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.
11 years ago
October 27, 2007
We got married
Still a few years shy of 30 years old
We thought we had it all figured out
How little we knew
We had yet to learn a lot
To experience so so much
We thought we knew it all
Life, predictably knew better
It was never perfect
It was occasionally heartbreaking
It was often difficult
It was filled with laughter
It was sometimes chaotic
It was sprinkled with passion
It was usually me needing help
It was intermittently explosive
It was frequently unexpected
And it was always…
Throw back 11 years ago
I was thinking how these last few weeks (months?) have consisted of me trying not to feel sorry for myself
Yet I have been failing terribly at that
Then I got a call from a former client
Who had been out of touch for a long while and had me very worried for his well-being and safety
He’s doing great and is being taken care of for the first time in a long while
Which he deserves
He sounded so…healthy
You’re probably thinking ‘how can she tell that via phone?’
After spending inordinate amounts of time with my clients
I know them like the backs of my hands
I know their painful stories as much as I can recollect my own
I cherish their achievements probably more than I do my own
And I can tell when they’ve changed
So seldom do we hear about change for the better
But this is one of those stories
Gone was that drugged-out-to-escape-reality voice
Absent was that voice that carried so much self deprecation and sadness
I heard notes of pride, happiness and the thrill of looking forward to a promising future
All the things we hope that s young person can feel
I hung up with him, feeling lighter than I have in a long while
It got me to thinking why these last few months, out of all my 36 years, have been so difficult
So full of me trying and failing to not feel sorry for myself
Full of heartache and sadness
I stumbled into realizing that I feel lost
Feeling lost looks a lot like not knowing what your place is in the world, in your family, in your career and etc
The opposite of lost is of course ‘found’
Which is defined as:
‘to discover, especially where a thing or person is, either unexpectedly or by searching’
So that brings me to this…
Do you believe we all have a purpose?
And what is purpose anyway?
It is defined as:
‘the reason for which something is done or created or for which something exists.’
So my question really is, what are the reasons each of us are here?
I don’t think of this in terms of fantastic elements like destiny or fate
More so as each of us has the power within ourselves to reach our full potential
Which in turn then meets a ‘need’
This therein becomes our purpose
However, we often fall short of reaching our full potential
Which could be a result of a myriad of reasons (none of which are pertinent right now)
Over the last several months I have learned that I am a person who needs to have a purpose
In order to feel happy
It’s just the way it is
I can’t exist in life in any less of a way
Maybe it would make my life easier if I could
In fact, I’m sure of it
But nobody ever said it would be easy, right?
I’m pretty sure that me reaching my full potential has to do with helping others
Through sharing my experiences
The method isn’t important at this moment
I guess what is important right now
Is that I need to figure out what will allow me to feel like I’m fulfilling my purpose in life
While accepting that I do obviously have some limitations
Because at the end of the day
I just need to feel like all of this
All of the pain, sadness, difficulties
All of it
Wasn’t for nothing
Thanks to the lovely Alyssa for her nomination. She has similar struggles as I do but yet seems to handle the challenges with a grace most could only dream to possess. Read more at Alyssa’s blog
I imagine anyone who knows me knows how much I love words, lyrics, poems, books etc and I could seriously cover my entire body in the quotes that have made me feel something and not regret one line.
My first quote is attributed to Robert Frost.
Excuse the bubble bath on the last word. 😬
What I love about this quote is that it says so much without revealing a single thing. You can feel how much the author has been through. How much life has thrown at him. And that at the end of the day, the thing you can really take away from life’s alleged lessons, is that it continues. The world keeps spinning, people keep moving. There’s something so comforting in that knowledge.
I’d like to nominate the following three bloggers to take part in the quote challenge:
Steve who motivates and inspires me to continue to write. He’s even written a book! Check out Steve’s blog
Second blogger nomination is Caz. Caz is supportive, encouraging and knows too well the struggles of a warrior. She writes about real life. Read her blog at Caz’s blog
Last but certainly not least is Jay-lyn, whose writing conjures up powerful images and is a fellow warr;or. Read her words at Jay-lyn’s blog.
