Rhett took this - I think he’s a good photographer!
the healing path
* originally posted on facebook.com
As many of you know, I am now heading down ‘the healing path’, after being diagnosed with Bi-Polar, or Manic Depression. I do not plan on making this a theme on my page, but I did want to say a few words as to why my posts or comments may not be as they have been in the past.
Being bi-polar is terrifying. Absoutely terrifying. You suffer extreme mood swings. You can be manic, in an elevated state where you are extremely happy, euphoric, talkative, and convinced you can do anything. Some experience irritability wiith mania. The depression spirals so low that you have no will to live, no self-worth, and feel invisible. Many have no impulse control, heightened sexual behavior, suicidal thoughts. Mixed episodes where your mood can change rapidly exacerbates this. Some hear or see things that aren’t there, or feel others are out to get them, severe paranoia. Out of control behavior can be rationalized, outrageous ideas can seem plausible.
I always thought this was a hereditary illness. It turns out that it can affect anyone, regardless of your family medical history. It usually affects those who have experienced a great trauma or stress. Mine started when my son was born 3 months premature. I was diagnosed afterwards with post-partum depression. Then, as time went on, it was classified as a ‘chemical imbalance’. When my son was diagnosed with cancer at age 3, and went through intense chemo for 3 years, I was diagnosed with post-traumatic stress disorder. Now it’s bi-polar, manic depression.
This illness takes away who I have always been, shy, quiet, inhibited, self-conscious and polite. The manic highs and lows bring out a stranger, someone who is at times confident, rude, perpetually horny and in everyone’s face about it. The low side brings out someone who has no self-esteem and has no will to live, too unworthy to live. It’s horrifying either way. The person I am is a wife and mother who is proud to wear those titles, who loves and lives and respects others and life. I love music and have the ultimate respect for composers.
In the last two years, untreated, I have alienated at least 6, possibly 7 people in my life, family and friends, with my out of control behavior. I accept full responsibility. I said and did things that were wrong, and horribly hurtful to people I love. I am incredibly ashamed, horrified and regretful. I don’t blame them in any way for choosing not to be part of my life anymore.
I’ll admit, at first that wasn’t the case. I felt like they were turning away from me because I wasn’t good enough for them. I wasn’t saying or doing things the way they would. I didn’t have the same beliefs they did. I didn’t live my life the way they wanted me to. I thought because I didn’t live up to their standards, I was being shunned. The only one who knows the reasons why they chose to end our relationships is with them. It may not be any of these reasons at all. They were hurt, and probably scared. They may have just had enough. Whatever the reason, I don’t blame them. It was all my fault.
There is even one person I don’t actually know that I offended with my out of control behavior. I love music and have so much respect for musicians. However, I became obsessed with a famous musician, who I do greatly admire and respect, but I treated as a sex object and made a joke of. This is just as horrifying and shameful to me as the hurt I caused people I know. What shames me most is that I honestly do have a great admiration of him in so many other ways. I wish I could say that he is blissfully unaware of any of this, but unfortunately for both of us, he is painfully aware of what I have said about and to him.
Why am I posting this and speaking publicly about things that most people would keep private? Mental illness is so often misunderstood, and patients are given very little, if any respect. It is one of the most discriminated conditions in the world. It cannot be cured, and can only be treated to help manage your mood swings, and live a more ‘normal’ life. I’m hoping that the healing path is not just one that patients and their families or friends find themselves on. I’m hoping for a little more understanding and patience. A little less fear, and a lot more acceptance. An outpouring of love.
the sleeping angel, Rhett and his much beloved purple platypus “duckie”
Inner Strength
People tell me all the time how strong I am, and how continually amazed they are by this. I have to say that most of the time, I don’t feel strong at all. I feel hopelessly weak more often than I like to think about.
I look at my sleeping child, who is such an angel that I can hardly bear it. The overwhelming parental pride, love and vulnerability can be crushing.
When Rhett was born 3 months premature, at 2.6 lbs, the doctors said there was at least an 80% chance he would survive. I never wavered in my belief that he would - partly because I too had been born 3 months premature in 1970, at 2.10 lbs. My parents were told there was absolutely no hope, and not to get attached. I knew in my heart that Rhett would be a fighter.
He had 80+ days in the NeoNatal Intensive Care Unit, as well as more surgeries than both his parents put together in his first 4 months of life. He came home at 4 months, barely 5 lbs, but to us he was enormous! Now at 73 lbs and 4 foot tall, the mind boggles at how far he’s come. When he came home, we thought his health issues were being put to rest.
At 6 months, he was enrolled in the First Steps program to begin therapy for developmental delays. He had physical, developmental, occupational and speech therapy every week until he turned 3. Four therapists, four sessions, four days a week, every week. These amazing people helped our son develop in ways that words cannot express. It was much, much more than he would have learned with just his parents at the helm.
