Christmas Marathon Phone Meetings for Chronic Illness and Pain Sufferers

You may recall my time spent with June’s 12-12-12 project member Dale Lehn

Project member Dale

“I am a T-5 paraplegic and have been in a wheelchair since 2005. My paralysis is not due to an accident but from having a tumor growing inside my spinal cord.

“I soon found myself withdrawing from my family and friends.

The doctors said the only medication they could prescribe to “get rid of the pain” were narcotics based drugs. I wasn’t willing to go down this path. Over the course of several years, along with another man who had a similar issue with chronic pain we developed a way of living that gave us the tools to live a full and productive life even with chronic pain.”

Helping people learn to overcome the emotional debilitation and isolation of chronic pain and chronic illness is the fundamental work Chronic Pain Anonymous is doing.

Chronic Pain Anonymous logo

I have personally attended a few phone meetings through Chronic Pain Anonymous and found it extremely comforting. You become part of a fellowship that is supportive and most importantly understanding.

As I was going through my emails today, I came across the title… “Special Announcement – 4th Holiday Meeting

I opened the email to find a list of phone meetings that are going to be held on Christmas Day! A Christmas Marathon of Phone Meetings. A brilliant idea!

“Many people with chronic pain and chronic illness are home bound, either by choice or by medical need. During the holidays it is valuable for us to have an outlet to speak with others, especially those who understand what it is like to live with chronic illness or chronic pain.”

Isn’t that the truth! I spend the majority of my time at home. This is not by choice, but based on the limitations placed on me due to my medical condition. Lord willing, I am going to have the luxury of attending two holiday gatherings on Christmas Day. However, what if lived alone, a few hours away from my family? What if I lived by myself in another state? Most likely I would be spending the holidays alone!

I know first hand what living with a chronic illness can do to your mental health. I sympathize with how isolating a life of chronic illness creates. That is why I believe what Dale and Chronic Pain Anonymous are doing with the Christmas Marathon Phone Meetings is a blessing.

So here are the details of the email I received…

Holiday Phone Marathon

 Lutherville, MD… Chronic Pain Anonymous has announced a special phone marathon to take place on Christmas Day, December 25, 2012.

Here is the schedule for the day:

• The first meeting will begin at 1 PM EST to 2 PM EST. Fellowship to follow.

• Our regular Meeting is from 3 PM to 4 PM EST. Fellowship to follow

• Next meeting time will begin 5 PM to 6 PM EST. Fellowship to follow

• Last meeting time will begin 7 PM to 8 PM EST. Fellowship to follow

As we will know, many people with chronic pain and chronic illness are homebound. Either we are isolated by choice or by medical needs. During holidays it is valuable for us to have an outlet to speak with others, especially ones who understand what it is like to have our illness of chronic pain. The number to call is (213) 342-3090 and the access code is 1952435.

CPA has five regularly scheduled phone meetings, two Google Group internet meetings and 13 face-to-face meetings taking place in Canada and the United States. All current meetings can be found on our website.

Chronic Pain Anonymous is a Twelve Step fellowship of men and women who share their experience, strength and hope with each other so that they may solve their common problem and to help others recover from the disabling effects of chronic pain and chronic illness. The only requirement for membership in CPA is a desire to recover from the emotional, physical, and spiritual debilitation of chronic pain and chronic illness and a willingness to help others to do the same.

For more information, you are invited to learn about the program on the website: http://www.chronicpainanonymous.org. If you have any questions, contact Dale L. at dale@chronicpainanonymous.org or info@chronicpainanonymous.org

Much love,
Marissa

PS: Please promise me you will find fellowship on Christmas Day!  You don’t even have to speak if you don’t want to! Just listening in on the call will do you some good. Don’t hesitate to pick up the phone. The number to call is (213) 342-3090 and the access code is 1952435. If I could hug you, I WOULD!

Hidden Disability and Voting Options

Is a hidden disability or chronic illness creating a voting barrier for you this election?

It’s 4 years later, and in 3 DAYS we will have the opportunity to vote in the United States 2012 presidential election.

US Presidential 2012 Election

image: freedigitalphotos.net

According to the Rutgers school of management and labor relations website fact sheet.

In 2008 131.1 million people voted, and of that population, 14.7 million people had disabilities.

The voter turnout rate of people with disabilities was 7 percentage points lower than that of people without disabilities.

It doesn’t appear that people with hidden disabilities or chronic illness were counted in those statistics.

Living with a hidden disability I am concerned at the possibility that people with hidden disabilities are not included in these stats.

Allow me to share my 2008 election story…

It was an awkward experience.

