November 24, 2016
“Awake at dawn with a winged heart and give thanks
for another day of loving.”
– Kahlil Gibran
November 2016 Outing to SFMOMA
It has been a year. The event of Thanksgiving demands that I sit, reflect and write to you…
Commitment as I write today: Be boldly honest and transparent. There is an underlying pull to selectively tell our “story;” to give light to only the best and brightest moments, to let the underbelly of this journey remain banished to the shadows. There is value in choosing the half-full narrative… for musings on another day…
Today, I feel called to open the door wide, with few constraints, to sit with the complexity, the half-full and half-empty side-by-side. To let in and to let out both the sunlight and the gales of sleet and rain… To reveal both the triumph and torment. They coexist. They tug at each other to gain front and center positioning. Each has their time in the spotlight.
A couple of days ago, at the prompting of a Facebook gimmick to keep us all involved, I framed a picture “thankful for us” as my profile picture. It was a ‘perfect picture’ Ari and Imani (Dannie) up and dressed, smiles all around. It was a day of celebration…. All three of us able to have a day out of bed, out of the house, together. We went to SFMOMA without a wheel chair, and made it through the exhibits, followed by dinner on Union Street. Everyone managed to eat something.
What is not visible in the picture is that this was one of four days during the last 365 or more that all three of us were able to get out together strictly for fun; two Lyme Fundraising Events (Dart for Art, LymeLight~ https://lymelightfoundation.org/ and Polo for Lyme, Bay Area Lyme Foundation~ http://www.bayarealyme.org/) outings that were not solely medical or illness- related.
The truth is, it took Imani (Dannie) over 4 hours to get up and get dressed — managing nausea, pain and myriad other symptoms, using makeup as a camoflauge for her illness. Ari fought through exhaustion which begs for him to lie down and waves of sweat and nausea. I put one foot in front of the other, letting go of intruding thoughts of the long list of necessities that fill my one day-off a week, and my body’s loud protest and screaming desire to stay in bed all day.
All this interruption was counterbalanced with the sheer joy we shared at being together – manufactured by sheer force of will and adrenaline to fuel the few hours. What is not present is grueling consequences of eating restaurant food, pushing bodies to be upright, managing torturous car rides with bumps and stops and starts, and the subsequent days which necessitated both Ari and Imani being in bed to recuperate.
Yes, it is sheer joy to have the opportunity to share the glorious moment with those who have supported us, prayed for us, encouraged us. We are weary of being those sick and struggling people.
November 2016 SFMOMA
One picture is followed by numerous exclamations of “so glad you are all healthy again,” and the dilemma of letting the impression stand or to share the confounding truth…
We had one glorious day. We are still embroiled in battling for health.
Today, I am sitting with a dexterous mind, no one stable perspective. Today, I could write an inspirational story on the gratitude I have for all the many blessings, people and generosity we have been recipients of, the courage and resilience Imani and Ari have demonstrated daily, the phoenix rising and falling and rising again.
That is the primary theme I choose for the narrative of our lives. When all is said and done, that is THE STORY…A gracious God who has been with us throughout, often in the form of friends and strangers, unexpected blessings, and resilient and meaningful love.
For a short duration this morning though, I am sitting with the ambiguity, the juxtaposition of disparate pulls, the contradictions, and the agonizing delay of resolution, or even a brief intermission, from this journey of chronic illness.
Today I sit, for a moment or two, with the internal, silent screaming of anger and protest that accompanies the unwillingness to give up or give in…
Today I openly juggle the varying facets of this experience, not selecting out preferred perceptions, complementing emotions and the “right” spin on things. Yes, the “spin,” of one’s chosen perception, when rooted in belief and faith, can make all the difference in the life actually lived. Yet, simultaneously, we can hold more than one experience, one set of thoughts. We exist in conflicting dimensions of reality. If we are truly grappling with the human experience, this is unavoidable. There is depth and meaning in engaging the struggle, the paradox, the tug-of-war between hope and despair. Denying this, refusing to take on the struggle leaves lessons unlearned, doors to one’s soul unopened, dimensions of love unexplored, intimacy with one’s self and others, bonsaied.
At the end of the day, which story will we hold under the light? Which story do we feed and nurture? And when does our “reality” become so selective and narrow it borders on fantasy or even delusion? And at the end of our life, which one will have resulted in the best life lived?
