Hoping and Coping With a Disability

We who have disabilities have certain limitations. We understand that and, with the passing of time, we accept them. But we also have abilities in addition to those limitations.

If you’ve followed this blog for any length of time, you know I’m manic-depressive. Or, to use the more common name for it, I have bi-polar disorder. People who are bi-polar are limited in different ways; limited in as many ways as there are people with the diagnosis, I imagine. And so it is with anyone who lives with chronic illness or a disability.

I believe that, although people with chronic illnesses and disabilities have limitations, most of us aren’t constantly “suffering.” What we’re doing is learning how to manage it; we’re living our lives and sometimes even thriving. Sure, we struggle sometimes.  But we also have hope. We manage to put one foot in front of the other (so to speak) and do the necessary things to have a relatively good life.

Stress exacerbates any chronic illness, so we must avoid situations we’ve discovered we can’t handle as easily as someone without a disability. The symptoms we often have because of stress could be mental or emotional. They could manifest as physical symptoms.

Please don’t expect us to make important decisions when we are sick. If we’re experiencing a flare-up or an episode of the illness, we may in fact, need your patience as we make simple decisions to just get through the day.

If it seems we’re being irritable, you’re right. Some disabilities are noted for having an irritability aspect. For me, this is one of the first symptoms I display when I begin a manic phase–even before I begin the ‘hyper’ activity. I think I can speak for many when I say this is another aspect of having a disability we wouldn’t suffer if we didn’t have to. Most of us have a great attitude toward life. We don’t complain all the time and we’re generally nice people. But if we’re in pain or not able to think our way out of a paper bag, we can get grumpy. Hey, everyone gets grumpy occasionally; people with disabilities are no different.

Some of the ultimate limitations are being bed-ridden; inability to communicate our needs effectively; a temporary inability to handle being in public or with groups; not being able to work; and the necessity for some sort of support equipment (i.e., wheelchairs, oxygen, inhalers). However, many disabilities are what we refer to as “invisible.” Please don’t assume someone isn’t struggling just because they don’t need equipment.

As far as our hope is concerned:

For the most part, we rely on being educated about our specific disability. Knowledge is power and when we understand what’s going on in our bodies, we’re better equipped to respond to the symptoms. Then we go from being helpless to being able to manage, to a certain degree, what’s happening. We might not be able to rid ourselves of the physical (or mental) state, but we can usually control what we do. We can control our attitude toward our illness and the world around us.

Many of us practice some sort of faith. We rely on worship and prayer and are grateful when our friends and loved ones pray for us.

People with disabilities usually need to grieve their health. That process may be subtle and we may not even realize grieving is what we’re doing. Frankly, our irritability might be happening because we’re moving toward acceptance of our limitations. I mean, who wants to come out and say, “I simply can’t do some of the things I want to do”? But acceptance is one key to handling our problems.

I’ve learned that having a good day might mean leaving the house and moving my focus off myself. I can get the proverbial shot in the arm by simply having a brief conversation with a neighbor or calling someone on the phone to chat. I write letters and notes to friends and family members. Engaging in hobbies or learning a new skill helps too.

People with disabilities have much to offer. We might not be able to work even part time jobs. But we can volunteer, we can engage in our communities as advocates for something we’re passionate about, and we can offer a compassionate ear to someone who’s struggling with an illness because we’ve been there ourselves.

Over the years, I’ve discovered what Helen Keller said is also true for me.

“I thank God for my handicaps for through them I have found myself, my work and my God.”

Seeing my illnesses as something I can learn about and learn from helps me to keep a positive outlook even during a flare-up. I know God is with me. Even during a psychic ‘crash,’ I know that when I pray, God hears me. I don’t look like I’ve got it together–and I don’t. But I trust that God is in control.

Today, I’m believing less in “self-help” and relying on “God-help.” Ironically, in my most vulnerable states, I realized God can make me strong. In our world many of us think we must declare our independence. We believe our dreams are a result of hard work and self-sufficiency. While there’s nothing wrong with hard work, I prefer to declare dependence. On God.