I headed to the polls in the evening when the visibility was terrible (bad idea!).

I waited in the lengthy line, and when my turn was up I was standing at the voting booth feeling yucky!

I looked over at the disability and senior section and saw accessible tables.

I walked over to one of the election poll reps and asked if I could use one of the accessible tables. She said something along the lines….

“This is for seniors and the disabled.”

I quickly froze and said, “I have a hidden disability”.

She paused. I blurted out,” I have a balance disorder”.

She looked puzzled, and said “OK,” and let me sit and vote.

I DON’T BELIEVE she was being malicious or obstructive. She was protecting those accessible tables for the disabled and seniors.

People find it to be difficult believing I have a disability. There are no visible indicators. (At the time, I was not wearing prism glasses or using a walking stick.)

The simplicity of waiting in long lines and voting can pose difficulty for someone with a vestibular disorder.

People with vestibular disorders are dealing with vertigo, dizziness, imbalance, spatial disorientation, vision disturbances and a myriad of other symptoms.

I didn’t want to deal with the awkward experience again this election year, so I made sure to vote by mail.

My Vote By Mail Pamphlet

However, I started thinking of ALL THE FOLKS that are reluctant or will not attempt to vote because of chronic illness or hidden disabilities.

I reached out to a few sources and received a response from the L.A. County Registrar-Recorder/County Clerks office.

I want to THANK THEM for their willingness to answer my questions.

Hope you find this information helpful…

If you have a hidden disability, what is the best way to communicate to the polling place that you need to use an accessible table?

We understand that disclosing a disability is a personal decision and some people may not feel comfortable making others aware of it.  However, certain level of disclosure is necessary to receive a reasonable accommodation especially if the disability cannot be directly inferred from observation.

When and if voters choose to inform the poll worker that they have a disability, they should do it in a way that is comfortable for them. Some people may feel comfortable with talking openly to the poll worker to request special accommodations and explaining that they have a hidden disability.  Voters do not need to be specific on the type of disability they have but they should be clear and specific on the type of accommodation they need. On the other hand, some people may not feel comfortable disclosing in a public setting that they need a special accommodation due to a disability. In such case, voters can hand out a brief written message to the poll worker where they explain that they have a hidden disability and request that they are provided with special accommodations (e.g. using a wheelchair accessible voting booth, a magnifier, the audio ballot booth, etc.).

 

Is it required that there be an accessible table available to seniors and the disabled regardless of state and county?

We provide accessible voting booths and an audio ballot booth, as well as a number of assistive devices to serve voters with a range of and varying degrees of disabilities. We also have curbside voting.  Poll workers will do their best to accommodate voters’ needs when they identify that a special accommodation is needed or as soon as the request is made to them if the disability is not visible.

We try to provide a private and independent voter experience for all voters.  We do not provide tables…we provide accessible booths.  Tables do not provide a private voting experience for voters.  For these voters we have curbside voting.

* I was given an opportunity to sit and vote in 2008, but, based on this response this may not be the “standard” option. I believe I may have been using the wheelchair accessible booth and was given a chair to sit in.

Not everyone with a disability is issued a disability parking sticker. Will the hidden disability voters still be allowed to pull up to the front for curb side voting without a disability parking sticker?

Any voter who is unable to enter the polling place can request to vote curb side.  You are not required to have a disability license plate.

 

Can you explain how curb side voting works?

When the voters arrive to their designated precinct, they may inform election officials of their need to use curbside voting by pressing the button on the curbside call box. An election official (i.e. poll worker or inspector) will respond to the request for assistance by carrying a ballot outside the polling place and providing it to the voter. The voter is then able to make his or her choices in the comfort of his or her vehicle.

Is there a national phone number that the individual can call if they run into disability discrimination and they are not permitted to sit and vote because they “don’t look” disabled?

I was not provided a national number, however,  I was given local numbers.

I live in California and here are the numbers for Disability Rights California

North California: 1-888-569-7955

Southern California: 1-888-733-7565

Before or after election day call: 1-800-776-5746

If you DO NOT LIVE in California, and need to report a problem call 1-866-OUR-VOTE

You can find more information via the  866ourvote website.

Final Thoughts:

Find out how your state handles pre-election day voting. In the future I would suggest voting early.

If, you HAVE NOT taken advantage of pre-election day voting options don’t be discouraged.  Take advantage of curb side voting.