Email from employer:
Your email does not address the essential point of my February 22 email to you, which was a request for medical information. I believe my email to you was quite clear in advising you that BLANK requires medical information from your physician, not only so we can determine whether BLANK can take any steps to accommodate your situation, but also because BLANK requires the medical information so that we can understand whether you are going to be capable of regular full-time attendance in the future. Your email states that you have not requested an accommodation. Nevertheless, and even in the absence of a formal request for accommodation from you, BLANK has a duty to accommodate any employee with a disability. We are trying to do so, and that is one of the reasons we are requesting medical information, along with a secondary reason for the medical information, so that we can assess our ability to adequately staff the Section 23 program and meet our program obligations.
Whether you have specifically and formally requested an accommodation from BLANK or not , the fact remains that BLANK is entitled to have medical information from you to justify your pattern of absence from work. Furthermore, while you have not formally requested an accommodation, you have done so indirectly by , in essence, requesting that you be allowed to continue to maintain your full time position, when you have a two year pattern of less than regular full time attendance .
As I mentioned in my February 22, 2018 email to you, we acknowledge that we did receive a medical note from Dr. dated February 8, 2018. However, as I mentioned previously, it appears from His medical note that Dr. may not be aware of the extent and frequency of your absences.
It’s is BLANK view that Dr. has not correctly characterized your current ability for full-time work. Dr. states that, generally, you are capable of full-time work with regular duties. However, your attendance record has not demonstrated this. Instead, over the past two years and two months, you have been capable of only irregular attendance, working an average of four days per week. Full-time work is five days per week and your attendance record demonstrates that you have not been capable of full-time work. As mentioned above, we do understand as advised by you, this is due to your medical condition. Your doctor’s opinion that you are generally capable of full-time work is not consistent with your pattern of absence.
In any event, the medical you provided dated February 8, 2018 does not provide BLANK with sufficient information for us to assess whether you will be capable of regular full time attendance in the future, and what your prognosis might be. Therefore, we request that you return to Dr. for a follow up appointment and specifically obtain the following medical information in written form from Dr. and then provide it to us:
1. A description of any medical, physical or other restrictions which may result from your medical condition and which may impact on your ability to perform your job duties and attend work on a regular, full-time basis, meaning five days per week. (Please note that we are not asking for any diagnosis or details of your medical condition, other than as they relate to any restrictions it may have on your ability to perform your workplace duties and ability to attend work regularly.);
2. A prognosis from your physician as to the likelihood that your medical condition might improve, such that any current restrictions and/or modifications might not be required in the future, or may be required to a lesser degree;
3. A prognosis from your physician as to the likelihood of your ability to achieve regular, full-time workplace attendance (i.e. five days per week as opposed to your current average of four days per week) in the reasonably foreseeable future;
4. Alternatively, if your physician determines that it is unlikely that you will be able to achieve regular, full-time attendance in the reasonably foreseeable future, whether it is also likely that your attendance will tend to decline in the reasonably foreseeable future; and
5. Any suggested accommodations or recommendations your doctor may have for BLANK to allow us to better accommodate your situation.
Angela, please note that we require the above information from your physician so that we may assess your workplace restrictions, needs and any requirements for accommodation, as well as our ability to ensure that we meet program needs, which are five days per week.”
You have stated that you are unclear about what BLANK is trying to achieve by highlighting your absences from two years ago.
Let me try to clarify . What we are trying to achieve is to obtain an understanding from your physician about your pattern of absences, and in particular we are trying to determine whether you will be capable of regular full-time attendance in the foreseeable future. That is why we have requested that you provide to your physician a copy of my February 22 email, so that your physician can answer the five questions BLANK has asked, as well as complete the form we have delivered to you. To repeat, BLANK requires this medical information from your doctor so that we can understand any accommodation issues or obligations BLANK may have toward you, AND ALSO so that we may understand whether you will be capable of regular full-time attendance in the foreseeable future. BLANK is entitled to that information and you are contractually obligated to provide it.