When he turned 3, he was promoted to a preschool for children with delays. He continued his therapy, and thrived. He has always been an extremely happy, laughing, loving child who is curious and deeply interested in how things work, and who is completely outgoing and uninhibited. He would wake up every day and say “it’s a beautiful day”.
After two days of his second year of preschool, he was diagnosed with Acute Lymphoblastic Lymphoma, a form of Leukemia. I will never, in my life, forget the blase way the technician at Riley Hospital for Children told us “oh, and it’s malignant” as she swept from the room with news that the mass in Rhett’s chest had been x-rayed and explored. Two days later, the physicians held a meeting with us to make a formal statement and to tell us what to expect, what his 3 year course of treatment would be and what we needed to do as parents.
Rhett spent 2007 in intense chemotherapy, with more surgery, more x-rays, more mri’s, more bone marrow and spinal taps than we can count. As a 4 year old, he had no idea, thankfully, what cancer is and that he was even ill. His stregnth was the admirable one. He would cry sometimes during procedures, but by the end, he would be thanking the doctors and nurses and putting it behind him. Mark, his father, and I would be emotional wrecks. Rhett would be smiling and laughing. When he lost his hair, Mark and I shaved our heads too. It was such a small, tiny thing, but one of the few we could do.
In fall 2008 he was declared ‘cancer free’ and he goes for check ups every 3 months to confirm this. ALL can return within the first 5 years.
We also thought at this time that Rhett’s medical issues were behind us. However, as time went on, he began to have escalating behavioral concerns as he went through kindergarden and 1st grade. At first his doctors thought this was an aggression that some children with illnesses have after going through treatments without having the ability to stop them. This is was not the case. Looking back, there are signs of these issues from birth, but there were too many other things going on to make this more noticable.
A few months ago Rhett was diagnosed with a form of Autism. He has almost no impulse control, and frequent outbursts of uncontrollable behavior. He has the moments of Tourette’s associated with Autism as well. He is on a medication that does not sedate him, but helps him to focus. One of the problems he was having in school was that his ability to focus is very small. When he does focus, he is very, very smart, but this comes in 10 - 15 minute incriments. Otherwise he becomes overstimulated and blanks out.
Thankfully the school he attends has just incredible teachers who have had many years of helping students with these issues. He is in delayed classes, as well as integrating with the ‘regular’ class.
This summer has been a test of my strength and endurance. When he is not on his medication, his wild, out-of-control behavior is exhausting and nerve-wracking to say the least. To have your 7 year old running through the house shouting the f-word repeatedly, shoving you around and making demands is enough to convince me I’m a failure as a parent. By the end of the day, my nerves are shot, my emotions are spent, and I go to bed yet again berating myself for all the mistakes I have made with him and wondering what kind of life he will have.
All I have ever prayed for is that he will have a happy, healthy adult life and be loved. I hope he finds a career he loves, friends and family who adore him, and his soulmate to share his life with, as I and his father have. My parents gave me the freedom to live and make mistakes and discover who I am and who I want to be. They never judged anyone on what they look like. I want to be as inspiring and open as they were. I really didn’t go through the awkward age of teens where I was ashamed to be seen with my parents or of them. I thought, and still do, that I have had the coolest parents alive.
That being said, I have absolutely no idea how I will ever let him live his own life. How I will be able to bear it when he learns to drive, graduates high school, and wants to move out on his own. I have had so much worry for his safety that I have a list of professions I hope he doesn’t aspire to. I plot to buy the house next door to wherever he goes. I pray that when he finds his soulmate, it’s someone I love too.
We used to tell him how brave he was, during treatments. Yesterday, while driving in town, a bolt of lightening flashed in front of the car. I let out a small scream. Rhett said “Mom, you don’t have to be scared. You can be brave because I’m here with you”…
Do I feel strong? Almost never…but what I do have, is faith.
To quote Jack Blades, one of my most favorite musicians on earth:
“Sometimes you gotta have faith
in something that’s greater than yourself
Sometimes you gotta believe in
something that’s bigger than yourself
Oh I believe”
I do believe that God has a plan, and although we may not understand it, there is a reason.
This is me - taken shortly after the casts were removed - I was hell on wheels
tumblrbot asked: WHAT IS YOUR EARLIEST HUMAN MEMORY?
having the casts cut off both of my legs at age 3. I was born with Cerebral Palsy, and the cords in my legs weren’t long enough to put my feet down. So I walked on my toes until I had surgery to lengthen them. I just remember the assistant bringing out a drill and thinking “they’re going to cut my legs off”. My Mom says I never moved, never said a word, and didn’t cry. My eyes got wide but I watched in complete silence while the casts were taken off. Then I was ‘hell on wheels’ as I learned to walk correctly and could run around like other kids. ;o)
The Elms, music and life
I came online to write about the Elms final show in depth, but I think Teresa’s post may have said it all. She’s ‘Indiana Wildflower’ and her blogs blow me away.
