Category Archives: Terminal Illness

Claire Wineland Quotes, remembering respected health advocate

The title of this article should actually say that Claire Wineland was a “Life Advocate.” She was the epitome of MLK’s quote, “It doesn’t matter how long you live, but how well you do it.”

I didn’t know Claire personally, but like so many of her followers on social media, those who read her book or had the pleasure of attending one of her talks in person, she felt like a friend. She had a talent for drawing people in, then she would reveal her truths to us.

Like a teenage philosopher, the Cystic Fibrosis fighter pondered mortality, how to live boldly in spite of limitations, and the depth of the human spirit from her social media pages and youtube channel. She said that her two favorite hobbies were to think and talk, so she put her best gifts to good use!

“I don’t agree to do these talks to tell you how to have a happy life. Life is hard. It’s painful. You can suffer. You can experience what it’s like to be a human being with all of the messy gross emotions that come with it, and still make a life that you are very very proud of.”

Sometimes Claire shared her thought provoking videos from her apartment, or laying in a hospital bed; we once even found her clothed in a hot bathtub!

That was Claire Wineland. She was spunky and full of spirit, never ceasing to surprise or defy expectations!

When she spoke, her wisdom and maturity made you forget that she was only in her late teens– just coming into her early 20’s.

As a young adult, she became a speaker, author, and founder of a non-profit for kids with her condition Cystic Fibrosis called Claire’s Place Foundation. Going on speaking engagements (when she was well enough), afforded her opportunities to see more of the world, to travel, to make friends, stay in hotels instead of hospitals, and gave her new life experiences which she cherished.

Through her professionalism in health activism and being in the public eye, Claire Wineland helped make the work of health advocacy a more respected job title.

She took a strong stance on addressing the way the world infantalizes young people living with illness, something she understood all too well growing up with CF.

She was a rare soul as much as her perspective on life was unique. At times controversial, Claire shared that happiness itself wasn’t the key to life. Instead, she maintained that living out our purpose through service is where we find deeper meaning.

In one of her last videos, Claire spoke passionately about her charity she created she referred to as her “baby”. She spoke on the undenianble worth she believed everyone has regardless of limitations. This had been her battlecry throughout her career, which made her beloved to people living with disabilities of all types.

Her comments section always exploded with thoughtful discussions, as she had a way of eliciting meaningful conversations. People would engage one another on life, death, happiness, and pondering the true meaning of existence.

Claire’s following consists of terminally ill individuals, healthy young people, adults, Cystic Fibrosis fighters, and people with long term chronic diseases like myself. (Even celebrities from Bernie Sanders to Anne Hathaway are part of Claire’s fan club.) You can imagine the conversations she sparked, and the perspectives she challenged!

Claire had fought to outlive her life expectancy, and she overcame near-death several times. Because of her experiences, she believed in demystifying mortality, and used her prognosis to wake us up into living our own lives more fruitfully.

In one of the last videos she shared, she plead for support to get a lung transplant- something she once vowed she would never agree to. Though she belly-laughed and joked through her former talks, in this one, her tears flowed. She shared the possibilities and dreams she saw for herself if the transplant was a success. For the first time in her life, she was looking forward to her future. An enormous outpouring of both financial and heartfelt support followed from her fans.

More than enough funding was donated to cover costs of her medical care. A video of Claire’s genuine appreciation followed in return. She expressed her humility and surprise that so many contributed and reached out to encourage her. The overflow of funds were given to Claire’s Cystic Fibrosis Foundation.

Because of her online friends, Claire went into her surgery overjoyed with hope, gratitude, and feeling love from hundreds of thousands worldwide.

The people she had inspired and imparted her wisdom to for years were able to send her off to her surgery with well wishes and a flooding of encouragement.

She is said to have suffered a stroke on September 2, 2018. Claire was put into a medically induced coma, and taken off of life support one week post-operation. Her parents say she passed peacefully.

She was 21 years old.

Sincere condolences to the Wineland family. As a long time chronic illness sufferer, Claire touched my life and heart as she did for so many others.

I leave you with my favorite video of Claire’s, one of her most powerful TedX talks. I hope you will watch and share her message… In loving memory of Claire.

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About My Home Health Aid

I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.

Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.

I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.

I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.

A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.

Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.

On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.

I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!

“Beside the Fire” ―with J.R.R. Tolkien

“I sit beside the fire and think
Of all that I have seen
Of meadow flowers and butterflies
In summers that have been

Of yellow leaves and gossamer
In autumns that there were
With morning mist and silver sun
And wind upon my hair

I sit beside the fire and think
Of how the world will be
When winter comes without a spring
That I shall ever see

For still there are so many things
That I have never seen
In every wood in every spring
There is a different green

I sit beside the fire and think
Of people long ago
And people that will see a world
That I shall never know

But all the while I sit and think
Of times there were before
I listen for returning feet
And voices at the door”

― J.R.R. Tolkien

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