Wednesday, January 2, 2019

Disparity in healthcare for the sickest among us.

We live in a nation that is intolerant of intolerance toward any person, gender, or race that is different from the standard white American. Unless you are poor, addicted, and mentally ill. Then it is assumed that intolerance, stereotypes, and disregard are justified.

Recently my girl has needed some significant dental work done. Let me tell you what that process has been like. My girl who has medi-cal insurance, no income of any sort, who is brilliant, but compromised in some significant ways as far as emotional stamina and executive functioning skills go... needed an oral surgeon who was prepared to sedate her for the work she needs done. Because of her methadone dose and because of the amount of work she needs done that is tricky and needs to be done in a hospital, we found out after calling 8 oral surgeons through out Northern California who accept medi-cal but being told all of the various reasons why they couldn't serve her. Finally, one kind phone answering girl suggested going to Highland Hospital in Oakland. She even provided me with all of the information and told me how the process works and what to ask for. A bright light in a dark world, an act of kindness for a tired out old woman.

Highland Hospital is 3 hours away from our house. This is the process....start calling at 5:30am on the dot, to hopefully be one of the 50 patients they will see that day. One day we made the cut and we were on our way by 7am with referral in hand, to grab a coffee and listen to podcasts and get to downtown Oakland by our appointment time of 11:00. Two other attempts have been met within minutes by the recording saying they are full for that day and to try again tomorrow. Any day that we decide to this, has to be a day I don't work, has to be cleared of all commitments in case we do make the cut....its quite the process.

Once there you go through several check in stations, walk through a maze as the hospital is being renovated...take the elevator up to the 4th floor, walk down the left corridor and then take the elevator to the 3rd floor, go to the right, take that elevator down to the second floor, go through the double doors, let them know you are there, then leave that room and go down the hall into a huge (filthy) waiting area and they will call you from there in a couple hours.

She was treated eventually but they would not sedate her due to her methadone dose, and they only take care of one tooth per visit....she has 5 that are an issue.

In contrast, I have a friend whose husband needed some dental work done by an oral surgeon....this person has good dental insurance, a good job, is a professional person. He made his appointment locally, had someone go with him the day of the appointment to give him a ride home after being sedated.....and went home to rest and recuperate.

I understand all of the dynamics and factors here...one person works hard, is a rule follower, has lived within the parameters of societal good behavior.....and one hasn't. One became sick at a young age and it changed the course of her life. Because of the type of sickness, because of the time period 17 years ago, because of the lack of understanding at that point, because of the complexities and lack within the giant HMO health facility that was available to her (which is still being picketed by the mental health care workers as recently as 2 weeks ago to improve care) .....she fell through the cracks of a gigantic system of care. Despite her families best efforts.

Today, the very healthcare system that initially failed her, continues to chant, "you don't matter." Not in words of course, but in deed. Navigating the system to receive the most minimal care she requires to survive is impossible for her. She can't do it without help. Getting help is so hard, so complicated, so far away, nearly impossible, that without a helper, one would quickly give up. She said on the drive home, “Thank you mom for doing all of this. I wouldn’t have known where to even start. I don’t know what someone does who doesn’t have someone to help them. Its all too much.”

Kindness matters. Preserving some sense of dignity matters. Treating people like human beings matters.

Some years ago in a meeting I heard a woman share. She looked rough, had poor grammar, her hair was overgrown and unkempt, her makeup was garish and bright...and then she began to speak about being sexually abused by someone she trusted and how that held her captive for so many years of her life, how it led to her substance use, and eventually to her ruin, until she found her way to forgiveness. She was able to go to this person on his death-bed and forgive him and let him go in freedom. What this gave to her was priceless. Her hurt spots were healing and not holding her prisoner any longer. As I sat and listened I thought of the gift I had just been given by the most unexpected source. It made me cry, her story was so filled with her beautiful spirit, and hope and redemption and grace. This beautiful testimony from this rough woman who had lived through hell on many levels, who was broken and hurting inside just like I was, whose path probably would never have crossed mine except in an AA meeting. I thought of how recovery is the great leveler. How we can all learn so much about connecting with people we wouldn’t be drawn to in any other realm of our lives. I thought of all of the people I have missed out on because they didn’t naturally fit into my circle, because I judged them based on appearance or life choices and decided to not let them in.

