With difficulty.
Precariously.
Tenaciously.
Because we must.
One week ago today I found out that I had been denied for disability. Denied and with no income, very little left to hold onto, the despair I felt nearly swept me off my feet and downriver.
I couldn’t breathe, I couldn’t see past the edge of the cliff I was about to fall over, nothing made sense, the fear was so great, and still is to a huge extent, that just moving through the day is something I am doing with my whole body as tense as a board. I feel it. It hurts. I tear up writing this. I cry easily.
And then love surrounded me. My daughter, my middle child, stepped in and caught me before I fell. She has stepped in and is helping me sort things out. She went to see what social services I could apply for. She set up a fundraising campaign online called Please Help Support Maitri and The Pugs using a painting I did the night I found out I was denied and I couldn’t even speak, I just sat and painted Tallulah looking sad but being loved by her little pug. I sit here with my 4 wee rescue pugs who are my life and heart and know that if I didn’t have them to hold onto I am not sure how I would stay tethered to this earth. I have a very hard time sleeping at night and hold onto them, stroking their fur as they snore and snuffle. These babies help keep me here.
And I hold on because I love my children and grandchildren and dear friends. I have witnessed up close what happens to the ones left behind when someone gives up and lets go and I will not do that to those I love. And more than that —
I want to live. There is so much in this life that is precious and sacred. I love my children so much, and their beloved husbands or wife, and my grandsons, and I have a new grandbaby on the way. Why would one give up when there is such a miracle on the way?
But I’m scared, I’m so, so scared.
“Why can’t you work, at least online, you’re so talented. I thought you could at least…”
This is what I hear, it is often the unspoken question being shouted out into the void, echoing off the walls around me. And it’s so hard to say that I had to sit here with my daughter filling out yet more forms to try to get a little bit of assistance, something for food, medicaid…
My daughter sat with me and gently asked me the questions and she wrote the answers down. She is a psychologist. Though my particular issues are not her field she knows and understands me in a way few can. But imagine sitting with your beloved child, at 60, knowing that helping you at this juncture is the last thing she needs with a young child and a husband and a heavy work schedule, but she is just all love, and kindness and sweetness itself. And imagine your child having to write things about you like…
“Cannot complete tasks.”
There was so much more but that is the one that makes me wince, because it’s true. My bi polar brain thinks up huge plans and schemes and dreams, and means well, and wants to believe that I can do these things, wants to believe that I am normal. But then my brain continues on rocketing all over the place until it’s crashing in debilitating depression. And I can’t breathe or sleep or move. A week goes by and the dishes aren’t done. “Tonight I will do them, tonight I will do them,” and then I cower in the corner of my little nest here, a reclining loveseat full of pugs, and I pull the blanket up and I cry and cry. I am crying now, I am so afraid.
There are things that I can do, slowly, over time, but consistency is not one of those things. I am painting Tallulah and Georgia, I want to make little books with my paintings and illustrations and tell the story of a frightened, agoraphobic, bi polar anxious woman who holds onto her little pug Georgia and keeps plodding along, holding on, trying to help others hold on too through her blog, and people have begun to ask about buying my paintings but I’m so new at this and I’ve never sold my work before. I am trying to figure this out.
The Catch-22 in all of this is that the very worst thing in the world for me, my worst trigger, is not feeling safe, safe in that everything will be okay. I don’t know that yet. If I did I would have the calm energy inside I need to do the things I do at least little by little over time, but I have been living under such uncertain conditions these last years, so alone, knowing the money would run out, waiting for the other shoe to drop as things get harder and harder emotionally that I curl up in a ball and can’t function. If we can find a way for me to have income I will be able to breathe. Right now I am holding onto each breath so hard the next one has a hard time finding its way up and out.
Breathe Maitri, breathe…
And then…
Bi Polar people don’t handle money well. My daughter is going to take over handling my finances. This is heartbreaking and humiliating and I am so grateful. I have been so lost for so many years and felt so alone and was so afraid and ashamed I didn’t know what to do. This angelic child of mine will manage things for me so that whatever money I get is managed well. I really am so, so grateful, and I cry in the dark at the implications.
I am intelligent, I have many talents, I have helped many, many people in my life and I love so deeply, and I want to be of service in the world, but right now I have to be of service in my own life.
Oh God, how can I do this?
I can do this.
I just stopped. Stopped and held my head in my hands, trying to feel my brain, trying to support it, or comfort it, or understand it, but it won’t talk to me. It controls my whole life but it won’t look at me, won’t say a word. How is this right? How can this not be terrifying?
I am holding on. I will hold on. Every day I am coming up with ideas about how to hold on. And I want to share this journey as honestly as I can here because it is so hard to hold on and some people can’t, or don’t know that they can.
Please, we can do this, we can be afraid, and we can cry, and we can feel ashamed if that’s what we feel but we can hold on.
