• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Courage, Determination, and Selflessness

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.

<img alt="" src="http://img685.imageshack.us/img685/3159/puppysad.jpg" title="sad puppy" class="aligncenter" width="500" height="375" />

In 1976 when she found out a fun night on New Years 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 Bachelors 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.

<img alt="" src="http://img821.imageshack.us/img821/5937/notalwaysthefairytaleby.jpg" title="&quot;not always the fariy tale&quot; by C Snyder" class="aligncenter" width="400" height="299" />

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.

<img alt="" src="http://img687.imageshack.us/img687/6676/hourglass200.jpg" title="hour glass people" class="alignright" width="200" height="267" />

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.

<img alt="" src="http://img94.imageshack.us/img94/6585/paradisesign.jpg" title="Paradise, California" class="aligncenter" width="350" height="247" />

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.

<img alt="" src="http://img163.imageshack.us/img163/552/sunshine1q.jpg" title="sunshine flower" class="aligncenter" width="500" height="335" />

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.

<img alt="" src="http://img52.imageshack.us/img52/7098/helpinghands.jpg" title="helping hand" class="alignleft" width="250" height="167" />

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 Jeremys 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.
<img alt="" src="http://img97.imageshack.us/img97/974/courage200.jpg" title="courage" class="alignright" width="200" height="267" />

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 months 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.

<img alt="" src="http://img97.imageshack.us/img97/8043/rainbowelam500.jpg" title="me and mom" class="aligncenter" width="500" height="298" />

Comments

Lisa, your article left me in tears.

What a beautiful tribute to a wonderful Mother.

You must be immensely proud of her strength & courage.

I am really sorry for your Loss.
 
Wow - it sounds like you had an incredible mother.....so sorry that you lost her, esp so young.
 
Thank you for writing this and opening up your world to us. It felt very real.
 
Lisa, it's no wonder you are such a strong and bright human being, you and your amazing mother having survived so much adversity with courage and grace. Thanks for sharing her story. Sending my best... S.
 
Thank you all for your comments. I had hoped to write something that would honor her spirit and your comments let me see that I was able to do so. Thank you.
 
She sounds very brave, and that she got unduly punished for fear/weakness. By that I mean, had she gotten her degree, and stayed "true" to herself, she likely never would have ended up stuck in that marriage for so long nor even moved into that pesticide house.

Yet some grace entered--you chose Paradise--

What was the work accident that unravelled it all again?

I have sometimes wondered in my own life...things that turned on a dime. When I went on my summer sabbatical to Santa Fe in May of 2000, a place I usually went to retreat and write, there were fires burning at Los Alamos. The place I'd rented was crappy, they'd doctored the photos; I didn't like it at all. I hadn't been able to sublet my NY apt during the trip, for the first time, because new ownership was suddenly threatening with fancy lawyers, ready to try and evict me for any false reason. So I'd had to leave it empty for my trip.

The fires were burning in canyons where radioactive waste had been dumped. The smoke went for hundreds of miles and was acrid in my lungs. I was scared. I went to a hamburger joint one night and listened to the hysterical residents from Los Alamos, temporarily evicted from their homes, saying the soil had turned to glass...etc.

I called a "seer" I knew who sometimes counseled me. She said quite simply, "Why don't you go north?"

Just go north? Just drive north, to where I had no friends, to where? To Colorado, Utah, what? Just go on my own?

I was too scared to be adventurous. Santa Fe was familiar, and I had friends there...

So I came back to NY (because I could, because for the first time I hadn't been easily able to sublet) and a few weeks later visited CT where I got lyme disease and my life was smashed apart.

I have often wondered, and I'm not trying to be harsh on your mother or myself or anybody, but I've wondered about that. Had I gone north, my life would have been totally different, clearly. Who knows where I'd have ended up, who I'd have met, had I had the courage to just go north, like the seer said so simply.

Still, I don't think our lives should be crushed because we had moments of very human weakness, or took a while to really develop the courage to reach our greater potential. It seems some lives--the punishment meted out is too harsh.
 
Thank you for sharing your special day, and your special Mom, with us Lisa. I would have liked to know such a brave woman. If I don't ever get to Paradise, California, I will forever remember it by your moving post. And I will never think of July 1st the same way ever again.
 
What a wonderful Mother you had Lisa. I felt like I knew her a bit reading your piece. You were lucky to have her and she was lucky to have you. Its amazing the spirit many people show in the direst of circumstance. Thanks for sharing her story and good luck :)
 
I joined Phoenix Rising yesterday, and just read this tribute. It is so brave, tender and beautiful. It also shows that your mother was tender, brave and beautiful. And, obviously, she is still a current of strength for you. That inner connection must be so precious. How lucky you are to have loved, and been loved, by such a woman!

I am sure that you were a source of strength and inspiration to your mother, just as she was to you.

Through your writing, you have both become an inspiration to me. Thank you.
 
Thank you very, very much for all the comments. I have been trying hard to catch up on things and am sorry I have not been able to post sooner.

I am very thankful I wrote this story of my mom, the support you all have given me has meant a tremendous amount to me. You have helped me with finding some more peace with her loss and I am very thankful you all for that.

Many hugs and thank yous!
 

Blog entry information

Author
Lisa
Read time
7 min read
Views
1,164
Comments
10
Last update

More entries in User Blogs

More entries from Lisa

Back