On a larger scale that is what our medical care system is doing. Judging who is worthy of straight forward, accessible, medical care and who isn’t. Its an ugly truth. Its of course about money…..who can bring in the most money. Money isn’t the core issue though…. Greed is. If we could charge appropriately and in a straight forward manner for a procedure received, if the system wasn’t top heavy and we could keep things simple (this is all in my utopian unrealistic world of course LOL) if care was available to every human being based on the fact that they are a living being, and where there is breath hope still exists for change and renewal, if we could only stop assigning worth based on performance. If only…

Annette

Wednesday, November 14, 2018

Purgatory

I heard this place where some of us (many of us) dwell, called "Purgatory." That place that is neither wholly healed and sober and thriving, but also does not consist of the permanency and finality of being dead either. Its the place where we all are doing the best we can each day. Where sober "most" of the time is better than using multiple times everyday, day after day after day.

We have a new opioid dependency clinic in our county. This is so very needed and such a long time coming, but today I called to check on the status of the rumors of a methadone clinic coming to our town. THAT would be a life changer for my girl. She has been driving or we have been giving rides, down our mountain for literally years to either treatment or to the methadone clinic. Has it led to total abstinent thriving sobriety? No. It has often been miserable, uncomfortable...physically and emotionally, its certainly inconvenient, expensive......but she keeps getting back up and making the drive, hoping that eventually she will feel better and things will actually be better. Recently she said to me, "You know how you hear of those people in meetings whose compulsion to drink and use was totally removed from them? I don't know why I don't get to be one of them, but I think this is just the life that I am called to live. This is my cross to carry. My life is a life of never being truly comfortable, of always having to work at being ok." 

I recently watched a documentary about the champion surfer Andy Irons. The documentary included several interviews with psychiatrist, Dr. Andrew Nierenberg, who is dxed bipolar himself and made this profound statement, "We have to learn how to become comfortable living an uncomfortable life."  That is the purgatory that my girl lives in each day. That is the purgatory that so many of our kids live in each day. It reminds me of The Princess and the Pea....something just never feels right. There is always something rubbing or poking or speaking in an ear or moving or itching....until you are just desperate from some relief. Then a relapse happens, relief, "ok get up, brush myself off, start again," and on and on the cycle goes. Of course there many variables to this scenario for each individual. 

I guess I am feeling like this is it. You know we always ask, "What if this is as good as it gets?" Well.....what if?  Maybe this IS as good at it will get. Can I be ok with that? I think so. Things are calm and have been for a long time now. We live a different life than most of our friends. We are tired. We have spent years surviving the unthinkable. We crave quiet and calm and routine. Im ok with this. I have lost my drive for advocacy work, I just want to do today at my own house with my own family (and trust me when I say that that is plenty.) Maybe this lull will be temporary, maybe not. When a parent calls me from the ER, or reaches out in real life or through email for support, I am there completely, but as far as political advocacy, online advocacy....I . Just . Can't. That door has closed for some reason. I have to assume if its not burning in me the way it was, then its over for now. Maybe God has a different plan for me. For us. Maybe we are all walking our way out of this decade-plus of trauma and fear and uncertainty and its time to just live our very real, perfectly imperfect lives with what we have been given. We are all different people in so many ways then when we started out and for that I am so very grateful. 

Thank you to all who have read here for so long. I have loved the connections I have made here through the years. I will be around....I have some business changes happening after the new year and where else would I go to process all of that, then right here? God bless us all......

Annette 



 

Saturday, September 15, 2018

Dying a Good Death

Most days of the week, I am working with someone who is at the end of their life. They will be leaving this earth soon and my job is to make sure their physical needs are met and to do whatever I can to ensure they have a good passing. That they aren't afraid, in pain, that what they want to be happening...is.  They are at a time where they get to call the shots. Its a time where if you don't fee like having company you can say, "no thank you, not today" and no one will think anything of it. (I wonder why we wait until one is dying to grant them the freedom to speak of their needs and wants without guilt....what if we gave that to each other during all of our living days? I suppose that is a post for another day.) I watch as they tie up loose ends in some of the most beautiful ways I could ever imagine. Reconciliations, forgiving, memories shared, funny stories, confirmation that "Yes, you mattered. You left your mark." I watch as some choose not to talk about or acknowledge what is happening....so I encourage the family to meet them where they are and to honor their choice, but to love them and touch them and say everything *they* would like to be heard. 

