At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave.
Invisible illness doesn’t just mean you have an illness that can’t be seen, it means friends disappear and then you do..
Sitting on my favorite bench on the back shore letting the ocean get inside me.. Taking responsibility. Taking strength. Early on I stopped blaming everyone and everything for my illnesses including myself. I realized looking inward, being curious, and taking baby steps would be a surer and safer path. There are so many who say they have answers or offer services to those desperate for help who have no resources. When I stepped away from all that my own confidence grew. I eat when I’m hungry. I rest when I’m tired. I meditate and medicate when my mind races. I use ice or heat when there is pain. When I have energy I do stuff, when I don’t I don’t. For me simple is best.
My favorite tombstone now is:
She did what she could.
When I’m on the phone I walk around my apartment. My slider was open. I saw my sweet neighbor down below pushing her cart through the parking lot. I called her name with a hi even though I was still on the phone. She looked up at me big eyed and excited. She shared the treasures she found at a yard sale close by. It’s something she loves and I’m glad for her. I, on the other hand, have not a yard sale bone in my body but I do recognize passion and that enlivens me. I’m not sure what flavor illness she has. Some call her crazy. I recognize the inside of her, the spirit, and that I love. And my friend on the phone, he was happy too..
I am aware that not everyone is happy with my writing about illness and often I am tempted to clam up. Then another private message arrives reminding me how my candid words help. I feel honored and inspired. I guess I won’t stop. Not yet. Not today.
When I am feeling sad or ill or less than the very last thing I need from you is ‘cheer up’ or ‘no you’re not’ or ‘look at all you have’ or ‘go for a walk’ or ‘summer’s coming, you’ll feel better then.’ That makes me shrivel and curl up into a ball, hiding under the covers, after of course I get utterly pissed off at the insulting way you have dismissed me, my feelings and my experiences. This is not empathy. And I will not trust you as a friend. Why not let me be who I am and feel what I feel and listen and maybe even hold my hand?
This may be hard for you to hear. This is the way it’s always been. Change is not easy. I had to get my brave on to speak out. Now it’s time for you to get your brave on..
The spiritual side of illness. I’m well aware of how our society touts the American Dream. The focus on goals, success, and being the best or at the very least being normal. For those of us weakened by illness there is little room made, in fact, we stay home. Our culture values ‘getting’ healed, ‘getting’ fixed as a measure of our character, morality, and spirituality. One of my close friends once said, ‘If you were spiritual enough, you’d be well by now.’ Those words slayed me like a machete.
The truth is we navigate dangerous waters. We battle dragons inside and out. Chronic illness is endless. That means n-e-v-e-r ending. The courage it takes to take a shower is an Olympic event. Just rising in the morning can be an Everest. All this is done in secret behind closed doors. No accolades. No reward.
For me living with illness is the truest life I have ever known. It teaches me compassion, kindness and patience daily. It teaches me to be alive and aware and flow to the nuances that my ‘limitations’ bring. I remember who I was. I remember how I was. I have grown. I love myself now.
I wouldn’t trade my life, its gifts, and its sheer honesty for anything.
Many times when I meditate the garbage truck comes. It parks right below my window and takes the trash and recyclables. It is loud and clanky. This need not be a problem. I continue on with my practice. I am grateful that my house and mind aren’t overflowing with things that no longer serve me. I appreciate the emptiness that is left behind ~ I have not always been this appreciative. Now more often than not, I giggle.
I have bipolar. What’s your excuse?
Wellness in a nutshell. Many things come with owner manuals, except us. Whether we are sleek fast spaceships or rusty rickety grounded ones like me, having some kind of guide helps us navigate. Marty and I created a personal care manual, a wellness toolbox, and a travel plan to do just that. They are living documents that help keep me well.
Input. Output. Rest. Most obviously, these words are a way of looking at diet, exercise, sleep. But life provides a wide range of choices that either feeds us and allows us to give, or depletes us.
Sometimes I need a back to basics repertoire and sometimes I can be more expansive. My illnesses give me continuous feedback as to what I can or cannot do.
This need not be a problem. They are simply asking me to care. Sometimes extreme self care is needed. I get to listen or not listen. How many of us listen to what our bodies and illnesses are saying? Do we respond in kindness?
