Thursday, July 27, 2017

Bordeline Personality Disorder

I lost Taylor to Borderline Personality Disorder (BPD). After 22 years of suffering with comingling issues from birth, never resolved, an inpatient psychiatrist identified her disease. He told her it’s incurable. No medication will help. Nothing except Dialectical Behavior Therapy would help, he said, and not for another year would she begin to feel better. DBT does help many people with BPD and the benefits to clearer thinking can be achieved. The problem is that people with BPD most often feel caught out, exposed, tricked, unable to feel safe in any exposure to another who could reject them. She didn't feel safe in therapy. Most therapists won't see people with BPD for this very reason. They usually don't follow through with therapy and there is no medication to help them.

The person with BPD does not suffer alone. Entire families and friends suffer along with those affected. People say there is a stigma attached. I disagree. I don't think people know what Borderline is at all.

Sadly, I lost a 22 year battle with Taylor in which some of this could have been alleviated or avoided with research, funding, and a better understanding of Borderline Personality Disorder. Several doctors and all of her counselors missed the diagnosis. For Taylor, she was—found out—and lost hope. She took her life on February 2, 2016. It’s time to stand up and educate people about BPD. I believe there could have been hope for her and that suicide was not the answer for Taylor.

Don’t give up. Text HELLO to 741741 or call the National Suicide Prevention Hotline at: 1-800-273-8255 if you feel suicidal.
There are two articles I would like to credit for acknowledging Taylor’s and our family’s struggle to help her. Although these articles describe most of what Taylor suffered, she lived a very simple life full of love from friends, co-workers, and family. She devoted her time and her life to love and falling over-tummy-grabbing knee-slapping raucous and infectious laughter. She was a fierce advocate for people and animals. She showed an incredible force when she wanted to (and most often did) save a vast number of people and animals who suffered. She displayed a vulnerability and passion that will echo with everyone she touched…forever.

The first article describes the symptoms I shared with doctors and counselors from the time Taylor was 3 months old. Know them and share them. You can save a life.
http://evome.co/19-signs-you-grew-up-with-borderline-personality-disorderr/

Next, is an article with quotes from people who suffer with BPD and whose symptoms mirror Taylor’s:
https://themighty.com/2016/12/how-do-you-know-if-you-have-borderline-personality-disorder/

Finally, I would like to acknowledge the non-profit group, TARA4BPD, for offering some answers and findings through extensive brain research studies found around the world, as well as a commitment to finding a cure for Borderline Personality Disorder. Founder, Valerie Porr wrote the book: Overcoming Borderline Personality Disorder:  A Family Guide for Healing & Change.
I can’t change Taylor’s or my past. But, if you are or know someone who suffers with Borderline Personality Disorder, it’s time to find ways to alleviate the pain. Find a way to understand that they don't see the world as others. They don't understand what you think they should. 1 in 3 Borderlines die by suicide, not think about it. They die. 70% try to die. 2/3 of Bordelines try to die because they don't understand. Please help other humans who feel differently than you, who express their pain to you, who need you to tell on them when they try to kill themselves. Education, funding, and comprehension saves lives. But, you can love people who struggle and try to have compassion for those who struggle to simply stay alive. 

 

 

 

Finding Hope


I want to prove myself unloved. I want to show that people I care about no longer care about me since Taylor left this Earth a year and some months ago. I want to show my call log. Few people call at all. Mostly, my parents, sister, and significant other call and visit. I send invitations and texts whether I’m in town or at home in the country. AH-HA! I live too far away! I see. So, I’ll make plans in the city. My invitations and texts are adrift in space. Timing is not right. People have lives and plans. They’ve moved on. Texts are not returned. It's the Depression talking. If it were me before Taylor died, I would have and could have either planned or thought correctly about the situation.

Birthday for Tom. From Left: Gabe, TJ, Paulie, Tommy, Haley, Taylor.
I want to be angry! Why aren’t you calling to check on me? You told me not to die because you needed me! I should have taken my life when I was crazy! I giggle at myself when I say that, jokingly, to close friends. Of course, by now, I’m not suicidal and I don’t know what changed but none of the people who said they “needed” me call now. They don’t check on me. They say an hour is too far to drive but they drive for an hour for a concert or a hike… I don’t want to go down that road.