I am anyway. I am holding on, because despite it all I have a lot to live for, and life is a precious, sacred gift and I know it, and with tears running down my cheeks I am telling you dear one, if you are having a hard time and you are afraid just keep coming back here and we will talk about it. It is not easy for me to tell my truth but if it helps one person then it is worth it.
I am standing here naked before you. All I have to offer is what is in my heart. But I urge you to come back and keep reading if you need help because I will give everything I have to give in any way that I can.
I am afraid, but I am here.
Wow. You are so brave to share it all like you do. It takes such vulnerability and humility to stand in these truths as you do, and for that I am in awe. Somehow you will get through these times as you always do. I am glad you keep holding on! So many people love you. I am also glad your daughter stepped in to help and that you allowed her. Some people don’t allow their daughters to take over areas when they really need help ( thinking of my grandma here with that whole situation , and her so needing our care but stubbornly refusing thus far). It is a smart decision and should really make your life easier! Just having someone to help manage a budget is a huge thing. Best of all luck to you. The journey will continue to get better , just keep hanging on during these stormy sea times <3. Sending love, Bekah
Love. You are an irredescent light in a dark universe. Love.
Yes, dear Maitri, sometimes all we can do is just hold on. Think of all the people who love you, and there are so many, and we are here for you to hold onto…we hold onto each other with gentle, loving hands. We support each other from places near and far. It will all work out for good in time and all shall be well. Sending you strength and courage to help you hold on. Here, take my hand, I am strong and I will not let go. Love to you…
Your post made me cry. This is exactly how it feels to live with mental health problems of various degrees. It is especially true when you are intelligent, talented and have some good days. And it is hard to explain to others. Sometimes even I don’t want to see my weaknesses and on many days I can pretend that everything is fine although it isn’t.
I am glad that your daughter is helping you and that you allowed her to help you with finances and administrative stuff. I hope you will find some release with these tasks handed over.
Hang on! Blessings from the other side of the ocean, Corinna
Thank you.
Love you. Thankful for you. Grateful to you. Hopeful for you. Believe in you. Trust you. Love you.
I woke up at 3am and saw your post on FB’s Indie group. I know how you feel. I wish I didn’t, but mostly everything you wrote applies to me. It hurt to read this. This fear can burn so intensely, and seeing me in you just made me sadder. I am happy you have dogs, I feel the same about mine keeping me here. Your words made me go to my page and scroll down a whole bunch only to find this quote to send you:
“How to stay grounded when your ground is shifting:
Hold on to something you know is true
no matter how small” – Denise Kester
If it’s any consolation – and why would it be -, I am still dreaming I can do, and not understanding why I don’t. Why I can’t finish the simplest of tasks, even when a work is sold and paid for, I still stall. Why the days seem so short and others get so much done (or do they?)…I think “do this or that artist has help?” “is there assistance from anybody or is she really that bad ass?” – all of which only put me down further. Is it them or me doing it? I’ve wondered what things I’d be diagnosed with if I went to see the “experts”. I bet I am bipolar too but not just that. I can also hold the title of ADD, PTSD, and anxiety. I refuse to get the financial help I probably could qualify for, because in my head that would put me in the category of “needy”, when I still want to believe I can do more than I actually have been able. And so I hang on. I get up, and go on looking for moods up-lifters; I already know where to go. I seek and chase inspirational things on social media to get me to the point where my mind will want to do something, then the hours pass too quickly. Another day, nothing done.
I’m tired. Really tired. And uninspired and lonely and afraid to keep threading on the vulnerable side, sharing my deepest feelings, as you do, suspicious that it might bite me in the ass later, when my life is running smooth, and my work is famous, and everyone wants some. No, I really don’t believe it, and that’s where the pain is, knowing I am fooling myself. But don’t we all? and some of it works. It seems everyone is on a race when I can’t find my running shoes.
I feel sad that part of my being has lost that fuel called life force, and I honestly think that’s why I don’t do more. I have lost the juice. Unsure where to go from here, or who to trust, afraid I might end up without a roof someday. No child to help me either. Am I depressed? yes, and finding optimism uses up the little energy I had to do something, so it’s gone again.
I think my life right now is just like that movie “Groundhod Day”. It’s frightening as heck.
Oh those spinning thoughts. Wouldn’t it be lovely if we could stop the chatter in our heads sometimes? I think if you did nothing else but paint Georgia and Tallulah, as inspiration strikes you, you would be creating art and beauty on a scale to rival any top novelist or painter. I totally love those paintings and I think in them you’ve found such a strong voice.
So do not worry about “completing tasks”. Your task is to be you. 🙂
Maitre, this post is another example of what you CAN do. So often in our brokenness we focus on what we can’t do. But you have accomplished so much. One of those things was raising great people, as evidenced by your daughter jumping in to help fill the gaps where needed. Disability always denies the first time. If you don’t have a lawyer, get one. They can reapply and probably get it for you. Sending you warm hugs and hopes that you can find the positive to focus on.
