I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.
Some days my damaged eyes feel as weary as my burdened soul
Some days it feels like I carry the world on shoulders that are tensed with anxious thinking
Some days the world feels as chaotic and unpredictable as the disease discarding lesions on my brain
Some days I feel so jittery that my nerves feel like they’re fraying and uncovering more than just damaged myelin
Some nights I lay awake not able to sleep even though my days are consumed by an overwhelming fatigue
Some nights it feels like electricity is coursing through my limbs and extremities
Some nights I feel like not waking up in the morning still wouldn’t be enough to get rid of all that’s wrong
Sometimes there are moments when I think that even a lifetime isn’t enough time
Time to shed all the broken and irreparable pieces of me
Time to start over
Time to begin again
Or maybe a lifetime is all it takes
To be gifted a new body and mind
And leave all that affliction behind
In the past
Where it belongs
Buried and covered
In someone else’s grave
I find myself thinking in terms of:
When I get better
When I get better, I’ll change my Paxil
When I get better, I won’t feel so down
When I get better, I’ll finish my degree
The list goes on and on
Sometimes it’s things exciting like travel
More often than not
It’s simple things
When I get better, I’ll go for walks with Joey and my dogs
It always ends with me waiting for a time when I’ll feel better
Always waiting for a time that may never come
Then I think to myself
What if this is as good as it gets?
And what if it is?
Does that mean I throw in the towel?
And then what?
So I started thinking tonight…
And bear with me
This is wild
What if I just stop waiting?
Dun dun dun
What if I stop waiting for a future that might never come?
What if I just start living like this is as good as its ever gonna get?
There is something so incredibly freeing about that
It’s difficult when the people around you encourage you to think of how much better things can get
As well intentioned as it is
It just doesn’t help
I’m so fucking sick and tired of waiting
I’m so tired of hoping
Fuck waiting and hoping and wishing
Maybe it’s time that I just start living
I mean…Yeah maybe things will get better
But I just don’t want to waste my time waiting for something that is only possible (What is possible )
I like the odds of probable (What is probable)
It is probable (because there is evidence to support it) that tomorrow I will wake up
And feel as shitty as I do right now
But instead of going back to bed and waiting for a better day
I’ll just keep going
I’ll step out into the world and I’ll still feel shitty
But at least I will have fucking done something
And maybe for this to stick
I’ll have to keep reminding myself every day
That my life deserves a fighting chance
That in order to really live
I need to remove both feet from inside of the grave
Any other way
And it’s just not probable
(This was from my MS support group I chaired last week)
“Fighting reality only creates suffering. While pain is inevitable in life, suffering is optional. “And suffering is what happens when we refuse to accept the pain in our lives,”
Close your eyes and think about being diagnosed with MS
Think about the difficulties you encountered
Think about the hurt, pain and suffering you’ve experienced because of it
Think about all the medications and treatments you’ve tried
Think about how many times you’ve gotten your hope up for some miracle cure only to be let down
Think about all the time you’ve been angry, depressed or lost because of having MS
Now open your eyes.
You still have MS
So does everyone else in this room
Nothing has changed
simply because you deny it exists.
It is still there, waiting for you to deal with it.
“When you open yourself up to accepting the present moment precisely as it is, with no judgments, you are free to look at all of those puzzle pieces of the present moment and start to piece them together. “
What if instead of having all of that, you simply decided to radically accept your reality that is having MS?
Acceptance isn’t giving up
It isn’t resigning yourself to the illness
It is simply accepting that whatever is happening is happening
Acceptance is about letting go of the person you thought you were and the life you thought you had and making the most of the one you actually have
Some helpful strategies to practice radical self acceptance:
Acknowledge and learn how to cope with negative thoughts and feelings
Rewrite your story
Find activities that you enjoy
Spend time with the people you love and that make you happy
I’m not even close to being there yet…but I want to be
I had a brief moment the other day
Where I felt like I was going to get answers and help
The solutions to persistent eye pain and nausea seemed just within my reach
I fell asleep last night feeling relieved and excited
About finally getting some help
I was almost giddy
If you can imagine that…
I woke up and got ready with my stomach in knots
I felt nervous and apprehensive
Unsure what to expect
See and herein lies the problem with hope
It hurts when it gets snuffed out like a candle
It hurts more than the very reason you needed hope
The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms
Without suggestion as to where to go from this point
I left the clinic
I came home
Closed the lights
Crawled into bed
Remembering why hope is a nothing more than a dangerous game of Russian roulette
And I’ve never liked the odds
Person with MS (now referred to as ‘MS’ says to their partner who does not have MS (now referred to as N/A) ‘You seem unhappy. I’ve been noticing it for awhile. It appears to me that when I flare up, you get very stressed become unhappy.’
