Kairit Krikk (1970-2011)

 

You are so loved and will be so missed.

Fly, fly little wing

Fly beyond imagining

The softest cloud, the whitest dove

Upon the wind of heaven's love

Past the planets and the stars

Leave this lonely world of ours

Escape the sorrow and the pain

And fly again

Fly, fly precious one

Your endless journey has begun

Take your gentle happiness

Far too beautiful for this

Cross over to the other shore

There is peace forevermore

But hold this memory bittersweet

Until we meet

Fly, fly do not fear

Don't waste a breath, don't shed a tear

Your heart is pure, your soul is free

Be on your way, don't wait for me

Above the universe you'll climb

On beyond the hands of time

The moon will rise, the sun will set

But I won't forget

Fly, fly little wing

Fly where only angels sing

Fly away, the time is right

Go now, find the light 
 

No hope in sight

Kairit looks beautiful on skype. We talked about her recent ten-day stay at the hospital for neurologic care in Haapsalu where she thought she would receive daily physical therapy. That proved false.  She did have one 45-minute session but it seems that was merely to test the strength of her muscles.  I was not there so I cannot attest to Kairit's impression that the process at the hospital was merely paying lip service to her condition. She feels that given the death sentence of ALS there is no real desire to improve the quality of her life. I argue that I am sure she is mistaken -- that often nurses and even doctors feel impotent in dealing with a disease where there is yet no treatment nor cure....and its very beginnings are not yet understood.  Here in the United States there are clinics for people with ALS where they can get help to continue their daily lives. Often these resources are provided free-of-charge. The ALS Association is a valuable helpmate.

I asked Kairit's mother, Aino (my half-sister), who is 70 years old, how she is holding up. She is tired but determined to help as long as possible. She and Kairit's sister, Hurmi, who was visiting from Tallinn, received instructions at the hospital on how to lift Kairit in and out of a wheelchair. Kairit is finally coming around to the idea that she should have one so she can at least get out of her one-room environment. The goal is to get one by the time spring arrives and install a wheelchair ramp at Kairit's back door stairs so she can be transported to the sidewalk. Fortunately, her apartment home is on the first level of the building and located not far from the town center. She'll be able to visit with friends and enjoy a cafe meal. We all hope that the change of scenery will enliven Kairit's spirits....but we forgive her the bad days. Think about it -- how do you feel when a bad headache or a cold ruins your day? Imagine a day when your muscles are not working -- when you can't walk, or sit up in bed, or use your hands, or swallow -- and never will again. Tough deal...

We caught up on other family news and then agreed to speak again in a few days.

I did not tell Kairit that the Canadian attorney with ALS who we met at the stem cell clinic in Dusseldorf died this past week. Rest in peace, David. You will be missed...

Research & Money

Kairit' s lovely face framed by her newly cut hair lit up the computer screen via skype.  She had received the protein powders and other supplements I had sent that she credits for keeping her feeling healthy. Healthy --  but for ALS. I wish I could go to the holistic pharmacy and buy some product that would keep the progression of the muscle-wasting disease at bay or even reverse its effects. She has been taking the Imuran drug for several months now in the hope that she has not ALS but MMN, multi-focal motor neuropathy.  The Imuran thus far has only worked to weaken her immune system but the motor neurons do not have any more life than 4 months ago. If anything she is weaker. In another eight weeks, Kairit will have a follow-up with her doctor at Tartu University Hospital. Whether or not she continues the drug will then be determined.

It seems of late the ALS Association has sent several notices of progress made in identifying genes and mutations, and other findings but there has been no "AHA" moment.  As with so many diseases that still need treatment options and cures, money makes the difference in research. The cancer treatments and cures for some types of cancer have resulted from billions of dollars and many years of scientific research. ALS is underfunded because, quite frankly, fewer people get the disease...and most die rather quickly. It does not place the same strain on the healthcare system as other terminal illnesses. It only matters to the ALS patients, their loved ones, and those dedicated medical professionals and scientists who want to make a difference in caring for patients stricken with this terrible disease. Every disease is difficult but ALS seems particularly cruel  -- to keep the mind vital while the body wastes away.

If you have never experienced ALS with a loved one....or any friend or acquaintance...it is hard to imagine the depths of despair that set in when told there is no treatment and no cure. I have struggled for months now with my emotions. Kairit is too young and vital to let go. My aunt Geri, a fashionable and energetic woman in her early 60's, died just a year and half after her diagnosis. The two sides of the family are not genetically related...Kairit being the youngest daughter of my half-sister, Aino...and Geri was my mother's younger sister. I was not as connected to Geri's ill fate because I did not speak with her regularly on skype. Her smiling face did not reach across the seas...grab my heart...and cause me to pray for riches to come my way so we could put the money towards research into a cure for ALS.