Friday, December 28, 2018

When Someone Doesn’t Understand the “Chronic” in Chronic Illness

Allison Jonergin
Guest Blogger

“What’s wrong?”
“What do you mean?”
“I don’t know. You just seem so…”

What? I seem so, what? 

I seem less talkative, less energetic, less happy. So why don’t you just say that? 

Asking me if I’m okay is telling me I don’t seem okay enough for you. Asking me what’s wrong is telling me you can start to see through the façade I spend so much energy daily constructing. It is not offering understanding or a helping hand. Rather, it is telling me the reality of my being sick makes you uncomfortable. Oh, and also, it’s my fault. Merry Christmas. 

You’re not satisfied when I assure you I’m okay. Sure, I could rattle off the diagnoses, but I know what comes next, and quite frankly, I don’t have the energy for the emotional labor of fending off forced sympathy that I didn’t want in the first place. So I summarize and say I’m sick. I say I’m preoccupied. I say I’m tired. All of these are true, and none of them tell you what is really going on.

Guest blogging
Pain is surging at the usual hotspots, my joints. It feels like each one has a funny bone that has just been hit with a hammer. A migraine heightens my sensitivity to the lights and sounds around me. The bones of my skull conduct the inward pain outward, like a copper panhandle, singeing my fingers when I rub my brow. My eyes feel heavy, they burn, and there is an annoying aura making it impossible to focus clearly. I feel mentally drained. It’s difficult to think, let alone speak, in complete sentences. This doesn’t stop my anxiety and depression from shouting pleasantries at each other inside my head, coming up with colorful slogans like, I don’t care about anyone, not even myself. I’m tired. I don’t want to do this anymore. How will things ever get better?

“I’m not feeling well,” I offer.

Yes, actually, hence the “chronic” in chronic illnesses.

Whether or not you mean to, you’re saying, “You don’t seem sick most of the time. What is wrong with you now?” I am always sick. I try my very best not to seem so. All you’re doing is acknowledging that while I can try my best to pretend I’m normal, I can’t pretend away the very real impacts my chronic illnesses have on my life.

I often get caught in a toxic cycle of overestimating how much energy I have and underestimating the effects of post-exertion malaise, a debilitating symptom of chronic fatigue syndrome, at which time your energy levels plummet and you’re left dragging your deadweight body hopefully to a bed where you can rest for several hours. As this isn’t always possible, sometimes I’m forced to interact well after my shut off valve has locked. It’s like gasping for air in outer space. To you, it probably looks closer to a mime suffocating in an imaginary box.

Would it help you to understand if I lived in a hospital? Would a hospital gown somehow put all of this into perspective for you? Would it complete the picture accompanying my narrative? Would it still be a story you’d be interested in reading?

“Still,” I say.

Friday, December 14, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

This week - December 8-14 2018:

Three items shared on NCCI’s social media this week …

1. ACTION ALERT! Support Money Follows the Person through the IMPROVE Act!
American Association of People with Disabilities - December 11, 2018

Advocacy needed to preserve one of our most important programs for supporting true independent living.
Greg Hinz, Crain’s Chicago Business - December 7, 2018

A first step in holding airlines responsible when they damage wheelchairs and other disability-related equipment.

Eliza Hull, ABC Life - December 3, 2018

A look back at the life and wit of one of the disability community’s most beloved, and greatly missed leaders.

Thursday, December 13, 2018

Action Alert: Support Money Follows the Person!

Action Alert

The Money Follows The Person program, (MFP), is about halfway to being renewed. The House passed it this week. Now it moves to the Senate, and we need people to call their Senators and ask them to support it. You can use this Action Alert from the American Association of People with Disabilities, (AAPD), by clicking this link.

From the Action Alert:

“MFP helps people with disabilities and older adults who want to move out of nursing homes or other institutions get back into their communities. MFP has assisted more than 88,000 individuals voluntarily move into a setting of their choice – it has improved the lives of older adults and people with disabilities, saved states money, and led to better outcomes. That’s why nearly every state has participated in the program. However, MFP expired September 30, 2016 and states are running out of funding. People with disabilities deserve the right to live in the community, rather than spending their lives segregated into institutions.”

Please call now. This program is an important part of NCCI’s work!

Saturday, December 8, 2018

By The Numbers: NCCI Services 2017 / 2018

The main goal of providing services at NCCI is to assist individuals with disabilities, and others dealing with disability issues. Each person we work with has an individual story, and each person who achieves or maintains their independence is a win, for them and for all of us.

Once in awhile though, it's useful to take a step back and look at what all of our services throughout the year look like. Exactly who are we serving? Which of our services are the most in demand? What kind of impact are we having in the North Country community?

The graphics below show data on services provided by the North Country Center for Independence between October 2017 and September 2018. You can click on each graphic to see a larger, easier to read version.

Have a look ...

How many people did NCCI serve? 637 people with disabilities. 336 other non-disabled. 48 families. Disabilities of people served: 351 physical. 174 cognitive. 75 mental. 42 sensory. How many people used each service? 608 information & referral. 573 personal assistance services. 261 advocacy. 229 benefits assistance. 101 accessibility assistance. 55 transportation assistance. 45 peer counseling. 33 housing assistance. 16 other services. 13 assistive technology.

And here is a closer look at two of NCCI's most important programs:

200 people with disabilities used CDPAP home care services to live more independently. 430 people were employed as personal care aides providing CDPAP home care. 152 people with disabilities used CDPAP services to avoid unwanted nursing home placement. $10.2 million dollars in taxpayer money saved, compared to the cost of institutional care.

1,270 information & referrals provided to nursing home and adult care facility residents, staff, and families. 527 facility visits by staff and volunteers, to nursing homes and adult care facilities. 448 total volunteer hours provided by Volunteer Ombudsmen, in facility visits and advocacy activities on behalf of nursing home and adult care facility residents.

Friday, December 7, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

This week - December 1-7 2018:

Three items shared on NCCI’s social media this week …

Rachel Withers, - December 2, 2018

More details about President Bush’s role in passing the Americans with Disabilities Act.
Renée Byer, Sacramento Bee - December 4, 2018

Emergency response in disasters still tends to fail people with disabilities. Can we learn to make it better?

United Nations - December 3, 2018

Observances around the world.