For me the choice is clear, with vigorous intention and, on occasion, wild stubbornness not to give in or give up. I am stubborn. Sometimes others think I am delusional. I think not. Bold as it sounds, I feel I have a grasp on the real and tragic events in my children’s and my life, but I choose to live in hope anyway. I choose not to be pulled under, and to give “darkness” very little space. I know it is there. I know there are tragic events that don’t make the 180 degree turn-around with loose ends all tied up. I know that in this life everything does not have a fairy tale ending. But for me, I will choose to see the gentle gifts of sunlight filtering through leaves and feel joy such perception coupled with awareness can bring. I choose to follow the lilt of piano reverberate through me, the smell of lavender as a marker of rest, the newly emerging sprouts in Ari’s window plantings a promise of new life. I, for one, will do my best to step forward into each moment with anticipation of even “better” being just around the corner.
My goals in life have changed, parried by life’s vicissitudes. I have spent some time, only moments at a time, grieving what isn’t. It is far too frightening to let moments expand beyond minutes, as I can feel waves mounting that promise to over-power my positive resolve and carry me under to the dark abyss of the endless ocean of tears.
That “Parallel Life” that should have been… Holding it in contrast to what is, is lethal to peace and contentment.
My start of the day is meditation, prayer, affirming:
“ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 New International Version (NIV)
“ Awake at dawn with a winged heart and give thanks for another day of loving.” Kahlil Gibran
instilling hope & ensuring each day will offer opportunity for success~
independent of situation, circumstance or outcome in the “physical world.”
My goal now is simple and “small” compared to my “Parallel Life” goal.
I struggle to make peace that I will not do what I set out to do in this life-time,
that my children have had to retool their dreams so many times that we cannot count them…
that dreaming again feels precarious…
that, even in the light of so many miracles,
the BIG MIRACLE of health and all that a healthy body supports,
has not yet been realized.
So, the stark truth:
This illness has robbed from each of us, thus far, from our versions of the full expression of the gifts that God blessed us with,
it has ripped from us, the dreams that required health to manifest,
it has faded the bright anticipation of accomplishment, expansion, giving back, making happen, answering the call of a flourishing life…
Nearly all resources have been directed toward fighting disease, moving toward improved health, stalwartly working, moment-to-moment, to build a foundation upon which to live a life which even remotely approximates the dreams given birth to in health.
Now, my newly adopted goal refined by life’s vicissitudes is to show up and to love the best I can, moment-to-moment. That ensures each day is a successful day. I tolerate the assessment of failure and loss very poorly. When my chosen goals were deferred over and again, then decimated by the inconceivable challenge of the severe and disabling illness of both of my children in the context of single parenthood, I was faced with redefining my meaning in life, of how I would contribute to a better world in my brief lifetime, to resketch the pictures I had of how my life, and the lives of my children would unfold…
Yes, there is more I envision for my children and for me: complete healing- body, mind, spirit, financial, educational, career….so much so that we don’t speak of symptoms, medications, protocols, appointments, pacing oneself, tentative plans or no plans; I see in my mind days of ease and without struggle; a community of meaningful friendships for each of us; holidays with others; vacation days not saved to be spent on hospital stays, care giving and appointments; funds going to something other than medical care; being able to “give back” with abandon; relationships, holidays, hobbies, horses, a house that is our home; Ari and Imani pursuing their dreams, making their way in the world depending upon their bodies to carry them.
What a day that would be!- to not think about one’s body or brain function as the primary consideration for what is to be or not be.
Next to Easter, the most meaningful holiday for me.
Rebirth in spring time, followed by lifting up gratefulness even as we move from fall to winter.
I sit to write today, house quiet with the exception of the fan of the heater and streamed piano from the iPad, both Imani and Ari in bed- 11:40 a.m. and no anticipation of them able to arise for some time.
I celebrate both with hope for the new opportunities ahead, and gratitude for all the blessings thus far. That is real. And equally real, but not given air time in my mind or heart is the screaming agony of thousands of moments, gathered to hours, days, months which I never believed could result in years… now 16 years… of fighting a battle that no human should be faced with…. The chronic and disabling disease of my two children, now adults.
Time keeps moving. We keep taking breath after breath and stepping forward against galing winds cutting our faces, pushing us back, tumbling us down, disorienting us, covering us with freezing snow and, at times, searing coals. And a midst this, we claim God’s promises, sometimes with confidence, sometimes with desperation. Sometimes holding our faith as something as tangible as the chair I am sitting on, other times as ephemeral as a wisp of a breeze that cannot be held or grasped…
“I know the plans for you declares the Lord; plans to prosper and not to harm you, plans to give you a hope and a future.”
