As you may know I work as a personal care assistant caring for a woman not much older then myself. I have personally known her for the past 20 years. I met her at a small church we both attended but really got to know her a short time later when she opened her home for me to lead a weekly children's Alanon support group at. Here was this woman that didn’t have much but she was happy and willing to share what she had.
She hadn't been living here for very long before I met her. She moved here to be close to her parents after she had gotten sick. Because of her illness her marriage ended and she could no longer hold a job. This meant moving to Minnesota to be closer to loved ones that could help her out.
Over the year that I went to her house each week, I got to know her and her young daughter and later would meet her son, who at that time still lived with his father in another state but came to stay for the summers. It wasn't long before I realized that I had found more then a friend in her.
At the time that I started leading the support group, she was in the earlier years of battling the disease of arthritis. Seeing the way that this woman suffered tore out my heart but also began the journey of opening my eyes to what it means to live in such pain and her battle of seeking out answers so that she could some day live a more normal life.
I cannot even begin to tell you all that she taught me, just by being in her presence. Her softness, her gentleness, her faith, her will to not give up in the face of all that she stood against are just the tip of the iceberg. Little did I know that I would one day have to fall back on all those things she taught me as I faced my own giants after getting hurt.
As her disease seemed to progress, it wasn't long before she realized that she couldn't keep up the house she was living in financially and physically. It was also at this time that her son decided he didn't want to live with his dad anymore which meant the responsibility of 2 children for her. She ended up having to sell her home and buy another one that was smaller and financially affordable for her limited income. This home was right next to mine. The only issue was that it needed a lot of work and was not livable. The only sensible thing to do was have the 3 of them come live with my family and I while we all helped make it livable.
Thus began the journey of a deep friendship between her and her 2 children and my family and I. For one year they lived with us.
Before you give me any pats on the back for taking them in, I must tell you that her coming to live with me, was like bringing an angel to live with me. I was drowning in my own mess of a marriage and not one person knew this. She came to me like a cold drink of water. I was dying in my own private hell and an angel came to bring me hope.
Here we were with my 5 children and her 2 children, all living under one roof. What a time we had. The joy, laughter, fun and tears we shared were the icing on the cake.
Without this woman my eye’s might not ever have opened. I might not be alive today had she not shown me hope at a time when I thought all was lost. Without this woman I might not have made it this far in my own battle with pain, doctors and living with an injury.
Both of us moved from that neighborhood but we continued on as friends. While many people walked away from me during my divorce, she was one person that walked with me.
This woman has had joints replaced, had injections, has done the many many things the doctors told her to do and been on more drugs then anyone I know. Yet she has persevered.
Her feet and hands are twisted and turned and she has had surgeries on them also to try to straighten them out. She has to wear special shoes and if you seen the feet she walks on you would cringe with knowing how painful it must be. She is unable to raise her arms up which keeps her from being able to dress herself or wash her own hair. Every time she moves it hurts her. Yet she keeps moving.
After her last surgery about 3 years ago, she had such a hard time recovering that it was decided that she needed a personal care attendant. About 20 months ago, she asked me to consider taking the position and I’ve been working with her ever since.
One year ago, she went to see a new doctor to get new answers because she refuses to give up. One year ago, she found out that over 20 years ago, she was misdiagnosed and that she has had Lyme's disease this whole time. The Lyme's disease caused the arthritis and all the ailments she has dealt with all these years.
Fighting Lyme’s disease is not simple. In fact it can be almost impossible to get rid of when it has gone on this long.
She was not able to withstand traditional treatments so she has now been receiving alternative treatments which had been helping. But, we had to take a break from it for the past several weeks because her mothers health has not been good. A whole different story and lessons for another day. We will hopefully be starting back at going for treatments. Who knows where this will lead her. Right now, it’s a day at a time.
Every single day that I have worked with this woman, my respect for her increases. She is amazing to say the least. While she believes that no one could love her like she is, if she could see what I and so many others see, she would see that she is beautiful beyond words.
Yes, if you were to look at her physical body you would see the battle scars, the thinness,the swollen joints, the twisted hands and feet and the pain etched into her face. But if you take the time to really see, you see so much more. Her eyes and smile…her delicate features..the dignity with which she carries herself. Yes, of course there is her beauty from within that only makes her even more so on the outside.
My biggest task with her is helping to keep her dignity which could so easily be lost in everything she has to allow me to do for her. Imagine having to have someone put on your bra for you. Imagine having to have someone put on and take off your swim suit..wash your hair and comb it…to shave your arm pits…sometimes even to put on your make up…imagine if you couldn’t button your pants…imagine if someone had to see you naked on a frequent basis. Imagine.
Imagine not being able to do the things you take for granted…the simplest of tasks that you do so quickly and without thinking.
Imagine losing everything, your marriage, your career, your pride, your well being, your ability to care for yourself and your home, all because of your health.
Having the wisdom and sensitivity of knowing when to step in and help and when to stay back and watch is a continuous task of mine. What she can do one day, she may not be able to do the next. Giving her the dignity of doing for herself what she can, in spite of the frustration she expresses is one of my most difficult things to deal with.
Most importantly, she needs me stand with her. To believe when she cannot. To not give up on her even if she has. Daily.
Allowing her to feel without trying to fix it…sitting quietly with her when she cries…crying with her…listening. Seeing someone you care about suffering is one of the hardest things to endure.
I know that my pain does not compare to hers.But she knows I understand more than a lot of people so we have this in common.
We are pain pals. :)
Just writing all of this makes me cry. Having a front row seat to her life tears my heart out at least a hundred times a day. How can it not? Yet, I am blessed beyond imagination by her. I pray for her on my way to work each day. On my way home, I pray and cry. Sometimes, I am so fricken angry to see someone so extraordinary suffering so, that I scream angrily at God.
And yet we laugh and we laugh. We take each moment that really really sucks and we get through it together. And we laugh in spite of being naked…of being in so much flipping pain you want to die…of not knowing what will come next. We take the shit sandwich of the moment and spew it out and yes we find comfort in laughing about the unthinkable.
So every day I get paid to go be with this extraordinary woman. At times I feel guilty for that.
She is my teacher. She has allowed me to learn from her first hand. She is my angel that has reminded me time and time again, that I am not without hope. She is my friend that is more like a sister.
So this is how and who I spend 4 days of my week with. If you made it this far reading this, thank you for listening. Please pray for this angel of mine.
Until next time, hugs & love, Lori