What does it mean to die a good death? I want anyone who reads this to think about that. What would *your* good death look like? What would you fill those last weeks with? 

My awareness of us having some sort of a choice about the way a passing can go probably originated with my mom's passing. If you have read here for a long time, you will remember those weeks that I cared for her. I wrote almost every day. She passed away on July 28, 2011.  I had taken care of a lot of people as they were dying but never a family member. I was very conscious of my role as a support person and I was a quiet facilitator...following their lead, feeling that it wasn't my place to suggest or direct. I was there merely to serve during this time. 

My mom was my mom though. She was also my first alcoholic...we had a lot of water under our bridge. She had lived with us on our property (which sounds a lot more grand than it actually is) for the past 6 years. She was 83 when she passed away from advanced kidney disease. Given the choice of dialysis or Hospice, she chose Hospice. So she spent the last 6 weeks of her life in her own little home, with her cat curled up on the foot of her bed, looking out the window at all of the trees surrounding her place. I took a leave from all of my clients and stayed home with her to care for her. 

She ended up being hilarious most of the time. She had spent years on the "kidney diet" which meant no dairy products, low calcium, low salt, among other things.....the first thing she asked me to make for her on day 1 of her Hospice journey was a root beer float. She had one every day....sometimes changing it up to a strawberry milkshake. Or peaches on cottage cheese. Or Ben and Jerry's. "What difference does it make now?!" She wanted to "divvy up the jewelry" into little lunch bags with masking tape labels on them. She wondered how God felt about her, if they were good. She talked about the hardest part of leaving being that she would miss all of us. She wanted to see how things turned out for everyone. Lol Especially "my girl." They were kindred spirits, those two. 

This was a woman who never owned her own home, who lived in rentals forever, who was certain she would end up in a rest home somewhere....and who we soon would discover had spent most of her adult years carrying so much guilt and regret for not living up to her own standards of who she had wanted to be....and now time was up. Oh how I wanted this resolved for her.  So slowly, with the help of our Hospice social worker who was the most wonderful, gracious, gentle and kind woman, and my siblings....we began to walk her through those last weeks. Conveying love and acceptance, there were lots of amends made and forgiveness granted and received. I spent time just being present with her...she talked a lot about everything, a lot about her mom who was not a good mom to her at all. Who was broken and hurting and so mean in many of her own ways...but my momma, bless her heart was filled with grace and compassion for her. This woman who had hurt her so deeply in so many terrible ways and for so many years. Even on my mom's death bed she extended love and forgiveness and grace to this woman. It was a spiritual breaking free, really. The social worker and I sat on each side of her and held her hand while she sobbed out her stories. We listened and asked gentle questions, and just let her talk, and then it was done. She was done. My siblings began to call if they couldn't be there in person and say their parts, one wrote a letter, one came in person, all had come to a place of resolution with her. 

 A couple days later she was sitting up in her hospital bed and she said she felt like everything was ok now. "Everything is exactly the way its supposed to be right now." She was at peace, smiling, happy. 

Facilitating this time with her remains one of the most powerful events of my life. When she finally did pass away nothing was left undone. I can't even convey to you what a gift that was. No regrets, our slates were clean with each other. 

At her little graveside memorial my older brother spoke and said though her life had been filled with some false starts and turmoil at various times.....she died a good death. She loved each of us to the absolute best of her ability, and she died surrounded by safety and security and our love for her. 

Friday, September 7, 2018

There you are! 

I haven't written anything for 3 months and I miss writing so much. After I posted my last post, I never received any notifications of any comments and I thought, "ohhhhh my readers have moved on." I began blogging so long ago just to process everything. I had to get it all out. I never expected anyone to read anything, but then you did, and I made so many wonderful connections. I never did anything to publicize my blog mostly because of the subject matter. I was always trying to find the balance of sharing my journey and protecting my girl's privacy. 