Flashes of a darkened room, Imani reeling in pain with no relief to be found. Holding her gently, firmly, eyes locked between us to sear our focus, reciting together: “I know the plans I have for you…” over and over, over and over through cries, choking and tears…. And until today, we do not see or know that “PLAN.”
At the close of his 8th grade year, which was largely spent on a futon in the corner of the classroom, Ari’s final presentation opening line was the Japanese Proverb:
“fall down seven times, get up eight”
Visceral recall of holding Ari’s loss and pain, of his resilience and courage in the face of such setbacks and losses. Of continual starts and stops. Of Loss after Loss. The Big Losses sandwiched between the little losses… Sometimes I cannot catch my breath if I let the “realness” in of what he has faced. My arms ache for want of holding him as a baby again, before the storm began, when life was simple and I could dream any possibility with him as he mapped his future with confidence of thriving.
He keeps standing up, again and again.
I am struck by the mysteries and vicissitudes of life. The road not taken…Working to let go of “what ifs…” as they serve as chains to the binding one to a reality that exists only in one’s mind… continually running a parallel story to what is… keeping one trapped in perpetual grieving and melancholy. Sometimes raw agony.
worldly goals = certain loss.
spiritual goals= daily growth.
I do not exist in just one reality. Life is complicated. At least for me. It is my intention, renewed daily, to step boldly with anticipation of adventure and joy and whatever I need, to face whatever is to come, into this moment and whatever is next.
In closing, how I face each setback~
“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” Viktor Frankl, Man’s Search for Meaning
Imani had an amazing few months in 2015, wherein she was able to volunteer with autistic children, finding a new calling, one which filled her soul. She took adaptive PE, and began to take hold of her “outside the house” life again. This was followed by a decline again, with her back in bed most days, venturing out 2-4 times a month, sometimes only for medical appointments. She had endometrial surgery in October of this year, which we are anticipating good outcomes to be evidenced over the next few months, and offering her days of less pain and other associated symptoms. IV antibiotic treatment was resumed for several months, and she is now back on herbal treatments. Having credited Embryonic Stem Cell (HESC) transplant with saving her life, she has never returned to the level of debilitation she experienced for years prior to this tratement. It is her hope to return for her second transplant as soon as her health supports travel, the prior transplant is paid off, and funds are raised for her to receive the anticipated additional two-three transplants. In the interim, there is a treatment program which she test positively for, that may boost her enough to re-engage in activities of daily living and if possible to travel back to India.
October 11, 2016
Ari experienced 4 years of significantly improving health, he was able to live away from home and to gradually work up to full time school after his three series of HESC transplants. We truly felt there would be no setbacks. However, I am sorry to share that, last fall with the convergence of a severe virus(s), re-exposure to mold, over-work from full time school with slow cognitive processing , and the stress of witnessing his sister’s suffering, created the perfect storm which resulted in a reemergence of Ari’s lyme and co-infections. He was required to take a hiatus from school, restart treatment, and rest. He remains in this state. We are in the process of identifying the most promising treatment plan with the guidance of genetic testing, and a multifaceted healing plan.
2016 Polo for Lyme
Polo for Lyme 2016 (BayAreaLymeFoundation)
Kate continues to be inspired by her private psychotherapy practice, and work full time overseeing a social services department at a local hospital.
2016 Dart for Art LymeLight Foundation
Finances: With the generous 2016 contributions and gifts in memory of Arnold Leong 2016, Individual Donors, LymeLight Foundation, and prior to 2015: Harvest Christian Center Redwood City for providing grants, Yoga of Los Altos, Crossroads Fitness San Mateo and Montgomery High School Santa Rosa class of ‘73 for holding fundraisers, Putnam Volvo for their donation of a new transmission and repairs, Salon Kavi in San Mateo for nurture, and numerous individual donors of funds, services, supplies and air miles Imani’s and Ari’s first life-saving human embryonic transplants in 2012 and 2013 were possible. Ari’s transplants have been completely paid for!
Annually, through Kate’s two jobs, Ari and Imani have been able to continue to receive medical treatment not covered by insurance. This amounts to approximately $40,000 to $50,000 annual out of pocket. Additional treatments (Imani and Ari to receive an uncovered protocol in 2017) and the uncovered part of Imani’s surgery are over and above this and paid for by the generous contributions of others.
Owed to India for Imani’s 2012 HESC transplant: $30,000.Past medical debt: $15, 000. Ari and Imani’s 2017 additional medical protocol: $70,000. Imani’s second HESC transplant to be scheduled as soon as possible: $50,000.