At first I thought I couldn’t write about this but I’ve learned that writing helps me process things and sort out the tidal wave of feelings about Rheumatoid Arthritis and how it stole my cousin’s life. I don’t mean that it just killed her, it stole her entire life and I am pissed off.

Judy died today at just 62 years old. She was diagnosed with Rheumatoid Arthritis at just 10 years old. Her disease was relentless. Within a short time she was wheelchair dependent. Can you imagine spending your childhood in a wheelchair? No running or riding bikes. No swimming or going to the beach. No laying on the floor playing records.

Is your heart breaking yet? Mine is.

Rheumatoid Arthritis and autoimmune diseases run in our family. Six of us have struggled with these diseases. When Judy and I were younger there was very little therapy for Rheumatoid. We took aspirin 10-12 tabs a day or gold injections. That was all they had to treat us. The disease ravaged my family but it hit Judy the hardest.

We liked to joke that we got all the shitty Yeager genes. Rheumatoid, thin hair and diabetes rule that Yeager genome.

But we have secret weapons.

Yeagers are STRONG.

Yeagers stick together.

Yeagers have strong faith in God that somehow gets us through times like this.

Side Note: I prefer to refer to this condition as Rheumatoid Disease instead of Rheumatoid Arthritis. I guess it was named that years ago when we only knew about the outward symptoms like swollen joints. Now we know that inflamed joints are the least of our problems.

I could tell you about her sense of humor or how smart Judy was. I could tell you about her graduating at the top of her class at Rutgers or how she started and ran her own successful business for over 27 years. But I haven’t even gotten to the really good stuff.

Judy did not have an inspirational life because of all that. Everything Judy did or became was because love. The love of her family. My aunt and uncle gave up a huge part of their lives to take care of her. Her brother and sisters took care of her every need. She was surrounded with support and love every single day.

Over time all of Judy’s joints became completely frozen. Nothing moved except slight motion of her jaw and arm. NOTHING on her moved. She was locked in a sitting position. Later the Rheumatoid Disease attacked her heart valves and aorta. Slowly her bones dissolved too. All the bones in her hands and shoulder …disappeared. Her arm was only held on with tendons. Her hands became just little balls of flesh. With all this, when I saw her she always wanted to know how I was. We compared Rheumatoid medications, heart procedures and complained about those damn Yeager genes!

Now the good stuff. Until she was vent dependent, Judy never had an aid or a nurse. She needed 100% care and her family stepped up and did it all. She never had a bedsore or was always dressed beautifully. Her hair was fixed and always had cute little earrings on.

Judy went everywhere. Her family got her a handicapped van and an electric wheelchair. She loved our marina and the mall where she could open that baby up and fly past us.

Judy never missed a family party or get together. When I heard that aluminum ramp hit the front step, I knew Judy had arrived and the party could get started.

From being trached so many times Judy’s voice box became damaged and she could only whisper. I never minded because it gave me the chance to snuggle in when we talked. We always had a special connection.

What kept her going all these years?

It was her heart.

I don’t mean all the heart surgeries, doctors and meds. I mean love. She loved with a passion that I’ve rarely seen. And her family loved her back the exact same way.

Her Mom was her primary caretaker and truly her best friend. When Judy attended Rutgers her mother drove her to Camden every single day for four years. She pushed her from class to class. Her classes were in old buildings where the elevators were often out of service. If it came down to it, my feisty little Aunt scooped Judy out of that chair and carried her up the stairs to her class. My Aunt Helen is a bad ass.

One day Judy decided she wanted to fly to London to visit old friends. The airlines refused her because of her lack of mobility. Judy fought. Her family fought. Judy went to London.

With lots and lots of planning and the help of her family, Judy went to London, Alaska and even Germany. We were all a little terrified when she went to Germany. She needed so much care. Handicapped vans, wheelchair accessible everything. Supposed she got sick over there? Her heart was starting to fail. The Rheumatoid Disease just never stopped. Judy told me she would rather die living her dreams that die quietly at home. Her family took care of her day and night. They say hard times make a family fall apart or draw together. My cousins pulled together and worked like a well oiled machine.

Did I mention her nieces and nephew? She could not have loved them more if they were her own. My aunt and uncle converted part of their home to a wheelchair accessible tax and account office. The business took off and soon her sisters Carolyn and Cheryl joined the business. Their kids played on the floor between clients. They would climb up her chair and beg for wheelchair rides. She went to all their sports stuff and made everything special for those kids. They loved her back with the same passion. Now in their 20s, they stayed at Judy’s bedside thru the last few days, talking to her and hoping she could still hear them. It broke my heart.

What will we do without her?

How can we have Christmas or pot-luck dinners without her?

No one understood my Rheumatoid the way she did. She just got it.

Sometimes it felt like I could keep fighting because she was sharing my burden, fighting at my side.

God, I will miss her.

Judy, if you can hear me… I was wrong about Rheumatoid Disease stealing your life.

It sure tried, but you took it back.

A life well lived.

You were my hero.

I love you.

Confession: Pictures stolen from Paul and Bryanna.

Oh very young
What will you leave us this time
You’re only dancing on this earth for a short while
And though your dreams may toss and turn you now
They will vanish away like your daddy’s best jeans
Denim Blue fading up to the sky
And though you want him to last forever
You know he never will
And the patches make the goodbye harder still
Oh very young
What will you leave us this time
There’ll never be a better chance to change your mind
And if you want this world to see a better day
Will you carry the words of love with you
Will you ride the great white bird into heaven
And though you want to last forever
You know you never will
And the goodbye makes the journey harder still
Oh very young
What will you leave us this time
You’re only dancing on this earth for a short while
Oh very young
What will you leave us this time

—-Cat Stevens