July 1st is a day of remembrance for me. It was this day six years ago when my mother passed away from complications of the same illnesses I now have – Chronic Fatigue Syndrome (CFS) and Multiple Chemical Sensitivities (MCS).
She was only 55.
Ivanna Pausmann led a difficult but very meaningful life. It is because of her that I have had the strength to carry on my fight to survive this long. She was a highly courageous woman and through her own struggles showed me what it means to never give up hope.
I miss her terribly.
In 1976 when she found out a fun night on New Year’s Eve with her best friend had ended with her being pregnant, it was not yet common for women to be single mothers. Being a very liberal woman, she knew there was a choice for her to make and that having me would not be an easy road for a single mom without a college education. With great courage to go against her family and follow her heart, she set aside her own life to give me mine.
When I was very young, she began to pursue a Bachelor’s degree in business from California State Polytechnic University Pomona. She would get study time in whenever possible while raising me by herself. We used to laugh about my bedtime books being business textbooks she would read aloud to me every night. Instead of fairy tales with princesses and frogs, I learned about life in the business world from her upper division classes.
I was five when she married my step father. In an odd moment of fearing failure when she would graduate in a few months and newly married, she dropped out of college and began working a more traditional job as a secretary. In this fashion seven years passed.
Shortly before my 12th birthday both our lives came to a crashing halt. When our soon to be purchased house was improperly fumigated for termites, she took the brunt of the residual toxic pesticides that were left in the house which had not been properly aired by the fumigators. That night was the first grand mal seizure she ever had and would be a condition that while lessening in severity, would last the rest of her lifetime.
Her health quickly deteriorated into what at the time were mostly unknown conditions. No one had answers and few were able to help. Eventually she would be diagnosed with MCS and CFS.
Her family did not care to understand what was happening to her and left her mostly isolated with her struggles. Overnight I went from an ordinary 12 year old to an adult now in charge of caring for her, also without help by those same relatives. My step father became a monster.
Somehow, together the two of us survived and nearly five years after our lives came to a halt, they began again.
In a great act of courage, my mom left the monster of a man she was now married to even though this led to us being homeless in a nearby national park for three weeks. Her health was still not good, but it had recovered enough to allow her to drive again. With courage again at every step, she placed a map of California on the picnic table of our campsite/home and closing my eyes, I randomly pointed to the town we would move to – sight unseen.
It was in this town called Paradise that we made our home for the next several years and life bloomed into beauty for us both.
Miraculous is the only word to describe how quickly she healed after we arrived in Paradise, California. After being there only a year she was nearly fully recovered, had begun going back to school to be retrained as a respiratory therapist, and most importantly – she was happy.
She still had a dream to graduate from college. One of her biggest regrets in life was quitting so close to the completion of her degree. In July 1995 she graduated from Butte Community College as a respiratory therapist, a career she loved having because it allowed her to help people who needed her.
I remember how much her face would light up with happiness as she talked about her patients and what she did during the workday. Her first job was on night shift in a small town hospital where she made many friends and found where she felt accepted in life. Her favorite part of the job was when she could spend most of her shift rocking a sick baby in her arms to allow it to rest safe and well cared for between times when she had to give it lengthy medical treatments.
She was very good at her job.
Fortune would turn its back on her only a few years after she began working. An unknown birth defect in her lower back caused some nerve damage during a workplace accident which led to her living the last few years of her life in nearly constant and severe pain. She continued to strive towards recovering from her injury so she could return to work, but it was not meant to be.
Her health declined again as her previous conditions of Chronic Fatigue Syndrome (CFS) and Multiple Chemical Sensitivities (MCS) were now taking over her life once more.
It was around this time that Jeremy and I became ill – also with MCS and CFS. Within six months we were living in a tent on 10 acres of undeveloped land his mom owned that only had water to a spigot in the orchard but no electricity or place to live. With our lives in a tailspin, my mom reached out a hand and offered us help.
To this day, my mom is the only person to offer to adjust her life enough for us to live indoors with her. Even with her own serious health issues, she did everything she could to give us a safe place to live. She sacrificed many things in her life so her home would not make us ill from all the stuff we live in a tent to avoid.
Unfortunately this too was not meant to be. While seeking a larger rental for all of us to share, an unscrupulous landlord lied to us and we all walked into a rental that had been freshly painted and sprayed for fleas. This sent mine and Jeremy’s health to a low that left us feeling like we were dying from the fumes that had followed us home on our clothing and now permeated my mom’s apartment.
Hugging my mom goodbye for what we both somehow knew would be the last time, Jeremy and I returned to Washington and the current tent we have lived in for the last 7.5 years.
My mom continued to be my support and a much needed anchor in the storm that my life had become. A year after I moved back to Washington, her health took a serious turn for the worse. I didn’t fully understand this at the time. Like many moms who care deeply for their children, she tried to protect me from the seriousness of her illnesses because my life was already crazy enough.
It is for this reason that six months later I was unprepared for her to pass away. The thought of her dying soon had never occurred to me and was one she never warned me about. Since our fateful move to Paradise when I was 15, I had often been her best friend, confidant, and support. We were very close and honest with each other.
I can only imagine the strength and courage it took to hold the secret of how very ill she was from me those six months prior to her death.
A few years earlier when her father died, she saw firsthand how callous our social security system truly is. To save money when a person dies who has been receiving social security, their families may or may not have access to the last check the deceased would have been given. It all depends on what time of the month they died. This often leaves the bereaved in debt with last month’s utility bills and rent that the deceased accrued while alive, when the money expected to pay those bills is suddenly denied.
My mom was told on June 26th that she had only three days left to live before her very sudden kidney failure would claim her life. She knew what it meant with her disability payment should she die before July 1st and even though it was five days away, somehow she held on. Her last two days were spent mostly unconscious and even when conscious, very far away. Just after the clock struck midnight and June became July, I told her she had made it and could now rest. She died half a hour later.
Even as she lay dying, her last act in life was one of great courage, determination, and selflessness.
I write this story for you, mom, so everyone can know the beautiful and amazing woman you were.
July 1, 2010 | Categories: dreams, life before illness, ramblings | Tags: cfs, chronic fatigue syndrom, courage, death, dying, grief, Ivanna Pausmann, mcs, multiple chemical sensitivity, strength | 10 Comments