Helpful links provided by the L.A. County Registrar-Recorder/County Clerks office:

What is the law

Assisted registration

Is Your Poll Accessible? On-line Feedback Form

Accessible Voting Options

Whom to Contact

Election Guide for Voters with Specific Needs

Additional links I suggest you check out (national information)

Election Protection: You Have The Right To Vote

Register To Vote And Request Your Ballot Using The Form Your State Prefers

Rutgers- Disability and Voter Turn Out Facts

Disability Vote Project (I was unable to get a response, but the information on the site is solid)

National Disability Rights Network

Much love,
Marissa

PS: Voting should be an equal playing field, and regardless of ability we deserve the opportunity to exercise our right to vote!

Hidden Disability Universal Symbol

To symbolize is to acknowledge representation! I found it comforting knowing a Hidden Disability Universal Symbol was even in existence.

Hidden Disability Symbol

Proposed international symbol for Hidden Disability, copyright Laura Brydges.

To see is to believe, and being forced to prove you have a medical condition that is not visible has been frustrating, disheartening, and demeaning.

Hidden disability is defined as…

” Those disabilities that cannot be directly identified through observation. They can include cognitive, chronic health, and psychological disabilities.”

FOR THE NUMBER CRUNCHERS….

Here, are some hidden disability stats published in the 2002 US census.

Approximately 7.9 million people 15 and older had difficulty seeing words and letters in ordinary newspaper print, including 1.8 million people who reported being unable to see.

An estimated 7.8 million people 15 and older had difficulty hearing a normal conversation, including approximately 1.0 million who reported being unable to hear.

People with limitation in cognitive functioning or a mental or emotional illness that interfered with their daily activities accounted for 6.4 percent of the population or 14.3 million people.

7.9 million people with one or more selected conditions. (leaning disability; mental retardation; Alzheimer’s disease, senility, or dementia; or other mental or emotional condition).

I support an international symbol for hidden disability for the following reasons…

1. The symbol is an acknowledgment that hidden disabilities do exist.

2. It will create conversation which will bring awareness.

3. It’s a symbol that can be used anywhere… “It can also be used by organizations, such as hospitals and schools, to identify those with hidden disabilities that may require special assistance.”

To learn more about the Hidden Disability Universal Symbol, please check out the Hidden Disability Facebook page.

References:
http://www.census.gov/prod/2006pubs/p70-107.pdf
http://www.disabled-world.com/disability/types/invisible/
https://www.facebook.com/HiddenDisability

Much love,
Marissa

More Than A Work Badge? (Audio)

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More Than A Work Badge? (Audio)

Written blog post referenced: More Than A Work Badge?

Standing in and embracing my truth!

Much love,
Marissa

 

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More Than A Work Badge?

What are we holding onto that is keeping us from moving in a forward direction?       (Audio to come)

Marissa's work badge pre-disabilty I have gone through and thrown away pre-disability career memorabilia. From binders to pay-stubs I have purged myself of physical work memories, however, I have been unable to throw away my work badge. Pre-disability and post-disability are in a power struggle. Letting this work badge go and standing in my current truth is scary. Am I ready to let go and address the fear in letting go?

*Please excuse the raw photo. This poor badge has taken a beating!

Much love,
Marissa

The Daunting Disability Process

It’s a daunting process to apply for disability.  The burden is placed on the individual to prove they are disabled.  You must gather medical documentation and be reviewed by assigned medical doctors. In my particular case I was reviewed by three independent doctors.  Once your health and mental status have been combed over they hand down the decision.  I believe the baffling nature of my condition and the overwhelming amount of medical records didn’t leave much room for debate. It was a very scary time for me and I dread the medical reviews I have to face.

Image: Rawich / FreeDigitalPhotos.net

Here are some tips that helped me get through the process:

1. Be organized: I can not stress the importance of organization. You are going to be dealing with a mountain of paperwork. You do not want to delay the process or forget to include important documentation because your paperwork is in disarray.

2. Request your medical records: I found it helpful to have my medical records in my possession. I have seen several specialist and my medical records were spread throughout various hospitals and departments within hospitals. Also I was able to go through my records and recall events I had forgotten or appointments where I was too sick to recall details.

3. Ask for help:  The process can be daunting. I had to take it in stages. Don’t hesitate to ask a family member or friend to assist you. At times we often feel embarrassed or prideful and refuse to ask for help.  I have learned through this process to let go and let others assist me.

Much love,
Marissa

Vocational Rehabilitation or Bust

I strongly believe finding resources limited the number of dark days this condition presents. The HMO medical community and my employer had given up on me but I had sense enough not to give up on myself. I figured there had to be a way for me to actively participant in the workforce in some capacity. I have a capable mind and an unyielding spirit.  These qualities allowed me the ability to get out and explore my options. Maybe there was a person or organization that would be willing to give me some guidance? In comes Vocational Rehabilitation…

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