So yesterday I got a notification of a comment and I found about 12 comments in my spam folder! There you all were the whole time! I was so happy to see your names there. So here I am, hoping to begin to write more once again. I have so much to talk about...blogging takes the pressure off my real life friends and family! Lol 

A few of you mentioned the wedding.....and despite me and all of my angst.....it was such a wonderful, meaningful, and beautiful day. Everything turned out perfect. There was a lot of happy tears and so so much laughter. Below are some pictures for those of you who haven't been inundated on Facebook. There is a hilarious video of Molly giving the officiant (an old friend) a high five when he raised his hand to say a blessing over them...but Im not able to post it here for some reason. An unforgettable moment though. 

Annnddd....guess who is going to be a big brother!! 

More later...Love to all,

Annette


Wednesday, June 6, 2018

On Being Afraid

I know! Surprise!! Here I am.... popping in out of nowhere to share my thoughts. Life is very very full at the moment, thus my lack of staying in touch out here. I miss writing though, and have been thinking about once we get through Molly and Ryan's wedding, (which is June 23!!!!) reconfiguring my blog to talk about my Hospice work. I have so many stories from that part of my life. I feel like talking about my girl's  addiction and mental health has run its course for me. She continues to fight daily to be ok, she does not give up, and for that she has my deepest respect and admiration. I think it just all is what it is and I've processed and mulled over and thought about and tried to figure out and agonized for so long, that I am just done with that. This might be as good as it gets and can I accept that? I think so. I recently bought her a bracelet that says, "Nevertheless she persisted." That is my sweet girl. She is a quiet, steady, fighter....who may not always get it right, but she gets back up, brushes herself off, and starts out again. 

So on being afraid....recently a friend asked for my advice on his living situation. There was some conflict happening and he was looking for a new place to move to. On the story went. I responded with a plethora of wisdom...."its their problem, let it be their problem, only take what is yours to carry and figure out, and I ended with this bit of insight....."you don't need their shitty living environment anyway!" (Gasp)

He responded with, "Your right. I think maybe they are afraid too." 

That response took my breath away and humbled me. It shut my mouth. In all of my righteous indignation I wasn't seeing people. I was seeing injustice, rudeness, words, anger, retaliation....but not people. The beauty of that response brought me to tears...the kindness and gentleness of it. The realness of it. 

You know how "they" say we hear what we need when we need it...the very next day I had an interaction that I began to respond/react to with my girl, and I remembered my friends words. I was able to say, "I know you are afraid honey, so am I. We will just keep figuring it all out each day." 

And then I could leave it at that. 

All of this has made me think of our behaviors, our reactions, our responses....just like our kids substance use, they are all a symptom. They are the secondary issue. There is always a root that is beneath our reaction....anger, fear, rejection, shame. Sometimes the root can be a good thing too.....love, admiration, pride. 

This recognition by my friend that this person who was being so unkind to him, was actually afraid was so touching. What if we all could look beyond the initial behavior we see and understand the emotion behind the behavior? Of course that is not always easy.....but awareness is the first step toward change. Understanding the "why" behind the behavior helps me to live in compassion. To live more deeply than just my initial responses to other's initial behaviors....we end up crashing around into each other, all on this surface level with nothing much being accomplished that is of substance. 

Anyway....I have been thinking and thinking on this. "I think maybe they are afraid too." A sentence filled with grace. 

Much love to all. I hope you are well, anyone who still hangs around here, thank you for being here!

Annette 


Tuesday, March 27, 2018

Here We Go Again....