Having a disability doesn’t make me less human. It doesn’t mean my limitations define me. Having a disability doesn’t mean I can’t make contributions to society. I’m a person living my life with purpose because God has promised me that I can.

 

Author’s note: I don’t claim to know everything about every chronic illness. I know some illnesses make an individual totally unable to make decisions for themselves and caregivers are needed to help them navigate life. This post about the abilities and limitations of people with disabilities is not all-inclusive or meant to be medical advice. The comments herein are taken from observations of my friends’ conditions, conversations with those individuals, and my own experience with several chronic illnesses. For those interested in such things, many support groups exist addressing the needs of a variety of illnesses.

 

Advertisements

Comfort Foodie

An Education

No one educated me as I was growing up about the proper terms used for the various gatherings which occur when someone dies. The only word I was familiar with was “funeral.”

Later, I learned there was also quite often a “visitation.” People went to the facility that was handling the funeral and viewed the body. They spoke in low tones and offered condolences to the bereaved family members. I didn’t know for a long time that this is also called a “wake.”

I became confused the first time I arrived at a funeral and the man at the entrance asked if I was going to the cemetery for graveside services. But I was still learning.

Finally, with graveside services over, we’d gather for the “funeral dinner.”

A Bit of Reality

A little over a month ago, someone who was special to me passed away. And though I’ve been to many funerals during my life, I’m still learning. This wonderful man’s life celebration gave me pause as I sat and watched the people around me.

In the chapel of my church, a buffet luncheon and tables were set up. We filled our plates and sat with friends to share memories or to just have normal conversations. I realized that having a funeral dinner gives a different meaning to “comfort food.” When we lose someone we love, we need to feel, even if for a short time, something resembling normal. We meet over a meal and we’re somehow comforted.

If a funeral dinner happens at a church, the food was most likely prepared by church members in their homes. The food is often simple. Friends and family members help by offering a kind of stability in shaky circumstances. The simpler we keep things, the better. Even silences can be healing.

Last week a long-time friend notified me her husband had died. I didn’t look forward to attending another funeral. But I surely was ready to be there to comfort her. That meant being there in any way she needed.

It turned out that I sat with her and her children, whom I’d watch grow up, at the funeral dinner. We ate some “comfort food” and talked about normal stuff. If I was the betting type, I’d bet that it won’t be long before she and I are sharing more memories over a meal and talking about what’s making life normal again now that she’s grieving.

A Recipe For Caring

We don’t like to admit it, but we know that food seems to make things better.

We get up in the morning and our bodies are ready for sustenance. Food makes that bodily craving go away. “Ah, that’s better.”

Someone’s having a baby and we throw a shower. Food–especially chocolate–makes the occasion better. Weddings include a feast following the ceremony. Because food makes it even better. The Saturday football game at our alma mater begs a tailgater. Except for our team winning, what could possibly make it better?

We celebrate the milestones in life with food, join in conversations at the dinner table with our family, grab some of that famous Mackinac Island fudge while we’re on vacation, and roast marshmallows over a campfire. Because food makes getting together so much better.

An Example to Follow

Scour the Bible and you find many instances in which Jesus was eating with people. Indeed, a couple of his most famous miracles included feeding thousands of people. What we in the Church call communion is based on the Lord’s command during his last meal with the disciples to “remember him.”

I doubt very much they realized the bread and wine were “comfort food.”

But I’m still learning and I know. It’s why we say we celebrate communion. In community we celebrate, we remember, and we look to the future.

Loving Father, I pray we always know the way to celebrate life, even when we face life without someone we love. Help us to make each moment precious and to create communion–community–whenever we meet with people. Thank you for the gift of food and the many ways it sustains us. Thank you for the simplicity it can offer in a grave situation. Help us to find our ultimate joy and purpose in you and to realize Christ is the bread of life. Thank you, Jesus, for being the comfort food that will never leave us hungry.