2 posts tagged “story”

When children are the caregivers

Posted July 13th, 2015 by

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support.

PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below:

Katrina’s story
“Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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A life well lived: Giving and sharing with PatientsLikeMe member Geof

Posted December 17th, 2013 by

At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his health journey, his philosophy on giving, and the meaning behind his username life well lived.

When were you first diagnosed with MS? What was it like? How did it impact your day-to-day life?

To be honest, when I was diagnosed, it was a relief. For months I had headaches which only went away with sleep. The worst part was having them wake me up in the middle of the night. I wanted to scream, “Body! Why are you waking me up to tell me to sleep?” Then came the dizziness, and finally the double vision. I was able to get an MRI, but I was having trouble getting an appointment with a neurologist (my primary care physician said I needed one when he ordered the MRI). The radiologist said the results could only be released to my doctor.

So naturally, after thinking about it for a day and discussing with my wife, I called up and said I needed the write-up of the results because I was changing doctors. As I read the three paragraph report, it became clear the radiologist writing up the report thought one of three things could be happening: 1) brain infection (my wife and I thought this was very unlikely as I would be much sicker), 2) Multiple Sclerosis or 3) cancer, probably testicular. If it was option 3, I was screwed, and not in a good way. The cancer would have had to spread from my groin to my head.

So we hoped for option 2, Multiple Sclerosis. Armed with the report, I went back to my primary care physician, and he started making phone calls. A week later I was in Hopkins, relieved to have MS. How many can say that?

I started treatment with Copaxone, and otherwise rejoined a normal life – well, normal for me, as we had just started fostering my daughter a couple of months earlier. I took my injections in front of her so she could learn not to fear shots. As a heart patient, she was looking forward to a long medical history, and I wanted to show her shots can be tolerated.

You mentioned you have two wonderful children – can you tell us a little about them?

On our first date, I asked my now wife how her life would be different in five years if it went as she would wish. She, being a pediatric nurse at Hopkins, said she would be a foster parent for medically fragile children. Five years after our first date and two years after getting married, we took in our first foster daughter, whom we later adopted. Her history includes five heart surgeries, a stroke, and numerous other medical incidents. We also took in a premie/shaken boy a year after our foster daughter, and we adopted him too. Finally, we took in a premie blind girl, whom we will likely adopt next year.

You say on your PatientsLikeMe profile that “life well lived” would be the title of your life’s biography – can you tell us why that is?

The title comes from a thread on a Washington Redskin’s message board that asked members what words they would use to title a book about their lives. In a moment of pure hubris, I replied “The Life Well Lived.” This thread was long before my now wife and I began fostering, and it was before MS came into my life.

After my Latin teacher in high school pulled me aside one day for a candid appraisal, I resigned myself to finding ways to make what abilities I have matter most. Ms. Pelosi told me, “Geof, I’ve taught you for three years now, and I’ve watched you play soccer for the past two. You are hardworking enough, smart enough, and athletic enough to be good at whatever you choose to do with your life, but at the highest levels, you won’t be the best.” Some might be devastated if their favorite teacher told them this, but I took it to mean I needed to find something extraordinary at which merely being good was superb. So when my now wife mentioned fostering sick kids, I thought it sounded ideal. So many kids need homes, and so many potential parents are only looking for healthy kids who look like them.

Raising kids whose medical problems sometimes puts them on the outside of society became my life well lived, using my skills in a way that matters, even if I am not the “best at the highest level.”

Now the life well lived is not the name of my biography, but it is the name of my blog (thelifewelllived.net). Of course, the life well lived is now the life enjoyed by our family rather than just mine, as my life well lived should not be one lived in isolation.

It looks like you use the tracking tools on PatientsLikeme a bunch, especially your Multiple Sclerosis Rating Scale (MSRS). How has the ability to track what’s changing impacted you and your health?

I’ve used the site for tracking a variety of things about my MS. I probably use the medication tracking the most, as it is far easier to just print and bring it to appointments rather than rely on my suspect memory.

I have used the MSRS primarily when I feel blue or my wife is lamenting the progress of my MS. It’s nice to be able to go back and say, “This isn’t new, and while I may not be as good as I once was, I’m in pretty good shape for the shape I’m in.” It is also nice to occasionally see when things have improved, and believe it or not, some symptoms have improved. Most of the time, it is a reminder my original neurologist was probably correct when he said I have aggressive MS.

If you could share anything with the MS community as a whole, what would your message be?

The more I read about any chronic illness, the more clear it seems. Those who deal best with illnesses seem to be those who find a way to give. Whether it is a kind word or a hug to a kid feeling unloved, the act of giving forces us to look beyond our illnesses, beyond all that we can no longer do, so that we can remember our value to society. So often the temptation is to fall into the “woe is me” camp, but we can be so much more. When one looks for ways to give, one is forced to look at what we can still do. This focus seems so much healthier than dwelling on what we have lost and are losing.

I have said for years I have gotten far more from my kids than I put into them. I got a reason to keep going when situations are rough. I can see their strength and draw inspiration. I can see little tricks work for them and take solace I have helped them deal with life. Giving is no zero sum game. Somehow, giving leads to both sides of our exchange ending up with more than we had before the gift.

So my advice for the MS community as a whole is find something you can still do to make somebody else’s life a little better. I know we are in the age of “Have to take care of myself first,” but how often does the concern for self lead to inward vision missing the potential gains from looking out for others?

When I posted these types of thoughts on the same board as the “title your biography” thread, I was dismissed as a hippy philanthropist. Given that I am not rich in money, I have never received such a rich compliment in my life. The irony is the giving is what allows me to deal with my MS. The giving gifts me with a happier perspective.