Back to the Elms. I can’t say enough how incredible that performance really was. 4 1/2 hours of heart and soul and sheer love of what they do. It was such an emotional, powerful experience and I am so honored to have been there for it. I’m grateful and touched and so proud of being a witness to what was a brilliant evening, and a hallmark moment in history.
When I was in high school, I was a very quiet, shy reserved girl who rarely spoke and basically tried to blend into the backround. The only thing most classmates knew about me was my love of music. I was hopelessly, completely and utterly obsessed with music, and specifically rock ‘n roll. I was voted ‘most likely to be a rock star’, which I countered with ‘most likely to marry a rock star’. As much as I love music, I cannot create it. I can play piano barely and I am hoping to start taking lessons again and start from scratch. Since I can’t create it, I celebrate it with a passion. I have the utmost respect and awe for musicians and composers. My mother taught myself and my siblings to have an exteremely high value for music. Family was always first, but I think music was a close second. My Mother is a self-taught classical pianist and my brother a guitarist, who has written and performed his own music for almost his entire life.
When I was first married, almost 14 years ago, my husband went with Teresa and I to many concerts. One of the first things he said was that he watched us and the crowd, and he noticed that “You and Teresa really feel the music. You are in the music with a depth that no one else has.” A lot of fans skim the surface, they hear the music and dance to the beat, but they don’t seem to feel it the way she and I do. I told her during the Elms show “Are we the only ones who seem to really feel the music?”.
I have a lot of health concerns, which is an understatement, but when it comes to music those seem to fly out the window, and Friday’s show was no exception. I was born with Cerebral Palsy, and I am diabetic. That didn’t stop me from standing on cement flooring for almost 4 hours (even in shoes with added support), dancing my butt off, or going without eating or drinking for almost 14 hours. I get so carried away that I simply forget until my body forces me to remember. I had lunch at noon and then promptly forgot to eat supper, in my excitement to get to the show. I had two hard cider beers before the show. Once the music started, I just lost my head.
As I mentioned in my previous post, I danced a full body boogie. I’m talking legs stamping the beat, hips swinging, arms waving, head banging and my purse flying around me (looped over my shoulder) in an attempt to keep up. All of the people in the crowd directly around me were upset by this. For the first time, I did not fall all over myself to apologize. I was not going to. I was having the time of my life, in the moment and I wasn’t sorry. I’m not usually this thoughtless but I was in the groove. I probably looked absolutely ridiculous, but I didn’t care. Half the time my eyes were closed because the stage lights were hitting me. I have sensitivity to light and I didn’t want a migraine to come along and destroy the evening.
I danced until the point where I knew I had to stop. My left knee was swollen and beginning to give out. I was losing my balance and catching myself on strangers, for which I had to apologize. I knew if I didn’t give up, I would fall down and not be able to get up or walk without assistance. I didn’t bring my cane, so my options were few. I staggered thru the crowd like a drunk, but because my knee was going out and because I’d let my sugar drop to an unsafe level. Being diabetic is scary. If you let your sugar drop too low, combined with dehydration and other factors, you can slip into a coma. Being up front, not drinking, not eating, sweating profusely in the heat, was a very, very deadly combination and spectacularly stupid on my part. When it comes to my obsessions, I am a bad diabetic.
I got my waters, took my glucose tab and found a seat by the front door. I propped my knee up and sat back. When Teresa found me after the show ended, she was completely spent. I can only imagine how exhausted the band was.
It’s now Sunday and I’m still recovering. My knee is still swollen, and although I have eaten, drank, taken meds, and slept, my sugar is still out of whack and I still feel ‘funky’, my word for being out of balance. A concert of normal proportions takes me a couple weeks to fully recover from, one this size may take a month, lol. And I’m still bad, I’m sitting here shaking from low sugar, and I haven’t yet eaten today because I wanted to come online and write this, lol.
I was already in bad shape. I spent the last 3 months in preparation for two other concerts I went to in June. I created a fan page for the artists involved and I have spent wayyyy too much time online devoted to maintaining the page, continuing to construct it and interacting with my friends and followers about said page. I asked Teresa during the show “Is it too late to create a fan page for the Elms?” LOL…
This post is completely self-centered and not what I intended, but my best friend for most of my life has said it all about the show. God love her. I know I do - and we LOVE the Elms…Bless you boys for being the soundtrack to our lives.