We have referred to your absence pattern for the past two years because it is a critical fact in our decision-making processes. Review of your attendance records, has identified that over the past two years, you have been unable to attend work 5 days a week consistently. BLANK has a right to expect that its employees attend work on a full-time basis regularly. Your record demonstrates that you have been unable to do so, and you are therefore not in compliance with your contractual employment obligations. As I mentioned in my last email, however, BLANK does understand that you have a medical condition which is preventing you from regular full-time attendance, as you identified in our meeting in January 2018. We are not faulting you. Nevertheless, BLANK is entitled to know whether this absence pattern is going to continue, or whether it will improve or get worse. We need this medical information to assess our staffing and meet our program needs. Currently, your attendance pattern is negatively impacting AYSP’s ability to meet its program requirements.
After we receive the requested information from your physician, BLANK will review it, and BLANK will then be in a better position to understand the likelihood that you will be capable of regular full-time attendance in the foreseeable future, or not, and we will also be in a better position to assess our staffing needs in order to meet our program requirements.
I requested in my February 22 email, further medical, which you have yet to provide. Please re-attend at your physician as soon as possible and obtain in written form, the medical information we have requested. Please advise me when your next scheduled medical appointment is so that I may have an understanding of when BLANK can expect to receive the requested medical information.
I trust that the above information, together with my email to you of February 22, 2018, have clarified BLANK position, and has explained why we are requesting medical information. We look forward to receiving that medical information as soon as possible.
Finally, we are sorry that you are feeling stressed. However, I can assure you that we have no intention to pressure or discriminate against or harass you. We do not feel it is pressure, discrimination or harassment to require that you provide us with medical information that you have a contractual obligation to provide.
That last part just feels like a slap in the face.
You have a light within you
That’s brilliant and warm
Just enough to make it cozy
Your light makes people want to be near you
To bask and enjoy its warmth
It makes me wish for things that aren’t meant for people like me
I used to wish you could take my darkness away and change me
But now I understand so much better
You can’t carry my darkness
It’s mine for a reason
I can still see your brilliant light through my darkness
And that is enough for me
And that means more to me than you can ever know
Happy birthday to the guy that makes my life brighter ❤️
I feel defeated
It was time to go for my monthly blood test
And so I did
Without any problems
I waved bye to my favourite lab technician
She remembered to get the butterfly to take blood from my hand
She rarely leaves bruises
She remembers I need to lie down during the process
I forgot her name and called her by the wrong name
I hope she knows that her kindness has made a difference to me
Even though I still can’t remember her fucking name for the life of me
I walked out the doors and into the car where Joey was waiting
I sipped water
Like I always need to do
But always seem to forget to grab a bottle from home
You probably wouldn’t understand
It’s an anxiety thing
He asked how it went
Looking at the cotton ball taped hand
Proof that I’d succeeded
And then I felt the dam break inside of me
I started crying
Just an overwhelming feeling of discouragement and sadness came over me
Resulting in tears down my face
I kept thinking
Maybe I said it aloud too
I don’t remember
I can’t do this for another five years
I just can’t
Will this month be the one where I learn I have some type of cancer?
Will next months test reveal that I have something wrong with my kidneys?
Everyone reassured me the monthly blood tests would get easier
But I’m like 8 months in
And I dread everything about this day and the week afterwards
Before you rush to point it out
Yes of course I’m proud that I’ve been able to do it
Yes of course I know that it could be worse
Yes of course I know that I signed up for this
Yes yes yes
There’s nothing you can say that I don’t already know
That I don’t repeat to myself a million times a day
That I don’t mutter under my breath whenever these fears creep in
That just doesn’t make me feel any better
Here I am
8 months in
I’m still alive
But that voice in my head
Just keeps talking
Keeps taunting me
Keeps haunting me
Keeps reminding me
This is your life now
The blood tests, the results page, the friendly lab techs whose names I don’t remember, the urine containers that I struggle to pee in, the anxiety
And the fear
That what if
In the end
None of it was worth it…?