I haven't posted in so long but I have thought about my little spot here often and each of you who read here. So much has been going on, just no time, but today I am just doing it, even though there are a million things I could be, should be, doing.
So this will just be a sort of "update post" for anyone interested.
About 6 weeks ago I was so sick. I missed about a week and a half of work, which for me is unheard of. I am still coughing! This fluish thing that has hit so many takes so much to get over thoroughly. It has taken a lot of my time and energy though which makes me so mad. LOL I do not like to be stopped in my tracks.
I lost one of my long time clients which has been sad. I was with her for almost 4 years. I have had 2 weeks off and will begin with a new Hospice family tonight..which by all appearances was a divine appointment. An Alanon friend asked me if I had any availability to care for her sister. I did, and when I went to meet her I realized that I knew her. We had taken an art class together, and we had a mutual friend that I had cared for at the time of his passing, that she came to visit on his last day with us and bathed him in essential oils and gently massaged his legs. I was so impressed with her gentleness and the oils....I had no experience with essential oils at that time, but it was her actions and those scents that primed me for diving in later. So I am looking forward to caring for her during this time in her own life.
Molly and Ryan and Landon moved into the bottom floor of our house. That sounds so grand....but do not be fooled! LOL We have a big house that is a lot of work and money to keep going so a lot needs to be repaired and remodeled, but its homey and warm in all of its imperfection. Kind of like its inhabitants! So the kid's lease was up at the apartments they were living in, very expensive apartments. We can't give them a down payment for a house, but we CAN share our space with them and give them the financial room to pay themselves rent into their savings account so that they can eventually buy a house. They are sweet and funny and really pretty easy to live with. There is more stuff around of course, but we are figuring that out. It has motivated me to get rid of a lot of my own unnecessary stuff! Having Landon here is good for everyone's soul! He is such a happy and sweet baby. He gives kisses, smiles at everyone, is crawling like a crab, pulling himself up on everything, he lets us kiss his fat cheeks without complaint...
We are busy planning the above kid's wedding which will be on June 23. You all know how I am about weddings. If I could pick, I would do all of the set up, make everything beautiful, then go home until it was over. It is nothing about Molly or Ryan or any person or people. Its me. Its all of my own shit that still occasionally gets triggered and weddings are always my trigger. The most joyful day of my daughter's life and I will walk my way through it but its sadly never my comfort zone. Ive already cried and cried and talked to my sponsor several times over it all. Molly suggested I go to counseling. Yes that is probably a good idea! I bought a fat dress to wear so Im not even putting losing weight and being thin into the mix. I am just doing the best I can and remembering that its not a day that is about me. Its about them...so I look to them, keep my focus on them and their joy and not on my own swirling head and prickly skin.
Shy introverted Little One, who has it stated in her 504 plan that she will not be called on to speak in front of the class unless she volunteers...has been volunteering 2x a week in a friend's resource room health class, and was asked to share her experience with counseling in front of the class. She was given several days to prepare and then off she went, showing very little, if any, nervousness or anxiety. She shared her story, she talked about prescribed medications and then self medicating and the dangers that come with that, she talked about how things were for her 2 years ago and "now here I am talking to all of you." There was a question and answer time and then a boy asked her to stand with him while he shared his class presentation on drugs. The teacher's aides were shocked to hear her story...."You always come in here so self possessed and together....I never would have known that you had been through any of this!"
What a huge step of progress for her! She is forging her own path that is just so not a typical teenage journey! Our homeschool teacher that we meet with once a month asked if we read any poetry as thats a state standard for juniors. I said, "No" with a "yuk!"  Look on my face....but Little One said, "Well I brought along my Viking Book of Poetry today because I was wanting to read some of it." What 17 year old junior in high school carries a 1958 Viking Book of Poetry with them?! The rest of our day was spent with her reading poetry out loud to me in the car and a lot of it was so beautiful.
My girl is moving along....making connections outside of our family with several people in long term recovery. She is serving in the shelter's AA meeting, she continues to help me each week and has even taken a shift of her own on a different night altogether being with our homeless. Our Nomadic Shelter will come to an end this Saturday. It only operates from Nov - March. We are figuring out ways to stay involved once the shelter season is over. We have made so many wonderful connections with staff members and the homeless. Figuring out what our part is, conveying love and care and acceptance.
This last weekend my girl and I walked in the Dose of Awareness walk. She walked in memory of a close friend of her's and I walked in memory of a dear friend's son and another friend's loved one. It was the first sunny day in what felt like forever! We met some other mom friends there....it was a good day until it wasn't, which is how long day's out go for her. I take what I can and let it be enough.
I will try to write more often....selfishly its for my own sake more than anything else. I do better when I am processing my life through writing. After years of using a keyboard I am not patient enough to hand write things out in a journal anymore....but I love to buy journals. Lol
Much much love to all,
Annette
My favorite poem Little One read to me the other day......
The Old Woman
As a white candle
In a holy place,
So is the beauty
Of an aged face,

As the spent radiance
Of the winter sun,
So is a woman
With her travail done.