Rewind. I know the truth. It just takes some time for me to get there and when I do, I’m usually crying. Firstly, the friends I have known for years upon years do not require a visit or call and it’s understood that they’re on the other line waiting for me or vice versa—unspoken rule of long-term friendship. Secondly, the friends I spent time with were busy before Taylor died. I helped them in crisis. I made the plans. I called and invited. Thirdly, my house was a revolving door. Oh, how I love a cliché like that one. People in and out all the time, young and old. I miss that part of my life. Those friends’ lives and the lives of my children and their friends would have changed, anyway. I was at home far more than away. I was satisfied with working and staying home with my family. I liked making plans and I liked being at home with Taylor and Tommy before he went to school in Florida.
From Left: Amanda, Gia, Taylor, Haley
 My life was changing before I was grieving. I was grieving before I was grieving. Before Tommy left for college, I was gasping for air. I could not imagine him away from the refrigerator. I couldn’t imagine descending the basement steps for laundry or to wade through strewn dirty clothes in order to hug him from behind, his eyes and ears fixed on the computer in front of him. In fact, after I arrived home from dropping him off at school, I walked into the empty basement and sobbed. I believe that went on for quite some time. He left in August of 2015. Taylor took her life in that same basement just 6 months later. Now, I grieve for both of them.

I enjoy my time alone. I enjoy the country and my dogs. I enjoy company and pretend I didn’t spend the last 3 hours or so cleaning and polishing so that the house would appear clean-ish. I love to show off the woods, flowers, pond, tiny boat. But, I crave the company of others. I am still head over heels in love with the man of my life of almost 10 years. A lifetime is missing before that time and our time together is not diminished in any way by my sometimes sour existence.
I appear on social media as that mom who, hey, I lost my kid but I’m ok RIGHT?! You can talk to me now! I’m ok. I’m not grieving anymore. You don’t have to be afraid to talk to me or need me or talk about her. I don’t want to talk about how or why she died. I want to talk about how and why she lived.
 
I feel another rewind coming on. You see, in shock and in pain, I wanted the answers that people affected by suicide will never receive. Why? Why didn’t she call me? Was it my fault? No, it wasn’t your fault. She was broken. But, was she? I’m finished with that conversation mostly. Those questions will never go away and in fact, when some of her friends visit, we don’t mention her and it’s not intentional. I had a full breakdown just yesterday and again, it was all my fault. I sobbed for hours. It’s too final.

I don’t have the cognitive abilities I had before…. I don’t have the memories. I am still triggered by them. I want to hear about her and see photos I haven’t seen. I want to use her friends as conduit to happiness, partly because they give me joy. They give me peace and love and they can, if they choose, give me a piece of my daughter in sharing thoughts or stories. When my parents and sister tell me they cry and miss her, too it’s strangely music to my ears. Proof! I have proof that someone else loves her and misses her and talks about her. I knew it! Of course I know people think of her and talk about her. I’m selfish now, in that way.

 
I’m envious of mothers and grown daughters where I haven’t been before. I absolutely stomped the brakes on crying or becoming remorseful in clothing stores or restaurants we’ve been. Of course, I keep it inside now and it lives there—but, I don’t allow for the pain to surface because I am by myself when I shop. I don’t have her to shop for or with. I simply do not allow myself to talk about suppositions in shopping or eating together, having grandchildren from her, or watching her get married or helping her furnish her first home had she stayed around. I keep that deep inside me.
One of many parties. Skating! From back left: Paulie, Gary, Nick, Arthur, Taylor, TJ, Andrew, friend. Front from left: Danny, Me, Tommy.
 