It’s been said before but I repeat — you are not alone, you have your loving circle of friends holding you up. Thank you for sharing way down at that gut level that so many of us are afraid to look at. What a gift you have and ARE. I know you will hang on. I never doubted it. With Rachel’s help you will stay afloat and in time things will even out and your creativity and wonderful art and tender teaching will arise and something wonderful will come forth. Remember your Etsy store. Many people you know and know you would love a piece by you (myself included of course) but imagine those who have not yet found you and the powerful message waiting for them. Yes, you can do it – eventually, when you are ready, when you feel more safe. For now, just allow yourself to be loved and know that many many are praying for you.
I’ve been in the same situation. Social Services provided interim assistance until I appealed the decision. I also used lawyers who specialize in Social Security disability. In my case, the very same doctor’s report that Social Security used as their basis for denial was the doctor’s report that my lawyers were able to convince the Social Security Administration of my eligibility. If you do collect money from this fund, be careful with it – it will eliminate your ability to collect support from social services if you claim it as income. You can contact me directly if you wish to find out more. In the meanwhile, always stay in grace, even while in tears.
Just sharing your uniquely transcendant journey is the most important, wonderful thing you can do. It is breathtakingly brave, beautiful and inspiring. As are YOU!
What a story – you are not alone in it. My sister was bi polar and I think I have some of it. What wonderful comments and caring responses. I would love one of your pictures. It would remind me to hang on when I am in one of those overwhelming times when I feel my feet are nailed to the floor. Do you have an etsy account? I know what it is like to be in that cyclone that goes around and around and never lets you out. The only thing that keeps me sanely attached to the earth and moving more or less in a forward direction is my belief in God and relationship with Christ. I will pray for you, for your peace, for stability, for the power of God’s Spirit to hold on to you and reveal himself/herself to you as you go forward.
Maitri, your honesty around your challenges, capabilities, and fears, combined with your enormous gifts, talents, and generosity give heart to all of us, whether the intensity of our highs and lows, or the darkness of our self-doubts or feeling hopeless. Thank you for writing so beautifully about these scary and often overwhelming feelings, when we often feel so alone, but in truth, are not. Sending much positive energy…
You are so courageous, Maitri…..and you do and will help us whatever our own stories are…..through this courage of your’s. So glad for your daughter coming alongside you. And well done you, for receiving her love.
Praying with you today.
Also a monk in the world,
Love. Bev.
Oh my dear, beautiful friends….
I am simply overwhelmed and in tears reading your beautiful, loving, supportive comments. You have no idea how much they mean to me, and if I have written anything that helped you in any way I am deeply blessed, and I will be holding you very close in my thoughts and heart and prayers as we journey along together in our parallel worlds, separate yet joined by tender hearts.
My daughter is going with me to the disability atty on Tuesday to begin to appeal the decision, we are doing everything we can do, and that’s all anyone can do. Please keep me in your prayers, and thank you again for being here with me.
Blessings and Love to one and all…
Maitri
I am so sorry Maitri! I am glad that your daughter stepped in like she did, and that you let her. I am also bad at managing money… ;-/ and it is embarrassing to say that. ;-(
Sending you <3 and huge hugs… I will pray for you as well…
Namaste,
Katie 😀
Just wanted to encourage you that you are not alone. I have come a very long ways, but am not able to work yet- but at least I’m not being hospitalized every time I turn around anymore! Keep hanging in there and let your daughter take over some things. It will give you both some peace of mind: You’ll know that bills will be opened and calls to set up payments will be made as necessary and she won’t worry that you’ll end up homeless without her knowing there was even a problem. Whatever you feel that you think you do the best at, that has potential to earn money, practice doing it. If you are ever blessed with enough stability to eek out a living doing it, you will be more prepared for having practiced. If the deadline is the stressor that does you in, start by creating deadlines after the fact- you did the dishes already and you finished by 10 PM, just state that you had a 10 PM deadline and you made it. Over time, your brain will come to think that you meet deadlines on a regular basis and you can set a future deadline, but start small- wash just the cups in the next 30 minutes.
I hope my ideas produce ideas that help you find ways to work around the bipolar when necessary and make it work for you whenever possible. I’m trying to put the deadlines ideas to work for myself. They totally challenge me, but it is using this general idea that got me to have moderate success over other stressors.
Good luck and God bless you,
Dawn
Dawn,
I am so deeply touched by this and appreciate what you shared. I shall definitely try it. I am working on ideas to re-open my etsy shop but I am just going to work on things for awhile and see how I do so I don’t have panic over deadlines. If I can get several things together and up I will work steadily at it even if slowly. These kind of techniques you offer are a godsend to me now.
Bless you, and may you gently find your way as well…
Maitri
Thank you for saying things I can’t seem to express. Thank you for the hope.