Her brood gone from her,
And her thoughts as still
As the waters
Under a ruined mill.
         Joseph Campbell

Friday, February 9, 2018

Guest Post by Peter L. A message of hope....recovery does happen. 

From Homeless to Blessed: My Story of Transformation and Finding Strength

 

Sometimes when I’m hanging out with my wife in our nice three-bedroom home, sitting on the couch watching television after a long, but rewarding day of work, I wish that I could go back five years ago to the 28-year-old version of myself, sleeping on the streets of Philadelphia, using a 2-litter bottle for a pillow. I wish I could tell that version of myself not to give up.

 

I remember feeling like I had nowhere to turn. I remember feeling like no one possibly cared about me. I remember sometimes I would go for days without a single person on the street even looking in my direction. I felt invisible. I thought I could numb the pain away with drugs and alcohol. I didn’t understand those were the very things that were keeping me chained to my circumstances. I felt so alone, like no one really saw me.

 

In 2014, I had been homeless (off and on, but mostly on) for the majority of my twenties, and I had been addicted to practically every substance imaginable—both illegal drugs and prescription drugs. I had drank so much that I developed avascular necrosis in both of my hips, and when I got hit by a car, I ended up in the hospital needing a double hip replacement and a femur replacement. I didn’t think I could survive on the street in a wheelchair. I secretly planned to take my own life as soon as I left the hospital. I planned to get enough dope to end the pain for good. I was at my lowest point.

 

Seemingly out of nowhere, my mother called me, telling me I could come down to Atlanta, Georgia and live with her. I had my hip replacements and my femur replacement, and I was in a wheelchair, but she took care of me. I still struggled with drugs and alcohol as I recovered from my hip replacements and femur replacement, but I began to try to be sober.

 

In February of 2016, I met a woman who absolutely changed my life. I’d never really believed in love at first sight, always rolling my eyes when I saw it in a movie or a television show. But the moment I saw her, I knew that we belonged together. We started dating, and we moved in together after just a few weeks.

 

I was still on methadone—a medication-assisted therapy for those with opiate addiction. It was also how I was treated for pain following my operation, given my history of drug abuse. Being on methadone means you have to show up at the methadone clinic every day to get your dose. It’s not a great place to be if you’re trying to avoid the kind of crowd that always gets me into trouble. And so even after meeting the love of my life, I struggled with substance abuse.

 

Ironically, it’s much more difficult to get off methadone than it is to get off heroin or other opiates. Many people who are on methadone—either for pain management or for addiction treatment—stay on the drug for the rest of their lives.

 

Medication-assisted treatments like methadone and suboxone can be great tools. There were lots of patients at the clinic who kept to themselves and didn’t allow the crowd there to steer them off course. Medication-assisted treatment works really well for many people, but it wasn’t working very well for me.

 

I ended up going to Michigan for a controversial rapid drug detox procedure to get off methadone. That was one of the most intense experiences of my life. I understand now that I should have slowly tapered off methadone instead of looking for the quick solution. The procedure left me sick for three months, but still the love of my life stuck by me. She never gave up on me.

 

She has worked in freelance writing for years, and she taught me how to get into that field. She got me a job with a company she used to work for, and I started working for the first time in years.

 

As I started working in a new field, I discovered a real passion for it. I also started going back to Alcoholics Anonymous meetings and working the 12 steps. And in February of 2017, we were married.

 

Now, I’ve been sober for nearly a year, my wife and I have just moved into a new, beautiful house, I love my job, and I spend the rest of my life filling my mind with positive literature and movies, going to church, and volunteering when I can. My life has changed dramatically. 


I think back to that young man sleeping on the street, using a 2-litter bottle for a pillow, and I never could have possibly imagined I’d be where I am today. I look back now, and I see that my wife believing in me taught me how to believe in myself. I can see how God has drastically changed my life, and I feel so incredibly grateful.

 

And now my main goal is to help others who are at their lowest point to know that there’s never a reason to lose hope. Your life can always change, and if you have faith in God, faith in the Universe, faith in yourself, you will end up where you’re supposed to be.

 

Peter Lang is a freelance writer from Atlanta, Georgia. In recovery himself, he is committed to helping others struggling with substance abuse and addiction.