N/A: ‘What? Me? No. Sure I worry but I’m not unhappy. It’s work and (insert other things like kids, money, etc).
MS: ‘really? It seems to have really started after my diagnosis.’
N/A: (immediately defensive)
MS: ‘I mean, I know I gave you an out after my diagnosis (out a term many MSers are familiar with) and you didn’t take it. But that’s the thing with MS sometimes it gets worse. And I know this hasn’t been easy for you.’
N/A: ‘Exactly. I don’t want to leave. Why are you even bringing this up?!’
MS: (annoyance increasing) ‘Look, can’t we just talk about this? I’m concerned about how this affects you and in turn me.’
N/A: ‘I deal with it okay? You don’t have to worry’
MS: ‘But that’s the thing, you’re not dealing with ‘it’. You’re snappy (insert other words like ‘cranky, pissy, never home, drinking too much and etc)
N/A: ‘Am I supposed to be happy with it?!’
MS: ‘Thats the thing though. You acting so unhappy about my illness makes me feel worse about it. It makes me feel like a burden and I feel like that’s making you miserable. And how can I work on accepting my illness when you’re so miserable about it?’
Thats the thing
The one at the end of the day
That keeps you up
Going to groups and learning about how to accept a crazy fucked up illness like MS
And not getting sucked under by the sadness and fear that comes along with it
But it is so hard to accept something so life changing
For the MSer
And for the people around said person
There’s such a strong part of me that does not want to accept having MS
I don’t want it to be a part of me, my life or my health for that matter
It seems self defeating to accept it
But it’s not
It’s the opposite
It’s like a coming to terms with MS
A mutual agreement if you will
MS says to you ‘I’m sticking around. I’m moody and temperamental and I like to take over every aspect of your life.’
You respond ‘I know you’re here to stay, and I understand the moodiness…but I can’t let you take over my entire life’
MS says ‘Why not? I have already.’
You answer ‘I’m taking parts of my life back from you. I’ll still have you in my life but you just can’t have it all. So let’s agree that you’ll stick around and I won’t fight you anymore. But you have to understand that you’re only one piece of my life. A big piece, yes. But I just can’t let you take over everything.’
MS ‘What’s the harm in that anyway?’
You say ‘Because if I let you, you’d own me and I would disappear.’
And the curtains start to close
And you and MS walk to different stage exits
The audience knows it’s not goodbye
But rather just a little breathing room
And there’s closure in that
I went to my first MS support group on Friday
It took me five years after being diagnosed to take the plunge
I was always hesitant to go
I was afraid of what my future might look like
It was a small group of 8 people
With different types of MS and in different stages of the disease
3 in the group had wheelchairs
A few had canes
Everyone welcomed me right away
The topic was ‘Why I’m glad I have MS’
Ugh this is gonna be brutal
We went around the table
Many described how having MS forced them to slow down
To reevaluate their life and priorities
To focus on the important and forget the small stuff
No one ignored the hard days
One described it as ‘the rabbit hole’
And seeing it open up
But not plunging into the darkness
They talked about fear, sadness,pain, love and hope
I sat quietly until my turn
And I spoke honestly
I told them I couldn’t find anything to feel glad of
And I couldn’t imagine a time when I would
But I was grateful for the resource of a group such as theirs
I explained to them how I thought I’d finally accepted having MS
Only to realize that I only was acknowledging having it
Acceptance was still a long way off
It still is
I talked about how I was going through a particularly dark time
I told them I was having difficulty reconciling my current life with what I thought my life would look like at 36 years old
I looked around
They were nodding their heads
I didn’t see the same sympathy that I see so often in my friends and families eyes
I saw real understanding
The kind that only someone who’s been there can provide
And I realized it’s been five long years since diagnosis and I’ve been doing this all wrong
I’d chosen to go at this alone
Seeing other 36 year olds living their life
Other 36 years who don’t have MS
And comparing my life to theirs
And coming up short every single time
The people in this group weren’t sad and pathetic
They were living their lives
Enjoying their lives
Maybe they adapted their lives to work around having MS
Maybe their life plans changed
But they didn’t stop living
That’s true acceptance
After I left
I felt a sense of relief
At having done something I’d put off for so long
I also felt hopeful
For the first time in a very long time
Not hopeful for a cure
Or that tomorrow I’d wake up without MS
But that one day I too would be able to finally accept that I have MS
With all that it includes and with wherever it might lead me
And I’ll be okay
I’m not there
Not even close
But I want to be…