last trip to Memphis for my granddaughter’s treatment for leukemia at St. Jude’s Children’s Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the familiar ones still fighting and hoping for a cure.
The next morning we arrive for the first of three MRI’s and labs, CAT scans and psychological testing that takes up the entire day. Tomorrow is full of appointments also. Humidity is heavy and it bears down on already stressed out emotions. Parents walk around downtrodden. Eyes vacant, trying to follow directions like good little boys and girls in hopes that a reward of a miracle of life will happen for their child. Robotic migrations from clinic to clinic carrying the all-important daily schedule that can change at any moment and invariably does. Waiting rooms are around every corner because that’s what you mainly do. They are filled with distractions for the child waiting for what they know will be the next painful procedure. Parents hate it too but there’s nothing left now except faith and hope and perseverance. It is an atmosphere of controlled chaos and a test of human endurance as to how many emotions you can shove down internally and keep from your frightened child moment by moment. Your own silent scream must remain that way until the end whatever that brings.
The lodgings are more than adequate. Living rooms, play and game rooms are adorned with beautiful furnishings, toys and up to date technology. Every wall has painted murals of landscape and animals that most of the children will not get to see, for real, for a long time. Some huge temporary houses like McDonald’s House have several big kitchens so you can make your own meals during the long term stays. The compound is gated and ran like a 4 star resort only what you are going to experience has nothing to do with pleasure and relaxation.
Staff does not build false hope even though it’s the only thread left in the fabric of your life to hold on too. You learn to build your own. This is a sub culture of desperation where everyone here belongs. The journey is like a train speeding toward a destination where every rider hopes they can eventually get off and get on with their lives. Some do but some are derailed along the way and never reach that station. This fact lives daily like a virus in each parent’s heart. None of this is St.Judes fault. They try very hard to accommodate but the situation is devastating and personal. It takes a very strong parent to endure and balance the medical control with their knowledge of what’s best for their individual child. Often you find yourself swinging from despair to anger.
We are grateful, relieved and blessed because we reached our train station as all the tests were negative and my granddaughter is cancer free. But, the fight continues there for so many. It is a journey that changes your Soul and lives within you forever. We believe in playing forward every life experience we learn from. My daughter met a grandmother this morning who has just arrived with her granddaughter and daughter. She is lost and she is desperate. My daughter gives her insights, navigation tools and when to take some advice with a grain of salt and which to pay attention too. She tells her the most important tool is research of everything, the drugs, procedures and advice. She has helped so many parents over these years cope during the worst journey of their lives.
My granddaughter started a website called “Freaking Out On Cancer” the first year of treatment. It is a place kids can talk about pain, victories, despair and joy. She intends to continue this website throughout her life. This journey into the valley of death was traumatic for our whole family but we made it through. Playing this experience forward is a way we can repay our incredible miracle. Each one teach one is the golden key of humanity.
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
Learning to Shift
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.
Bye Bye Landlines
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.
Some of you won’t even remember pantyhose and it’s just as well. For some reason society back then felt it was an absolute necessity for nice girls to wear under their dresses and skirts along with a tourniquet called a girdle. The natural look was definitely not in. Just about everything you put together for a night of dancing, partying or visiting friends was fake. Wigs and hair extensions were in, false eyelashes, the girdle, perfume, plastic jewelry, make-up including fake blush and the dreaded pantyhose. It was all about others pleasure looking at you not your comfort.
You didn’t dare go to church, where ladies did not were slacks, or to a wedding or any event where you had to dress up or even your workplace with bare legs. Pantyhose was expensive so the average woman only had about three pairs. They would get runs easily, really easily. They came in different skin shades and some of the more expensive ones had what they called “control top” that was to hold your stomach in. These were made of nylon that stretched so unless your stomach was already flat it was wasted money. Then there were the “nude toe” so you could were them with sandals. Nothing like putting the fragile nylon right out there in front so they could snag everything they touched. They were HOT. I grew up in Phoenix and wearing pantyhose in 120 degrees should qualify as an Iron Woman marathon event.