I don’t want to rewind, anymore. I don’t want to talk about it anymore right now. I want to tell everyone that they are being mean to me by not calling, by not checking in on me, by not caring about me, by not inviting me to events or coming to this beautiful country. You don’t call me. You don’t care about me. You don’t miss her? You won’t talk about her with me. Why? I am simply screaming in my soul for her and it is manifesting, projecting, being obfuscated by grief. Damn it! Why am I the last to know about my own behavior?  I eventually remember that I’m simply grieving for her. Gut-wrenching, breath-stealing grief that I continue to deny and I pummel my Self day after day.
I miss my role in life. I was her mom in life. I was the safe house that she brought friends to for 22 years. I was the planner and I helped people fix their problems. I was my son’s go-to when he was in town and trust me, I’ve cleaned up enough pizza boxes to build a case that I love his friends as much as I love Taylor’s. I do miss my friends. I am envious. I don’t always understand why I feel so abandoned. Maybe I do have a right to feel this way when looking at my phone records. Maybe it’s a distraction.
Back: Ahmad. Front from Left: Taylor, Justin, Me
My life as I knew it is now finished. No matter what circumstance you find yourself in, this will happen and death will hopefully have nothing to do with the change. Right now, I want to scream and throw my phone, delete all social media, and disappear into school and work. Nobody likes me, everybody hates me kind of tune. I have a choice, though. Tonight, I choose to go to bed with the end of this writing. Hopefully, my very busy son will call back tomorrow. Hopefully, the air will clear and I will not feel so needy, abandoned, or grossly misguided. Hopefully, I’ll wake up with a flood of memories and want to create more. Hopefully. Hopeful. Hope. The answer is hope. I’m grateful for every single person who stepped in at just the right time to shed light and hope. There are some times, mostly when I think of holding my children and the house being full of kids and people and music, that allow me to hope that my myopic lens will widen and become clear. As I would say to anyone who is thinking of suicide as the answer, just hold on for one more night. Things will look clearer tomorrow. Then, we can find professional help. For now, we hope.

Friday, July 7, 2017

Grief In A Box


Grief is a package. It looks different to each person who experiences loss. Some tear the big box wide open, cutting themselves on the sharp edges of the box, dive inside the dark emptiness and find that the box is bigger, stronger, more suffocating than they thought. They find a way out, take a deep breath and trudge on with their day, tripping over the large package as the years roll by, the tears roll down. The box remains large and visible but it no longer needs such deep exploration because the depth of pain in the box is too big to lift out. Some people find the package in their hands, turn it around, shove it in their pockets and feel the edges of the box scratch their skin while they live in consummate denial and pain that appears as lashing out or divorce, lifelong depression.
Some cherish their grief as their lost child, a means to an end, a replacement for acceptance, a reason not to carry on but instead they carry their box in front of them, arms tired, the box heavy, constantly looking inside, repetitive and burning questions they scream into Alice’s rabbit hole. Some build an alter around their box. They place their deities, candles, and their gurus, their books, spiritual practices, faith, and they blindly lead themselves into a false sense of identity because the box belongs over there in that corner, and it’s fine. The box doesn’t need to be opened fully if they just believe that the pain in the box is simply not so real, if they focus on a god or belief system that to others may seem a fairytale.
 
My package is a large box that I painted with glitter glue and begged everyone to sign. Because she would like that. My box is deep and I jumped in with both feet looking for answers, first from the girl I grieve, then from the gods others believe, then I peeked out and grabbed books and people and messages and I brought them with me into the box. I sat with words and ideas, belief systems held strongly by people who knew my answers but who didn’t have a box of their own.
I know a mother who went back to work one week after her son passed on. She ran a marathon and named it after him. I know a mom who lost her son 13 years ago and created a successful campaign to advocate putting a stop to suicide. I know a dad who lost his son several years ago and he’s never quite healed. All of our packages are different. Don’t think we don’t compare.

We compare. I squint my eyes and furrow my brow listening to people talk to me about how much better my daughter is now that she’s dead. She’s happy, now. She wouldn’t want me to suffer. God took “his” precious child or she left this world because because because because because…… The people who speak the most know the least. I want my box back. I go inside, close the cardboard flaps and sit there. I do want to beat on the walls after a year and some months. I don’t count. Some people’s boxes have calendars in them to tell them when to be sad. I don’t want anyone to talk to me anymore. I pout inside my box. I scream and cry. I climb out sometimes and I laugh and dance and hike around. I see tiny miracles and engage with friends. I know my box is there but it’s in the corner sometimes because when it’s in the way too much, I trip and start asking, start begging for answers from people who don’t know or think they know or who want to take my box for me so they make it up.



But, isn’t that what we’re doing? We’re making it up. You read a book and think your answers to grief are in the book just because it gives you permission to grieve or because it explains the stages that are really steps you tumble down and crawl up, sit on, bound up, slide down the rail. They’re steady, they have a loose plank, you get a splinter, miss a step, paint them, sob while sitting on them. Come on.