Tweaking and tinkering can be a joy or a chore. I choose joy (mostly). There is no one big fix. Most folks want that but life is not that way. Resilience works best. Tease out your ill parts, accept them, reside in that well part of you. Deep well.
I am the expert of me. When I allow my own wisdom to bubble up rather than frantically running to others to fix me, I can access a space that holds my highest good. And that quiet wisdom can guide me further inside or to fitting healers.
Some colors in my palette:
- Medication Meditation
- Nourishment Exercise
- Hygiene Heat Ice Decluttering
- DBT CBT ACT EFT NVC
- Mindfulness Guided Imagery TED Talks
- Acupuncture Chiropractic Massage
- Movie therapy Brave Heart Gilmore Girls
- Art Music Theater Nature Connection
When I am unsure what to do or what not to do I use my 51% rule. I check in and feel what percentage I am on board with something. If it’s not at least 51% it is not happening. I also use my coin toss app or maybe even use real ones.
Wellness is not about getting fixed. It’s about resonance. It’s about being choiceful. It’s about baby steps. And it’s about life being custom made.
What’s in your nutshell?
Words matter. Say what you mean. Mean what you say. Communication is difficult enough without choosing words unwisely. The way in which they are said, intent and delivery, is another critical component. Interpretation and perspective may well be the listener’s responsibility however kindness (or not) reflects thoughtfulness (or not) on behalf of the speaker. Words are the window to thoughts, feelings, and even the soul. Let your mouth be a gatekeeper. Spoken or unspoken.
I learned a few things from a friend and a counselor. One is: Feelings aren’t right or wrong, they just are. Another: All feelings can be funneled into four flavors - mad, glad, sad, and afraid. This makes it easier for me to decipher the kaleidoscope of feelings that can clobber me at any time. Simple works best.
Since bipolar is a mood disorder often words pierce in ways that they would not otherwise. Balancing emotions becomes an impossible feat. Skewed perception goes even more haywire. The actual words are the only measure I can attempt to wrap my mind around, so delivery, whether sloppy or careful, matters greatly. My emotions can easily spin out of control, making sound thinking unfathomable. I can easily dive to depression or fly to mania. This is not something I can control.
Thankfully I have a few chosen friends who support me to process in a life enhancing way.
My responsibility and challenge is to eliminate judgmental, devaluing, debilitating words from my vocabulary in my own head. Examples of these are should, shouldn’t, have to, need to, supposed to, try, sorry, worry, and a host of others that are sticky and that I no longer even remember from disuse. I literally clip my lip and I ask others to do the same. For me it is a matter of life and death.
There are other ways and words that can be used that are more powerful and considerate. Here’s an example: “I’m sorry I’m late” can be transformed into “Thank you so much for your patience.” For me this gives two completely different visceral responses. One I feel deflated and less than, both parties lose. The other feels uplifting, connecting and affirming. “I worry” can be swapped with “I care.”
I spent one whole year saying No to everything. When invited I would say, “No thank you, but if I change my mind I’ll let you know.” Doing this taught me what my Yes’s are. It was life changing.
Wisdom is key.
It took quite some courage for me to write my bits. When I first became ill I tried to hide, while desperately pursuing healing and fixing. I tried clawing my way back to my former self. I was terrified of how people would treat me and treat me they did. All of them left. I was alone.
I went to a cabin in the Maine woods either to die or to live. I’m still not sure which. I was alone.
I moved to an island somewhat restored only to have the most horrific mania and subsequent depression. Again everyone left. I was alone.
I met my best friend then. In the midst of my hell. And he dared to care for me. It didn’t matter that we lived 3000 miles apart. It didn’t matter that I was scraping the sky or down and dirty or that I was moment to moment suicidal. None of that mattered. He looked in my soul and saw me. His name is Marty.
From that point on, step by step, word by word, we walked together, no matter the weather. And little by little I found my voice. Only from being able to lean on him have I been able to find my strength, my way, my life. We wrote a book.
‘Here’s my bit’ came from wanting to make a difference, wanting to make invisible illness visible, to bring it into the light of day. All I needed was a little bit of courage and commitment. Change only happens when something changes. That change was me.
Thank you all for joining me on this journey..
every little bit counts.. ~fjh