So, I pondered why they were invented, what was the purpose? After digging in the history I found the answer appalling. The main function was to hide any scars or veins and make us more desirable to men. It’s just another example of societies expectations of women’s perfection. Pantyhose really exploded on the market in the late 50’s to early 60’s with the mini-skirt faze. But this generation would also bring it to a close with the feminist movement and the hippie natural look and the acceptance of women wearing trousers and jeans. Just shows you how much power women really have if they unite their purchasing power.
L’eggs, one of the largest manufactures of pantyhose, is trying a comeback but this throwback scheme is trying to influence young women who are smarter, more empowered and self-assured who are not interested in a product their grandmothers used. Tanning beds and ultra-rich lotions is all that’s needed now for a much more active and comfortable lifestyle. Plus the nylon material is not biodegradable.
I haven’t wore pantyhose since 1968 and I don’t miss it one bit. It’s also been almost that long since I wore a dress. Some things are best left in the past like suffocating girdles, garter belts, plastic jewelry and pantyhose.
Going It Alone
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.
Why, why, why are so many government workers rude? I’ve pondered this question all my life but especially during my 26 years as a disability advocate. I experienced people who conquered obstacles so difficult that the impossibility of it was stunning. They came in with pride not regrets of their condition because they had beat the prognosis. Then these same beautiful souls would get humiliated, ignored and embarrassed by some worker at social security, Medicaid or food stamp office as if they were slackers and loafers instead of incredibility courageous and independent. Why would anyone want to disenfranchise another?
There is no satisfactory avenue to complain about staff. Their jobs are very secure as they are protected under the Federal Government Employee’s Union. It is almost impossible to get fired as long as they perform the essential functions of the job which is correct and timely paperwork and does not include politeness. Performance reviews are based on job duties alone and merely being rude to a citizen needing help apparently doesn’t qualify as dereliction of duty. Essentially you’re in for life unless you want to quit.
There is absolutely no incentive to treat people like human beings. In the private business sector these individuals would not last a day. You wonder if these civil workers are products of lower upbringing and enjoy their temporary power over someone who doesn’t understand the overly complicated system.
There needs to be some drastic changes to a system that encourages efficiency over empathy. The government needs to hold their staff to a higher standard and eliminate the “us vs them” mentality. There are many good staff in these government offices also but they are overshadowed by the ugliness of their co-workers and suffer the same reputation they don’t deserve.
A few things you can do are let the supervisor know how you appreciated a good staff. Complaints never go anywhere but compliments do. For bad situations get in touch with your U. S. Congressmen’s office. Helping constituents cut through red tape is the kind of stuff that makes happy voters.
“Rudeness is the weak man’s imitation of strength.” ― Eric Hoffer, The Passionate State of Mind: And Other Aphorisms
1991 & on –
Life now is all about “bucking up” and getting on with our lives. My daughter and her sister came home two months after I did. She is in complete remission. I can walk with crutches now but can only use my thumbs because of the contractures. I taught myself to drive wearing leg braces and finally kicked my ex out. I am apprehensive on my own in my condition but I have faith I’ve done the right thing. The kids and I are all together again and that will get me through anything. I know someone is still by me from the other side as I can feel the presence at times and when I am conflicted over a decision or direction I want to go the knowledge is there. It is not a voice like it was in the coma rather it’s like intuition only more persistent.
I trusted it whatever it was and knew something was waiting for me to fulfill. During the next year I learned to walk with a cane and do most everything with my hands even though they were still in contractures. We all licked our wounds physically and emotionally and counted our blessings. I knew it was time to move toward my destiny but did not know where that was. My old plan to return to Phoenix didn’t feel right anymore. Then one evening sitting with the kids on the pier watching the crashing waves smash the shore it came to me. We had relatives who lived in Missouri. I had only drove through the town one time but I could not shake the feel of urgency. It was like a divine decree.
There was no way I could ignore this powerful pull. So, I sold the RV dirt cheap and everything in it. I bought new tires for my old 79 Ford pick-up, filled it with gas, three kids, two cats, clothes and one TV and headed north. I understood this was my destiny and I would make it. Within a week we rented our first house in six years. We had finally come full circle. Money was very scarce with just social security disability and a little child support but we were free, together and alive. It was good to be with family again. We had been through so much that the struggle to survive now was nothing comparatively.
