Monthly Archives: August 2014

Thoughts on being disabled… and a kinship with Robin William’s despair

Warrior Dash 2012 scooter view

Here’s how I run/hike/walk/jog these days. Have battery – will travel! I don’t normally eat potato chips but I didn’t have the energy to prepare lunch before I left. Potatoes are gluten free! They were also all I could find at the gas station convenience store.

Those of you who have been following my blog already know I’ve been struggling with physical issues for awhile now. I have a very rare degenerative muscle disease called Inclusion Body Miositis Mito. Today’s sharing is not to make you feel sorry for me. But to encourage all of you who are dealing with hopelessness and despair, no matter the reason, to reach out to someone and not let the darkness win. And keep reaching out and fighting until the darkness passes. For Robin Williams, the darkness did win. Obviously, you don’t have to be physically disabled to feel that sense of despair. But this is the story of how it is for me.

What my current life is like:
When I move my muscles become exhausted and just quit working. I fall down, can’t make it up even a small curb without difficulty and my chest muscles can’t expand/contract rapidly enough to accommodate even a short, brisk walk. The result is that they just freeze. I start gasping for air and black out. Simple activities such as hand washing dishes, standing in line at a public counter, pushing a grocery cart, etc. have left me in an embarrassed heap on the floor desperately gasping for breath and fighting blackout. I have to convince witnesses not to call 911 because there is nothing the emergency room can do for me. Been there – done that; about ten times until we all realized it was pointless and very expensive. The weird thing is that in a non-fatigued state I appear as healthy as anybody. I just don’t stay in a non-fatigued state for very long if I’m up and about.

I loved cooking fresh, healthy, gourmet meals but most days I can only manage to eat whatever is readily available.
I miss cooking every day.
I miss hiking.
I miss dancing.
I miss walking on the beach for as along I want to!
I miss the community of my co-workers.
I miss just being able to run out the door on a whim without thinking, “is the battery on my scooter charged?”
“do I have my cane?”
“will there be steps?”
“If I engage in this activity today, how many days of total bed rest do I have to allow myself to recover?”
“Do I have enough stamina today to complete the activity without collapsing?”

So that’s the upshot of my physical condition. Now, those who know me know that I am a very positive person. I work very hard to focus on the things I can do rather than what I can’t. I aspire to be a spiritual healer, encouraging and inspiring as many people as I can to learn how to rejoice in themselves and their life no matter their circumstances. I am just as passionate about sharing my gifts and talents in the world to the best of my ability today as I was pre-symptom.

I used to think that writing this blog when I have enough energy to be creative, which is not that often, and officiating at two weddings a month, facilitating/attending my spiritual support groups, etc. was enough activity to give me that sense of accomplishment and achievement that I find so vital to my emotional well-being. But after a week-long camping trip with friends at the coast showed me how much of the simple activities I enjoyed so much I’ve had to give up, I find myself fighting hopelessness and despair.

An acquaintance of mine once posted a saying on her FB page. It read something like, “I’m sure glad I work full time so you can be on disability and show up at the convenience store in your pajamas.” Wow – that was a punch in the gut.  I wish I could work – but it’s difficult to explain to your boss that rest is absolutely mandatory and I can’t tell from one day to the next if I have enough stamina to last even for four hours, let alone eight. In a fatigued state, I can’t even read/write intelligently. My brain shuts down, too. I spend more days in bed than I do out of it. My wardrobe went from fun, business-casual to the pajamas that statement expressed as so offensive. I don’t go out in public in them, but if I had to have painkillers and did not have the energy to get dressed, I would. The day after Robin Williams died, I shared this post on my wall:

Photo: I shared earlier, but Robin Williams' passing is cause for a reshare of this famous quote. In his memory may we all be kinder to each other and work to make people smile and feel joyful. He did that for us.

Please read that again and take it in. It’s important.

Today, in the aftermath of Robin Williams’ suicide, I recognize his motivation and desire to just be done with it all. I feel hopeless despair because there is no treatment and no cure for this degenerative muscle disease.

I feel tired – too tired to maintain my positive attitude. Too tired to create. Too tired to manage life. Too tired to write – except this blurb on my thoughts and feelings about being disabled and wanting to give up.
I feel limited, trapped and I HATE IT!

But, I am too stubborn to give up. I know when I need help and I am reaching for it. I know that I will find the sunshine behind my dark clouds again. I am no stranger to handling difficult and dark feelings. Oddly, the key is to allow yourself to fully feel them. It’s about going through them, not avoiding them. When you can’t do that alone, it’s important to find a professional who will help you. I’ve done that.

I will not let despair win. And I know that I am not the only one fighting for life right now. You don’t have to be disabled to feel trapped, isolated and unable to cope.

Please, don’t give up. Let’s vow to help each other remember the sunshine is always behind the clouds no matter how dark and stormy they get. If you have a rare medical condition or fight feelings of hopelessness and despair; first, I do encourage you to reach out for professional help. Second, will you please post a comment on your favorite coping skill? I’d love to read them.

Mine is to tell my mind to shut up and shift it to thinking of all of the things I’m grateful for. And right now, it’s to be honest about how I am feeling. I’m ok right now with owning that I feel hopeless, in despair and not sure what the point is to my life right now. And I can do that because I know that I have the help of a trained professional as my advocate. I have friends who love me, family who loves and supports me. I totally count my blessings. You don’t need strong legs for that! And for now, that’s enough of a reason to wake up tomorrow.

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