I remember walking into my first group meeting with a pen and paper. I wanted to know how. I placed my box on the table and ignored the empty spaces where I felt someone should have signed. I brushed off the glitter and placed my box behind my chair so that I could listen to other parents tell me exactly how to care for my box and how to ship it back. I knew there was a way. I knew I needed time and then off ya go, pretty colored box with the deep black waters inside. I was almost killed by those waves and didn’t think an entire ocean could survive in a box! So, tell me how to make this go away. I have postage. I’m ready. I blurted out astounding words like, “Wait, it’s been 4 years and the guilt COMES BACK?!” I don’t think I was in the mail room. No one was mailing their boxes and no one had even properly ended their need for them. I didn’t understand.

I understand now. I understand that there are no answers to fit everyone. There is no right way to grieve. You cannot compare packages. You cannot write a book and THERE, people will forever be healed because there is no here, it’s in your mind or God said my daughter had to go, so off she went and I’m in Church because I need to pray for mercy because the world is evil and heaven is not so there’s that. The spiritually enlightened look at the box and tell me that my box isn’t real. Life isn’t real so my box is really love and love and pain make pain love and it all goes away don’t you see? I do not see as I lift the purple striped cat out of my box.
 
I have dragged my box to my therapist. Every box needs a therapist, I believe. She wrote PTSD on my box and I got to erase it after we worked together. She didn’t climb inside my box or make excuses as to why I didn’t need it. She didn’t tell me I was misinformed about life or god. I was in shock and the stress was too much. I needed to clean some of the pain out of my box and tidy it up a bit so I could focus on living with a clean package that both had its place and did not need to sprinkle glitter everywhere I went. But, I did get to write in marker on the sides of my box. I wrote my name. I declared ownership. I cleaned out the books and chatter of all of the well-wishers who just don’t know what to say. I took down all of the photos of the people I wanted to display as traitors. They never called to check on me. They left me. They deserted me here with this box and no one wants to see it so they act like it doesn’t matter… I almost kicked my box down those steps but instead I vowed to keep anger in my box and pull it out while carrying logs or riding my mountain bike. Sometimes, I ride so hard that when I stop my box is waiting for me with some Kleenex and a drink of water. The wind blows open a flap and allows me to see my words inside, “I’m supposed to miss her. She’s my daughter.”  I toss the Kleenex in the box, place it on my shoulders and ride home happy. There. I processed, I cried, I rode out my anger and I feel better. I put the box in the corner and go on with my day.
I don’t fall into the “followers” category of jumping on to any scripture of any book or find truth and solace in spiritual teachings. Knowing my daughter is with me, in me, of me is a story for a different day. But, I’m not easily led. I didn’t know a thing about loss in this capacity until Taylor left this world. But, I know this.
You own your package. You create space around that box. You live in it, you put it up, mark on it, write in it, fill it with thoughts of suicide, of hope, of surrender, of peace. You get to follow any religion or mindset that allows you to heal. There is healing. Edges become less sharp, the stairs more steady, and you can re-decorate your box however you want. No matter what anyone says, you have the right to your pain. You have the right to hope that one day you’ll pick yourself up and learn to use your box how you see fit. There is no return address on this package. You will suffer. You will ask and ask and ask and try to find answers and you’ll never know the answers to some questions. Your box doesn’t look like mine and you don’t want it to.



My anchors are different and none of them are wrong. Religion, faith, hope, joy, dancing in your kitchen. Whatever you need to feel ok one moment and then one hour and then one day and week at a time can only be determined by you. You are in control of the one thing you believe you have no control of; your grief. Take your time. Make time for your Self. Take care of your Self as you would your loved one for whom you mourn. Don’t let anyone tell you how to feel or what to expect. I tried so hard to find THE answers. The answer is whatever you want it to be. My answer is that my daughter will never walk this earth as my daughter again. And, after a year and some months I continue to sob, wipe my eyes, and carry on. Sometimes the waves are pretty rocky on my little boat in my box. There is healing for me, though. I don’t want to talk about her 3D death anymore. I want to explore and explode her life into being. I want to share who she is. So, I do have a guru or two who teach me things. I listen to their words because they don’t take my box away from me and place expectations on me or try to rub the glitter off my package. I can’t do it alone. But, you won’t find the forever peace you’re looking for. You’ll find joy and laughter, love and healing. If you want to.