Tag Archives: hope

Journey from Hopeless to Hope

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At times, I feel hopeless. Does acknowledging disappointment mean that I’ve given up?  Does it mean I’m a realist or a defeatist? When dealing with life as it is presented, is there a recommended ratio of hope to realism? Of optimism to acceptance? For me, I’ve found that changing expectations allows for an increase in hope that leads in new and realistic directions.

Hope is a feeling of expectation and desire for something to happen. It can be a short term hope – “I hope the weather is good,” or a long term hope – “I hope my chronic pain goes away.” Hope for things we know are not possible in this broken world can bring depression, which brings isolation and fatigue. It leads to hopelessness.

To be hopeless is to feel despair and disappointment that something hasn’t happened: an emotion frequently labeled pessimistic or defeatist. When our bodies fail, should we hope?  Or cope? I hate the word cope. I know that hating a simple word is rather severe.  However, I’ve heard the word cope too many times while living with head pain. I cheerfully and kiddingly correct anyone using the word cope by advising that adapting is the preferred word – for me. Coping is treading water while adapting is finding a way to move forward.

Futile is a word that pops up when I find myself hoping for things that are not probable. Yes, I know that God is capable of touching and healing. However, He is also capable of nurturing a deeper faith as we learn to accept and not fight.  Sometimes, I feel overwhelmed and torn between deliberate optimism and honest feelings that demand to be acknowledged.  I don’t know how to reconcile my public mask of “positive, strong, and resilient; pleasant, miserable person” with one who opens up vulnerably to connect with the people in my life.  I worry I’ll make people uncomfortable with something they can’t fix. It can’t be talked through.  My head pain can’t be overcome.  It demands perseverance when I don’t really want to be a strong, persevering person. What’s important to share?  What is rambling? I’ve always had a desire to be concise – fix it and move on. However, life has brought me unfixable challenges following brain surgery. At least so far. . .

At times, I can’t breathe.  I feel stifled by life.  I start in one direction and stall.  I start in another direction but stall again. Feeling stuck and immobilized, I can’t move.  Pain.  Constant pain.  Recurring pain.  Exhausting pain.  Inescapable pain.  Pain that doctors have given up on but I live with every day, in every moment.

Given the hopelessness and futility of wishing for life to be different, I still feel surges of hope urging me forward.  I see little – and big – miracles in life that bring joy. I experience things that make me want to get up for another day.

Despite being deaf in one ear, the other one delights in the song of my grandsons’ laughter. They’re just too darn cute.  To hear them say “Grandma” melts my heart, and I have to suppress laughter at their young declarations of independence, “Don’t want to!”.

Although my vision is far from perfect due to genetically poor vision, a dry eye from facial paralysis and skewed vision from nerve damage, I love to take in our world’s vast horizon with spectacular sunrises and sunsets. I see beauty in nature that allows me to forget my head pain for a moment. The world that challenges me also calms me.

I love the feel of working with melted wax to create encaustic paintings. I lose myself as I focus on getting a detail right. I smell the heated wax and feel stickiness as the wax cools and takes shape.  Sometimes smooth, and other times textured by objects that I embed in the wax – all to create unique pictures.

Writing provides a way to express what I’m living in a way that connects with other hurting people. When I take a break from writing, which I need to do at times, I always feel liberated when words start to flow again.  I find myself smiling, even if crooked, at the feedback that I helped even one person’s day.

Each of these respite diverts my focus bringing me back to experiencing joy. I feel gently led from hopelessness to hope.  I become filled with hope for living and finding a way through the brambles of life.

Disability and the Stages of Grief

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stones in the sand

I’ve talked to several people who have gone from an active full time career/life to long term disability due to acoustic neuroma or other medical reasons. Through those discussions, I’ve noticed a consistent pattern. It is grief – and I’ll get to that in a minute.

Becoming fully disabled feels like giving up. It feels like failure. We accept too much responsibility and blame our “selves” for physical weakness and brokenness.

I am here to tell you that disability is not for the weak. Strength is required for acknowledgement of real limitations and to speak up for what we know we need. Perseverance is called upon to fight a tougher battle than “before.” It takes tenacity to continue to fight for goodness in life and a grateful attitude when we face long term adversity.

Disability:

  • Is not death. Disability frequently stirs a desire for ability, life, and not giving up.
  • Is a process that doesn’t end often enough with a return to ability.
  • Requires bouncing between pushing our bodies to function as fully as possible while documenting our physical limitations.
  • Brings a new appreciation for life and relationships.

Living life with a disability brings a continuing cycle of grief. Everyone has a different timetable. The actual disability and grief are not cookie-cutter experiences but bond those who live it.  Each stage takes varying lengths of time as it is repeated in various forms.

Triggers can quickly springboard us from progressing to stepping back into grief. Perhaps we inadvertently are reminded of something we used to love to do that is no longer possible. Other times we may get a glimpse, through memories, how relationships have been affected by changes in health.

I decided to “map” the well documented generic grief process to disability, and here’s my take:

 Stage One: Denial and Isolation, or “this is not happening”

  • “I just need a little more time, and I’ll beat this.  Enough already – please.”
  • “I’m embarrassed and really can’t face the world. How will I ever be in a social setting?”
  • “If I just think good thoughts a little harder my body will heal.”

Stage Two: Anger, or “stomping my foot”

  • “This is not fair!  I don’t deserve this. Stupid (fill in the blank)”
  • “I’m not comfortable with vulnerability.  I do not want to ask anyone for help!”
  • “The world is continuing without me in my prior role. I wasn’t indispensable. Really?”

Stage Three: Bargaining, or as I affectionately call it – “If Only” stage

  • “If only I ate better, my body would recover.”
  • “If only there was something I could do to make this go away.”
  • “It must be my fault, and I will be stronger from now on.”
  • “The medical world can cure anything, can’t they?  Isn’t it a science that understands everything about our bodies? If only I could find a doctor who understood my case.”

Stage Four: Depression, or “I’ll just be under this rock over here if you need me, but I’m guessing you won’t”

  • “I’m exhausted. I’ve tried everything. It’s a lost cause. Why even try to be happy?”
  • “Why continue to look for answers in the medical community to mitigate pain, tinnitus, or limitations.”

Stage Five: Acceptance, or “inhale, exhale”

  • Life sucks but I have things to do. I’ll manage my disability so that I am still aware of the joys of life.
  • “I love life and will squeeze every bit out of it that I can. I will pay to play.”

As time goes on, we appreciate being in the acceptance phase and learn to recognize it.  We’ve learned not to just cope by treading water but have adapted to living life beyond breathing.  We will have triggers that pull us back into earlier stages of the grieving process but learn to claw back to acceptance again — as quickly as we can

Disability is not giving up but the beginning of a new journey.