But, surely this was not what I was pulled here for. One morning while enjoying a strong cup of coffee that powerful tugging returned. I knew I had to go find a job. My family thought I was crazy with all my complicated disabilities but I could not deny it. I was apprehensive of course. My only transferrable skills was my mind and my life experience. Everything else was braced up, atrophied or contracted. Nevertheless, I trusted this direction of my destiny. I was afraid the job search itself would do me in let alone a forty hour work week but by now I knew how to push through my egos fear.
My second interview was with an organization called Southwest Center for Independent Living. I was hired with a hand written resume in my hand but had no idea why or what they even did. It all soon fell in place as I learned they empowered people with disabilities to live their dreams by removing barriers physically, attritional and mental. All the lessons I had overcome, the struggles, the despair, the determination are now going to be played forward.
I have just retired after 22 years of empowering so many people with disabilities to see their potential and their self-worth, a career I never dreamed of pursuing. It was the most rewarding thing I’ve ever done in my life. I wondered what I’m to do now with all those years of working in the disability field and the intertwining of my life experiences. I had entertained the idea about blogging because I have always loved to write but knew nothing about blogs. About six months before I retired I got an email out of the blue from a blogging site so I looked into it. I created anyoneteachone.com and here I am. I’m still playing it forward and hope I can until I cross back over.
Never give up your dreams, never believe in prognosis and believe with all your heart the enormous power you own when you acknowledge you’re potential.
April – 1989
Recovery was slow and tormenting. It took almost two weeks to wean me off the ventilator that had pushed oxygen into my lungs for 91 days but my lungs were ready to take over now. They finally cut my medications back so I’m beginning to think more clearly and remember a few things before the illness. I have permanent systemic nerve damage and severe hand contractures, I may or may not walk again and I cannot raise my arms above my waist, I still try to make sense of what happened to me and why but I’m ready to push through whatever it takes to get my life back.
Soon as my ex entered the room I demanded he tell me where the children were and why I have not seen them. His shoulders slumped and he looked at the floor which immediately raised my anxiety level. He then explained our son was with him but the girls are in Arizona because my youngest daughter, 13 years old, was diagnosed with Hodgkin’s Non-Lymphoma stage 4 the week I went into a coma. A parent had to sign for treatments so her father came and took her and her sister back to Phoenix.
I stare at him in disbelief but I can tell it’s true. My mind is spinning and a silent primal scream comes from a place so deep in my Soul that I am trembling. Finally I find my voice, “CANCER? CANCER”? I thought my life was in chaos before but this is bedlam. “I have to talk to her, I plead. “No I have to go to her”, I yell. I’m thinking of three days ago when I sat up for the first time and only lasted a few minutes before passing out. I am beside myself with agony with the realization of the debilitating status of my body. This can’t be happening! We were all a healthy family just last summer. Its late evening so the nurses said they will help me call her in the morning and that helps to calm me a little.
I can’t sleep from overwhelming fear for my daughter. I shut my eyes when anyone comes in so they won’t give me any strong medication. I can’t wait until morning when I can hear her voice. But, sometime during the night they caught on I was faking and without my knowledge gave me a huge dose of valium through my IV. I was out for two days. Another two days of my life gone. I was beyond furious. The realization they could take complete control of me “for my own good” was a sickening reality and a horrifying one. The only other facility legally allowed to do that is incarceration.
I demanded they hold the phone for me to call my daughter. I felt better talking to her. She was finishing her chemo and radiation in a few months. I wanted to hold her, to rock her. She was so brave and so strong and without her mother. I promised soon as I got out of this hospital and she was finished with treatments she would come home. I called her every night.
Anger was my motivator and I used it to push myself to overcome each physical barrier that would qualify me for discharge. I was in constant fear they would drug me again “for my own good”. I tried to act the right way, say the right things, and not ask for pain medication. It was more stressful than the permanent disabilities I was left with. I lied about having home supports, going to an accessible house and a scheduled appointment with rehab in Pensacola. I was actually going home to an RV, no supports except for a 7year old son and an ex who I continually fought with. There was no way I was going to a 6 month rehab treatment as recommended. I knew by now this satellite hospital had no follow up staff to verify my story. I wanted to bring my daughters home as soon as possible and I no longer trusted the medical field to compromise with me or to honor my decisions.
By the beginning of May I was finally going home. The real struggle was just beginning.